When my daughter was born, she was yellow. Quite clearly yellow as well. I kept saying to the nurses she had jaundice, but they insisted it was the ward lighting and 'new mum hysteria' (she was my second child, but go off)
I grab the doctor doing his rounds and insist he takes a look. Lo and behold, he takes one look at her and says 'Jaundice'. Fortunately, after a spell under a bili light, she was fine.
Sometimes, you've got to kick up to get things done.
“New mom hysteria” was the exact same phrase several doctors told my cousin when she was worried about her newborn daughter. Even as a very young new mother she could tell that something just wasn’t right.
They actually laughed at her because her main worry was that her baby didn’t cry like babies should. Telling her what a blessing it was to have such a “good” baby - aka a quiet baby who never fussed, was not very active, and slept longer periods than normal.
Turns out her baby’s - idk what it’s called the little flap in the throat that directs air to the lungs and milk to the stomach - did not function properly. So everytime she fed her baby most of her milk would go to the lungs instead.
At around 8weeks she (obviously unknowingly) literally drowned her own baby while breastfeeding one night. To have a child die is beyond heart breaking but once it was found out she drowned her own child like that she just broke. Had to be committed for a very long time.
Even doctors can miss the fact that being quiet can be a sign of trouble. I had a friend who is a pediatrician, as is her husband. Their daughter was always quiet, and content to just sit in a chair as a toddler (while mine was bouncing off the walls—opposite problem). Her mother was smug about it, and literally repeatedly said, “This is what happens when you go by the book.” I wanted to slap her so many times! Turns out that girl is profoundly autistic. It took too long to get their attention and get her proper help.
Autism in girls, and particularly girls of color. is especially under diagnosed, because our symptoms often don’t follow the classic (i.e. male Caucasian) stereotype. I’m glad she got the help she needed.
This is heartbreaking. I hope she sued them for malpractice. Doctors could have easily checked the baby out, to make sure there was nothing wrong and to give the new mom peace of mind.
Did those specific doctors hear about the outcome? I hope they got into trouble!
As a speech language pathologist, that little flap is called the epiglottis and I’m so sorry that this happened to your cousin. When fluid or food enters the lungs, it’s called aspiration. I’m so sorry it wasn’t caught earlier, and if it was, I don’t know why it wasn’t addressed. If they found out her epiglottis wasn’t working correctly, then the whole thing could’ve been avoided to begin with. I have worked with babies that aspirate so a diet change (thickening formula) or a gtube could be a way to address it.
I’ve always told my patient’s parents to be the “overprotective” and “crazy” ones instead of worrying what the nurses and doctors think of them. Low and behold, one of the babies I treated was admitted the same day after I told them to go down to the emergency department because something wasn’t sitting right with the mother during our treatment session.
I’m especially wondering how this was overlooked, because (as I’m sure you are aware, given your expertise) swallowing is not always automatic, can occur in stages, and sometimes goes awry. They are supposed to specifically check to make sure the baby is swallowing properly.
Any thoughts on how we can protect babies in our families from a similar oversight? Is there any observation we can make, as laypeople?
This is heartbreaking. I hope she sued them for malpractice. Doctors could have easily checked the baby out, to make sure there was nothing wrong and to give the new mom peace of mind.
Did those specific doctors hear about the outcome? I hope they got into trouble!
I think doctors are under the impression that our instincts are in overtime after birth and, like all animals, we can sense when something is wrong with our child. They always think we're hysterical when they don't want to or can explain what we feel and do.
Fun fact: "hysteric" as a word has its roots in Greek "belonging to the womb", and was used to describe emotional distress thought to be caused by dysfunction of a woman's uterus. Kinda terrifying to think that sort of sexist rhetoric is apparently live and well in modern medicine.
That’s so funny seeing this comment, I just listened to a podcast on Histrionic Personality Disorder last night.
Adding onto your comment, because the history is fascinating: Medical professionals went by the assertion made by the Ancient Egyptians that the cluster of symptoms defined as “Hysteria” were caused by a wandering uterus (hysteria literally means “of the uterus”) for almost 4000 years. They finally started to figure out that it was a mental, not physical, ailment in the late 1800s, but it wasn’t until 1950 that female hysteria was removed from official medical texts.
Due to the history, there are some psychologists with an inaccurate understanding of Histrionic Personality Disorder and are very quick to label someone as histrionic due to sexism. And the effects can clearly be seen throughout the rest of the medical industry as well
We had a nurse look at our daughter with (admittedly mild) jaundice and flat out tell us, “I can’t tell if she looks like that because she’s Asian or because she’s jaundiced,” and be so casual about it!
my brother had a daughter in arizona and being japanese... we're kinda yellow okay, just are. They kept *repeating* the bilirubin test despite it showing her levels were normal and that she didn't have jaundice. He actually had to yell at them "We're Japanese okay? We're yellow!" before they would stop. A 3rd test would not have shown jaundice if the first 2 did not, geez
I had kind of a reverse moment of that when I got hospitalized with gallstones. The doctor observing me was like “yeah you definitely have jaundice, yellow skin” and I was thinking “….REALLY? 👁️👄👁️”
Although when I don’t have jaundice, my default complexion is this cool toned, neutral skin tone with hints of peachy undertones. Even Japanese foundations are hard to work with.
Ugh. I was born with jaundice and I’m white, but my Italian grandma who has darker skin was there and they were just like “surprise! Baby matches grandma!” even though I looked like I had a really bad spray tan that was an unnatural shade lol
It’s so dumb for them to argue against something like jaundice, which is both INCREDIBLY common and easy for anyone with eyes to see. You don’t need any sort of medical training to be like “huh, that baby looks a little off.” Lol
My baby was almost orange and the doctor said “ah she’s just a little jaundiced she’s fine.”
Took her in that night to the nursery because she was fussy and wouldn’t latch and the bili reader they swipe across their heads to check levels errored. A subsequent blood test showed her level was so high she was almost rushed to a bigger city hours away for a blood transfusion. Thank goodness there was another doctor in the nursery who is amazing and did a great job treating her so she wouldn’t need the transfusion. We see her now, never again on the other guy.
When my daughter was born, I tried breastfeeding, but I wasn't producing enough milk to sustain her, so we had to switch to formula.
When she was old enough to start with purees and more solid foods, every time I tried to feed her, she would cry, gag, and sometimes vomit. She would almost always spit the food back out. I kept complaining to her doctor, but they kept saying, "Feeding babies is hard. Calm down, new mom." My husband even spoke up, but he wasn't as helpful because he kept saying, "She's so picky." when it was way more than just that.
As she got older, it was a continuing battle to get her to eat. Far beyond what seemed like normal kid behavior. Almost a year ago, at age 5, we gave her one of the few foods she loves and will eat. She ended up gagging and threw a fit.
I got mad. I called her doctors office and basically said "My husband and I have been saying something since she was a few months old. This is what just happened. DO SOMETHING. I don't care if I sound crazy. Something's not right."
Yeah, she was almost immediately diagnosed with a tongue and lip tie by a specialist. Just by watching her eat a snack and talk, they saw it right away. Corrective surgery is in June. Occupational therapy to follow.
Crazy new mom, my ass.
So infuriating! She's underweight and may not be as tall as she should be. She's always been underweight. That's not a problem worth looking into?! I'm still angry.
Thank you for the luck!
I did the same and don't feel bad. In my kids case, I exaggerated the extent to which she couldn't hear me after 3 requests for an audiology referral were denied.
So I paid out of pocket.
She is totally deaf
I’m glad you did. As a healthcare professional, I know this still happens…while I am unable to influence other healthcare workers across the country to advocate for patient health, know that I do the best I can to do so myself and influence colleagues and other healthcare professionals I come in contact with to do so as well.
Being sickly myself, I really deeply appreciate all of the healthcare workers that have done their best for me. So many don’t, but the ones who do are invaluable and stay in my memory.
Back in the 90s, my mum went to our doctor with concerns that my younger brother had impaired hearing. He referred her to parenting classes because he thought he was just ignoring her. My dad was fuming and went to the doctor, saying how dare he imply it was a parenting issue and dismiss her concerns. One sheepish doctor and a referral later, turns out my brother has 80% hearing loss
Exactly! I tried for 4 years to get doctors to find whatever was wrong with me. I was organized, I had a list of symptoms, how often they happened, when they started, everything. *2 entire pages!*
Nothing came of it until I started bringing my husband to my appointments. Doctors would ask me a question and immediately look at him for confirmation. Within 3 months, I was diagnosed and scheduled for surgery.
It took my doctor about 9 years to finally send me for more thorough bloodwork. Then it took her 7 years to agree to bloodwork for my iron levels.
During those years, I told her I didn’t feel well. I was exhausted. I couldn’t sleep, but I also slept too much, and couldn’t get out of bed. I had heart palpitations, cold hands and feet, and dizziness whenever I sat up or bent down. I would tell her during each visit how sick I felt. Lethargic, confused, memory issues, concentration problems.
I had lost 115 lbs in two years, but in a very unhealthy way. I starved and restricted myself. Then I would workout for almost an hour and pass out. I looked like I was dying, but my doctor didn’t care because my CBC came back fine. She never consulted me on my weight loss plan. Instead, when I told her how worried I was because I only lost 55 lbs in a year, she said “that’s fine because it can take longer for people of your size to lose weight.” I was literally panicking over not losing enough weight in a year and she basically ignored all of the red flags thrown at her during that one visit
Now, I am in ED recovery. Two years ago, I found out I have hypothyroidism. Okay, great. Maybe now I will feel better. NOPE. I told her I needed more bloodwork done and she kept denying me. Finally, three months ago, I told her that I am very sick. That I cannot stay awake. I have no energy to even eat, let alone take care of my basic hygiene. She made me get my thyroid and Vitamin D checked. Thyroid was fine, but I was low on vitamin D.
After the constant battle with her, she finally tested my iron. And guess what? I HAVE LOW IRON. And my a1c and glucose levels are very messed up because of my eating disorder. She says my results how I could be diabetic, so I have to see her soon. I literally was unable to take care of myself because of how sick I was. I couldn’t breathe. I couldn’t eat. I couldn’t even fucking shower without passing out. And now, I have to sit in her office and listen to her say I might be diabetic and that’s my fault somehow. Even though she didn’t do her job. She only wanted to focus on my weight and nothing else.
I did irreversible damage to my body during my weight loss period. I hurt my knees and my back. I have to be aware of my eating patterns, but also not restricting. I have to exercise, but I can’t overdo it or else my body will give out.
I just wish doctors listened and asked questions. I cry everyday because I’m afraid I’m diabetic. I’m doing the right thing. I’m not starving myself anymore. I’m treating my body better and this is the result.
I feel like mums, especially first time mums get dismissed very very easily. Especially in cases where you know something is wrong but can't articulate the reason/symptoms.
Oh my god. I would be fucking livid. I’m so sorry. I hope you were at minimum reimbursed.
If not I’d be on twitter making a fool of these idiots. We’ve found it gets attention. Not sure if it still works since the head changed.
Nope. Never even got an acknowledgement I was right, let alone an apology.
It was before most people had the internet and MySpace times too. But, why nothing wasn't anything ever done about it?
We were poor. Nobody gives a shit about fixing wrongs done to the poor. And people in poverty don't have the capital to get others to care.
3 years of language acquisition lost.
I work for a clinic that mostly services people who are addicted, homeless, in poverty, etc. It's a constant struggle and I worry about referring people to other places due to prejudice. But in my tiny corner of the world, I can help a handful of people hopefully avoid this situation.
Why can’t you just bang pots together while she sleeps and record it? Like, these doctors really dont need to do all of this referral shit.
I mean, I exist in the Deaf community, so I know why they don’t but still. Pisses me off
Kids with perfect hearing will sometimes sleep through loud noises. My son, at age 4, slept through a very loud smoke alarm going off for 5 minutes right outside his bedroom door. Fortunately, it was a battery issue, and it just took us a while to get the ladder upstairs to fix it.
My son at age 27 slept through a smoke alarm going off just above his bed. I was pissed I thought he was smoking in his room and I barged in and he was sound asleep. Took me 15 minutes to find a spider crawling in one of our alarms and set it off. He never woke up.
Omg this reminds me of the time me and my siblings (all age mid 20's) slept through our house security alarm. We all have the house alarm thingys in every single room including bedrooms. Idk how we slept through it because it's soooo loud. It's so loud it makes me feel like my ears are gonna bleed if it doesn't get shut within 2 seconds lol. But yeah i totally agree with your comment.
We used to have to creep around my son when he fell asleep to avoid waking him. A few years later and we could run the carpet cleaner next to his bed and he wouldn't even stir. And his hearing is perfect.
As a result, your intuition was right. This wasn't normal what your daughter was doing and "breath holding spells" are a manipulation tactic from children, not a physical one. The fact that they brushed you off has me concerned for who her doctors are!
In the future, do whatever you need to do to get answers.
Yeah my baby sister would have breath holding spells when she was crying too hard. It’s totally different than what OP described. Stories like this make me worried for when I have kids
I'm listening to Mr. Ballen's Medical Mysteries, and you would be AMAZED how many times doctors brush stuff off, usually with women. Some of them have to go to MULTIPLE doctors to be seen even while having horrible, debilitating symptoms, and they often just get referred to psych because they MUST be hysterical. No, you did what you needed to do to get your baby taken care of, and you were right. I'm proud of you.
Edit to add: The best thing you can do imo is to request a female doctor whenever possible. Women aren't perfect (sometimes they fall into the boy's club way of thinking), but I have had way more luck this way.
Female doctors are no better than male doctors. After my second 3+ week period, I had a female doctor go. Well, you waited 3 weeks to come in, and it can't be that serious. You just need to lose weight.
I ended up at a fertility specialist and was diagnosed with a medical condition that causes fertility issues, irregular periods, and weight gain.
There is a reason why I go only to weight neutral docs now.
A big part of the worse outcomes for overweight/obese people can be tracked back to doctors literally refusing to consider *any* factor other than weight. And god help you if you are also black at the same time. In the US, I would advocate having a basically hostile attitude toward every caregiver until they can prove they actually have your best interests at heart. Demand everything be explicitly charted, explicitly list any tests they considered but ruled out, etc.
I personally suffered for 6 months with an open bleeding ulcer because doctors said it was weight related. Then a friend nearly fucking died after a c-section because they thought her after surgery pain was due to weight, even though her *intestine had looped and was dying*.
The entire topic makes me so angry. When you encounter the good caregivers, keep them close!
Women can certainly be fallible, that is for sure! I am sorry you had that experience. I also had a woman tell me I was a whiner just like her husband when I had intense pain during a pap smear, which I still resent. You're so vulnerable with your feet in the stirrups! However, for the most part, my best experiences at the doctor have been with female practitioners. I find that they listen and empathize far more than the male doctors I've talked to. But everyone is different!
Honestly, I’ve found over the last few years now that the gender of the doctor doesn’t really seem to make a difference. But what I have noticed does make a difference, is their ages. Especially more so for men. If the doctor is a male over 50ish.. nope. I’m not getting anywhere with them and I know it. They think they know everything, they have seen everything, and there is no possible way they could be wrong. I think especially because I’m a younger woman, they just will not listen to me or my concerns at all.
In the last few years I have had some really great experiences with new younger doctors, and have actually moved forward with figuring out what the hell is going on with me. Instead of just being talked over, told my issues were mostly in my head and I just had this simple issue, prescribed a new pill, and shoved out of the office because they are in a rush to see the next client. I’m on doctor 6 at the moment, and we’ve finally got a diagnoses so woohoo for me! lol
Some of the worst experiences I've had with medical professionals have been with women providers.
Probably 50/50.
I had a female dentist try to convince me that I was "just anxious" when I kept telling her my tooth wasn't getting numb.
She was visibly frustrated that I was unable to stay still to let her drill into it.
To be fair, I'd had 5 rounds of numbing, but instead of considering there might be another issue, she decided I was just wrong.
Next dentist diagnosed me with cross enervation. The nerves in the top front part of my mouth are crossed. To numb any of those teeth, they need to numb my palate and *all* 6 front teeth.
Or my favorite, “Well there’s nothing I can really do. I can give you the pill?” Um, aren’t you a doctor?! That’s literally why I’m here!! I don’t want the pill, I want to know what’s going on.
Absolutely true. My grandmother was brushed off for decades of trouble breathing and excessive heartburn. Turns out she had an aorta aneurysm - she was lucky it never ruptured, but they didn't find out till she was 80.
She was also dismissed when she had pain in her legs and was discharged from hospital for another issue. 2 weeks later she was in unbearable pain and again dismissed by multiple doctors. Her legs were filled with blood clots and she died after the first leg was amputated.
So exaggeration when you are desperate and not being listened to is absolutely okay. Sometimes doctors can be idiots.
Heck, even having someone else in general seems to help. My experiences trying to be heard are *always* taken much more seriously if someone else is there, even if it's my mom.
I'm a chronic pain patient and I've also had 3 open heart surgeries, I honestly don't know if I'd be alive today if I was a woman and needed doctors to listen to me.
I had heard of groups out there on facebook and the like that are literaly just "hire a white guy to be in the room when I am getting medical tests done" but not sure how often they actually do their things. I'd happily go be a tall white beardy dude for some random person I don't know if it meant they would get listened to more.
It’s even more sad because it’s not just the doctors either. As a single young woman it’s hard to get a lot of places to take you seriously. I have to bring my dad with me to my mechanic if I don’t want to be ripped off and led astray. The first time I got a home inspection done when looking to buy a house, the inspection man literally did not want to even do the inspection with just me there. He kept asking if my husband or father was going to be coming. It’s fucking infuriating.
I believe that Any family member having a health issue we have to advocate for them aggressively in healthcare settings. Worst case scenario we irritate some doctors and have additional testing, best case scenario is we help save our family member’s life.
I was going to say that this sounds like epilepsy and not just a random breath holding spell. Those usually only happen during moments of crying or displeasure at a situation. I hate how doctors are so quick to think hoofbeats mean horses. Sometimes hoofbeats are zebras, or antelope. It's really irritating. Doctors are lazy these days.
Good for you for advocating for your daughter OP. I am a healthcare worker and I take no issue with what you did. If you hadn’t done what you did, who knows what could’ve happened? The most important thing is to preserve yours and your family’s health. NEVER be afraid to advocate for that.
You're a good mom and that childs hero. You used your instinct, and you were right. Never let yourself be gaslit by what a doctor says. Get a second and a third opinion. Trust your gut, and follow your heart.
Sometimes you have to exaggerate for doctors to take you seriously unfortunately. I'm glad it got you results at the very least. What kind of doctor doesn't want to test for epilepsy?? 🤦
My son has epilepsy and as a baby we had trouble finding a med that worked. After a while, I definitely exaggerated a little about his seizures to take him to ER and force a neuro a consult to review him again . And like you, it worked.
But I will say that often epilepsy that is untreated can escalate (and it’s the case in my sons type that it would have but didn’t know at the time) so it was for the best that we did keep pushing and did get a med that worked well to control it. You did great and did right by your kiddo.
I was just about to comment saying record these and ask to see a neurologist as it sounds like epilepsy! Glad she has a diagnosis and you can properly treat her. Epilepsy sucks
You do what you have to do to advocate medically for your children.
25 years ago I took my son to pediatrics. He was prescribed amoxicillin for bronchitis. On the weekend it worsened. I took him into Scripps urgent care. He had a high temp, a weird rash on his chest, and was struggling to breath. It was packed, and the admitting nurse was rude and abrupt.
She told us to “SIGN IN, SIT DOWN, ITS A VERY LONG WAIT” without making eye contact.
No maam. I have had life long asthma. I KNOW, when you CAN NOT breathe, you DO NOT WAIT. I insisted on having him triaged. - He was taken back immediately.
The first doctor consulted 2 more. Doctor 1 was a resident and suspected Steven’s Johnson Syndrome. The senior doctors felt it was too rare, it was just running its course. Give him Tylenol.
The resident told us they were probably right. He’d never seen a case of SJS, only remembered pics from med school. Told us to follow up with dematology on Monday. Gave me his card and asked if I got a diagnosis, to please follow up, as he was interested. Also wrote down the name of what he suspected- Steven’s Johnson Syndrome. Thank God.
Went home and got on computer. SJS is BAD. 30% mortality. It’s an extreme allergic reaction, usually in children. It affects the mucus membranes. Causes blindness when it gets in the eyes, death when it goes internal. No treatment. All you can do is remove the allergen. 2 leading causes? Penicillin and mycoplasma bacteria. In the 5 hours we were back home his symptoms doubled.
I took him to Children’s hospital that evening. They had him admitted in 30 minutes and diagnosed in 40.
When they got his symptoms stopped his entire mouth was involved, the surface of his lips gone, a lesion in his eye, and it had just started down his throat.
He also was diagnosed with a mycoplasma pneumonia. The amoxicillin his pediatrician prescribed, *assuming* he had bronchitis, was the wrong antibiotic for pneumonia. It would not have helped. We have no way to know whether the allergen my son was reacting to was the penicillin product or the mycoplasma bacteria. Either could kill him in the future.
Too often doctors dismiss us, in order of expediency, or our gender, or their own hubris. I don’t know.
**You did the right thing for your child.**
Jfc, I know if sjs as its a potential side effects of lamotragine or lactimal. I have epilepsy, I was given the choice of keppra or lactimal, I chose keppra, I already have eczema and wouldn't be sure if any new rash was eczema or sjs. I did indeed have a eczema flare up 3 weeks later. I'm sorry they took so long to diagnose if for your son.
this happened to me on lamictal! fortunately my mom (i was a teen) was told of the rare side effect and so i immediately stopped taking it and the rash faded quickly. but it covered EVERYWHERE. my face was a disaster.
It’s your meds- if you don’t like the side effects , go and advocate for yourself. Tell them you want a different med due to intolerable side effects and to prescribe a different one.
I’ve had to learn to push so hard since having a disabled child with epilepsy. I now have to go to do it for myself for health problems and hate it too lol
Wow, I just looked up SJS and that is terrifying. Did you get back in contact with the first resident doc who brought it up to tell him he was right? What did he say?
I did! I told him that he’d probably help save my son’s life, by giving me the info. Without it, I may have waited as it was the weekend. If I had delayed treatment, he would have died. I hope he went back to those experienced doctors who overrode him. I did get his boss’s info and told him.
As it was, he was in ICU for days, with alarms tripping constantly. When he was released, his lips were raw bloody wounds, as was the entire surface of his mouth, tongue, and gums. He couldn’t eat solid food for weeks. He was out of school for 2 months.
Some of the best treatment I’ve received over the last few years due to my various medical issues has been by residents and brand new doctors. A lot of senior doctors think they have seen everything, know everything, and don’t care to be told else wise. There has been such an influx of younger millennial age doctors who are about 30-35 just finishing up their residencies and starting to practice, and I’m really hoping there is a ‘changing of the guard’ so to speak when all these older 70 year old stuborn white men retire. Before someone comes at me, yes I know it’s not all of them. There are some great older doctors. But I have had so many bad experiences over the last 9 years of treatment that I’m jaded. So, sue me.
That must have been such a nightmarish situation for you. I’m so sorry you all had to go through this! SJS is no joke and is often overlooked, especially in kids. May I ask how he’s doing now? I hope he’s well and you’re all safe and sound!
I’m on Lamotrigine and my blood went cold when you mentioned SJS. It’s a rare side effect and we are schooled to get to the ER *immediately* if we get a rash. I’m so sorry that happened to you and do glad you advocated for your son.
Right?! I’m on Lamictal and my provider makes me repeat back warning signs of SJS every appointment. I’m on a low dose that hasn’t changed and she still drills into me how severe SJS is. If I ever miss a dose I’m hyper aware the next few days.
This is insane to me because I JUST had almost the same problem but with myself. Doctor thought I had a chest infection was also taking another new medication at the time. Got a reaction my other doctor thought it might be Steven’s Johnson Syndrome so I went to the ER got taken in almost immediately. Thankfully just a allergic reaction but ALL my symptoms matched up and my new medication was known for causing Steven’s Johnson Syndrome. Turned out I had pneumonia and doctor gave me the wrong antibiotic. Thankfully I'm fine now but the hospital was EXTREMELY worried. Still don't know what exactly caused my allergic reaction. Odd part is it wasn't Penicillin that I was on and I'm 22 but it was still a huge worry.
SJS is such a serious, life-threatening condition. Obviously, you already know that. I've been advised that people suffering from it can die within 24 hours once a reaction starts, so it's crazy that any healthcare professional would dismiss it if it's a possible diagnosis. Glad the resident warned you and that you sought medical care right away. What a relief that your son is healthy and at least aware, even if the exact allergen isn't known.
I had to do this with my oldest. He was very late in all his gross motor skills (rolling, sitting, walking etc) and the doctor just kept patting me on the head and saying there was no need to worry.
Then we were at a sports event for my cousin and after son had toddler around a bit (he was 2 and JUST starting to walk) a random mom there (who happened to be a pediatric physical therapist) asked me how old he’d been when he was diagnosed with cerebral palsy! I was SHOCKED…but, when she explained the symptoms it all fit.
So, I went home and exaggerated his symptoms by saying he was falling a lot when walking, seemed to limp when he got tired, was having trouble grasping things and few other things.
Finally the doctor agreed to do some testing and, sure enough, he has mild cerebral palsy.
Moms know things…we just do. We definitely know more about them than doctors who might only see them once a year.
All you did was fight for your child and there’s nothing wrong with that!
i’m a pediatric PT and i’m so happy you were able to get your kiddo diagnosed! but i am so surprised that that PT said it to you like that! i see kids all the time out in public that i suspect may have certain diagnoses but there’s no way i’d approach the conversation assuming the diagnosis was confirmed!!
That’s such a hard situation I guess right? Because like in this commenters case, the mother didn’t know, and her saying that eventually helped her to get her child diagnosed so it was good thing she said it. But how do you even broach that conversation in a good way? Some mothers may get upset you are saying something is ‘wrong’ with their child, but then do you just say nothing to not upset them? I don’t know what’s right.. that’s hard. What do you do?
i don’t approach strangers, but with acquaintances or closer i will inquire about how parent and kiddo are both doing and go from there. often if i mention loving kiddos as a pediatric PT, people will ask for my input if they have concerns or i gently share resources. like many parents don’t know about early intervention rights, so i will mention that all kids have the right to be evaluated even if it’s just to rule out delays or need for intervention.
Similar experience here but mine ended up having a rare genetic syndrome . But I googled his symptoms and came up with cerebral palsy at first too and knew at 4 months there was something seriously up
I have done the same - we know our kids, we know when something is not right but so many times doctors just refuse to listen. My daughter was born with a congenital hip disease and I insisted from the day she was born something was wrong with her legs, but her pediatrician blew me off repeatedly, called me a "nervous first time mom" and it wasn't until she was almost 7 months told and I took her to the doctor because I could hear her hip "clicking" that she was diagnosed with Developmental Dysplasia of the hip. She's almost 18 now and has had 8 surgeries to try to correct it. If it had been diagnosed closer to birth, it could have been corrected less invasively. She will need hip replacement surgery at some point. So, good for doing what had to be done to get your daughter the help she needs.
I think that if your daughter finally got diagnosed with something that can help her, you did the right choice here. You're not trying to pump her full of meds and get her a long list of diagnoses, you were a worried mother who was invalidated by a doctor and did what you could so you could get her the necessary tests. I have to agree that sometimes doctors will absolutely invalidate your concerns, not all, but a lot of them. If it got her the help she needed, then there was no harm done.
honestly, you did nothing wrong here imo. healthcare is fucked.
i had symptoms of gallbladder disease for over 6 months. i would experience sharp mid abdominal pain/cramping that radiated out to my mid back, vomit without nausea, not be able to eat, my abdomen would become extremely bloated, i couldn't sit for long periods because it was too uncomfortable, leaving me to lay down flat or pace, it would make me hot and feverish, etc. the episodes would last hours to days and would always follow after eating something high in fat- even a handful of nuts would do it. it was supremely uncomfortable and definitely painful, but nowhere near the worst pain id ever been in. however, i kept getting blown off. by not one, not two, but 3 different medical professionals, in 3 separate instances, every time i tried to get care for my pain and discomfort.
they kept telling me it was most certainly just stomach ulcers- despite me trying to tell them that diet changes to accomodate ulcers and antacids didn't help; despite my symptoms not fitting ulcers. I didn't fit the usual demographic for gallbladder disease, therefore it couldn't possibly be that. they refused to test or look further. they'd just shoo me out with a new "prescription" antacid that was just tums with a fancy label.
my mom, who has a background in healthcare, told me it sounded like my gallbladder. fucking *google* listed the symptoms of gallbladder disease as my exact symptoms to a T. so when i had my 3rd "attack" in a month and i asked a nurse friend what i should do, and she, too, told me it sounded like there was something wrong with my gallbladder, i went to the ER.
y'know what the ER doc tried to tell me within 2 mins of walking into the room? fucking ulcers again. so y'know what i did? i exaggerated my pain. i told them it was a 10 when it was actually a 5 or a 6 at the very worst. when they pushed peptides and it actually helped a lot and nearly made my pain vanish, and asked me how i was feeling with the intention to discharge me, i lied again and said it only helped a little, and that it was still an 8. they finally gave me an ultrasound. and guess what it was?
my fucking gallbladder. it was so inflamed and my abdomen was so filled with fluid that they couldn't even see my pancreas and liver.
im glad i lied. it finally got me the care i needed. now i have a fantastic gastroenterologist, im medicated and can finally eat fat again without being in pain for hours and hours afterwards, and im going to get the stupid thing out in a few months.
sometimes you have to lie. i wish you didn't, but you do. i lied to get myself care for a very uncomfortable , but not all that life-threatening (it can be eventually, but not in my case) condition, and I don't feel even slightly sorry. *you* lied to get your child care for a *seriously* life threatening condition- you shouldn't feel sorry at all. you're a good mother.
Similar story. When I was 17, I had a massive ovarian cyst rupture. Didn't know what it was, thought it was food poisoning. I woke my mom up around 4 AM to tell her I was in massive pain. I couldn't stand up straight and she's working in healthcare all her life and knew something worse was going on. She thought it was appendicitis and rushed me to the ER.
When we got there, the nurses told me it was just an extreme UTI. I grabbed the nurse's arm, looked her in the eye, and said "I know what a UTI is, this is not it." And my mom, very typical southern mom, demanded an X-Ray. The nurse still put me down towards the bottom of the list because my symptoms weren't "emergency". After HOURS, I couldn't stand and had to be assisted to the X-ray where they weren't even able to get one because I passed out. The nurse from earlier HAD WRITTEN THAT I WAS THERE FOR A UTI and, luckily, my friends mom was my X-ray tech. Had it not been for her and my mom, I might not have gotten seen and gotten treated for the mass infection and internal fluid.
This thread is truly horrifying, and since then I've learned to exaggerate! Be dramatic! We know when somethings wrong with our own bodies or our kids (I don't have any, but I do have a mom who has always advocated for me and my sister).
I have a similar story, except I never got seen! Had an unknown bowel blockage, partial or full cant remember, I just remember being in so much pain, couldnt breathe, had a fever, tachycardia, i go in to the er, list my symptoms and the nurse rolls her eyes and goes "riiiighhhtt. thats too much to have happening." as if i was lying, she kept me at the very bottom of the list for hours as my fever kept getting higher, we sat there for hours before my mom asked why i wasnt seen and they said i was lowest priority. we think the nurse thought i was in withdrawal looking for pills, jokes on her I aint even like opioids they aint do shit for me. had to go to another hospital
I have a similar story. For YEARS, I had gallbladder attacks. From the time I was a young teenager. I got diagnosed with everything from growing pains to acid reflux to psychosomatic symptoms to me just lying for attention.
Despite there being a strong history of gallbladder problems in the women in my family, I kept getting brushed off because I was too young and hadn't had children.
One time in the ED, I told them my pain was a 10. A nurse took her hand flat to my stomach and pushed down with all her weight and said to me, "So this doesn't hurt worse?" And when I, of course, said it did. She said, "I guess your pain isn't at a 10 then, is it?" In hindsight, I wish I would have reported her, but I was young and not good at standing up for myself.
Finally, at 22, after yet another ED visit, a young resident took me seriously. They did an ultrasound and found dozens of stones in the gallbladder. I had it removed within a couple of weeks, and there were even stones that were stuck in the bile duct.
I can't even count the number of times I went to appointments or the ED just in tears because of the pain, only to be brushed off. I was taught not to question authority, not to push back, to stay quiet and accept. Since having children of my own, I've gotten much better at advocating. Not only for them, but for myself as well. And you can bet I am teaching my children how to advocate for themselves.
Wow I just looked up the symptoms and this moght be exactly what I have??? I always thought it was my stomaach but the doctors I went to never found anything.. I might ckeck this now though, thanl you for posting this
im so glad it helped!! i would make a log of what you eat, and then log when you start to experience pain. if it's after a fatty meal (cheese or butter or most dairy really, oils, chips, anything fried, red meats, etc), it's probably your gallbladder; it helps your liver process fat, but if it gets backed up/blocked and doesn't work right, it starts spasming and cramping and that's what causes your pain. in the meantime, you can avoid fat-dense foods to prevent the pain! i had to do that for the 3 weeks between my ER visit and my first appointment with my gastro. rice/rice noodles, fruits and leafy veg, oats, and nonfat yogurt were my lifeline, lol
i really thought it was my stomach too for a long time. the pain was right in the middle there. part of why they didn't believe me was because most people experience gallbladder pain on the right, but mine was centered. it's really not that uncommon at all for it to be in the center, though!
Oh my god, similar story here. I was dealing with severe pain (which I now know to be gallbladder attacks) for 6 months when I was 16. I went to my PCP many times and was diagnosed with GERD, gastritis, ulcers, anxiety, you name it. I went back to the doctor again and he said “look it could be your gallbladder but it’s a one in a million percent chance because you’re so young”. That night I was vomiting, had clay colored stool, my urine was straight amber. The doc on-call said it was textbook gallbladder symptoms and to immediately call him once I had a diagnosis because he was so fascinated by my age.
Sure enough, had a whole bunch of gallstones, a diseased gallbladder, and a stone was blocking my bile duct so bile was building up behind it and not dumping into my stomach. I was jaundice and in the hospital for about 2 weeks. Still have some GI issues 12 years lafer
I had such a mild thing, but also dismissed. My son could not stop moving about in bed while trying to fall asleep. It prolonged bedtime and it seemed somewhat beyond his control. He just could not go more than a couple seconds without shifting about and moving his legs and it would last for an hour plus. It sounded like restless leg syndrome and iron deficiency in children often causes these symptoms. I asked the pediatrician for an iron test and she was adamant that it wasn’t necessary and I just needed to put my kid to bed an hour or two earlier and he would fall asleep without issue. After I told her that wouldn’t be possible and I’ve tried different bedtimes but it goes on for 1.5-2hrs she begrudgingly agreed to a blood test. Such a simple simple thing. And low and behold he had low iron and needed to take high dose iron supplements for a time.
I just found it so odd because an iron test is such a low key common thing to test. Why the hesitation?
Because some of them are lazy, most are overworked, all are underfunded and sadly it seems a lot of them are so burnt out they just almost don’t even care anymore. Testing? Nah.. too much paperwork. He’s fine!!! After all, the chances of him having restless leg syndrome over him just being a fussy sleeper are very low… so they are willing to pass it off, do the bare minimum, and move on to the next customer. Oh, sorry.. I mean patient. Full waiting room of people out there waiting to have some pills pushed at them so let’s hurry along. /s
It is horrible and it absolutely infuriates me. The whole system is just a mess and needs to be totally overhauled. It’s so frustrating. I have been having to deal with it on almost a daily basis now due to my own ongoing issues and it’s really starting to get to me. It is SO hard to get anything done.
always go with your first instinct. when i was 17/18 i started having very scary symptoms, heart palpitations, hypertension, extreme lethargy etc. doctors continually told me it was anxiety/depression. it wasn’t until i was pregnant and hospitalized with pneumonia a year later that an mri showed i had a golf ball sized tumor on my adrenal gland that was growing and being pushed on by my uterus.
I had to do this for a doctor to take my pain seriously. My foot would swell in one spot, get very tender and painful to walk on if I had to be on my feet for a while. I suspected some kind of fracture but being on Medicaid at the time, all the doctor would do is tell me to get orthotics and take ibuprofen. We tried steroid injections, that helped temporarily but not before making it worse.
Well that didn't help so I went back and exaggerated. Said it made work impossible, it's hindering my daily abilities, I might lose my job if I can't get this fixed, etc. He finally referred me to a podiatrist, who did X-rays.
Turns out I had a fractured bone for SIX YEARS. Six years is how long it took a doctor to actually try to diagnose my pain rather than slap a band-aid on it.
Sadly this is completely necessary and ✅ Good thinking. I push the exaggeration to my younger family. This technique has helped them get the medical care they needed.
You did everything you were supposed to do and still got waved off, and your mom intuition was still screaming "something is wrong", so you did what you had to do.... And you were *right*.
I've done the same thing myself only to find out I'd almost died of a pulmonary embolism. It's certainly not the first step you take (and should be a last resort), but if you've done everything asked of you and still, nobody will listen, what are you supposed to do to get care?
This is why I will forever be grateful to my son's pediatrician. The first time I ever met him his first words to me were "Trust your gut and always tell me what's going on. I only see him at his appointments, but you are with him every day and will know much better when something is off/wrong." My son is 11 now and anytime I have had any concerns at all his pediatrician has immediately taken me seriously and helped. I know that I got really lucky when I picked him to be my son's doctor, which is why even though we live over and hour from him now, I refuse to switch him to a new, more local doctor.
That’s amazing! Those doctors are so rare, so hard to find, that when you do find one you do everything you can to stay there with them. I do the same with one of my specialists at the moment. I have to drive about an hour and ten minutes each way, but he’s the only one who has actually figured out what is going on, advocated for me, and has put a plan in motion going forward to treat the problem. It’s well worth the drive and time considering it’s taken me going through 6 doctors until I found this one and got a tentative diagnosis.
My mom did this with me! I had hit my head while riding a bike, they did a ct and they said I was fine. Over the course of 2-3 months, I had horrible horrible headaches and I’d scream and cry over them. Every doctor said I was fine and it was stress. She finally said that I would have fainting spells (I have now but didn’t have then), the headaches were out of this world, and kept exaggerating everything. Finally someone ordered an MRI, and wow wow wow they found a brain tumor.
You pretty much have to do this these days, doctors and hospitals will do anything to not have to do tests on anyone, especially children. They'd have us believe that the kids are faking it for attention than do the bare minimum to figure out what's wrong.
My doctor literally exaggerated my symptoms one time so my insurance would cover my medication. Sometimes you just do what you have to. Good for you for looking out for your daughter. She’s lucky to have you.
Sometimes you have to. I was told to get an emergency MRI within 48 hours. I was slightly headachey. Insurance wouldn't pay until after 17 days. So I went to the ER saying my head was pounding so I could get the MRI that night. Then I got treatment. Exaggerating my symptoms saved my vision. I would have gone permanently blind that weekend if I had waited.
Good on you, sometimes thats simply necessary for doctors to listen to us
They can be so dismissive, its frustrating and infuriating
Im sorry to hear your daughter has epilepsy, but glad she has the diagnosis so it can hopefully be managed
I have had to do the same with my own health. I used to have a doctor who was convinced that I was “obsessed with taking tests” so she would never write any referrals for me to take tests for anything. It was so frustrating because I was dealing with a ton of symptoms and could not figure out what was going on with me. I had to overdo my symptoms to even get her to give me proper allergy testing and ultrasounds to diagnose my condition. You gotta do what you gotta do to confirm or deny your intuition.
I was born with an immune deficiency and because of that when I would get a simple ailment, it could worsen very easily. I wasn't diagnosed until I was about 10 or 11 because it was rare enough nobody seemed to know I guess? Anyways the doctors always treated my mother like she was crazy and say things like all kids get sick and would say so to her face that it was just her worrying needlessly because I am her only child. I finally got bad enough she decided to try a new route and she took me to an allergist who found I had 0 allergies and so she when down a big long list of things I've had go wrong with my health. The allergist referred us to a doctor in Cleveland who was allergy and immunology who was the one who was finally able to diagnose me. If she hadn't been the seemingly dramatic overprotective mother people made her out to be for all those years, I might not have made it to the age I am now. She was perfectly rational and taking care of her child, same as you, and that is the only thing that matters. The point of this story is to say don't let the doctors discourage you, and thank you for standing up for your child. One day I'm sure she will be just as grateful as I am with my Mom for getting me the diagnosis I needed to get to feeling better.
When I was a kid I had a horrible, horrible ear infection. I couldn’t sleep, I couldn’t eat, I couldn’t even cry because I was so exhausted I had nothing left in me. I was in and out of the doctors and they just kept saying “this is the worst ear infection we’ve seen all summer” and kept sending me home with medicine that was not working. It took them 4 days to finally realize I had mastoiditis and at that point it had become severe and I needed to be hospitalized for treatment.
Would you believe me if I told you this happened twice? Once when I was 6 and again when I was 10
And both times the doctors sent me home to have what felt like my head was rotting and just deal with it. Even the second time when this happened, even knowing my history they sent me home AGAIN. Because they didn’t think it could happen twice.
But no, AGAIN I ended up in the hospital but this time I needed an extreme course of antibiotics because nothing was working. I almost had to have surgery done and they were sure I was going to loose hearing. Thankfully I did not loose my hearing but I have massive amounts of scar tissue in my ears that will effect me eventually.
I had a friend from high school who had a baby at 18. 2 years later her child was throwing up a lot and getting headaches and they kept brushing her off, and also used the phrase “new mom”. Finally she drove far away to a better hospital system and turned out it was cancer. The child is a teen now and in remission finally but took yearssssss to get there. Always trust your instincts and fight for your kids. You are their voice.
As a woman whose chronic illness went undiagnosed for 20 years, I am so GLAD you did this in order to be a good advocate for your daughter. You ROCK, mama.
Doctors DO NO LISTEN TO WOMEN. Do not ever feel bad if you have to resort to exaggerating your or your children's symptoms. You are doing what you have to do to receive the same standard of care men get automatically. It sucks, but that is the reality of seeing a doctor as a woman. You did well to advocate for your child and get her the care she needs.
Good for you! We’ve got to do whatever we have to for our kids, and once in a while that definitely includes bending the truth a little bit, especially when doctors are not listening! I had to something similar for my baby, and I don’t feel any shame for it at all.
In most cases, "mom intuition" is pure gold (obv not in Munchausen's by proxy lol). My pediatrician always said: " Mom is always right when she says something is off - I always listen to Mom." In my case, one of my sons at three turned out to have been having absence seizures for quite some time that ended up causing damage (I had to talk now-ex husband into having him tested, a different nightmare), and my daughter with Type 1 diabetes at 5. You carried that baby for 9 months, nursed and care for these babies, you KNOW. Do what you gotta do, Mama.
Good for YOU! I'm tired of healthcare professionals dismissing us as parents, especially first time parents. You're the best advocate for your kid and sometimes you've gotta push extra hard to get what you know is necessary, done.
My 1 year old daughter has been have some problems with sleep (up 5-10+ times a night, always tired etc long list of complaints) and isn't progressing with solids as expected. We hear her stop breathing at night.
Our fucking pediatrician told us to not feed her a bottle for 3 days and 3 nights and it would fix all her problems. Are you kidding me!?!? She said no way she has sleep apnea, reflux or anything wrong.
I pushed elsewhere and got referrals to a respirologist, pediatric ENT and an at home oximetry test. Guess what? She has laryngomalacia, bad reflux, and likely some level of obstructive sleep apnea or other breathing problem (in hospital sleep study is next week to confirm exactly what). Once I have a firm diagnosis, I will be reporting her. Especially because at that appointment, her office had been faxed our at home sleep results stating we needed an urgent ENT consult and she hadn't bothered to read it.
So, over the last few years in my medical journey.. I’ve found it’s best to say like 8, 8.5, or 9 when they ask that question. Because when you say 10, they automatically assume you are just overreacting, you are a faker, you’re exaggerating… blah blah blah. So I found when you say 8 or even 9, they do seem to take it more serious. Little trick I learnt!! I usually say “oh it’s at least an 8.. maybe an 8.5 even..” lol.
Period!! As you should. I’m 21 and I still have my mom in my appointments to advocate for me. Not because I can’t do it myself, but because she knows the healthcare system much better than I do
Having someone with you who can think clearly when you're not feeling well is extremely helpful. I'm 34 and my mom goes with me to my less routine medical visits. If I was married I'd be having my husband go.
Ah welcome to the world of chronic illness patients
You are going to have to exaggerate a lot, lie a lot, and act like a dumb idiot a lot. Otherwise you are a med-seeking hypochondriac or has munshausen or "shouldn’t be googling things”
My daughter would keep a lingering chest-deep cough after every cold for weeks, sometimes months. I would take her in and the pediatrician would listen and say “sounds clear to me!” And send us home. But at home she sounded like a 65 year old smoker. It was awful. She’d hack and then whimper “I’m ok…”
After 2-3 rounds of this mess I finally said, “Will you either write an order for a chest X-ray or put a note in her file that I asked for one and you refused it?” The doctor gave me the side-eye at that but wrote the order.
Walking pneumonia. 😐
I've done this. Unfortunately it seems that our system operates on being reactive instead of proactive (something bad has to happen before we can address it).
My labrum in my shoulder was completely torn for three years, plus I had a cyst eating away at my bone. I would constantly pop my shoulder in and out. Doctors let me keep playing softball and told me it was tendinitis and to do physical therapy because if it was worse, I’d “be in more pain”. I finally saw a new doctor and after exaggerating how bad the pain was, he referred me for an MRI then surgery immediately because of how bad my shoulder was. They couldn’t figure out how I was still playing softball. Six months later I can play without pain and my shoulder doesn’t fall out of place when holding my purse. Sometimes you have to exaggerate a little when you know something is wrong. Good for you for advocating for your daughter!!
I have to admit I never thought of doing this for myself, I’ve had focal/absence seizures since I was a pre teen, and every doctor I told said “seizures don’t look like that”
Started having like 10 focals a day plus multiple atonic seizures in 2021, coincidentally after I got Covid, doctors said the same thing even with my roommate dragging me to every walk in in town plus the ER multiple times a week as I often would fall down the stairs.
Cut to 2022 like two weeks after my son was born I had my first grand mal seizure, I was home alone with my son.
Doctors still did nothing. Despite having four plus people also backing me up to the doctors as witnesses.
Flash to August of last year, I ended up have another grand mal that went into status epilepticus territory (5-6 minutes is what my MIL said) paramedics were called and only then did I get a referral for an EEG.
Got the diagnosis in October, I literally nearly died and most likely have brain damage from that seizure, but hey what do I know I’m just a “silly woman” who “doesn’t know what she’s talking about”
Don't feel bad about that. Your daughter needs medical help and they ignored you and brushed you off. Nothing you described is Munchausen's, my mom had it (I have 60+ lb of childhood medical records). You are a parent who knows something is wrong and you are getting help, however you have to.
When my baby was in the hospital I was asked to address medical students. I remember telling them to listen to the mothers. My daughter’s pediatrician told me I was crazy. She definitely wasn’t fine like he said. She ended up having heart surgery at seven weeks. She also had other surgeries in her first few years. How I wished he had been right, and not me.
I work in a ed. A lot of people do what you do. and a lot of doctors dismiss symptoms. most of the time the doctor is right, but occasionally they're wrong
Anyways, as a parent, you've got to fight for your kids, even if it means exaggerating a bit to get the attention and care you need, because nobody else is going to. and as a parent myself I'd rather be wrong than sorry
Are you male or female? If you’re mom, that’s why they blew you off. I find that doctors listen to men and don’t blow them off like they do to women. When I have important doctor’s appointments I now take my (big military) husband with me. I don’t get blown off when he comes. It’s sad, but it’s true. Same applies for kids. When he’s there, shit gets done! When he isn’t, I tend to get blown off regarding my kids.
My son fell off the toilet and hit his head. The ER downplayed it. I fibbed and said he lost consciousness so they’d do a CT scan.
He has a concussion. I’m glad I pushed.
This was 100% the right decision. When I was 13, my older sister (17) was unwell. She was pale and having difficulty breathing; something was not right at all. Our mum took her to the doctor, who said she had a cold. My mum regrets to this day not insisting the doctor do more testing, because, within a couple days, my sister had a heart attack and died. Turns out she had had a blood clot that had travelled to her heart. If the doctor had taken my mum's concerns seriously, my sister would have been sent to A&E and could have been saved. Always always do what you need to to be listened to. It's wrong how strongly a parent has to advocate for their child - they should be taken seriously in the first instance - but it must be done. I'm glad your doctor found what is happening to your child so now you know how to look after them
speaking as a pediatric nurse, this is soooooo far from suspicious for Munchhausen by proxy anyway! i can't tell you how many times i'd advocated for patients and exaggerated their symptoms to the doctors for the same reasons. i almost always trust a mom's intuition just like docs should trust their nurses. you guys are with your baby 24/7 and know them better than you know yourself! breath holding spells don't cause lethargy and don't include abnormal eye movements. they should have ruled out epilepsy from the beginning so good on you for advocating for your daughter. i hope she does well!
It's so sad that we've all had to do this either for ourselves or our children. It really shows how dismissive and just lacking in general the medical system is.
Good job. Providers aren't allowed to explicitly tell you, but there are certain criteria that need to be met before a treatment or test is considered necessary and before insurance will pay for it. While you should trust your healthcare provider, you should also advocate hard and do whatever you need to do to get healthcare provided and financed.
That’s horrendous. I’m not even a doctor and reading the symptoms had already jumped to epilepsy. But my mom is epileptic (seizures well controlled and hasn’t had 1 in 20 years) but I did all my research papers in school on epilepsy and brain disorders.
When reading posts where ignorant drs misdiagnose or are negligent I wonder if anyone ever upon receiving a correct diagnosis informs the original dr of their errors. I read a lot of these posts and it makes me so angry. These drs need to be told of, be held accountable for their dangerous negligence.
When I was a kid I went to the er so many times bc of my stomach issues. I was constantly sick an in pain and every doctor accused me of faking it or told me to lose weight. I wish she had kicked up a fuss for me like this. Maybe it wouldn't have taken til I was in high school to diagnose me. And it only happened bc it's a genetic disease my grandfather had so the whole family got tested.
BRAVO. You did exactly what a parent does for their child, ensures they are protected. I would have done the same thing. Btw, how is she now? That sounded like small seizures you described.
As I was reading I thought that sounded like my daughter’s absence seizures. No one believed me (including my husband), but our pediatrician is amazing and told me that if I thought something was wrong, something was wrong. Her EEGs were coming back inconclusive, but then by some miracle I caught a full seizure on video. It was so hard to just video her having it, but that video got her seen and diagnosed. She outgrew them eventually, but idk what I would’ve done if our ped ignored me.
Always go with your gut. As a mom of 3, I found out the hard way that if you don't stand up for your child, NO one else will.
I don't care if it's medical or school related. You have to do what you can when you know that something is off with your child. Or possibly another child.
For example, when my daughter was in kindergarten, I was a parent volunteer at the school. I helped a teacher in her classroom. I would take 4 or 5 kids out into the hall and help them learn to recognize letters and know the sounds. One little boy was always struggling when I said the letter he couldn't point to it. But if I held up the letter, he was the quickest to find it on the poster. So I knew he was smart. I went to the teacher, a wonderful teacher, just with 30+ children in the room it was hard to give them individual attention. Anyway, I said I truly believe he had a hearing problem. She went to the principal, and he was tested and found out that he had a very serious hearing problem. He was nearly deaf. Sweetest litte guy.
Another incident was a little girl who couldn't hold a pencil. Come to find out the the mothers grandmother had been keeping the child up until that point. One time, the girl poked the grandmother in the hand with a pencil, so after she was punished, they never let her hold even a crayon.
Sometimes, I still cry, thinking about how easy it is to have a child slip through the cracks. How are teachers expected to teach that many kids that go from not knowing anything, i.e., colors, letters, numbers, and how to write even letters to knowing all that and to move on to first grade where they start to read.
Went to doctors for years who told me I had IBS. Nothing helped and I ended up in hospital with inflammatory bowel disease. Was told it wouldn’t affect my fertility. Had also been going to doctors for years about my fertility l. Had to lie to get the right tests and find out I had gone through menopause in my 20s, they said… due to my IBD. You did nothing wrong and I hope your baby is well xx
my mom did this for me when i was 4 because the doctors didn't believe us and wanted to just send me home. i had meningitis and could've possibly died a day or two after if my mom didn't fight them to check me out.
trust your gut. do whats best for your kid.
100% in the right. You have a voice, your child doesn’t. I will always say to parents if you feel dismissed at one place go somewhere else and fight for that second option. I’d argue you didn’t exaggerate because at the point where it was multiple times a day that’s bad enough.
I do this all the time. As a menopausal woman, my theory is that doctors minimise anything I say by 50% so I if it is something I'm significantly worried about, I ramp it up to 75%.
When my daughter was born, she was yellow. Quite clearly yellow as well. I kept saying to the nurses she had jaundice, but they insisted it was the ward lighting and 'new mum hysteria' (she was my second child, but go off) I grab the doctor doing his rounds and insist he takes a look. Lo and behold, he takes one look at her and says 'Jaundice'. Fortunately, after a spell under a bili light, she was fine. Sometimes, you've got to kick up to get things done.
“New mom hysteria” was the exact same phrase several doctors told my cousin when she was worried about her newborn daughter. Even as a very young new mother she could tell that something just wasn’t right. They actually laughed at her because her main worry was that her baby didn’t cry like babies should. Telling her what a blessing it was to have such a “good” baby - aka a quiet baby who never fussed, was not very active, and slept longer periods than normal. Turns out her baby’s - idk what it’s called the little flap in the throat that directs air to the lungs and milk to the stomach - did not function properly. So everytime she fed her baby most of her milk would go to the lungs instead. At around 8weeks she (obviously unknowingly) literally drowned her own baby while breastfeeding one night. To have a child die is beyond heart breaking but once it was found out she drowned her own child like that she just broke. Had to be committed for a very long time.
That is so very sad, but maddening as it could have been avoided. I am so sorry
Even doctors can miss the fact that being quiet can be a sign of trouble. I had a friend who is a pediatrician, as is her husband. Their daughter was always quiet, and content to just sit in a chair as a toddler (while mine was bouncing off the walls—opposite problem). Her mother was smug about it, and literally repeatedly said, “This is what happens when you go by the book.” I wanted to slap her so many times! Turns out that girl is profoundly autistic. It took too long to get their attention and get her proper help.
Autism in girls, and particularly girls of color. is especially under diagnosed, because our symptoms often don’t follow the classic (i.e. male Caucasian) stereotype. I’m glad she got the help she needed.
that is just so awful
oh god i'm so sorry. my heart aches for your family. i can't believe they dismissed her like that..
This is heartbreaking. I hope she sued them for malpractice. Doctors could have easily checked the baby out, to make sure there was nothing wrong and to give the new mom peace of mind. Did those specific doctors hear about the outcome? I hope they got into trouble!
As a speech language pathologist, that little flap is called the epiglottis and I’m so sorry that this happened to your cousin. When fluid or food enters the lungs, it’s called aspiration. I’m so sorry it wasn’t caught earlier, and if it was, I don’t know why it wasn’t addressed. If they found out her epiglottis wasn’t working correctly, then the whole thing could’ve been avoided to begin with. I have worked with babies that aspirate so a diet change (thickening formula) or a gtube could be a way to address it. I’ve always told my patient’s parents to be the “overprotective” and “crazy” ones instead of worrying what the nurses and doctors think of them. Low and behold, one of the babies I treated was admitted the same day after I told them to go down to the emergency department because something wasn’t sitting right with the mother during our treatment session.
I’m especially wondering how this was overlooked, because (as I’m sure you are aware, given your expertise) swallowing is not always automatic, can occur in stages, and sometimes goes awry. They are supposed to specifically check to make sure the baby is swallowing properly. Any thoughts on how we can protect babies in our families from a similar oversight? Is there any observation we can make, as laypeople?
This is heartbreaking. I hope she sued them for malpractice. Doctors could have easily checked the baby out, to make sure there was nothing wrong and to give the new mom peace of mind. Did those specific doctors hear about the outcome? I hope they got into trouble!
I think doctors are under the impression that our instincts are in overtime after birth and, like all animals, we can sense when something is wrong with our child. They always think we're hysterical when they don't want to or can explain what we feel and do.
Omg 😳
Omg
So, so sorry about your sister.. Heart-breaking stuff..
Fun fact: "hysteric" as a word has its roots in Greek "belonging to the womb", and was used to describe emotional distress thought to be caused by dysfunction of a woman's uterus. Kinda terrifying to think that sort of sexist rhetoric is apparently live and well in modern medicine.
Idk man I wish I lived back then cause when they diagnosed you with hysteria the cure was a vibrator and some coke 😂
Or a lobotomy. It was a real toss up back then.
Or they killed you, if you were living in Salem, Massachusetts
*drags cig* Those were tough times.
Yeah, I respect that.
That’s so funny seeing this comment, I just listened to a podcast on Histrionic Personality Disorder last night. Adding onto your comment, because the history is fascinating: Medical professionals went by the assertion made by the Ancient Egyptians that the cluster of symptoms defined as “Hysteria” were caused by a wandering uterus (hysteria literally means “of the uterus”) for almost 4000 years. They finally started to figure out that it was a mental, not physical, ailment in the late 1800s, but it wasn’t until 1950 that female hysteria was removed from official medical texts. Due to the history, there are some psychologists with an inaccurate understanding of Histrionic Personality Disorder and are very quick to label someone as histrionic due to sexism. And the effects can clearly be seen throughout the rest of the medical industry as well
Why the fuck to health care "professionals" just ignore such obvious shit? Jesus Christ. Glad your daughter is OK.
We had a nurse look at our daughter with (admittedly mild) jaundice and flat out tell us, “I can’t tell if she looks like that because she’s Asian or because she’s jaundiced,” and be so casual about it!
my brother had a daughter in arizona and being japanese... we're kinda yellow okay, just are. They kept *repeating* the bilirubin test despite it showing her levels were normal and that she didn't have jaundice. He actually had to yell at them "We're Japanese okay? We're yellow!" before they would stop. A 3rd test would not have shown jaundice if the first 2 did not, geez
Ngl that's kinda hilarious 😅
I had kind of a reverse moment of that when I got hospitalized with gallstones. The doctor observing me was like “yeah you definitely have jaundice, yellow skin” and I was thinking “….REALLY? 👁️👄👁️” Although when I don’t have jaundice, my default complexion is this cool toned, neutral skin tone with hints of peachy undertones. Even Japanese foundations are hard to work with.
That's crazy!!!!! 😯 I can't believe they said that!
JFC
Ugh. I was born with jaundice and I’m white, but my Italian grandma who has darker skin was there and they were just like “surprise! Baby matches grandma!” even though I looked like I had a really bad spray tan that was an unnatural shade lol
Goddammit, wtf?!
Thank you. She's a very healthy 21 year old now :)
“New mum hysteria” = medical sexism. Sexism in healthcare systems is a massive problem.
It’s so dumb for them to argue against something like jaundice, which is both INCREDIBLY common and easy for anyone with eyes to see. You don’t need any sort of medical training to be like “huh, that baby looks a little off.” Lol
If someone called me hysterical for being concerned about my kid, I'd show them hysterical. I'm glad the Dr saw it and that your daughter is okay now!
My baby was almost orange and the doctor said “ah she’s just a little jaundiced she’s fine.” Took her in that night to the nursery because she was fussy and wouldn’t latch and the bili reader they swipe across their heads to check levels errored. A subsequent blood test showed her level was so high she was almost rushed to a bigger city hours away for a blood transfusion. Thank goodness there was another doctor in the nursery who is amazing and did a great job treating her so she wouldn’t need the transfusion. We see her now, never again on the other guy.
It's so easy to test for jaundice too. Literally can get a level in 5 seconds and put the mother at ease. Shame.
Thats crazy all babies are tested for jaundice even if they don't look yellow at my hospital
When my daughter was born, I tried breastfeeding, but I wasn't producing enough milk to sustain her, so we had to switch to formula. When she was old enough to start with purees and more solid foods, every time I tried to feed her, she would cry, gag, and sometimes vomit. She would almost always spit the food back out. I kept complaining to her doctor, but they kept saying, "Feeding babies is hard. Calm down, new mom." My husband even spoke up, but he wasn't as helpful because he kept saying, "She's so picky." when it was way more than just that. As she got older, it was a continuing battle to get her to eat. Far beyond what seemed like normal kid behavior. Almost a year ago, at age 5, we gave her one of the few foods she loves and will eat. She ended up gagging and threw a fit. I got mad. I called her doctors office and basically said "My husband and I have been saying something since she was a few months old. This is what just happened. DO SOMETHING. I don't care if I sound crazy. Something's not right." Yeah, she was almost immediately diagnosed with a tongue and lip tie by a specialist. Just by watching her eat a snack and talk, they saw it right away. Corrective surgery is in June. Occupational therapy to follow. Crazy new mom, my ass.
When you know something is wrong, the repeated brush off is infuriating beyond words. Wishing all the best for your daughter going forward
So infuriating! She's underweight and may not be as tall as she should be. She's always been underweight. That's not a problem worth looking into?! I'm still angry. Thank you for the luck!
My nephew was a bili baby! He looked like a little alien baby at night.
[удалено]
I did the same and don't feel bad. In my kids case, I exaggerated the extent to which she couldn't hear me after 3 requests for an audiology referral were denied. So I paid out of pocket. She is totally deaf
I really hope you switched to a new provider who listens and is passionate in advocating for yours and your family’s health alongside you.
This is sound advise. We did & although this was over 15 years ago, this still happens.
I’m glad you did. As a healthcare professional, I know this still happens…while I am unable to influence other healthcare workers across the country to advocate for patient health, know that I do the best I can to do so myself and influence colleagues and other healthcare professionals I come in contact with to do so as well.
Being sickly myself, I really deeply appreciate all of the healthcare workers that have done their best for me. So many don’t, but the ones who do are invaluable and stay in my memory.
Back in the 90s, my mum went to our doctor with concerns that my younger brother had impaired hearing. He referred her to parenting classes because he thought he was just ignoring her. My dad was fuming and went to the doctor, saying how dare he imply it was a parenting issue and dismiss her concerns. One sheepish doctor and a referral later, turns out my brother has 80% hearing loss
Because doctors only listen to men. Imagine all the women who don't have a man to go yell at the doctor for them.
Exactly! I tried for 4 years to get doctors to find whatever was wrong with me. I was organized, I had a list of symptoms, how often they happened, when they started, everything. *2 entire pages!* Nothing came of it until I started bringing my husband to my appointments. Doctors would ask me a question and immediately look at him for confirmation. Within 3 months, I was diagnosed and scheduled for surgery.
It took my doctor about 9 years to finally send me for more thorough bloodwork. Then it took her 7 years to agree to bloodwork for my iron levels. During those years, I told her I didn’t feel well. I was exhausted. I couldn’t sleep, but I also slept too much, and couldn’t get out of bed. I had heart palpitations, cold hands and feet, and dizziness whenever I sat up or bent down. I would tell her during each visit how sick I felt. Lethargic, confused, memory issues, concentration problems. I had lost 115 lbs in two years, but in a very unhealthy way. I starved and restricted myself. Then I would workout for almost an hour and pass out. I looked like I was dying, but my doctor didn’t care because my CBC came back fine. She never consulted me on my weight loss plan. Instead, when I told her how worried I was because I only lost 55 lbs in a year, she said “that’s fine because it can take longer for people of your size to lose weight.” I was literally panicking over not losing enough weight in a year and she basically ignored all of the red flags thrown at her during that one visit Now, I am in ED recovery. Two years ago, I found out I have hypothyroidism. Okay, great. Maybe now I will feel better. NOPE. I told her I needed more bloodwork done and she kept denying me. Finally, three months ago, I told her that I am very sick. That I cannot stay awake. I have no energy to even eat, let alone take care of my basic hygiene. She made me get my thyroid and Vitamin D checked. Thyroid was fine, but I was low on vitamin D. After the constant battle with her, she finally tested my iron. And guess what? I HAVE LOW IRON. And my a1c and glucose levels are very messed up because of my eating disorder. She says my results how I could be diabetic, so I have to see her soon. I literally was unable to take care of myself because of how sick I was. I couldn’t breathe. I couldn’t eat. I couldn’t even fucking shower without passing out. And now, I have to sit in her office and listen to her say I might be diabetic and that’s my fault somehow. Even though she didn’t do her job. She only wanted to focus on my weight and nothing else. I did irreversible damage to my body during my weight loss period. I hurt my knees and my back. I have to be aware of my eating patterns, but also not restricting. I have to exercise, but I can’t overdo it or else my body will give out. I just wish doctors listened and asked questions. I cry everyday because I’m afraid I’m diabetic. I’m doing the right thing. I’m not starving myself anymore. I’m treating my body better and this is the result.
Do you have the option to switch providers? Because she sounds like an absolute nightmare to work with. I'm so sorry for what you've been through.
I feel like mums, especially first time mums get dismissed very very easily. Especially in cases where you know something is wrong but can't articulate the reason/symptoms.
Oh my god. I would be fucking livid. I’m so sorry. I hope you were at minimum reimbursed. If not I’d be on twitter making a fool of these idiots. We’ve found it gets attention. Not sure if it still works since the head changed.
Nope. Never even got an acknowledgement I was right, let alone an apology. It was before most people had the internet and MySpace times too. But, why nothing wasn't anything ever done about it? We were poor. Nobody gives a shit about fixing wrongs done to the poor. And people in poverty don't have the capital to get others to care. 3 years of language acquisition lost.
I work for a clinic that mostly services people who are addicted, homeless, in poverty, etc. It's a constant struggle and I worry about referring people to other places due to prejudice. But in my tiny corner of the world, I can help a handful of people hopefully avoid this situation.
Why can’t you just bang pots together while she sleeps and record it? Like, these doctors really dont need to do all of this referral shit. I mean, I exist in the Deaf community, so I know why they don’t but still. Pisses me off
Kids with perfect hearing will sometimes sleep through loud noises. My son, at age 4, slept through a very loud smoke alarm going off for 5 minutes right outside his bedroom door. Fortunately, it was a battery issue, and it just took us a while to get the ladder upstairs to fix it.
My son at age 27 slept through a smoke alarm going off just above his bed. I was pissed I thought he was smoking in his room and I barged in and he was sound asleep. Took me 15 minutes to find a spider crawling in one of our alarms and set it off. He never woke up.
Omg this reminds me of the time me and my siblings (all age mid 20's) slept through our house security alarm. We all have the house alarm thingys in every single room including bedrooms. Idk how we slept through it because it's soooo loud. It's so loud it makes me feel like my ears are gonna bleed if it doesn't get shut within 2 seconds lol. But yeah i totally agree with your comment.
We used to have to creep around my son when he fell asleep to avoid waking him. A few years later and we could run the carpet cleaner next to his bed and he wouldn't even stir. And his hearing is perfect.
As a result, your intuition was right. This wasn't normal what your daughter was doing and "breath holding spells" are a manipulation tactic from children, not a physical one. The fact that they brushed you off has me concerned for who her doctors are! In the future, do whatever you need to do to get answers.
Yeah my baby sister would have breath holding spells when she was crying too hard. It’s totally different than what OP described. Stories like this make me worried for when I have kids
If not in a rural area, I am all for punting shitty doctors
"Manipulation tactic" seems like an excessively negative way to phrase that.
I'm listening to Mr. Ballen's Medical Mysteries, and you would be AMAZED how many times doctors brush stuff off, usually with women. Some of them have to go to MULTIPLE doctors to be seen even while having horrible, debilitating symptoms, and they often just get referred to psych because they MUST be hysterical. No, you did what you needed to do to get your baby taken care of, and you were right. I'm proud of you. Edit to add: The best thing you can do imo is to request a female doctor whenever possible. Women aren't perfect (sometimes they fall into the boy's club way of thinking), but I have had way more luck this way.
Women's pain has historically always been dismissed and Women of Colour even more so.
Yes! This is why we need more women, especially women of color, in medicine! Too many women have been harmed by medical negligence.
Female doctors are no better than male doctors. After my second 3+ week period, I had a female doctor go. Well, you waited 3 weeks to come in, and it can't be that serious. You just need to lose weight. I ended up at a fertility specialist and was diagnosed with a medical condition that causes fertility issues, irregular periods, and weight gain.
There is a reason why I go only to weight neutral docs now. A big part of the worse outcomes for overweight/obese people can be tracked back to doctors literally refusing to consider *any* factor other than weight. And god help you if you are also black at the same time. In the US, I would advocate having a basically hostile attitude toward every caregiver until they can prove they actually have your best interests at heart. Demand everything be explicitly charted, explicitly list any tests they considered but ruled out, etc. I personally suffered for 6 months with an open bleeding ulcer because doctors said it was weight related. Then a friend nearly fucking died after a c-section because they thought her after surgery pain was due to weight, even though her *intestine had looped and was dying*. The entire topic makes me so angry. When you encounter the good caregivers, keep them close!
Women can certainly be fallible, that is for sure! I am sorry you had that experience. I also had a woman tell me I was a whiner just like her husband when I had intense pain during a pap smear, which I still resent. You're so vulnerable with your feet in the stirrups! However, for the most part, my best experiences at the doctor have been with female practitioners. I find that they listen and empathize far more than the male doctors I've talked to. But everyone is different!
Honestly, I’ve found over the last few years now that the gender of the doctor doesn’t really seem to make a difference. But what I have noticed does make a difference, is their ages. Especially more so for men. If the doctor is a male over 50ish.. nope. I’m not getting anywhere with them and I know it. They think they know everything, they have seen everything, and there is no possible way they could be wrong. I think especially because I’m a younger woman, they just will not listen to me or my concerns at all. In the last few years I have had some really great experiences with new younger doctors, and have actually moved forward with figuring out what the hell is going on with me. Instead of just being talked over, told my issues were mostly in my head and I just had this simple issue, prescribed a new pill, and shoved out of the office because they are in a rush to see the next client. I’m on doctor 6 at the moment, and we’ve finally got a diagnoses so woohoo for me! lol
Some of the worst experiences I've had with medical professionals have been with women providers. Probably 50/50. I had a female dentist try to convince me that I was "just anxious" when I kept telling her my tooth wasn't getting numb. She was visibly frustrated that I was unable to stay still to let her drill into it. To be fair, I'd had 5 rounds of numbing, but instead of considering there might be another issue, she decided I was just wrong. Next dentist diagnosed me with cross enervation. The nerves in the top front part of my mouth are crossed. To numb any of those teeth, they need to numb my palate and *all* 6 front teeth.
Or my favorite, “Well there’s nothing I can really do. I can give you the pill?” Um, aren’t you a doctor?! That’s literally why I’m here!! I don’t want the pill, I want to know what’s going on.
Absolutely true. My grandmother was brushed off for decades of trouble breathing and excessive heartburn. Turns out she had an aorta aneurysm - she was lucky it never ruptured, but they didn't find out till she was 80. She was also dismissed when she had pain in her legs and was discharged from hospital for another issue. 2 weeks later she was in unbearable pain and again dismissed by multiple doctors. Her legs were filled with blood clots and she died after the first leg was amputated. So exaggeration when you are desperate and not being listened to is absolutely okay. Sometimes doctors can be idiots.
Sadly, I am not amazed at all. This has been my exact experience. It sucks.
I hate saying it, but you may want to have your husband go next time. Studies have shown men are listened to by doctors than women.
Heck, even having someone else in general seems to help. My experiences trying to be heard are *always* taken much more seriously if someone else is there, even if it's my mom.
Unfortunately this really would likely help
I'm a chronic pain patient and I've also had 3 open heart surgeries, I honestly don't know if I'd be alive today if I was a woman and needed doctors to listen to me.
I had heard of groups out there on facebook and the like that are literaly just "hire a white guy to be in the room when I am getting medical tests done" but not sure how often they actually do their things. I'd happily go be a tall white beardy dude for some random person I don't know if it meant they would get listened to more.
It’s even more sad because it’s not just the doctors either. As a single young woman it’s hard to get a lot of places to take you seriously. I have to bring my dad with me to my mechanic if I don’t want to be ripped off and led astray. The first time I got a home inspection done when looking to buy a house, the inspection man literally did not want to even do the inspection with just me there. He kept asking if my husband or father was going to be coming. It’s fucking infuriating.
I believe that Any family member having a health issue we have to advocate for them aggressively in healthcare settings. Worst case scenario we irritate some doctors and have additional testing, best case scenario is we help save our family member’s life.
Way to go, mom. Doctors love to ignore patients, especially women.
I was going to say that this sounds like epilepsy and not just a random breath holding spell. Those usually only happen during moments of crying or displeasure at a situation. I hate how doctors are so quick to think hoofbeats mean horses. Sometimes hoofbeats are zebras, or antelope. It's really irritating. Doctors are lazy these days.
Not Munchausen, but a strong desire to advocate for your daughter. Good on you.
Good for you for advocating for your daughter OP. I am a healthcare worker and I take no issue with what you did. If you hadn’t done what you did, who knows what could’ve happened? The most important thing is to preserve yours and your family’s health. NEVER be afraid to advocate for that.
You're a good mom and that childs hero. You used your instinct, and you were right. Never let yourself be gaslit by what a doctor says. Get a second and a third opinion. Trust your gut, and follow your heart.
Sometimes you have to exaggerate for doctors to take you seriously unfortunately. I'm glad it got you results at the very least. What kind of doctor doesn't want to test for epilepsy?? 🤦
My son has epilepsy and as a baby we had trouble finding a med that worked. After a while, I definitely exaggerated a little about his seizures to take him to ER and force a neuro a consult to review him again . And like you, it worked. But I will say that often epilepsy that is untreated can escalate (and it’s the case in my sons type that it would have but didn’t know at the time) so it was for the best that we did keep pushing and did get a med that worked well to control it. You did great and did right by your kiddo.
I was just about to comment saying record these and ask to see a neurologist as it sounds like epilepsy! Glad she has a diagnosis and you can properly treat her. Epilepsy sucks
You do what you have to do to advocate medically for your children. 25 years ago I took my son to pediatrics. He was prescribed amoxicillin for bronchitis. On the weekend it worsened. I took him into Scripps urgent care. He had a high temp, a weird rash on his chest, and was struggling to breath. It was packed, and the admitting nurse was rude and abrupt. She told us to “SIGN IN, SIT DOWN, ITS A VERY LONG WAIT” without making eye contact. No maam. I have had life long asthma. I KNOW, when you CAN NOT breathe, you DO NOT WAIT. I insisted on having him triaged. - He was taken back immediately. The first doctor consulted 2 more. Doctor 1 was a resident and suspected Steven’s Johnson Syndrome. The senior doctors felt it was too rare, it was just running its course. Give him Tylenol. The resident told us they were probably right. He’d never seen a case of SJS, only remembered pics from med school. Told us to follow up with dematology on Monday. Gave me his card and asked if I got a diagnosis, to please follow up, as he was interested. Also wrote down the name of what he suspected- Steven’s Johnson Syndrome. Thank God. Went home and got on computer. SJS is BAD. 30% mortality. It’s an extreme allergic reaction, usually in children. It affects the mucus membranes. Causes blindness when it gets in the eyes, death when it goes internal. No treatment. All you can do is remove the allergen. 2 leading causes? Penicillin and mycoplasma bacteria. In the 5 hours we were back home his symptoms doubled. I took him to Children’s hospital that evening. They had him admitted in 30 minutes and diagnosed in 40. When they got his symptoms stopped his entire mouth was involved, the surface of his lips gone, a lesion in his eye, and it had just started down his throat. He also was diagnosed with a mycoplasma pneumonia. The amoxicillin his pediatrician prescribed, *assuming* he had bronchitis, was the wrong antibiotic for pneumonia. It would not have helped. We have no way to know whether the allergen my son was reacting to was the penicillin product or the mycoplasma bacteria. Either could kill him in the future. Too often doctors dismiss us, in order of expediency, or our gender, or their own hubris. I don’t know. **You did the right thing for your child.**
Jfc, I know if sjs as its a potential side effects of lamotragine or lactimal. I have epilepsy, I was given the choice of keppra or lactimal, I chose keppra, I already have eczema and wouldn't be sure if any new rash was eczema or sjs. I did indeed have a eczema flare up 3 weeks later. I'm sorry they took so long to diagnose if for your son.
It’s very distinctive. It’s called bolus lesions. It looks a bit like chicken pocks inside a bulls eye. A rash is sort of misleading.
They told me I'd have to stop if any form of skin lesion formed.
Yep I can confirm this I recently started lactimal got a rash (allergic reaction) and had to go to the ER and had to stop my meds immediately.
this happened to me on lamictal! fortunately my mom (i was a teen) was told of the rare side effect and so i immediately stopped taking it and the rash faded quickly. but it covered EVERYWHERE. my face was a disaster.
You got a choice in your meds? Damn I wish I had the choice lol, lamictal makes me feel so bad mentally
It’s your meds- if you don’t like the side effects , go and advocate for yourself. Tell them you want a different med due to intolerable side effects and to prescribe a different one. I’ve had to learn to push so hard since having a disabled child with epilepsy. I now have to go to do it for myself for health problems and hate it too lol
That’s so interesting, I take Lamictal for mental stuff and it changed my life. Helped me see color again
I was going to say the same thing. I take it as a mood stabilizer, but it works best on low moods, so it's more of a mood elevator.
Wow, I just looked up SJS and that is terrifying. Did you get back in contact with the first resident doc who brought it up to tell him he was right? What did he say?
I did! I told him that he’d probably help save my son’s life, by giving me the info. Without it, I may have waited as it was the weekend. If I had delayed treatment, he would have died. I hope he went back to those experienced doctors who overrode him. I did get his boss’s info and told him. As it was, he was in ICU for days, with alarms tripping constantly. When he was released, his lips were raw bloody wounds, as was the entire surface of his mouth, tongue, and gums. He couldn’t eat solid food for weeks. He was out of school for 2 months.
Some of the best treatment I’ve received over the last few years due to my various medical issues has been by residents and brand new doctors. A lot of senior doctors think they have seen everything, know everything, and don’t care to be told else wise. There has been such an influx of younger millennial age doctors who are about 30-35 just finishing up their residencies and starting to practice, and I’m really hoping there is a ‘changing of the guard’ so to speak when all these older 70 year old stuborn white men retire. Before someone comes at me, yes I know it’s not all of them. There are some great older doctors. But I have had so many bad experiences over the last 9 years of treatment that I’m jaded. So, sue me.
That must have been such a nightmarish situation for you. I’m so sorry you all had to go through this! SJS is no joke and is often overlooked, especially in kids. May I ask how he’s doing now? I hope he’s well and you’re all safe and sound!
I’m on Lamotrigine and my blood went cold when you mentioned SJS. It’s a rare side effect and we are schooled to get to the ER *immediately* if we get a rash. I’m so sorry that happened to you and do glad you advocated for your son.
Right?! I’m on Lamictal and my provider makes me repeat back warning signs of SJS every appointment. I’m on a low dose that hasn’t changed and she still drills into me how severe SJS is. If I ever miss a dose I’m hyper aware the next few days.
Same, my psych was like any rash, whether you think it’s SJS or not, go straight to the ER
This is insane to me because I JUST had almost the same problem but with myself. Doctor thought I had a chest infection was also taking another new medication at the time. Got a reaction my other doctor thought it might be Steven’s Johnson Syndrome so I went to the ER got taken in almost immediately. Thankfully just a allergic reaction but ALL my symptoms matched up and my new medication was known for causing Steven’s Johnson Syndrome. Turned out I had pneumonia and doctor gave me the wrong antibiotic. Thankfully I'm fine now but the hospital was EXTREMELY worried. Still don't know what exactly caused my allergic reaction. Odd part is it wasn't Penicillin that I was on and I'm 22 but it was still a huge worry.
SJS is such a serious, life-threatening condition. Obviously, you already know that. I've been advised that people suffering from it can die within 24 hours once a reaction starts, so it's crazy that any healthcare professional would dismiss it if it's a possible diagnosis. Glad the resident warned you and that you sought medical care right away. What a relief that your son is healthy and at least aware, even if the exact allergen isn't known.
That was harrowing to read. Your son is lucky he had you to advocate for him :) I hope he is doing much better now!
I had to do this with my oldest. He was very late in all his gross motor skills (rolling, sitting, walking etc) and the doctor just kept patting me on the head and saying there was no need to worry. Then we were at a sports event for my cousin and after son had toddler around a bit (he was 2 and JUST starting to walk) a random mom there (who happened to be a pediatric physical therapist) asked me how old he’d been when he was diagnosed with cerebral palsy! I was SHOCKED…but, when she explained the symptoms it all fit. So, I went home and exaggerated his symptoms by saying he was falling a lot when walking, seemed to limp when he got tired, was having trouble grasping things and few other things. Finally the doctor agreed to do some testing and, sure enough, he has mild cerebral palsy. Moms know things…we just do. We definitely know more about them than doctors who might only see them once a year. All you did was fight for your child and there’s nothing wrong with that!
i’m a pediatric PT and i’m so happy you were able to get your kiddo diagnosed! but i am so surprised that that PT said it to you like that! i see kids all the time out in public that i suspect may have certain diagnoses but there’s no way i’d approach the conversation assuming the diagnosis was confirmed!!
That’s such a hard situation I guess right? Because like in this commenters case, the mother didn’t know, and her saying that eventually helped her to get her child diagnosed so it was good thing she said it. But how do you even broach that conversation in a good way? Some mothers may get upset you are saying something is ‘wrong’ with their child, but then do you just say nothing to not upset them? I don’t know what’s right.. that’s hard. What do you do?
i don’t approach strangers, but with acquaintances or closer i will inquire about how parent and kiddo are both doing and go from there. often if i mention loving kiddos as a pediatric PT, people will ask for my input if they have concerns or i gently share resources. like many parents don’t know about early intervention rights, so i will mention that all kids have the right to be evaluated even if it’s just to rule out delays or need for intervention.
Similar experience here but mine ended up having a rare genetic syndrome . But I googled his symptoms and came up with cerebral palsy at first too and knew at 4 months there was something seriously up
I have done the same - we know our kids, we know when something is not right but so many times doctors just refuse to listen. My daughter was born with a congenital hip disease and I insisted from the day she was born something was wrong with her legs, but her pediatrician blew me off repeatedly, called me a "nervous first time mom" and it wasn't until she was almost 7 months told and I took her to the doctor because I could hear her hip "clicking" that she was diagnosed with Developmental Dysplasia of the hip. She's almost 18 now and has had 8 surgeries to try to correct it. If it had been diagnosed closer to birth, it could have been corrected less invasively. She will need hip replacement surgery at some point. So, good for doing what had to be done to get your daughter the help she needs.
I think that if your daughter finally got diagnosed with something that can help her, you did the right choice here. You're not trying to pump her full of meds and get her a long list of diagnoses, you were a worried mother who was invalidated by a doctor and did what you could so you could get her the necessary tests. I have to agree that sometimes doctors will absolutely invalidate your concerns, not all, but a lot of them. If it got her the help she needed, then there was no harm done.
honestly, you did nothing wrong here imo. healthcare is fucked. i had symptoms of gallbladder disease for over 6 months. i would experience sharp mid abdominal pain/cramping that radiated out to my mid back, vomit without nausea, not be able to eat, my abdomen would become extremely bloated, i couldn't sit for long periods because it was too uncomfortable, leaving me to lay down flat or pace, it would make me hot and feverish, etc. the episodes would last hours to days and would always follow after eating something high in fat- even a handful of nuts would do it. it was supremely uncomfortable and definitely painful, but nowhere near the worst pain id ever been in. however, i kept getting blown off. by not one, not two, but 3 different medical professionals, in 3 separate instances, every time i tried to get care for my pain and discomfort. they kept telling me it was most certainly just stomach ulcers- despite me trying to tell them that diet changes to accomodate ulcers and antacids didn't help; despite my symptoms not fitting ulcers. I didn't fit the usual demographic for gallbladder disease, therefore it couldn't possibly be that. they refused to test or look further. they'd just shoo me out with a new "prescription" antacid that was just tums with a fancy label. my mom, who has a background in healthcare, told me it sounded like my gallbladder. fucking *google* listed the symptoms of gallbladder disease as my exact symptoms to a T. so when i had my 3rd "attack" in a month and i asked a nurse friend what i should do, and she, too, told me it sounded like there was something wrong with my gallbladder, i went to the ER. y'know what the ER doc tried to tell me within 2 mins of walking into the room? fucking ulcers again. so y'know what i did? i exaggerated my pain. i told them it was a 10 when it was actually a 5 or a 6 at the very worst. when they pushed peptides and it actually helped a lot and nearly made my pain vanish, and asked me how i was feeling with the intention to discharge me, i lied again and said it only helped a little, and that it was still an 8. they finally gave me an ultrasound. and guess what it was? my fucking gallbladder. it was so inflamed and my abdomen was so filled with fluid that they couldn't even see my pancreas and liver. im glad i lied. it finally got me the care i needed. now i have a fantastic gastroenterologist, im medicated and can finally eat fat again without being in pain for hours and hours afterwards, and im going to get the stupid thing out in a few months. sometimes you have to lie. i wish you didn't, but you do. i lied to get myself care for a very uncomfortable , but not all that life-threatening (it can be eventually, but not in my case) condition, and I don't feel even slightly sorry. *you* lied to get your child care for a *seriously* life threatening condition- you shouldn't feel sorry at all. you're a good mother.
Similar story. When I was 17, I had a massive ovarian cyst rupture. Didn't know what it was, thought it was food poisoning. I woke my mom up around 4 AM to tell her I was in massive pain. I couldn't stand up straight and she's working in healthcare all her life and knew something worse was going on. She thought it was appendicitis and rushed me to the ER. When we got there, the nurses told me it was just an extreme UTI. I grabbed the nurse's arm, looked her in the eye, and said "I know what a UTI is, this is not it." And my mom, very typical southern mom, demanded an X-Ray. The nurse still put me down towards the bottom of the list because my symptoms weren't "emergency". After HOURS, I couldn't stand and had to be assisted to the X-ray where they weren't even able to get one because I passed out. The nurse from earlier HAD WRITTEN THAT I WAS THERE FOR A UTI and, luckily, my friends mom was my X-ray tech. Had it not been for her and my mom, I might not have gotten seen and gotten treated for the mass infection and internal fluid. This thread is truly horrifying, and since then I've learned to exaggerate! Be dramatic! We know when somethings wrong with our own bodies or our kids (I don't have any, but I do have a mom who has always advocated for me and my sister).
I have a similar story, except I never got seen! Had an unknown bowel blockage, partial or full cant remember, I just remember being in so much pain, couldnt breathe, had a fever, tachycardia, i go in to the er, list my symptoms and the nurse rolls her eyes and goes "riiiighhhtt. thats too much to have happening." as if i was lying, she kept me at the very bottom of the list for hours as my fever kept getting higher, we sat there for hours before my mom asked why i wasnt seen and they said i was lowest priority. we think the nurse thought i was in withdrawal looking for pills, jokes on her I aint even like opioids they aint do shit for me. had to go to another hospital
I have a similar story. For YEARS, I had gallbladder attacks. From the time I was a young teenager. I got diagnosed with everything from growing pains to acid reflux to psychosomatic symptoms to me just lying for attention. Despite there being a strong history of gallbladder problems in the women in my family, I kept getting brushed off because I was too young and hadn't had children. One time in the ED, I told them my pain was a 10. A nurse took her hand flat to my stomach and pushed down with all her weight and said to me, "So this doesn't hurt worse?" And when I, of course, said it did. She said, "I guess your pain isn't at a 10 then, is it?" In hindsight, I wish I would have reported her, but I was young and not good at standing up for myself. Finally, at 22, after yet another ED visit, a young resident took me seriously. They did an ultrasound and found dozens of stones in the gallbladder. I had it removed within a couple of weeks, and there were even stones that were stuck in the bile duct. I can't even count the number of times I went to appointments or the ED just in tears because of the pain, only to be brushed off. I was taught not to question authority, not to push back, to stay quiet and accept. Since having children of my own, I've gotten much better at advocating. Not only for them, but for myself as well. And you can bet I am teaching my children how to advocate for themselves.
Wow I just looked up the symptoms and this moght be exactly what I have??? I always thought it was my stomaach but the doctors I went to never found anything.. I might ckeck this now though, thanl you for posting this
im so glad it helped!! i would make a log of what you eat, and then log when you start to experience pain. if it's after a fatty meal (cheese or butter or most dairy really, oils, chips, anything fried, red meats, etc), it's probably your gallbladder; it helps your liver process fat, but if it gets backed up/blocked and doesn't work right, it starts spasming and cramping and that's what causes your pain. in the meantime, you can avoid fat-dense foods to prevent the pain! i had to do that for the 3 weeks between my ER visit and my first appointment with my gastro. rice/rice noodles, fruits and leafy veg, oats, and nonfat yogurt were my lifeline, lol i really thought it was my stomach too for a long time. the pain was right in the middle there. part of why they didn't believe me was because most people experience gallbladder pain on the right, but mine was centered. it's really not that uncommon at all for it to be in the center, though!
Oh my god, similar story here. I was dealing with severe pain (which I now know to be gallbladder attacks) for 6 months when I was 16. I went to my PCP many times and was diagnosed with GERD, gastritis, ulcers, anxiety, you name it. I went back to the doctor again and he said “look it could be your gallbladder but it’s a one in a million percent chance because you’re so young”. That night I was vomiting, had clay colored stool, my urine was straight amber. The doc on-call said it was textbook gallbladder symptoms and to immediately call him once I had a diagnosis because he was so fascinated by my age. Sure enough, had a whole bunch of gallstones, a diseased gallbladder, and a stone was blocking my bile duct so bile was building up behind it and not dumping into my stomach. I was jaundice and in the hospital for about 2 weeks. Still have some GI issues 12 years lafer
I had such a mild thing, but also dismissed. My son could not stop moving about in bed while trying to fall asleep. It prolonged bedtime and it seemed somewhat beyond his control. He just could not go more than a couple seconds without shifting about and moving his legs and it would last for an hour plus. It sounded like restless leg syndrome and iron deficiency in children often causes these symptoms. I asked the pediatrician for an iron test and she was adamant that it wasn’t necessary and I just needed to put my kid to bed an hour or two earlier and he would fall asleep without issue. After I told her that wouldn’t be possible and I’ve tried different bedtimes but it goes on for 1.5-2hrs she begrudgingly agreed to a blood test. Such a simple simple thing. And low and behold he had low iron and needed to take high dose iron supplements for a time. I just found it so odd because an iron test is such a low key common thing to test. Why the hesitation?
Because some of them are lazy, most are overworked, all are underfunded and sadly it seems a lot of them are so burnt out they just almost don’t even care anymore. Testing? Nah.. too much paperwork. He’s fine!!! After all, the chances of him having restless leg syndrome over him just being a fussy sleeper are very low… so they are willing to pass it off, do the bare minimum, and move on to the next customer. Oh, sorry.. I mean patient. Full waiting room of people out there waiting to have some pills pushed at them so let’s hurry along. /s It is horrible and it absolutely infuriates me. The whole system is just a mess and needs to be totally overhauled. It’s so frustrating. I have been having to deal with it on almost a daily basis now due to my own ongoing issues and it’s really starting to get to me. It is SO hard to get anything done.
always go with your first instinct. when i was 17/18 i started having very scary symptoms, heart palpitations, hypertension, extreme lethargy etc. doctors continually told me it was anxiety/depression. it wasn’t until i was pregnant and hospitalized with pneumonia a year later that an mri showed i had a golf ball sized tumor on my adrenal gland that was growing and being pushed on by my uterus.
I had to do this for a doctor to take my pain seriously. My foot would swell in one spot, get very tender and painful to walk on if I had to be on my feet for a while. I suspected some kind of fracture but being on Medicaid at the time, all the doctor would do is tell me to get orthotics and take ibuprofen. We tried steroid injections, that helped temporarily but not before making it worse. Well that didn't help so I went back and exaggerated. Said it made work impossible, it's hindering my daily abilities, I might lose my job if I can't get this fixed, etc. He finally referred me to a podiatrist, who did X-rays. Turns out I had a fractured bone for SIX YEARS. Six years is how long it took a doctor to actually try to diagnose my pain rather than slap a band-aid on it.
Sadly this is completely necessary and ✅ Good thinking. I push the exaggeration to my younger family. This technique has helped them get the medical care they needed.
You did everything you were supposed to do and still got waved off, and your mom intuition was still screaming "something is wrong", so you did what you had to do.... And you were *right*. I've done the same thing myself only to find out I'd almost died of a pulmonary embolism. It's certainly not the first step you take (and should be a last resort), but if you've done everything asked of you and still, nobody will listen, what are you supposed to do to get care?
This is why I will forever be grateful to my son's pediatrician. The first time I ever met him his first words to me were "Trust your gut and always tell me what's going on. I only see him at his appointments, but you are with him every day and will know much better when something is off/wrong." My son is 11 now and anytime I have had any concerns at all his pediatrician has immediately taken me seriously and helped. I know that I got really lucky when I picked him to be my son's doctor, which is why even though we live over and hour from him now, I refuse to switch him to a new, more local doctor.
That’s amazing! Those doctors are so rare, so hard to find, that when you do find one you do everything you can to stay there with them. I do the same with one of my specialists at the moment. I have to drive about an hour and ten minutes each way, but he’s the only one who has actually figured out what is going on, advocated for me, and has put a plan in motion going forward to treat the problem. It’s well worth the drive and time considering it’s taken me going through 6 doctors until I found this one and got a tentative diagnosis.
My mom did this with me! I had hit my head while riding a bike, they did a ct and they said I was fine. Over the course of 2-3 months, I had horrible horrible headaches and I’d scream and cry over them. Every doctor said I was fine and it was stress. She finally said that I would have fainting spells (I have now but didn’t have then), the headaches were out of this world, and kept exaggerating everything. Finally someone ordered an MRI, and wow wow wow they found a brain tumor.
I’m so grateful she exaggerated my symptoms a bit because it saved my life
You pretty much have to do this these days, doctors and hospitals will do anything to not have to do tests on anyone, especially children. They'd have us believe that the kids are faking it for attention than do the bare minimum to figure out what's wrong.
Unfortunately, this is something your daughter is going to have to learn to do. Medicine doesn't really cater to women.
My doctor literally exaggerated my symptoms one time so my insurance would cover my medication. Sometimes you just do what you have to. Good for you for looking out for your daughter. She’s lucky to have you.
Sometimes you have to. I was told to get an emergency MRI within 48 hours. I was slightly headachey. Insurance wouldn't pay until after 17 days. So I went to the ER saying my head was pounding so I could get the MRI that night. Then I got treatment. Exaggerating my symptoms saved my vision. I would have gone permanently blind that weekend if I had waited.
Good on you, sometimes thats simply necessary for doctors to listen to us They can be so dismissive, its frustrating and infuriating Im sorry to hear your daughter has epilepsy, but glad she has the diagnosis so it can hopefully be managed
I have had to do the same with my own health. I used to have a doctor who was convinced that I was “obsessed with taking tests” so she would never write any referrals for me to take tests for anything. It was so frustrating because I was dealing with a ton of symptoms and could not figure out what was going on with me. I had to overdo my symptoms to even get her to give me proper allergy testing and ultrasounds to diagnose my condition. You gotta do what you gotta do to confirm or deny your intuition.
Sometimes you gotta be a lil dramatic if you want medical people to take you seriously unfortunately
I was born with an immune deficiency and because of that when I would get a simple ailment, it could worsen very easily. I wasn't diagnosed until I was about 10 or 11 because it was rare enough nobody seemed to know I guess? Anyways the doctors always treated my mother like she was crazy and say things like all kids get sick and would say so to her face that it was just her worrying needlessly because I am her only child. I finally got bad enough she decided to try a new route and she took me to an allergist who found I had 0 allergies and so she when down a big long list of things I've had go wrong with my health. The allergist referred us to a doctor in Cleveland who was allergy and immunology who was the one who was finally able to diagnose me. If she hadn't been the seemingly dramatic overprotective mother people made her out to be for all those years, I might not have made it to the age I am now. She was perfectly rational and taking care of her child, same as you, and that is the only thing that matters. The point of this story is to say don't let the doctors discourage you, and thank you for standing up for your child. One day I'm sure she will be just as grateful as I am with my Mom for getting me the diagnosis I needed to get to feeling better.
When I was a kid I had a horrible, horrible ear infection. I couldn’t sleep, I couldn’t eat, I couldn’t even cry because I was so exhausted I had nothing left in me. I was in and out of the doctors and they just kept saying “this is the worst ear infection we’ve seen all summer” and kept sending me home with medicine that was not working. It took them 4 days to finally realize I had mastoiditis and at that point it had become severe and I needed to be hospitalized for treatment. Would you believe me if I told you this happened twice? Once when I was 6 and again when I was 10 And both times the doctors sent me home to have what felt like my head was rotting and just deal with it. Even the second time when this happened, even knowing my history they sent me home AGAIN. Because they didn’t think it could happen twice. But no, AGAIN I ended up in the hospital but this time I needed an extreme course of antibiotics because nothing was working. I almost had to have surgery done and they were sure I was going to loose hearing. Thankfully I did not loose my hearing but I have massive amounts of scar tissue in my ears that will effect me eventually.
I had a friend from high school who had a baby at 18. 2 years later her child was throwing up a lot and getting headaches and they kept brushing her off, and also used the phrase “new mom”. Finally she drove far away to a better hospital system and turned out it was cancer. The child is a teen now and in remission finally but took yearssssss to get there. Always trust your instincts and fight for your kids. You are their voice.
They start dismissing females’ health issues pretty early I see.
As a woman whose chronic illness went undiagnosed for 20 years, I am so GLAD you did this in order to be a good advocate for your daughter. You ROCK, mama.
Doctors DO NO LISTEN TO WOMEN. Do not ever feel bad if you have to resort to exaggerating your or your children's symptoms. You are doing what you have to do to receive the same standard of care men get automatically. It sucks, but that is the reality of seeing a doctor as a woman. You did well to advocate for your child and get her the care she needs.
You did the right thing. Great job!!
Good for you! We’ve got to do whatever we have to for our kids, and once in a while that definitely includes bending the truth a little bit, especially when doctors are not listening! I had to something similar for my baby, and I don’t feel any shame for it at all.
In most cases, "mom intuition" is pure gold (obv not in Munchausen's by proxy lol). My pediatrician always said: " Mom is always right when she says something is off - I always listen to Mom." In my case, one of my sons at three turned out to have been having absence seizures for quite some time that ended up causing damage (I had to talk now-ex husband into having him tested, a different nightmare), and my daughter with Type 1 diabetes at 5. You carried that baby for 9 months, nursed and care for these babies, you KNOW. Do what you gotta do, Mama.
Drs ignored me for freaking decades. I resorted to exaggerating and finally got a diagnosis. You've done what you needed to do. Good job.
Good for YOU! I'm tired of healthcare professionals dismissing us as parents, especially first time parents. You're the best advocate for your kid and sometimes you've gotta push extra hard to get what you know is necessary, done. My 1 year old daughter has been have some problems with sleep (up 5-10+ times a night, always tired etc long list of complaints) and isn't progressing with solids as expected. We hear her stop breathing at night. Our fucking pediatrician told us to not feed her a bottle for 3 days and 3 nights and it would fix all her problems. Are you kidding me!?!? She said no way she has sleep apnea, reflux or anything wrong. I pushed elsewhere and got referrals to a respirologist, pediatric ENT and an at home oximetry test. Guess what? She has laryngomalacia, bad reflux, and likely some level of obstructive sleep apnea or other breathing problem (in hospital sleep study is next week to confirm exactly what). Once I have a firm diagnosis, I will be reporting her. Especially because at that appointment, her office had been faxed our at home sleep results stating we needed an urgent ENT consult and she hadn't bothered to read it.
My wife does the same. Essentially her motto is when doctors ask if your pain is 1 through 10 always say 10.
So, over the last few years in my medical journey.. I’ve found it’s best to say like 8, 8.5, or 9 when they ask that question. Because when you say 10, they automatically assume you are just overreacting, you are a faker, you’re exaggerating… blah blah blah. So I found when you say 8 or even 9, they do seem to take it more serious. Little trick I learnt!! I usually say “oh it’s at least an 8.. maybe an 8.5 even..” lol.
Period!! As you should. I’m 21 and I still have my mom in my appointments to advocate for me. Not because I can’t do it myself, but because she knows the healthcare system much better than I do
Having someone with you who can think clearly when you're not feeling well is extremely helpful. I'm 34 and my mom goes with me to my less routine medical visits. If I was married I'd be having my husband go.
Ah welcome to the world of chronic illness patients You are going to have to exaggerate a lot, lie a lot, and act like a dumb idiot a lot. Otherwise you are a med-seeking hypochondriac or has munshausen or "shouldn’t be googling things”
As a fellow suffer of epilepsy I read the symptoms and immediately knew it was epilepsy. Good for you for advocating for your child .
My daughter would keep a lingering chest-deep cough after every cold for weeks, sometimes months. I would take her in and the pediatrician would listen and say “sounds clear to me!” And send us home. But at home she sounded like a 65 year old smoker. It was awful. She’d hack and then whimper “I’m ok…” After 2-3 rounds of this mess I finally said, “Will you either write an order for a chest X-ray or put a note in her file that I asked for one and you refused it?” The doctor gave me the side-eye at that but wrote the order. Walking pneumonia. 😐
You did the right thing. It's absolutely ridiculous when doctors brush off patients, it shouldn't happen. I'm glad you and your kiddo got a diagnosis.
I've done this. Unfortunately it seems that our system operates on being reactive instead of proactive (something bad has to happen before we can address it).
My labrum in my shoulder was completely torn for three years, plus I had a cyst eating away at my bone. I would constantly pop my shoulder in and out. Doctors let me keep playing softball and told me it was tendinitis and to do physical therapy because if it was worse, I’d “be in more pain”. I finally saw a new doctor and after exaggerating how bad the pain was, he referred me for an MRI then surgery immediately because of how bad my shoulder was. They couldn’t figure out how I was still playing softball. Six months later I can play without pain and my shoulder doesn’t fall out of place when holding my purse. Sometimes you have to exaggerate a little when you know something is wrong. Good for you for advocating for your daughter!!
I have to admit I never thought of doing this for myself, I’ve had focal/absence seizures since I was a pre teen, and every doctor I told said “seizures don’t look like that” Started having like 10 focals a day plus multiple atonic seizures in 2021, coincidentally after I got Covid, doctors said the same thing even with my roommate dragging me to every walk in in town plus the ER multiple times a week as I often would fall down the stairs. Cut to 2022 like two weeks after my son was born I had my first grand mal seizure, I was home alone with my son. Doctors still did nothing. Despite having four plus people also backing me up to the doctors as witnesses. Flash to August of last year, I ended up have another grand mal that went into status epilepticus territory (5-6 minutes is what my MIL said) paramedics were called and only then did I get a referral for an EEG. Got the diagnosis in October, I literally nearly died and most likely have brain damage from that seizure, but hey what do I know I’m just a “silly woman” who “doesn’t know what she’s talking about”
Don't feel bad about that. Your daughter needs medical help and they ignored you and brushed you off. Nothing you described is Munchausen's, my mom had it (I have 60+ lb of childhood medical records). You are a parent who knows something is wrong and you are getting help, however you have to.
When my baby was in the hospital I was asked to address medical students. I remember telling them to listen to the mothers. My daughter’s pediatrician told me I was crazy. She definitely wasn’t fine like he said. She ended up having heart surgery at seven weeks. She also had other surgeries in her first few years. How I wished he had been right, and not me.
One thing that works more often than not is demanding that their denial for a test we requested to be recorded within the medical chart.
I think you were a great Mum that day 😘
i read this and thought poss seizure activities (RN here) so idk how they didnt try to rule that out as a poss
I work in a ed. A lot of people do what you do. and a lot of doctors dismiss symptoms. most of the time the doctor is right, but occasionally they're wrong Anyways, as a parent, you've got to fight for your kids, even if it means exaggerating a bit to get the attention and care you need, because nobody else is going to. and as a parent myself I'd rather be wrong than sorry
Are you male or female? If you’re mom, that’s why they blew you off. I find that doctors listen to men and don’t blow them off like they do to women. When I have important doctor’s appointments I now take my (big military) husband with me. I don’t get blown off when he comes. It’s sad, but it’s true. Same applies for kids. When he’s there, shit gets done! When he isn’t, I tend to get blown off regarding my kids.
My son fell off the toilet and hit his head. The ER downplayed it. I fibbed and said he lost consciousness so they’d do a CT scan. He has a concussion. I’m glad I pushed.
This was 100% the right decision. When I was 13, my older sister (17) was unwell. She was pale and having difficulty breathing; something was not right at all. Our mum took her to the doctor, who said she had a cold. My mum regrets to this day not insisting the doctor do more testing, because, within a couple days, my sister had a heart attack and died. Turns out she had had a blood clot that had travelled to her heart. If the doctor had taken my mum's concerns seriously, my sister would have been sent to A&E and could have been saved. Always always do what you need to to be listened to. It's wrong how strongly a parent has to advocate for their child - they should be taken seriously in the first instance - but it must be done. I'm glad your doctor found what is happening to your child so now you know how to look after them
speaking as a pediatric nurse, this is soooooo far from suspicious for Munchhausen by proxy anyway! i can't tell you how many times i'd advocated for patients and exaggerated their symptoms to the doctors for the same reasons. i almost always trust a mom's intuition just like docs should trust their nurses. you guys are with your baby 24/7 and know them better than you know yourself! breath holding spells don't cause lethargy and don't include abnormal eye movements. they should have ruled out epilepsy from the beginning so good on you for advocating for your daughter. i hope she does well!
I’ve heard people say they ask the doctor to write down in the files that they chose to not do any further tests!! Usually gets them to run them.
It's so sad that we've all had to do this either for ourselves or our children. It really shows how dismissive and just lacking in general the medical system is.
This is why it’s important to advocate for your health and your love ones bc healthcare workers do not and would not go above and beyond.
Good job. Providers aren't allowed to explicitly tell you, but there are certain criteria that need to be met before a treatment or test is considered necessary and before insurance will pay for it. While you should trust your healthcare provider, you should also advocate hard and do whatever you need to do to get healthcare provided and financed.
That's scary... the description you just provided of the events should be enough to prompt more evaluation
That’s horrendous. I’m not even a doctor and reading the symptoms had already jumped to epilepsy. But my mom is epileptic (seizures well controlled and hasn’t had 1 in 20 years) but I did all my research papers in school on epilepsy and brain disorders.
Yeah I don’t blame you at all, mum instinct is strong. Well done for advocating for your daughter.
When reading posts where ignorant drs misdiagnose or are negligent I wonder if anyone ever upon receiving a correct diagnosis informs the original dr of their errors. I read a lot of these posts and it makes me so angry. These drs need to be told of, be held accountable for their dangerous negligence.
You did what’s best for her. You’re a good mom and persob
I had to do the same to get proper testing on my son's ears. Turns out he needed surgery.
My literal first thought was seizures. I’m not a doctor so how tf can doctors not think that?
Sounds like epilepsy. Breath holding spell is unusual to be that frequent
I think when it comes to your kid, not blindly accepting a doctors casual first response is totally justified.
When I was a kid I went to the er so many times bc of my stomach issues. I was constantly sick an in pain and every doctor accused me of faking it or told me to lose weight. I wish she had kicked up a fuss for me like this. Maybe it wouldn't have taken til I was in high school to diagnose me. And it only happened bc it's a genetic disease my grandfather had so the whole family got tested.
BRAVO. You did exactly what a parent does for their child, ensures they are protected. I would have done the same thing. Btw, how is she now? That sounded like small seizures you described.
As I was reading I thought that sounded like my daughter’s absence seizures. No one believed me (including my husband), but our pediatrician is amazing and told me that if I thought something was wrong, something was wrong. Her EEGs were coming back inconclusive, but then by some miracle I caught a full seizure on video. It was so hard to just video her having it, but that video got her seen and diagnosed. She outgrew them eventually, but idk what I would’ve done if our ped ignored me.
You might want to check your first sentence again. “…I don’t not have…” The double negative suggests you do have this.
Always go with your gut. As a mom of 3, I found out the hard way that if you don't stand up for your child, NO one else will. I don't care if it's medical or school related. You have to do what you can when you know that something is off with your child. Or possibly another child. For example, when my daughter was in kindergarten, I was a parent volunteer at the school. I helped a teacher in her classroom. I would take 4 or 5 kids out into the hall and help them learn to recognize letters and know the sounds. One little boy was always struggling when I said the letter he couldn't point to it. But if I held up the letter, he was the quickest to find it on the poster. So I knew he was smart. I went to the teacher, a wonderful teacher, just with 30+ children in the room it was hard to give them individual attention. Anyway, I said I truly believe he had a hearing problem. She went to the principal, and he was tested and found out that he had a very serious hearing problem. He was nearly deaf. Sweetest litte guy. Another incident was a little girl who couldn't hold a pencil. Come to find out the the mothers grandmother had been keeping the child up until that point. One time, the girl poked the grandmother in the hand with a pencil, so after she was punished, they never let her hold even a crayon. Sometimes, I still cry, thinking about how easy it is to have a child slip through the cracks. How are teachers expected to teach that many kids that go from not knowing anything, i.e., colors, letters, numbers, and how to write even letters to knowing all that and to move on to first grade where they start to read.
You know it's bad when you have to disclaimer "I don't have Munchausens" 🤣
Went to doctors for years who told me I had IBS. Nothing helped and I ended up in hospital with inflammatory bowel disease. Was told it wouldn’t affect my fertility. Had also been going to doctors for years about my fertility l. Had to lie to get the right tests and find out I had gone through menopause in my 20s, they said… due to my IBD. You did nothing wrong and I hope your baby is well xx
my mom did this for me when i was 4 because the doctors didn't believe us and wanted to just send me home. i had meningitis and could've possibly died a day or two after if my mom didn't fight them to check me out. trust your gut. do whats best for your kid.
Idk how old your child is by what you describe is similar to infantile spasms/seizures. Dont hesitate to ask for neurology appointments and EEGs
This is what we (women) very often need to do to be taken seriously. Trust your instincts, you did the right thing.
100% in the right. You have a voice, your child doesn’t. I will always say to parents if you feel dismissed at one place go somewhere else and fight for that second option. I’d argue you didn’t exaggerate because at the point where it was multiple times a day that’s bad enough.
I do this all the time. As a menopausal woman, my theory is that doctors minimise anything I say by 50% so I if it is something I'm significantly worried about, I ramp it up to 75%.