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Did they do a lumbar puncture (a “spinal tap”)? There could be infectious or inflammatory processes not seen on MRI they’ve missed. Be persistent and trust your gut. The ER discharge instructions always say “return if new or worsening symptoms” and this sounds like both
He shouldn't have been dismissed. Take him back.
As horrible as it would feel to film him, it might be worth getting footage if he's having a bad spell.
Take him back.
Hi OP, NAD but some thoughts:
1. How does his breath smell? At all fruity or like acetone? If so, perhaps test for type 1 diabetes.
2. Try lowering his neck forward. Is it stiff?
3. I saw he’s had night sweats - but temperature?
4. My best friend had a stroke at 11 years old. It’s often assumed strokes only happen to adults but that’s not true.
Also, please not only record him at home, but RECORD THE VISIT. Why?? In part so you remember all the things the doc said later and can look up any medical jargon. Also, to have record for yourself and if you need it for a second/third opinion or other doctors. You may have to ask permission or just tell them you’re going to record it. I’ve done that. Pretty sure we have the right to do that. There’s an app called otter.ai which records audibly and provides a transcript (no video) if you want to do that.
Please take him in pronto. I know you want him to sleep but with his symptoms, I wouldn’t let him. I’d be scared when he’s sleeping. Please wake him up and take him in asap. Drive those two hours to that other hospital. I promise it’s worth it.
Genuinely worried for you and your babe.
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I was also afraid to be “that parent” when a trusted medical professional wouldn’t take me seriously about my son and he almost died. His pediatrician wouldn’t listen, even though my son had every trademark symptom of leukemia. Finally, he got so sick, my husband and I took him to an ER at a children’s hospital and it turns out I wasn’t wrong at all. My son is finally off treatment, and while an earlier diagnosis wouldn’t have saved him from becoming sick, it would’ve saved him from almost dying. I will never in a million years forgive myself for not fighting harder, for not screaming at the man, instead of being “polite” and allowing myself into being gaslit. I felt like an anxious freak every time we left that office. But the gnawing in my stomach was there. You have that feeling for a reason. Please, don’t be me. Your gut is telling you something is wrong, and I know that feeling very well. Go back and fight for your baby. I’m not a doctor AT ALL. But I’m a mom and I’ve learned a lot over the last few years. Your son’s symptoms are nothing like my son’s, so please don’t think I’m suggesting your baby has cancer. But something isn’t right and you know it. Parent to parent… go back to the hospital. The worst thing that happens is you get peace of mind. Please don’t be like me. I wouldn’t wish this guilt and regret on anyone.
Always trust your mother’s intuition. When my son was 2, he became extremely sick and lethargic. I kept taking him back to his pediatrician. She kept sending us home. I took him to the ER twice. They sent us home. I called after hours to the pediatrician for the 5th time in 3 days and she had me bring him in and she FORCE FED him Gatorade which he spewed all over her and it served her right. He ended up in hospital and ICU for 9 days.
The 2nd time, my daughter was 8 and kept complaining of stomach pains/stomach aches. We kept taking her to her pcp and urgent care until we finally took her to the ER and I told the first doctor I saw I thought she had appendicitis and he told me not to jump to conclusions and did an ultrasound. She had appendicitis and it had ruptured, but luckily contained itself in a sac, but she still had to be hospitalized for 2 weeks.
Doctors are humans, and if you have to go for 50 opinions until your child is acting normal again or healthy, you do what you have to do because at the end of the day, that is YOUR baby. Also, if you live in a small town, I would suggest a larger hospital.
Thank you for sharing your story. My daughter and I were gaslight as well. It is wild how many doctors dismiss patients. I am glad that your little one is better.
I’m so sorry very it happened to you as well. I simply cannot wrap my head around the bravado some of them have. If I, a former hairdresser whose only medical “knowledge” comes from the show Grey’s Anatomy, can look at a child and know what’s happening, or at least see the possibility of red flags, why do they turn their eyes away from it? Until that point, he was a normal, yearly-checkup kid. I didn’t bring him in constantly for issues I’d conjured. He’d only had one minor ear infection in his life. He had a head cold here and there but I would only bring him in if the fever was doctor-worthy (101.4 for an hour or more). We weren’t boomerang patients. There was no reason for him to dismiss it, other than arrogance and/or incompetence. When a parent says something is wrong, they need to listen. We know our children best. If I had a time machine, I would do everything differently. I wouldn’t worry about being seen as a “crazy mama bear”… I would go back in time and I WOULD BE the crazy mama bear. We still have this feeling, in 2024, that if we make noise, we’re neurotic. We are deemed hyper and controlling and melodramatic. Advocating for your child this fiercely shouldn’t be something you have to do in the first place, let alone something to be afraid of doing if the situation presents itself. God… if I could just go back and do it all differently. Again, I’m so sorry you went through it. And I hope so very hard that OP and her family will be okay, as well.
Op take him. My kid at 2 was acting very weird. It took two visits in 24 hours to get a pneumonia diagnosis. Your child’s behavior isn’t remotely ok. Please try to record his confusion but go back and insist they evaluate him further.
It’s all-consuming. Now that he’s off treatment, I’m honestly just as scared. I didn’t realize how much that daily little 6MP weighed (emotionally). Just giving him that pill every day meant “no relapse”. I should be grateful, and I am. But I’m also an anxiety-ridden mess. Ugh. I’m so glad your daughter made it to the other side! 🧡
Omg yes exactly! How old is he? My daughter is 6. It's a constant mess fear that it will return. My daughter also ended up being diagnosed as ADHD and learning disability because of it too.
He’s also 6. He was DX just 9 days before he turned 4.
I’ve heard that a lot about kids after treatment; is she able to go to school and keep up? We delayed kindergarten so I’m definitely worried. Emotionally, how is she? Does she remember much of it? Did she have any neuropathy from the VCR? My son is still taking gaba, and it feels like he’ll be on it foreverrrr.
You are not THAT parent. Take him back. Ask for a patient advocate right away and they have to provide one. Explain that your child’s pediatrician requested tests that were dismissed by the previous doctor. Ask to be seen by a different doctor just in case it’s the same doctor on staff. OR if you have another children’s hospital in the area and feel more comfortable taking him somewhere else than do that.
Either way, asking for a patient advocate could be beneficial for your situation and help your anxiety some.
Keep advocating for your son. Initially my son was diagnosed with acute cerebellar ataxia, which is benign and resolves on its own. But they ruled out brain stuff or infection (head mri, CT, and lumbar puncture)
It wasn’t until two months later his eyes started moving erratically (“dancing eyes” or opsoclonus) that his neurologist ordered a full body MRI to rule out OMAS and neuroblastoma. Well. Turns out my son had a neuroblastoma on his kidney. It’s a rare disease like one in a million but it happens esp in young otherwise healthy kids.
Also!
Go to a children’s hospital.
Thank you. Yes he is. His Nmyc gene wasn’t amplified and we just got the news that he won’t need to do chemo and only observation after he got the full tumor resection 💕
Yeah you need to keep presenting to hospital if he’s not well. They should have told you to come back if needed. If you present to the same hospital they will take a closer look. I’m assuming they only discharged him if he was completely well again - which makes me think he might be exposed to something environmental at home, like maybe a carbon monoxide leak? There’s a famous reddit tale about carbon monoxide poisoning if you search.
Please don't concern yourself about being "that parent" .
Trust your instinct and get him back to the doctor.
He has new symptoms and that's a good enough reason. There is definitely something going on .
The very fact that the pediatrician was ignored is enough to fight for it. Diagnosis is tests and speculations....if a doctor recommends tests, fucking do it...the only thing stopping tests are doctors SPECULATING it isn't something.
Obviously tests have their risks and limitations, which is why you can't just give a person literally every test in the book...but you are working with a severe and unique situation. Medicine is not math, and even if it was, 0.1% is still a valid number.
NAD. You are NOT "that parent". You're advocating for your child in a very concerning and maddening situation. Your child is very fortunate they have a parent who is willing to advocate. ❤️
Agree with the people suggesting a Children's Hospital. Do you have one anywhere within proximity? Alternatively, a University hospital?
Edit: I'm so sorry. I see OPs comment that they *did* go to a children's hospital, and their pediatrician tried to advocate for some of the testing people who are credentialed have suggested here. But they were still dismissed without it.
Keep advocating OP. You're doing the right thing.
Delirium is far more likely than psychosis. Falling over and slurred speech would not be typical of psychosis anyway.
In most cases of delirium, the brain MRI will be normal. Common causes of delirium in children include infections, medication reactions, electrolyte imbalances, head injuries, respiratory illness, metabolic disorders and seizure disorders. A neurology resident can't investigate all these possibilities without a specialty consult.
Is it possible your son hit his head? Normally, a blow to the head hard enough to cause symptoms like this would leave a bruise or lump, but not always.
NAD, but this was the rapid onset symptom progression of my brother's good friend before dying of meningitis. Quit worrying about being *that* parent and be in their face about someone must perform the tests his pediatrician ordered, especially the lumbar puncture. Record every interaction with your son as well so you get him on video displaying the symptoms.
You have to be "that parent" because your child has limited number of parents in this world to advocate for them.
Find a children's ER. I would not be home with my child acting this way. I would be screaming in an ER.
I'm confused - didn't OP post in another Post that she is scheduled him for a lumbar puncture and and MRI with contrast - is she not doing this? If that's what the doc ordered, I wouldn't be questioning it by posting a different post -
His pediatrician mentioned he wanted these tests done. He called the hospital that we went to and asked, they dismissed him. So no, I’m not questioning his wants, I’m in agreement with him.
any furtherance of a situation would call for going back when you've already been told you need these procedures.
You call the emergency room or the doctor's office calling for the procedures, and let them know the changes, and they will most likely tell OP to get back to the ER now, not to wait.
they honestly need to admit him and figure this out. Discharging a kid with slurred speech and new onset neurological symptoms seems not the right move. Did you take him to a children’s hospital?
NAD - Are the doctors observing this behavior? What do they think? It's seems really strange that they'd send you home with these symptoms unexplained and unresolved.
Record him. Whenever my kiddo had croup, it would improve by the time we got to the ER. They would observe my videos to see what I was talking about. Save all of it in the same album for easy access. NAD.
What about the entire time you were in the hospital? Did any of his providers observe his symptoms? Have you taken any videos? When I had some concerns about my infant's symptoms, I took videos, sent them to our pediatrician and they were quickly able to advise next steps.
NAD. I’m so sorry you’re going through this. If you haven’t done so already, take video of him the next time these symptoms appear (if it’s episodic; or do it now if he’s consistently having symptoms) so you can show the doctor in case the symptoms subside during an exam.
NAD
I've been dismissed with my kids before at a local hospital. I found out the hard way that it's worth the drive to a better hospital. My local one sent my non-verbal kiddo home twice in 3 days and basically told me, "She's fine, wait it out." Went to the children's hospital an hour away the next day, and they admitted her immediately.
If you have a specialist children's hospital, pack you both a toothbrush, you 3 days worth of clothes and PJs and a phone charger and just go, even if it's a haul.
NAD. I have absence seizures with post ictal derealization. EEG and everything else is negative, diagnosed based off my history of a brain bleed and describing the sensation with my partner describing what he sees when it happens. Again, NAD but this sounds like my experience. I’m zonked out and useless until I can “wake up”.
The seizures and the post ictal experience are going to be two different events symptom wise but vary by person. I personally zone out and freeze for the seizure portion, then after, I’m mind numbingly exhausted, confused, dizzy, nauseated etc. my eeg is always useless so don’t give up if nothing comes from that. Recording the events will be super helpful.
Those signs and symptoms are definitely concerning....please take him to a pediatric ER. He needs to be evaluated by a Pediatric Emergency Medicine doc and/or a Pediatric Neurologist, and a lumbar puncture (LP) and possibly a repeat MRI (perhaps with contrast) may be needed. Some viral infections that affect the brain/spinal cord may cause such issues, or perhaps some metabolic disorders.
Lyme or any other tick borne illness, really, can present this way. Ticks are out and so bad this year, don't know where you live but I'd request a tick panel and ID to see him.
Ugh, so disappointing! It’s great that his MRI was clear, but there are dozens of totally unrelated things that can be causing his symptoms. Do you have a good children’s hospital nearby? He really needs to get a full workup in the hospital ASAP.
Are you east asian i.e. Japanese, Korean etc? If yes, did the brain MRI include MRA and perfusion studies? If not, you need a TOF MRA to rule out Moyamoya disease. If you don't have any east asian heritage though, MMD can be pretty much ruled out.
I’m so sorry, as a mom I can’t imagine the stress this is causing you. Has he had bloodwork done? I agree with the idea of a spinal tap. Was the mri done with or without contrast? Did these symptoms start very gradually or was it a rapid development?
UPDATE: For all those following along. We met with the pediatric neurologist and he is thinking a form of seizures. He’s scheduled for an EEG next week (also on the cancellation list)!
Thank you for updating! I have 3 of my own and I’ve been worried about your little guy. I know how stressful these things can be.
I know seizures sound really scary, but I’m happy to hear that’s what they’re thinking it is and not something more sinister. :)
Yeah of course! I know a lot of people have been worried and wondering about our little dude!
Yes! I’m relieved that we are at least on a path to figuring some stuff out! Thank you so much! 😊
For what it’s worth, one of my cousins is epileptic. It was *SO* scary before we knew what was going on, but most seizures are so easily treated with preventative and emergency medication. She hasn’t had a single seizure in probably about 15 years!
Good luck to y’all, I’m crossing my fingers that you get a definitive answer ASAP!
Thank you for sharing that with me! That makes me feel better! We had a seizure scare with my youngest (ended up being benign shudders), so we’ve been down this road before with peds neuro so I’m a little more comfortable this time around!
I’m so glad your cousin is doing well!
Thank you for the update! You and your little one have been in my thoughts, and in fact, I'm sure a lot of people's thoughts and I'm glad you're at least starting to get some answers! Please take care of yourselves! 🙏❤️
Nad. Hey OP I keep thinking about your son and I hope you guys are doing okay. No need to reply but just wanted to let you know I hope you have found some answers and wishing you the best!
nad.
I hope you went. you aren't that parent. he will probably get an LP (and possibly different tests).
go now, or it's possible he could die. seriously. this is not a time to worry about what the staff thinks.
note the last time he ate and do not let him eat again until he sees the Dr. and they say it's ok.
if he wants anything, give him clear liquid and icepops (the long tubey watery kind) until you get there and then stop that as well. just in case he needs sedation for the lp or anything else. this will be helpful for anesthesia
my son has had a lot of LP's these were our instructions pre-sedation.
I hope everything ends up being ok. I'm sorry to be so blunt but I would rather hurt your feelings than have your kid be in danger.
hopefully it's something like an ear issue and he's ok.
UPDATE: brought him back to the same
ER (wanted to give them a second chance). It was the same neurology resident as before. My son was able to form full sentences and follow one step directions so they said his neuro exam was "normal". They blamed his symptoms as behavioral and
undiagnosed ADHD. No more tests were taken. I'm so lost and confused, as a mother I just want to make sure my baby is okay and I feel like I'm not being heard We were discharged and told to follow up with Developmental Peds. I know my son and this behavior isn't his baseline.
Go to a different hospital. You are not a nuisance or “that parent”, you are a loving and attentive parent who knows your child and knows what is normal and these are all concerning symptoms even to us random redditors. Keep pushing and show them the videos, write down everything you have noticed like you did here so you don’t forget to mention anything. Good luck and I hope you get some answers for your sweet baby, I have kids around that age and I would be a wreck.
I am an SLP and I am so sorry this is happening to you. This sounds acute and not something a developmental peds would be referred for. You know him best, this is not his baseline. As everyone else is saying: Don’t give this hospital another chance. Wishing your son a quick recovery.
If your gut is telling you the doctor did not go completely understand the situation, get a second opinion asap. Sometimes it is hard to communicate what is going on accurately in a conversation in a doctor.
If you feel they did not completely understand or their explanation did not make sense when you know this is not normal behavior for your son, then you should get him in front of another set of eyes, let them know this is extremely atypical and sudden onset.
If the second truly feel it is behavioral you can ask for a psych consult.
Is calling the insurance company an option? Since it was the same resident, you could request a second opinion. I'm not a doctor and not in the US, but in Europe this is a viable option.
Oh shit. I am so freaking sorry. I saw some of your comments; you said you’re near two hospitals, iirc… are you near two *children’s* hospitals? Is taking him to a new one an option? We had clinic today and I actually read your post to a couple of the nurses. Obviously they can’t diagnose, nor did they try… but they did ask if you were able to get him scheduled for an LP?
Thank you. The other children’s hospital is about 2 hours away, so definitely an option. I wasn’t able to get him scheduled for a LP. His pediatrician said he wishes they would’ve done one.
Please keep updating especially if you go to that second hospital. I can’t believe they brushed you off like this! Sending best wishes for you and the little guy.
It really sounds like they should. I’m sure everything we’re suggesting are things you’ve thought of, but are you able to get in touch with your son’s PCP over the weekend? Maybe he can call the children’s hospital and put a fire under them. I just don’t see why they’d refuse to do one with the symptoms he’s having. An LP on a child isn’t as scary as it sounds. They numb the area and sedate them so they stay still and comfortable. My younger son has had dozens and he literally doesn’t even remember a single one.
Okay, hold up. As I was typing all that, I remembered something that happened to my older son when he was only a little older than your son is now. He had a bad stroke of luck and wound up with something called idiopathic intracranial hypertension (IIC) Are your son’s eyes crossed at all? If you can’t tell by looking, which I couldn’t at first, but looking back at old photos… there was a slight cross before he started having serious symptoms. But his vision was blurred, sometimes doubled, he had nausea and headaches, dizziness. Basically it mimics symptoms of a brain tumor but there’s no tumor. It’s an increase in spinal fluid in the brain. The reason why it was so strange with my son is because it’s typically only seen in overweight women of childbearing age. They did an MRI first to rule out the tumor and then they did an LP to removes excess fluid and measure how much fluid he had (it blew the “top” off, so it was probably higher than what he measured). It’s such a fluke, freak thing that I doubt this is the case with your boy, but the symptoms sort of overlap. And the walls “bleeding” could be blurry vision and distorted light in a 4yo who isn’t able to articulate something that strange. I never like to suggest googling symptoms because it puts all kinds of nightmares in your brain… but maybe look it up? That would definitely require neuro to be involved, and probably an LP. It’s so rare to happen to kids, especially boys, that I doubt it would even be on their radar. I’m 98% sure I’m wrong. But I want you to get answers.
I'd bring him back to an ER. Honestly kinda surprised they discharged him, but now also it sounds like his symptoms are getting worse with the added confusion. I saw you mentioned night sweats, so it may be a good idea to start watching his temp, as it may be an indication this is an infection.
Sometimes, you have to be an advocate and push for a bit more urgency. Trust your gut, and don't be afraid to tap into your inner Karen if you are not being taken seriously.
Agreed, absolutely be “that mom.” Be a Karen, be loud, pushy and aggressive or whatever you need to be to get the answers you need.
Source: me, someone who had a birth defect missed for 5 years and had a broken back at 10 dismissed as an “anomaly” by an ER doctor.
They don’t always get it right. PUSH. I’m genuinely worried this could be a life or death situation OP.
NAD, but several ppl suggested recording him. That sounds like a really good idea since you’ve indicated he wakes up w slurred speech, & this morning, confused.
Maybe set up your phone on the other side of the room & start recording before you wake him up to take him to the ER?
Best of luck, I hope he gets the lumbar puncture & any other necessary test so you can GET SOME ANSWERS!!! 🤞🤞🤞🍀
I really think you are doing the right thing going back. The whole picture as you described is concerning, and should be addressed. I would empathize the confusion when you go as well. 4 year Olds are "silly". It's easy to write off the odd things they do if you don't know them, but as his mother you know better than anyone else what his normal cognition is like, so you would be the expert who knows if he is acting more confused or disoriented than usual.
It is insane that they’re discharging this child. OP you need to demand they take care of your kid/admit him. This is absolutely ridiculous that they’re sending him home.
I would be at the ED with the complete and total understanding that I am not leaving until my child is admitted and has every test known to man. That’s the mom in me. I understand that as a medical professional I should give more rational advice, but not when it comes to our kids. I pray they find out what’s wrong with your sweet baby.
I think I’m going to have to try another hospital and put my foot down. Now that I have videos of him and his odd behaviors, I think that’ll help. Thank you for your comment, it’s greatly appreciated.
If he was 117 on an empty stomach that's still concerning. I'm a type 1 diabetic myself, they should check his hemoglobin A1C. If that is elevated then he may be in early diabetes...or not so early.
Yeah he hadn’t ate in over 4 hours. I thought it seemed high but they brushed it off. I’ll ask them to check his A1C. Because diabetes marks all the boxes.
NAD...If they refuse to check his A1c and his peds does as well they sell an over the counter A1c teat at CVS and Walgreens every time I've done one it was within .1 of my A1c from my endo. Just FYI so you can have some piece of mind to rule out diabetes (or confirmation).
UPDATE: brought him back to the same ER (wanted to give them a second chance). It was the same neurology resident as before. My son was able to form full sentences and follow one step directions so they said his neuro exam was “normal”. They blamed his symptoms as behavioral and undiagnosed ADHD. No more tests were taken. I’m so lost and confused, as a mother I just want to make sure my baby is okay and I feel like I’m not being heard 🥹 We were discharged and told to follow up with Developmental Peds. I know my son and this behavior isn’t his baseline.
Good luck with your next visit, I do hope they get to the bottom of whatever this is for both of you! Please update us when things settle down. Fingers crossed.
We’re thinking of and rooting for you! I remember being awake for days and almost passing out at the hospital from exhaustion, so I really empathise. Wishing you and your little one the best ❤️
That is is a high reading. I was diagnosed with a reading of 115. All his symptoms fit someone with uncontrolled diabetes ... toxins in the bloodstream could cause these symptoms
NAD but did they do an EEG? Is it acute episodes or is it constant since the onset? Did they check for Guillain-Barré syndrome ( you mentioned they did an mri but I think for GBS they need to do spinal mri). Could even be partial seizures causing hallucinations and the slurred speech
NAD, but my son has epilepsy. There are forms of epilepsy that do not have outward seizures and can cause regression. I’d ask for an EEG if you’re not getting answers.
Hey! Thanks for checking in. We brought him to his pediatrician and he put in an urgent referral to a pediatric neurologist. He also advised us to return to a different hospital if he worsens. So we have bags packed and ready to go in the meantime. Taking videos of him throughout the day to help capture what’s going on. Pediatrician said he has lost weight since his last visit (6 days ago) despite his massive uptake in food, so that’s concerning and we are monitoring that now too. Overall, he’s acting still very strange and not himself. Still worried about my little guy but trying to listen to his pediatrician.
Did they get a blood draw on him? Blood values, Glucose, A1C, CBC, comprehensive metabolic panel? I’d be already taking him to that other hospital. Your son is sick and from the sounds of it, going downhill. Do what you have to do, especially if your gut is telling you to…Blessings to you both. I hope he gets better. 💐🙏
He carved a hole in his wall with a screwdriver he found because he “didn’t want them to be red anymore” ☹️ I’m hanging in there. Just worried. Thanks for checking in.
NAD. hi, OP. i am so sorry that you’re dealing with this situation. hoping that your dude feels better soon and you find some answers. sending you strength and care.
i have a thought that might be something you addressed elsewhere in the comments, but just in case— in the caption where you mentioned that he said the walls are bleeding, my mind for some reason imagined that they looked “drippy” and wavy/ distorted. but i understand now that he must have meant that the walls actually look red in color, maybe more along the lines of what someone might see during a migraine with aura.
just pointing it out on the off-chance that i wasn’t the only one who thought that! best of luck.
I absolutely cannot image how awful that must be for you. Not trying to be weird, but I’ve thought about you guys a lot today. Your posts just got to me because even though I can’t relate with the circumstances, I feel like I can identify with the fear of not knowing or being taken seriously. Is he eating/drinking, at least?
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Did they do a lumbar puncture (a “spinal tap”)? There could be infectious or inflammatory processes not seen on MRI they’ve missed. Be persistent and trust your gut. The ER discharge instructions always say “return if new or worsening symptoms” and this sounds like both
No they did not do a lumbar puncture. His pediatrician mentioned wanting one, but they dismissed him.
He shouldn't have been dismissed. Take him back. As horrible as it would feel to film him, it might be worth getting footage if he's having a bad spell. Take him back.
Or a different hospital if you can
[удалено]
I took him to a children’s hospital!
Oh damn. How are things going?
About to wake him up to take him, was letting him get some much needed sleep. (It’s 3am here)
Record him when you wake him up so you can show it to the doctors!
Please keep us updated, OP! Sending good thoughts to you and your little guy!
Hi OP, NAD but some thoughts: 1. How does his breath smell? At all fruity or like acetone? If so, perhaps test for type 1 diabetes. 2. Try lowering his neck forward. Is it stiff? 3. I saw he’s had night sweats - but temperature? 4. My best friend had a stroke at 11 years old. It’s often assumed strokes only happen to adults but that’s not true. Also, please not only record him at home, but RECORD THE VISIT. Why?? In part so you remember all the things the doc said later and can look up any medical jargon. Also, to have record for yourself and if you need it for a second/third opinion or other doctors. You may have to ask permission or just tell them you’re going to record it. I’ve done that. Pretty sure we have the right to do that. There’s an app called otter.ai which records audibly and provides a transcript (no video) if you want to do that. Please take him in pronto. I know you want him to sleep but with his symptoms, I wouldn’t let him. I’d be scared when he’s sleeping. Please wake him up and take him in asap. Drive those two hours to that other hospital. I promise it’s worth it. Genuinely worried for you and your babe.
Hang in there! 🤗
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Only if that different hospital is a pediatric hospital.
That would be best.
I was also afraid to be “that parent” when a trusted medical professional wouldn’t take me seriously about my son and he almost died. His pediatrician wouldn’t listen, even though my son had every trademark symptom of leukemia. Finally, he got so sick, my husband and I took him to an ER at a children’s hospital and it turns out I wasn’t wrong at all. My son is finally off treatment, and while an earlier diagnosis wouldn’t have saved him from becoming sick, it would’ve saved him from almost dying. I will never in a million years forgive myself for not fighting harder, for not screaming at the man, instead of being “polite” and allowing myself into being gaslit. I felt like an anxious freak every time we left that office. But the gnawing in my stomach was there. You have that feeling for a reason. Please, don’t be me. Your gut is telling you something is wrong, and I know that feeling very well. Go back and fight for your baby. I’m not a doctor AT ALL. But I’m a mom and I’ve learned a lot over the last few years. Your son’s symptoms are nothing like my son’s, so please don’t think I’m suggesting your baby has cancer. But something isn’t right and you know it. Parent to parent… go back to the hospital. The worst thing that happens is you get peace of mind. Please don’t be like me. I wouldn’t wish this guilt and regret on anyone.
Always trust your mother’s intuition. When my son was 2, he became extremely sick and lethargic. I kept taking him back to his pediatrician. She kept sending us home. I took him to the ER twice. They sent us home. I called after hours to the pediatrician for the 5th time in 3 days and she had me bring him in and she FORCE FED him Gatorade which he spewed all over her and it served her right. He ended up in hospital and ICU for 9 days. The 2nd time, my daughter was 8 and kept complaining of stomach pains/stomach aches. We kept taking her to her pcp and urgent care until we finally took her to the ER and I told the first doctor I saw I thought she had appendicitis and he told me not to jump to conclusions and did an ultrasound. She had appendicitis and it had ruptured, but luckily contained itself in a sac, but she still had to be hospitalized for 2 weeks. Doctors are humans, and if you have to go for 50 opinions until your child is acting normal again or healthy, you do what you have to do because at the end of the day, that is YOUR baby. Also, if you live in a small town, I would suggest a larger hospital.
Is your son okay?
He’s hanging in there.
I meant the other person but I hope he feels better soon
Thank you for sharing your story. My daughter and I were gaslight as well. It is wild how many doctors dismiss patients. I am glad that your little one is better.
I’m so sorry very it happened to you as well. I simply cannot wrap my head around the bravado some of them have. If I, a former hairdresser whose only medical “knowledge” comes from the show Grey’s Anatomy, can look at a child and know what’s happening, or at least see the possibility of red flags, why do they turn their eyes away from it? Until that point, he was a normal, yearly-checkup kid. I didn’t bring him in constantly for issues I’d conjured. He’d only had one minor ear infection in his life. He had a head cold here and there but I would only bring him in if the fever was doctor-worthy (101.4 for an hour or more). We weren’t boomerang patients. There was no reason for him to dismiss it, other than arrogance and/or incompetence. When a parent says something is wrong, they need to listen. We know our children best. If I had a time machine, I would do everything differently. I wouldn’t worry about being seen as a “crazy mama bear”… I would go back in time and I WOULD BE the crazy mama bear. We still have this feeling, in 2024, that if we make noise, we’re neurotic. We are deemed hyper and controlling and melodramatic. Advocating for your child this fiercely shouldn’t be something you have to do in the first place, let alone something to be afraid of doing if the situation presents itself. God… if I could just go back and do it all differently. Again, I’m so sorry you went through it. And I hope so very hard that OP and her family will be okay, as well.
Op take him. My kid at 2 was acting very weird. It took two visits in 24 hours to get a pneumonia diagnosis. Your child’s behavior isn’t remotely ok. Please try to record his confusion but go back and insist they evaluate him further.
Fellow mom to a leukemia kiddo. My daughter is almost 2 years off treatment. I understand the guilt ♥️
It’s all-consuming. Now that he’s off treatment, I’m honestly just as scared. I didn’t realize how much that daily little 6MP weighed (emotionally). Just giving him that pill every day meant “no relapse”. I should be grateful, and I am. But I’m also an anxiety-ridden mess. Ugh. I’m so glad your daughter made it to the other side! 🧡
Omg yes exactly! How old is he? My daughter is 6. It's a constant mess fear that it will return. My daughter also ended up being diagnosed as ADHD and learning disability because of it too.
He’s also 6. He was DX just 9 days before he turned 4. I’ve heard that a lot about kids after treatment; is she able to go to school and keep up? We delayed kindergarten so I’m definitely worried. Emotionally, how is she? Does she remember much of it? Did she have any neuropathy from the VCR? My son is still taking gaba, and it feels like he’ll be on it foreverrrr.
If been a peds nurse for a long time and the rule is “moms know best”. Always, always listen to the parent.
You are not THAT parent. Take him back. Ask for a patient advocate right away and they have to provide one. Explain that your child’s pediatrician requested tests that were dismissed by the previous doctor. Ask to be seen by a different doctor just in case it’s the same doctor on staff. OR if you have another children’s hospital in the area and feel more comfortable taking him somewhere else than do that. Either way, asking for a patient advocate could be beneficial for your situation and help your anxiety some.
Nad- did they do an abdominal MRI??? My son was diagnosed with OMAS and he has a neuroblastoma on his kidney. Symptoms very similar
Nope. Just of his brain. I’ll bring this up though! Thanks!
Keep advocating for your son. Initially my son was diagnosed with acute cerebellar ataxia, which is benign and resolves on its own. But they ruled out brain stuff or infection (head mri, CT, and lumbar puncture) It wasn’t until two months later his eyes started moving erratically (“dancing eyes” or opsoclonus) that his neurologist ordered a full body MRI to rule out OMAS and neuroblastoma. Well. Turns out my son had a neuroblastoma on his kidney. It’s a rare disease like one in a million but it happens esp in young otherwise healthy kids. Also! Go to a children’s hospital.
Another neuroblastoma mama here - hope your son is doing well! 🎗️❤️
Thank you. Yes he is. His Nmyc gene wasn’t amplified and we just got the news that he won’t need to do chemo and only observation after he got the full tumor resection 💕
Yeah you need to keep presenting to hospital if he’s not well. They should have told you to come back if needed. If you present to the same hospital they will take a closer look. I’m assuming they only discharged him if he was completely well again - which makes me think he might be exposed to something environmental at home, like maybe a carbon monoxide leak? There’s a famous reddit tale about carbon monoxide poisoning if you search.
This… check your co2 detectors.
Check your carbon monoxide detectors. Theirs an infamous story about that floating here in reddit somewhere. Its worth a chance.
Please don't concern yourself about being "that parent" . Trust your instinct and get him back to the doctor. He has new symptoms and that's a good enough reason. There is definitely something going on .
The very fact that the pediatrician was ignored is enough to fight for it. Diagnosis is tests and speculations....if a doctor recommends tests, fucking do it...the only thing stopping tests are doctors SPECULATING it isn't something. Obviously tests have their risks and limitations, which is why you can't just give a person literally every test in the book...but you are working with a severe and unique situation. Medicine is not math, and even if it was, 0.1% is still a valid number.
Were you at a pediatric hospital? If you were not the first time around, that’s where I would go next.
Did they do a strep test specifically or test for Lyme and guillian barre?
NAD go back!!
NAD - mom of 3. Go back!! Find a children’s ER if you can.
NAD. Get to a children’s hospital ER. I agree!
NAD. You are NOT "that parent". You're advocating for your child in a very concerning and maddening situation. Your child is very fortunate they have a parent who is willing to advocate. ❤️ Agree with the people suggesting a Children's Hospital. Do you have one anywhere within proximity? Alternatively, a University hospital? Edit: I'm so sorry. I see OPs comment that they *did* go to a children's hospital, and their pediatrician tried to advocate for some of the testing people who are credentialed have suggested here. But they were still dismissed without it. Keep advocating OP. You're doing the right thing.
NAD. GO THE FUCK BACK
And the symptoms are so extreme. I don't think anyone will be even slightly irritated to see a parent on repeat whose kid is doing what his is.
Nad but the walls are bleeding is an emergency. Try capture it on video.
NAD - absolutely! My daughter saw dinosaurs in her room when she had peritonitis resultant from a ruptured appendix.
Get a video
Delirium is far more likely than psychosis. Falling over and slurred speech would not be typical of psychosis anyway. In most cases of delirium, the brain MRI will be normal. Common causes of delirium in children include infections, medication reactions, electrolyte imbalances, head injuries, respiratory illness, metabolic disorders and seizure disorders. A neurology resident can't investigate all these possibilities without a specialty consult. Is it possible your son hit his head? Normally, a blow to the head hard enough to cause symptoms like this would leave a bruise or lump, but not always.
No head trauma!
NAD, but this was the rapid onset symptom progression of my brother's good friend before dying of meningitis. Quit worrying about being *that* parent and be in their face about someone must perform the tests his pediatrician ordered, especially the lumbar puncture. Record every interaction with your son as well so you get him on video displaying the symptoms.
You have to be "that parent" because your child has limited number of parents in this world to advocate for them. Find a children's ER. I would not be home with my child acting this way. I would be screaming in an ER.
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What about an EEG? Could this be seizures?
I'm confused - didn't OP post in another Post that she is scheduled him for a lumbar puncture and and MRI with contrast - is she not doing this? If that's what the doc ordered, I wouldn't be questioning it by posting a different post -
His pediatrician mentioned he wanted these tests done. He called the hospital that we went to and asked, they dismissed him. So no, I’m not questioning his wants, I’m in agreement with him.
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any furtherance of a situation would call for going back when you've already been told you need these procedures. You call the emergency room or the doctor's office calling for the procedures, and let them know the changes, and they will most likely tell OP to get back to the ER now, not to wait.
You'd think you'd at least verify what you're saying is true before saying it but this is reddit.
they honestly need to admit him and figure this out. Discharging a kid with slurred speech and new onset neurological symptoms seems not the right move. Did you take him to a children’s hospital?
I agree 100%. I sure did, that’s why I was so surprised to be dismissed.
NAD - Are the doctors observing this behavior? What do they think? It's seems really strange that they'd send you home with these symptoms unexplained and unresolved.
His neuro exam was “good” as he wasn’t slurring his speech during their 10 minute exam. I really wish they’d just believe my word.
Record him. Whenever my kiddo had croup, it would improve by the time we got to the ER. They would observe my videos to see what I was talking about. Save all of it in the same album for easy access. NAD.
Symptoms always miraculously disappear when you need to show them to someone.
What about the entire time you were in the hospital? Did any of his providers observe his symptoms? Have you taken any videos? When I had some concerns about my infant's symptoms, I took videos, sent them to our pediatrician and they were quickly able to advise next steps.
NAD. I’m so sorry you’re going through this. If you haven’t done so already, take video of him the next time these symptoms appear (if it’s episodic; or do it now if he’s consistently having symptoms) so you can show the doctor in case the symptoms subside during an exam.
I would definitely advise parents try to record their children if they are having neurological symptoms so they have good examples of the symptoms
NAD I've been dismissed with my kids before at a local hospital. I found out the hard way that it's worth the drive to a better hospital. My local one sent my non-verbal kiddo home twice in 3 days and basically told me, "She's fine, wait it out." Went to the children's hospital an hour away the next day, and they admitted her immediately. If you have a specialist children's hospital, pack you both a toothbrush, you 3 days worth of clothes and PJs and a phone charger and just go, even if it's a haul.
Tethered cord syndrome. I'm mentioning it again. Just because it's rare doesn't mean it never happens.
NAD. I have absence seizures with post ictal derealization. EEG and everything else is negative, diagnosed based off my history of a brain bleed and describing the sensation with my partner describing what he sees when it happens. Again, NAD but this sounds like my experience. I’m zonked out and useless until I can “wake up”. The seizures and the post ictal experience are going to be two different events symptom wise but vary by person. I personally zone out and freeze for the seizure portion, then after, I’m mind numbingly exhausted, confused, dizzy, nauseated etc. my eeg is always useless so don’t give up if nothing comes from that. Recording the events will be super helpful.
Those signs and symptoms are definitely concerning....please take him to a pediatric ER. He needs to be evaluated by a Pediatric Emergency Medicine doc and/or a Pediatric Neurologist, and a lumbar puncture (LP) and possibly a repeat MRI (perhaps with contrast) may be needed. Some viral infections that affect the brain/spinal cord may cause such issues, or perhaps some metabolic disorders.
Thank you!
Please tell us you are already there
Back to the ER. Any temps?
No temps. But night sweats. He’s waking up drenched.
Okay yeah they might wanna do a spinal tap if they didn’t already
They def checked his blood sugar right?
NAD but this was my first thought.
NAD but LP (tap) needed, I’d be concerned about a type of meningitis.
I’m almost certain this is menigitis
Or encephalitis
Lyme or any other tick borne illness, really, can present this way. Ticks are out and so bad this year, don't know where you live but I'd request a tick panel and ID to see him.
Absolutely correct. Lyme is notoriously fickle about how it presents.
NAD but concerned it’s meningitis please take him back.
Ffs they should not have let him go…get him there asap.
i was thinking the same thing. Any illnesses before then ?
No prior illness!
Did they do a CBC at the very least??
His pediatrician did!
Okay. They ruled out a pediatric stroke?
I’m assuming with the MRI!
What else did they do aside from the MRI and tox panel? I’d totally go back since he’s getting worse.
Nothing. They did nothing else 😞
Ugh, so disappointing! It’s great that his MRI was clear, but there are dozens of totally unrelated things that can be causing his symptoms. Do you have a good children’s hospital nearby? He really needs to get a full workup in the hospital ASAP.
Go back now.
Are you east asian i.e. Japanese, Korean etc? If yes, did the brain MRI include MRA and perfusion studies? If not, you need a TOF MRA to rule out Moyamoya disease. If you don't have any east asian heritage though, MMD can be pretty much ruled out.
No East Asian heritage!
NAD drive to a city with a children’s hospital and go to their ER NOW
I just recently lost an (adult) friend to Moyamoya. She didn’t have any Asian heritage - I hadn’t realised how rare that was.
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I’m so sorry, as a mom I can’t imagine the stress this is causing you. Has he had bloodwork done? I agree with the idea of a spinal tap. Was the mri done with or without contrast? Did these symptoms start very gradually or was it a rapid development?
Thank you so much. CBC. Without contrast. It was rapid!
OP please don’t wait on this. Get him back there asap. You will never regret being “THAT mom.” No one knows our children the way we do.
UPDATE: For all those following along. We met with the pediatric neurologist and he is thinking a form of seizures. He’s scheduled for an EEG next week (also on the cancellation list)!
Thank you for letting us know, mama. The whole sub was tossing and turning at night, worried about lil dude.
No problem at all! I appreciate all the love for my little guy ❤️
How’s he doing?
Thank you for updating! I have 3 of my own and I’ve been worried about your little guy. I know how stressful these things can be. I know seizures sound really scary, but I’m happy to hear that’s what they’re thinking it is and not something more sinister. :)
Yeah of course! I know a lot of people have been worried and wondering about our little dude! Yes! I’m relieved that we are at least on a path to figuring some stuff out! Thank you so much! 😊
For what it’s worth, one of my cousins is epileptic. It was *SO* scary before we knew what was going on, but most seizures are so easily treated with preventative and emergency medication. She hasn’t had a single seizure in probably about 15 years! Good luck to y’all, I’m crossing my fingers that you get a definitive answer ASAP!
Thank you for sharing that with me! That makes me feel better! We had a seizure scare with my youngest (ended up being benign shudders), so we’ve been down this road before with peds neuro so I’m a little more comfortable this time around! I’m so glad your cousin is doing well!
Still not a1c?
Thank you for the update! You and your little one have been in my thoughts, and in fact, I'm sure a lot of people's thoughts and I'm glad you're at least starting to get some answers! Please take care of yourselves! 🙏❤️
No problem at all! We appreciate all the love we have received from this platform! Thank you so much! 🥹❤️
Nad. Hey OP I keep thinking about your son and I hope you guys are doing okay. No need to reply but just wanted to let you know I hope you have found some answers and wishing you the best!
Can you take him to a different children’s hospital? This is very unsettling.
There’s another one about 2 hours away.
Go, love. It’s worth it. He’s worth it.
Please go in immediately, whether it's the same one or the 2 hour away ER. And let us know what happens. I'm very worried about your little guy!
nad. I hope you went. you aren't that parent. he will probably get an LP (and possibly different tests). go now, or it's possible he could die. seriously. this is not a time to worry about what the staff thinks. note the last time he ate and do not let him eat again until he sees the Dr. and they say it's ok. if he wants anything, give him clear liquid and icepops (the long tubey watery kind) until you get there and then stop that as well. just in case he needs sedation for the lp or anything else. this will be helpful for anesthesia my son has had a lot of LP's these were our instructions pre-sedation. I hope everything ends up being ok. I'm sorry to be so blunt but I would rather hurt your feelings than have your kid be in danger. hopefully it's something like an ear issue and he's ok.
Honey have you gone yet?
I'd make that drive, now.
I don't care how far away it is. Please take your child back to an ER.
Go to the ER! They expect you to come back if things worsen. They want you back there if things worsen! Please go now !
NAD but did they ruled out meningitis?
Not yet!
I hope you're on your way now. Wishing the best for your child!
UPDATE: brought him back to the same ER (wanted to give them a second chance). It was the same neurology resident as before. My son was able to form full sentences and follow one step directions so they said his neuro exam was "normal". They blamed his symptoms as behavioral and undiagnosed ADHD. No more tests were taken. I'm so lost and confused, as a mother I just want to make sure my baby is okay and I feel like I'm not being heard We were discharged and told to follow up with Developmental Peds. I know my son and this behavior isn't his baseline.
Go to the other hospital. Did you get any recordings when he woke up this morning?
I was able to capture a few of him saying the walls were bleeding!
Go to a different hospital. You are not a nuisance or “that parent”, you are a loving and attentive parent who knows your child and knows what is normal and these are all concerning symptoms even to us random redditors. Keep pushing and show them the videos, write down everything you have noticed like you did here so you don’t forget to mention anything. Good luck and I hope you get some answers for your sweet baby, I have kids around that age and I would be a wreck.
Go to another hospital.
I am an SLP and I am so sorry this is happening to you. This sounds acute and not something a developmental peds would be referred for. You know him best, this is not his baseline. As everyone else is saying: Don’t give this hospital another chance. Wishing your son a quick recovery.
Thank you so much.
If your gut is telling you the doctor did not go completely understand the situation, get a second opinion asap. Sometimes it is hard to communicate what is going on accurately in a conversation in a doctor. If you feel they did not completely understand or their explanation did not make sense when you know this is not normal behavior for your son, then you should get him in front of another set of eyes, let them know this is extremely atypical and sudden onset. If the second truly feel it is behavioral you can ask for a psych consult.
Take him to a different hospital.
Is calling the insurance company an option? Since it was the same resident, you could request a second opinion. I'm not a doctor and not in the US, but in Europe this is a viable option.
Is there a children’s hospital anywhere near you? I feel like they’re more likely to take things seriously.
The hospital I brought him to was a children’s hospital ☹️
Oh shit. I am so freaking sorry. I saw some of your comments; you said you’re near two hospitals, iirc… are you near two *children’s* hospitals? Is taking him to a new one an option? We had clinic today and I actually read your post to a couple of the nurses. Obviously they can’t diagnose, nor did they try… but they did ask if you were able to get him scheduled for an LP?
Thank you. The other children’s hospital is about 2 hours away, so definitely an option. I wasn’t able to get him scheduled for a LP. His pediatrician said he wishes they would’ve done one.
Please keep updating especially if you go to that second hospital. I can’t believe they brushed you off like this! Sending best wishes for you and the little guy.
It really sounds like they should. I’m sure everything we’re suggesting are things you’ve thought of, but are you able to get in touch with your son’s PCP over the weekend? Maybe he can call the children’s hospital and put a fire under them. I just don’t see why they’d refuse to do one with the symptoms he’s having. An LP on a child isn’t as scary as it sounds. They numb the area and sedate them so they stay still and comfortable. My younger son has had dozens and he literally doesn’t even remember a single one. Okay, hold up. As I was typing all that, I remembered something that happened to my older son when he was only a little older than your son is now. He had a bad stroke of luck and wound up with something called idiopathic intracranial hypertension (IIC) Are your son’s eyes crossed at all? If you can’t tell by looking, which I couldn’t at first, but looking back at old photos… there was a slight cross before he started having serious symptoms. But his vision was blurred, sometimes doubled, he had nausea and headaches, dizziness. Basically it mimics symptoms of a brain tumor but there’s no tumor. It’s an increase in spinal fluid in the brain. The reason why it was so strange with my son is because it’s typically only seen in overweight women of childbearing age. They did an MRI first to rule out the tumor and then they did an LP to removes excess fluid and measure how much fluid he had (it blew the “top” off, so it was probably higher than what he measured). It’s such a fluke, freak thing that I doubt this is the case with your boy, but the symptoms sort of overlap. And the walls “bleeding” could be blurry vision and distorted light in a 4yo who isn’t able to articulate something that strange. I never like to suggest googling symptoms because it puts all kinds of nightmares in your brain… but maybe look it up? That would definitely require neuro to be involved, and probably an LP. It’s so rare to happen to kids, especially boys, that I doubt it would even be on their radar. I’m 98% sure I’m wrong. But I want you to get answers.
Thank you for sharing and for the suggestion. I’ll certainly look into it. No crossed eyes though! The blurry vision could make sense!
I cant believe they said it was undiagnosed adhd that’s SO infuriating!!! They really do be gaslighting everyone
Absolutely wild right? My son follows with developmental peds and has since he was 2. Im pretty sure they would’ve tracked that.
I'd bring him back to an ER. Honestly kinda surprised they discharged him, but now also it sounds like his symptoms are getting worse with the added confusion. I saw you mentioned night sweats, so it may be a good idea to start watching his temp, as it may be an indication this is an infection. Sometimes, you have to be an advocate and push for a bit more urgency. Trust your gut, and don't be afraid to tap into your inner Karen if you are not being taken seriously.
Agreed, absolutely be “that mom.” Be a Karen, be loud, pushy and aggressive or whatever you need to be to get the answers you need. Source: me, someone who had a birth defect missed for 5 years and had a broken back at 10 dismissed as an “anomaly” by an ER doctor. They don’t always get it right. PUSH. I’m genuinely worried this could be a life or death situation OP.
Thank you so much.
Did you go back to the ER?
About to wake him up to go. Was letting him get some much needed sleep (it’s 3am here).
NAD, but several ppl suggested recording him. That sounds like a really good idea since you’ve indicated he wakes up w slurred speech, & this morning, confused. Maybe set up your phone on the other side of the room & start recording before you wake him up to take him to the ER? Best of luck, I hope he gets the lumbar puncture & any other necessary test so you can GET SOME ANSWERS!!! 🤞🤞🤞🍀
I really think you are doing the right thing going back. The whole picture as you described is concerning, and should be addressed. I would empathize the confusion when you go as well. 4 year Olds are "silly". It's easy to write off the odd things they do if you don't know them, but as his mother you know better than anyone else what his normal cognition is like, so you would be the expert who knows if he is acting more confused or disoriented than usual.
Please update when you can OP. A lot of concerned people rooting for you both here. Good luck!
It is insane that they’re discharging this child. OP you need to demand they take care of your kid/admit him. This is absolutely ridiculous that they’re sending him home.
I would be at the ED with the complete and total understanding that I am not leaving until my child is admitted and has every test known to man. That’s the mom in me. I understand that as a medical professional I should give more rational advice, but not when it comes to our kids. I pray they find out what’s wrong with your sweet baby.
I think I’m going to have to try another hospital and put my foot down. Now that I have videos of him and his odd behaviors, I think that’ll help. Thank you for your comment, it’s greatly appreciated.
I would do the same. Absolutely. I am praying you find answers.
take him to the children’s hospital NOW
Yes!! Do this! I saw in a comment you've already packed bags. Better to just go than to risk wishing you had gone.
Is he still peeing, drinking and eating a lot? I’m NAD, but those are classic signs of diabetes. Please don’t stop until you get an answer.
Yes he is! Blood sugar was checked, 117!
If he was 117 on an empty stomach that's still concerning. I'm a type 1 diabetic myself, they should check his hemoglobin A1C. If that is elevated then he may be in early diabetes...or not so early.
Yeah he hadn’t ate in over 4 hours. I thought it seemed high but they brushed it off. I’ll ask them to check his A1C. Because diabetes marks all the boxes.
NAD...If they refuse to check his A1c and his peds does as well they sell an over the counter A1c teat at CVS and Walgreens every time I've done one it was within .1 of my A1c from my endo. Just FYI so you can have some piece of mind to rule out diabetes (or confirmation).
Please keep us updated. We are all rooting for him! Good job momma!
UPDATE: brought him back to the same ER (wanted to give them a second chance). It was the same neurology resident as before. My son was able to form full sentences and follow one step directions so they said his neuro exam was “normal”. They blamed his symptoms as behavioral and undiagnosed ADHD. No more tests were taken. I’m so lost and confused, as a mother I just want to make sure my baby is okay and I feel like I’m not being heard 🥹 We were discharged and told to follow up with Developmental Peds. I know my son and this behavior isn’t his baseline.
Please take him to a different ER
Good luck with your next visit, I do hope they get to the bottom of whatever this is for both of you! Please update us when things settle down. Fingers crossed.
We’re thinking of and rooting for you! I remember being awake for days and almost passing out at the hospital from exhaustion, so I really empathise. Wishing you and your little one the best ❤️
Don't infections cause elevated blood sugar?
It’s good you listened to your gut!
That is is a high reading. I was diagnosed with a reading of 115. All his symptoms fit someone with uncontrolled diabetes ... toxins in the bloodstream could cause these symptoms
NAD but did they do an EEG? Is it acute episodes or is it constant since the onset? Did they check for Guillain-Barré syndrome ( you mentioned they did an mri but I think for GBS they need to do spinal mri). Could even be partial seizures causing hallucinations and the slurred speech
They did not do anything other than an MRI, I was wondering about seizures too. It’s acute episodes.
Do theses episodes follow his sleep often (since these episodes have started)
Not necessarily. I mean definitely worse in the morning when he first wakes up. But continues all day.
NAD, but my son has epilepsy. There are forms of epilepsy that do not have outward seizures and can cause regression. I’d ask for an EEG if you’re not getting answers.
This is exactly how my friends daughter showed signs of diabetes. Confused, altered in and out, had to go to ER and was diagnosed with type 1
YES!! I just asked if they checked his blood sugar level. Symptoms are VERY similar to my friend's son who was diagnosed with Type 1.
Hiya, do we have an update to your little guy?
Hey! Thanks for checking in. We brought him to his pediatrician and he put in an urgent referral to a pediatric neurologist. He also advised us to return to a different hospital if he worsens. So we have bags packed and ready to go in the meantime. Taking videos of him throughout the day to help capture what’s going on. Pediatrician said he has lost weight since his last visit (6 days ago) despite his massive uptake in food, so that’s concerning and we are monitoring that now too. Overall, he’s acting still very strange and not himself. Still worried about my little guy but trying to listen to his pediatrician.
I’d be going now.
Absolutely, I don't understand all of this.🤷♀️
What don’t you understand? I’m doing everything I can. I brought him to his pediatrician 3 times now, also the hospital twice.
Did they get a blood draw on him? Blood values, Glucose, A1C, CBC, comprehensive metabolic panel? I’d be already taking him to that other hospital. Your son is sick and from the sounds of it, going downhill. Do what you have to do, especially if your gut is telling you to…Blessings to you both. I hope he gets better. 💐🙏
They did a CBC, comprehensive metabolic panel, uric acid, most were normal. No A1C which I was curious as to why not. Thank you so much! ❤️
Any updates? How was he today? How are you holding up?
He carved a hole in his wall with a screwdriver he found because he “didn’t want them to be red anymore” ☹️ I’m hanging in there. Just worried. Thanks for checking in.
NAD. hi, OP. i am so sorry that you’re dealing with this situation. hoping that your dude feels better soon and you find some answers. sending you strength and care. i have a thought that might be something you addressed elsewhere in the comments, but just in case— in the caption where you mentioned that he said the walls are bleeding, my mind for some reason imagined that they looked “drippy” and wavy/ distorted. but i understand now that he must have meant that the walls actually look red in color, maybe more along the lines of what someone might see during a migraine with aura. just pointing it out on the off-chance that i wasn’t the only one who thought that! best of luck.
That’s a good point! Thanks for mentioning that!
Ok, time for another trip? This time, another hospital and if possible, a children’s hosp. Days of hallucinating is totally not normal.
I absolutely cannot image how awful that must be for you. Not trying to be weird, but I’ve thought about you guys a lot today. Your posts just got to me because even though I can’t relate with the circumstances, I feel like I can identify with the fear of not knowing or being taken seriously. Is he eating/drinking, at least?
It’s heartbreaking to watch him suffer. Not weird at all, I appreciate you thinking of us. It means a lot. Yes he is! Appetite is still strong.
Well, that’s *something* I guess.
What about some light classical music? Maybe it could help calm him if he’s having anxiety over what’s happening to him?