Going insane. My (4f) daughter has been throwing up 10-30 times daily since 08/08/2026 (small to now larger volumes.

[u/Mommasaiddatsofddebl]

My (4f) daughter is 42 inches and 62 lbs (she started august at 69lbs). Yes, she is tall for her age and her weight is in the upper bmi. I have attached test results I have been given access to. Please help. Her doctor and myself are going a bit crazy. I will try and explain this as concisely as possible. Will note here this is not an “emergency” as we are under the care of her pediatrician, have been to er, have a ped GI and are staying hydrated. Not an “emergency” but very much a detriment to my kids quality of life.

Her ana was extremely high then the next negative. ANA: 5.8 — POSITIVE/HIGH Later ANA multiplex (9/29/26): NEGATIVE

1. 08/01/2026 We will call her Jo (4f), Jo had a bad cold. Managed with rest and home care. 08/03/2026 Joe started to vomit. I assumed the cause was mucus from her drainage. 08/06/2026 the vomiting progressed until she could not even hold a sip of water. Took her to urgent care.

2. 08/06/2026 Urgent care diagnosed fairly severe constipation. Recommended a clean out protocol (miralax, senecot and a glycerin suppository). This worked a bit and she passed some stool. She did not lessen volume or frequency of vomiting (at least twice and hour). Took Jo to ER. They did reveal exam. Still had some poop. Doubled miralax. Between that and the physician exam she emptied her bowled over the next few days.

3. This is the next phase. around 08/12/2026 the constant commuting ceased. She could drink miralax mix with juice, pedlite and water without vomiting. However, any solid food including apple sauce, she began to vomit 1-4 times after consuming. Usually within 10-20 mins the first bite but always within 1 hour of food. This pattern has been going on from 08/12/2026 until yesterday 10/04/2026. That is when the small easy, gently non retching vomiting turned to, I don’t know how else to explain but like the exorcist style vomit. Just spewing forceful liquid and undigested and some digested food from her mouth. Like a comedic scary movie.

Before this, the vomiting was gently. No wrenching. Almost like baby spit up but just a bit more forceful, and more volume. She would often just hold it in her cheeks and make her way to the trash/toilet.

over the last week she’s had a harder time making it to her vomit bags, the trash, the toilet and it just comes out. I can not express how gentle the vommiting, until yesterday had been. The theee doctors who watched her vomit were very intrigued by the gentle vomiting. Like a little butterfly vomit.

She has far less energy and stamina than before. She has to take breaks when playing. Asks us to hold her when walking. She had structural bilateral clubbed feet and that sometimes causes her to be uncomfortable on her feet for a long time. She now complains of tiring and just asks to go lay down for a bit mid playing.

We come from a very small ethnic pool, her bio father and I. We both experienced pedigree collapse in our family tree. Family history is a novel but I have info on all first, and second degree relatives.

Her half brother, paternal, brother has soemthing similar to Osteopetrosis we only found out was not that once his genome was researched. It’s closer to Craniotubular dysplasia, Ikegawa type (CTDI), associated with pathogenic variants in the TMEM53 gene. That’s the ultra-rare sclerosing bone disorder that seemed to fit his progressive skull/skull-base bone overgrowth and optic-nerve problems.

Jo shares similar apparent phenotypes (small nose, large head, “thicker” bones”) and we are seeing a geneticist next year (first available). To rule out any emergent or immediate concerns about skull growth, she seen an eye doctor and did a more invasive test to test pressure and see being eye etc. Beyond a minor vision concern not needing glasses, the eye doc said she’s fine in that respect.

A note here, she has failed hearing test, twice. Then a few weeks later passed it. The auto hearing test nothing to do with her actual input.

Mostly because she dealt with doctors weekly and casts and boots and bars from basically birth, she is very shy of complaining of ANY ailment or pain. When she says she is in pain, it’s most likely understated. She has the constitution of a 72 yo farmer from the midwest.

many, many tests have been ordered. Blood tests. So far, common food allergies ruled out. Alpha gal ruled out. Diabetes still possible, but not likely as of the results.

Her thryoid is not “healthy”. I have a history of puberty onset hypothyroid after undiagnosed graves growing up. As far as I am aware the only juvenile thryoid issues would be the child of her fathers first cousin. But, that child, would be quadruple related (pedigree collapse) in varying degrees.

Another note, her paternal line has an issue they overproduce calcium. Her father and first degree relatives often have calcium stones in body and brain.

Before this she was very healthy, average active level, she’s a sassy kid, but nothing clinical or developmentally that either I nor her doctor has caught. She has been extremely moody the last month (which I get she’s sick of puking). The only cognitive even possible issue, she’s never been able to put her own shirt on. Never could manage her arms correctly. Is that coordination or another issue i’m not sure.

She has a mild speech impediment we are going to seek therapy for once she turns 5 late winter. She had a tongue tie we fixed the first few months. That surgeon recommended waiting and seeing if therapy could help instead of cutting or performing a more invasive surgery on the “posterior” tongue tie.

She was born 4 weeks early and weighed a few ounces shy of 9lbs (won’t post exact it be very easy to identify her there was a cute write up about her locally). She had no real issues due to that. She pneumonia early on and flu b around 8 months which was severe and resulted in a week hospital stay (right after her double achilles surgery).

Beyond this and the clubbed feet, she has no other known medical issues. No allergies to medicine or food. Very little seasonal allergies or sinus. She is generally very very healthy and doesn’t usually catch virus or even the cold often.

She was a late potty trainer. But is fully potty trained. Does not wet the bed at all and has not since about 6 months into losing the pull up ( a year ago).

She is hungry right after she pukes. Vomit. “Mommy can I have an apple”.

We’ve done the food exclusion thing. No dairy two weeks. No wheat two weeks. No change. And blood test ruled out celiac. No foods affect the volume or frequency. She will vomit just as quickly and just as much if she eats a cracker as she will if she eats pizza.

Please let me know anything to tell her doctors. She has a wonderful, hands on ped doctor. Her doc is also stumped. Every doc is stumped we have seen so far.

The GI doctor working diagnosis is gatropresis. As of now, two weeks into the newest med erythromycin, nothing much improved. For about a day she did go three hours without vomiting (about a week into this treatment). Now she is vomiting the same frequency. And since yesterday this water spew demon type thing.

The extremely elevated first ana followed but the negative secondary test, contradictory are also a big road block stumping her docs.

No otc the meds have helped any No prescription anti nausea meds have helped at all

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[u/WreckedEmKilledEm]

This sounds like classic rumination syndrome, to be honest. If it's starting after a few bites of food, then there's really nothing else that will cause it. Some patients with rumination are having a behavioral response to an underlying motility problem, like gastroparesis. This pattern is particularly common in children that have underlying sensory processing deficits and/or autism spectrum disorder. You are right to pursue a genetic diagnosis, but also consider a formal developmental evaluation, since she has delays across several areas.

If the GI doctor has a working diagnosis of gastroparesis, is this based on any testing? Solid phase gastric emptying study? Endoscopy? Upper GI series? Usually these are helpful to clarify things when it's been going on for a long time. Also, if EES isn't working, I'm more doubtful it's gastroparesis (at least not on its own).

If it's rumination syndrome, and other things have been ruled out effectively (which in my opinion is needed if one is going to diagnosis it), then the treatment is largely focused on a few medications to help and most importantly seeing a pediatric psychologist with experience with this disorder. This is almost exclusively going to be at a children's hospital with an experienced GI service.

[u/bluebellsea → u/WreckedEmKilledEm]

NAD but my friend’s kid had this and as soon as it was identified and treated, it only took a couple weeks for HUGE improvements and now he has no symptoms

[u/UnremarkableM → u/WreckedEmKilledEm]

NAD but one of my daughters had this after a bout of flu A. She couldn't keep even a sip of water down for days, ended up admitted for 3 days for fluids and monitoring because her dehydration was causing wildly low blood pressure, low heart rate and very concerning bloodwork numbers for her kidneys. Zofran through her IV worked the best, and then we were able to very slowly reintroduce easy foods (toast/ pancakes, chocolate milk, popsicles, strawberries- only her very favorites/ easiest foods) She couldn't go home until she was eating SOMETHING reliably, once the fluids helped her bloodwork look better. It took her months to resume eating "normally" (in quotes because she has ADHD and SPD and her eating won't likely be totally typical, ever)

[u/scienceislice → u/WreckedEmKilledEm]

NAD but what about esophageal esophagitis? I had a friend in high school with this, her little brother had it too and it was so bad he refused to eat for a while to the point they had to get him a GI tube. 

[u/WreckedEmKilledEm → u/scienceislice]

That's on the list for sure! Needs an upper scope to diagnose.

Eosinophilic esophagitis, but I like the term you used better.

[u/scienceislice → u/WreckedEmKilledEm]

Whoops that’s my bad, it’s hard to remember sometimes lol 

[u/Mommasaiddatsofddebl → u/WreckedEmKilledEm]

thank you for taking the time to reply! Her GI doc did not do a scope or any testing of his own and recommended trying the Erythromycin for two weeks then going from there. Does not seem as if it had helped but she does have a few days in the two week trial if that matters any. Her ped preferred a scope test, but not something we have avaible in our small town (we drive and hour for a ped gi at a satellite clinic for a larger children’s hospital and about 2 for a children’s hospital but we can make the trip honestly daily if we have to, have help for my others kids in school).

I will pass this on to my daughter’s ped. Jo has never had a formal evaluation but your input does led me to believe it would be beneficial.

I hate to guess at mental diagnosis I am a programmer and not a doctor or even very well versed in medical stuff beyond my kids, but I have suspected Jo has some neurodivergent tendencies that I did not notice in my other two kids. Some minor aversion to certain noises and other sensory issues very minor but def haven’t gone away as she aged. I will ask her ped about a formal assessment. Thank you so much!

[u/WreckedEmKilledEm → u/Mommasaiddatsofddebl]

There are no mental diagnoses. Only nervous system diagnoses. And there are TONS of nerves in the stomach.

[u/boogerybug → u/WreckedEmKilledEm]

Does rumination syndrome happen in younger children or infancy? Honestly, just curious. I’d have never thought of a 4 year old have rumination.

[u/WreckedEmKilledEm → u/boogerybug]

Oh yes! In the Rome V diagnostic criteria there are specific indicators for both infant/toddler and older child rumination syndrome. It’s almost always complex, and we no absolutely jack about the physiology, but the pattern is fairly common (although I admit literal referral bias here).

[u/boogerybug → u/WreckedEmKilledEm]

Thanks for the response. Good to know! I hopefully won’t ever have to apply it to my job or home life.

[u/welltravelledRN → u/boogerybug]

Yes, even babies can do it.

[u/Mommasaiddatsofddebl]

nad ^ sorry for typos i’m on my phone and honestly a bit delirious this has been going on so long and barely slept worried she may choke or become more ill during the night. not sure if i need to add but im her mom 36(f) 6ft 195lbs.

[u/defrostedbones → u/Mommasaiddatsofddebl]

NAD but i presented this way all of the sudden and i was diagnosed w Ulcerative Colitis. pls make sure she gets a scope as soon as possible!!

[u/Mommasaiddatsofddebl → u/defrostedbones]

thank you. I am sorry you have to deal with that. I think I may try to get into a larger town directly at the children’s hospital and see if that is a more timely way to get a scope and a few other tests. This whole thing has been very confusing and a mix of odd results and symptoms. She does often get unknown cause rashes but she’s usually otherwise healthy and they are always transient there for a bit then boop fine. thank you.

[u/defrostedbones → u/Mommasaiddatsofddebl]

definitely go to the children’s hospital, that’s who figured it out for me (i was 16)

[u/one_sock_wonder_ → u/Mommasaiddatsofddebl]

NAD I have had gastroparesis (secondary to a rare genetic disease) and horrid reflux since childhood. I have had episodes of vomiting in my sleep without waking up. I have found making sure to sleep with the head of the bed quite elevated, only having a very small bland snack after dinner and having dinner a number of hours prior to going to bed to be helpful. I have also layered bottom sheets with a plastic "bed wetting" sheet, disposable or washable "chucks" (large highly absorbent pads for a bed), then a standard bedsheet and repeated for several layers. That way cleaning up vomit in the middle of the night is just removing the top layers and putting them in a bag to wash in the morning and then you are all set. Layering pillowcases can be very helpful too.

I have had reflux cause minor little mouthfuls of stomach contents without nausea or wretching and also cause a good recreation of the Exorcist vomiting pea soup scene. Is she nauseated before she vomits or is it without any warning?

[u/a_girl_called_toby]

Given the thyroid antibody levels I would suggest finding a pediatric endocrinologist, hypothyroidism can slow down metabolism and cause constipation. I don't know if the vomiting would be from slowed gut motility though.

[u/Mommasaiddatsofddebl → u/a_girl_called_toby]

thank you! I have always had thyroid issues and generally most of my own minor to moderate “iissues” root to my thyroid and mostly resolve when properly regulated . I have her in a waitlist for a childrens endocrinologist, but I think it may be better to expedite and go to a larger town a few hours away. I wondered if she had very young gall bladder issues. I presented with gallstones as a 15yo athlete who ate “clean”. Ended up due to swelling from severe hypothyroid. Do you them severe enough to warrant a kidna bypass and try to get her in a couple weeks sooner at a larger town? thank you!

[u/a_girl_called_toby → u/Mommasaiddatsofddebl]

Without knowing what her tsh and t4 are it's hard to say. Would be worth calling and asking though, explaining her continued constipation and vomiting to the office to see if they could expedite her.

[u/Lookingideal]

I think you’ve already received some great advice here so I won’t comment anymore on that aspect. I do want to say that you seem like a great mom and it’s very obvious you care about your daughter very much. She’s so lucky to have you and I hope that you can get everything figured out soon :)