Not Reflux, what could it be? Dr's stumped!

[Anonymous]

ok my daughter is now almost 10 months and since 1 month old we’ve been told she had acid reflux, so severe that she refused the bottle and has never fully fed without the help of a feeding tube. used to vomit 10-15 times daily. Constant hiccips, cronic couch, and TERRIBLE smell of poop. Medicines have had very minimal effect (Zantac seemed to work 1 week, omeprozol-nothing, prevacid compound and solutab-nothing, zegerid-nothing). Nutramigen and Neocate have done nothing. Because of the cough they sent her through a tour with ENT, and they saw nothing on their end and decided it was reflux as well. They urged us to do the reflux surgery (nissen fundoplacation) at 7 months since nothing seemed to be working. Well we are three months past the surgery and she cant vomit anymore, but she dry heaves every time she cries really hard, and some times just without warning. We were thinking EE, or some other EGID, but we have NO idea and she has stumped the doctors too. When we try to make her feeds faster (she’s currently on continuous 24 hours a day) she dry heaves more. Any ideas??? She hasn’t had any rashes of any sort so we didn’t think FPIES, although all the other symptoms do fit, and allergies run on both sides if the famiy. Thanks for your time!!!

[Anonymous]

if she has EE she should not have had a nissen fundo—–with EE you will still have problems after a fundo. did they do a scope and a ph probe before doing her fundo? alot of heaving can undo a fundo. is she able to burp since her fundo?

my daughter had really bad reflux–almost 25% of the time and her esophagus was getting ulcerated at 8 months. she had a fundo at almost 10 months. she cannot throw up, either, but she CAN burp. we were advised not to let her cry alot right after the fundo because she could swallow air and end up gassy and uncomfortable.

we have had no real complications since her fundo, except that she heaves when she is sick since she cannot throw up—she spits into a bowl instead, which seems to satisfy her. she just turned 8 yesterday. right after her fundo we were given phenergan suppositories to use when she got nauseated since she could not throw up.

i’ll check this post again later since it is about 4 am and i am not sure if i am really clear headed right now–been sick most of the day and woke up needing to eat something–hope what i have said made some sort of sence.

[Anonymous]

Thank you so much for responding! They did a upper GI (which actually came back negative) and scoped her trachea, esophagus and lungs, and said they didn’t see anything else it might be, so they still believed it was reflux. we asked about a PH phrobe and the (jerk) doctor said “well you can see that she’s refluxing, I don’t think thats necessary.” The reason they didn’t do a scope for EE was because they said some blood cell level (I don’t recall which one) was not as high as it would be with EE. Plus she’s been on neocate for 6 month, and they said if it was EE that should have helped, and we saw no change when she started it. I know that EE and other EGID’s have to do with allergies, but she never been on solid food due to a oral aversion, so we’ve never seen how she reacts to different foods. When we “practice feeding” she may have swallowed very minimal amounts but the rest just ended up on her mouth, so I don’t know if we would have seen and allergic reactions.

She seems to only burp when she is dry heaving really hard, but other than that we have to vent her G tube to let the excess air out. any more thoughts you have are sooo appreciated. Thank you! krenee092011-10-07 11:41:47

[Anonymous]

an upper GI isn’t going to show anything much–a waste of time and money in my opinion—unless they suspect something anatomically wrong. sylvia had two, one at 2 months old, and one about a month before her fundo–doc wanted to make sure she didn’t have any motility problems because if she did it would make a difference in the type of wrap he did–full or partial—neither upper GI showed that she had a hiatal hernia–neither did her scope.

did she have esophageal damage when they did her scope? didn’t they take any biopsies? if they took biopsies it would have shown if she had EE. a ph probe would have at least let you know if her reflux was acid reflux or just regular reflux—and it would have told you how many times she was refluxing and how long each episode of reflux lasted—i had no idea how bad sylvia really was until we had her scope and her ph probe done.

i’ve had 3 scopes done in the last 4 years to have my esophagus dilated–the first two times i had shotzsky’s (SP?) rings that had to be fractured—the third time there was no ring–but i had eosinophils—which i had not had the year before. when i looked at the report and mentioned that they were allergic cells–he said,”you probably know more about that than i do.”—at least he was honest about what he didn’t know, but, he didn’t pay attention to the note at the bottom that said eosinophilic esophagitis could not be ruled out–i had up to 16 eos per high powered lens—which can indicate EE—and it recommended follow up with a GI and possibly another scope. i haven’t followed up yet because we lost our insurance and just barely got it back–but i did ask the allergist about it. we talked about doing food allergy testing on me, but, when i talked to the ped gi that takes care of my kids, he told me that environmental allergies can also cause EE–he is also the doc that told me that if you have EE you should not have a fundo because you will still have problems–not exactly sure why, though.

i have had really bad reflux since i carried my twins–and they are 20–i have a hiatal hernia that i am sure i developed when i carried them—the surgeon that did my first two scopes never told me i had the hiatal hernia—and i had always suspected that i did. i have trouble swallowing food sometimes–it gets stuck and that really hurts until it passes. the allergy season this fall in our area has been bad and i have gotten hoarse several times when i have been reading out loud–i am wondering if this is caused by the EE—one night i had chest pain and felt like it was hard to breath. we’ve also dealt with esophageal thrush with several family members. also, reflux can be uncomnfortable even if it isn’t actually causing pain, because it feels like somnething is caught in your throat or in your chest. i’m mentioning all these different things just to give you some more ideas to think about and maybe check in to.

if i understand you right, it sounds like they did the fundo on your daughter without doing all the testing they should have—and because they couldn’t think of anything else to do?

[Anonymous]

Hi Christine

You are exactly right. They could have done a lot more testing, but it seems like they were just bent on it being acid reflux, and shame on us, we trusted them in that decision. They took a biopsy of her airway to rule out something to do with cellular movement, but I specifically asked if they test for EE and they said a GI Dr would do that, not ENT (who did the scopes).

They did the GI initially to check for abnormalities because she also has sinus inversus and heterotaxy syndrome- meaning all of her organs are on the opposite side from normal. But they said that it was negative for reflux. Its going to know that EE can be environmental because both mine and my husbands families have terrible seasonal allergies, but not much in the way of food allergies. Now that she has had the fundo, can they still do the scope for EE? I just HATE to have her go under again because her fundo was her 3rd surgery, At one day old she had a pace maker put in for congenital heart block, then at three weeks they had to close a valve in her heart that didn’t close on it’s own. This girls been through LOTS, and its really going to bother me if they didn’t get this right. They mentioned that she coud be heaving if the wrap is too tight, but I’d think after 3 months of heaving it should have loosened up by now? any suggestions on our next move?

krenee092011-10-07 12:59:00

[Anonymous]

the ENT should have taken biopsies when he did the scope. the biopsies get sent to a lab and a lab will tell you what they find. the surgeon that did my scope obviously did not ask specifically to test for eosinophils because he didn’t even know what they were–but the lab spotted them when they looked at the biopsies on a cellular level. sounds like your ENT was not on the ball—he should have taken biopsies when he scoped her esophagus—if he didn’t, there is no way that they could tell if she had any reflux damage, either.

telling you that her upper GI was negative for reflux is a joke–because an upper GI isn’t necessarily going to show reflux (or hiatal hernias).

they can still scope for EE—and they can take a look at her fundo and they can also check to see if she has any damage from reflux that might possibly be leaking through the fundo–but that is probably not likely if they are thinking it could be too tight. it doesn’t have to be a GI that does a scope for EE—especially since EE falls under allergies, which an ENT should know about because they quite often treat allergies.

i would suggest maybe trying to get a different pediatric GI. was her fundo done by a pediatric surgeon or a regular surgeon?

i wouldn’t worry about having her put under again for a scope–they put them under pretty light. our ped GI let me stay in and watch when one of my girls had her scope done–he actually had me help him by holding on to her hands because even though she was sedated, she kept wanting to put her hands up to her mouth during the scope—but she didn’t remember a thing.

i actually woke up during my last scope–but they put me back out really quick—good thing, because i would have been pretty upset if i had been more aware of what was happening.

if it were me, i would ask for copies of all of her tests. i would make sure and let them know that you want the surgery report that tells what the drs did during the surgery and the scopes—they write it out in detail. i would also ask for any and all lab reports, and i would ask for copies of the drs write up after the surgeries and scopes—basically his interpretation of what he thought.

i don’t even know your drs and i am really irritated at them.

i’m sorry your daughter has had to have so many surgeries. sylvia had to be put out for her scope and placement of her ph probe when she was 8 months old, then she had to have her fundo/hiatal hernia repair just before she turned 10 months old, then she developed obstructive sleep apnea and an inguinal hernia and had to have her tonsils and adenoids removed and her inguinal hernia repaired a week after she turned two.

i have had 5 kids with inguinal hernias–two of them had double hernias. they are supposed to be more common in boys, but i had 4 girls and one boy with them.

sometimes you have to be a little pushy. i got MRSA two years ago and i called the lab myself and went in and got the results because i wanted to know for sure if i had MRSA. it was on the weekend, and my doctor, after lancing, draining and packing my MRSA lesion, told me it was probably MRSA and said i didn’t need to come back in again to have it checked!!! i didn’t knowhow to take care of this oozing, contagious wound on my face or how to keep my family from getting it—i wasn’t too happy with him–but he did do a good job with my face—i only have a small scar above my lip–but i never got the feeling back in the area just below where the MRSA was–and it is right where the cup hits when you take a drink–can be a little bothersome at times.

let me know what you find out when you get copies of your daughter’s medical records.

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