New here - 3 children diagnosed "GERD" with no improvement from medication, now suspecting EE. ...

[vtbunny]

I came across this forum while searching for patch testing for allergies - and wow, what a great deal of information I'm seeing!  I have three boys, Ben (4 yrs), AJ (almost 3) and Thomas (8mos).  

Ben had an ulcer discovered at 9 months old through a upper GI (he has had 3 total) and all biopsies for EE came back 'normal'.  He has been on an extremely high dose of acid reducers and still appears to be refluxing (swallowing/gulping).  We discovered a milk allergy when he was 2 (through blood and skin pricks) and it was removed from his diet until he was 2 - at that time we did a milk challenge and he passed and has since been in his diet.  

AJ also had an endoscopy at 5 months old - results came back normal for EE through UGI.  He was on Alimentum at the time of the scope - did show slight GERD.  This child was inconsolable.  No amount of medication helped him.  He had dysphagia and feeding issues and did not eat solids until 18 months old (still does not eat purees).  AJ continues to have reflux symptoms (chest pain and swallowing) and has had fecal impaction several times through X-rays.  His stools are smelly and we have to give him mirilax daily.

Thomas has also been on alimentum his entire life (given the experiences with the other boys we were nervous not to) but the 'high doses' of medication have not helped him either.  His upper endoscopy also showed normal biopsies for EE.  We have been putting 'oatmeal' in his cereal to help with the thickening (were using Thick It but his stools were very odd) and I"m wondering if he has an intolerance.  We just switched to Elecare last month and this week did patch testing (still waiting 24 hours to see results) as a recommendation from another feeding therapists.  Thomas also shows some aversions to eating with gagging.  The allergist said that if the person was on a hypo allergenic formula at the time of the biopsies they may show a false negative?  I'm now concerned for my two older boys who can't seem to get help from "GERD" with high doses of medication.  

Anyone have any similar experiences?  Would love for you to share!!

[kjbrown92]

If it were me (knowing what I know now), I'd take all the kids off of the most common intolerances (dairy, gluten, soy, corn) and keep a food journal to see what the remaining culprits are. It sounds like they all have allergies/intolerances which are causing their reflux. And removing the foods should be the first line of defense not the last (not blaming you; I can't stand that doctors use pharmaceuticals as a first defense). Both of my food intolerant kids were on reflux meds until I found out their food intolerances. Their reflux went away, their snoring, and a whole host of other issues (night terrors, "growing pains", eczema, etc.). We did ALCAT testing when my youngest was 3yo and my son was 7yo and found a lot of other foods (that I hadn't figured out through food journaling. It measures an inflammatory response to food (vs IgE or IgG testing).

[vtbunny]

thank you for the reply!  i guess the doctors think there were no allergies since the biopsies for EE came back negative... I guess i was just wondering if there can still be allergies if that were the case?  or is EE different from just regular allergies?  

[txtarheel]

My kids have severe food intolerances.  They don't show up on allergy tests for IgE or IgG, but clearly they react to the foods in question.  My oldest had an anaphylactic dairy allergy that he tested strongly for on skin prick tests that is now negative, but he still reacts very strongly in a negative fashion to milk in his diet (he's 5).  My 3yo DS was on reflux meds and had a hiatal hernia dxd when just a few months old.  At 9 mos we were bordering on a failure to thrive dx due to weight loss and projectile vomiting even with the meds and me on a severe elimination diet (he was nursing).  We just kept looking at diet and eventually found a combination of foods that were safe for me to eat that didn't exacerbate his symptoms.  Eventually we weaned him completely off the meds and now he's one of the healthiest kids I know and has few intolerances.

So yes, foods can be a serious problem even if the tests say they aren't.  We did ALCAT for all of us as well.  It was incredibly helpful for me and the results changed my life.  For my kids (at the time they were 1 and 3) they were next to useless.  We had a high number of false positives and false negatives for them and I feel like it made them even pickier eaters.

It's a tough road and takes a lot of observation, label reading, vigilance and enduring of nasty stares and comments from the rest of the world, but having healthy kids that feel good make it all worthwhile!

[changingseasons]

Originally Posted by vtbunny 

thank you for the reply!  i guess the doctors think there were no allergies since the biopsies for EE came back negative... I guess i was just wondering if there can still be allergies if that were the case?  or is EE different from just regular allergies?  

EoE is absolutely different than regular allergies. *Some* kids have IgE ("true" allergy) triggered EoE, but the majority do not. (We are in the minority; my daughter has EoE/EC and is IgE to almost every food tested.) Foods can be negative on allergy tests, but still be an EoE trigger. Patch testing is sometimes used for EoE triggers, but it's not 100% accurate either.

I haven't read the whole thread... running out the door now, but will try to come back later.

[changingseasons]

Just read through your first post. Being on an elemental formula (Neocate, Elecare) can give you a false negative scope (since elemental diet is one of the treatment options to put the disease in remission.) But Alimentum is not fully elemental, so I doubt it would have made a difference.