EGID moms

mplusnequalsh

What symptoms was your child exhibiting before getting an EGID diagnosis? I'll try to be brief. DD (19 mos) was dx w/reflux at 4 weeks (and confirmed through pH probe). She has delayed gastric emptying and has been FTT for over 10 mos now. She was on Prevacid from 8 wks-1 year with minimal results. Upper & flex sig scope @ 11 mos confirmed gastritis, colitis, and "a few" eosinophils in her colon. They didn't count them.... She started Nexium at 1 and has gotten better, but still has 1-2 weeks a month where she is uncomfortable and will not eat. She gets over 95% of her nutrients from Elecare, but doesn't take in anywhere near her caloric need. She has been on Elecare since 4 mos and wasn't eating many solids until well after a year. She has had either hive or GI reactions to 9 things so far. She has never had milk or soy bc of her GI issues (except thru bm). A RAST test at 1 was negative for the top 8, but she had never eaten any of those things before. She has since had (& reacted to) egg. She has constant eczema on her arms & legs that flare frequently. I can't find a reason why. She is being seen by an allergist who is in the process of going over her history before making any recommendations. Our GI has told us that her eating issues are all behavioral and that her GI issues have all been under control. They have said this since she was 6 months old. Does EGID seem like a possibility for our DD? I know that this could all still just be reflux, but at 19 months, she's just not getting any better and I don't know how to help her. *sorry for format - on phone.

twoasone1

DS has EoE. He was diagnosed in October at almost 15 months old.  The only way to diagnose an EGID is through a biopsy of the area that it is suspected the EGID exists in. 

It does sound like a possibility to me that your DD has one.  Has your GI talked about doing another scope?

DS story starts at 3 weeks old.  He had corrective surgery for pyloric stenosis.  At four months old he was diagnosed with GERD.  At 6 months he was diagnosed with FTT he also was very hypotonic.  After many many tests (CF, etc) his G.I. doctor decided to do an endoscopy.  The results showed that he had severe EoE.  We immediately put him on Neocate Jr.  He was only allowed that for six weeks in order to 'clear his system'.  Sadly, after his diagnoses he was still doing so poorly.  He wasn't even on the weight charts anymore.  You could see every bone in his body and he still refused to eat.  That is when he got his feeding tube.  I think it literally saved his life. 

After the six weeks of only Neocate Jr.  we introduced one new food every six weeks.  Each food introduction was followed by a scope.  If the eosinophils were higher, the food was a no go, if lower or the same it was a keeper.  Sometimes we didn't need a scope to tell us a food was a no go, like with chicken.  It made him very sick right away.  We started this all in December, and he now can eat pears, wheat, and carrots.  We are trialing peas right now. 

Good luck, and let me know how it all turns out.

mplusnequalsh

Thank you so much for replying and sharing Will's story. Our GI has not mentioned another scope, although I feel with her history it is definitely warranted. They are still convinced her issues are behavioral and won't look any further. (This is our 4th GI. 2 others said she just had colic and I was wasting their time) The GI is great when she is losing weight, but she'll gain great for a month or two and then lose again. They have wanted to tube (NG) her twice now, but she'll pack in an oz or two to get out of it. She is currently 19lbs at over 19mos. (0.5%ile) I think at her next appt, I will sit down and really push for another scope. This may very well be a long shot, but I at least think her eosinophil count should be checked. Thank you so much for your help!