Uhhhh when will it end?

[Anonymous]

I posted about 6 months – these 6 months have been a blur of tests, sleepless nights, a brief period of improvement, and then back to the pits again.

Couple details to catch you up:

-Son is 27 months old, has had reflux show up since he was 1, Seems to be getting worse.

-we have done blood tests, an upper GI scope, allergy tests, and been seen by 1/2 a dozen different doctors/specialists.

-He is on omeprazole twice a day (4 ml) each time.

-he has had difficulty gaining weight, has fluctuated from the 2% to the 10% in weight, and for his height to weight ratio is way way way off the charts (low). He even lost weight from Sept to Oct…but has had a good 2 months of weight gain since then.

-food refusal is his worse symptom (along with crying). Doesn’t vomit. has tiny little burps when refluxing, and also can have burning diarhea diapers. extremely moody, angry, aggressive and destructive when refluxing (which feels like its all the time now!)

-down for the night at 8pm. Wakes up 1-3 times at night, is often up for the day at 4:00, 4:30, or 5:00am.

-we have tried enzymes, probiotics, bed lifts, small meals, elimination diets, taking any reflux culprit completely out of the diet, aloe vera juice, seeing a chiropractor who was a nut who was totally wrong on a diagnoses and charged us $300

-oh and the one month that things actually were going well from September to October, to our complete surprise, he lost over 1/2 a pound.

Here is where we are right now…..our GI doctor is kind of out of ideas. We just got results from allergist, and are now taking multiple tests for something called F-PIES which is more of a intestinal track issue. No allergies were present, and after the first F-pies stool test, it came out negative. Allergist wants us to take 2 more tests when symptoms become problematic. He also suggested an elination diet, taking out certain foods one at a time. We already tried the massive elimination diet with him where you take everything out at once. He ate even less when we did that, and considering his weight, we didn’t feel comfortable pursuing that extreme of a diet with him when it made him eat less.

I SO need help!! I have done a good job of regrouping my energy when we hit a brick wall, and then trying something else. We have been doing this same pattern of trying something new since May. I am SO WARN OUT! My child is misreble, and becoming bitter and angry about it little life. We do have some good days, where he turns into my little sweet guy, but those good days come randomly. I can’t find any rhyme or reason to it.

So out of ideas and energy. Any thoughts, experience or encouragement would be amazing…

[hellbennt]

encouragement!

AND INCREASE THE DOSE!!!

4mls sounds like a compound made by the pharmacy – I’d take matters into my OWN hands! I’d be dosing my kiddo w/ the highest dose for his age and I’d buy the ‘products’ (that’s what I did – but I can’t tell you to do anything! I’m not a medical professional)

research all you can!

Prevacid 101:
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

I’d give zantac at night!

I’d look into CARAFATE! (must be spaced 2 hrs from PPI)

I’d look at diet! You must have a food journal?

F-PIES is related to not being able to handle proteins…

were there EOS cells found during the scope(s)?

hang in there!

[Anonymous]

Thanks for the info! I think you were my “first responder” this summer too when I had some issues. Thank you!

We are attempting some of these suggestions for tonight, so we will see how things go!

Yeah, we have done the food journal a zillion times. I just walk myself into circles with that though. I never find a common offensive food. Although, tomatos, citrus (of course) and yogurt covered raisins all produced really bad reactions.

Looking into Carafate this week.

There were no Eosinophils found in the scope.

Thanks again for taking the time to respond.

[Anonymous]

I don’t really have anything to add except encouragement. And I agree the dose sounds low. My little one at 3 months is taking 20 mg of Nexium a day – that’s 10mg in the morning and 10 mg at night. And she’s 12 lbs.

[hellbennt]

any updates?

[Author]

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