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 route.

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…frazzledmom2012-12-09 21:34:23

[Anonymous]

Hello frazzledmom,

I am so sorry that things are still not going well for your little one.

I see that you have tried probiotics and enzymes and am wondering what kind you used and how much you gave your little one and for how long?

For some children (and adults too) probiotics can make their symptoms get worse for several days and when this happens some people will quit giving them, thinking that they are having a reaction to them. When in truth, this can be very normal and just means that the probiotics are making toxins and other bad things die off. It’s called the Herxheimer Reaction.

Also for some children it can take higher doses for longer periods of time to see results.

And too, different brands of probiotic/enzyme supplements can vary greatly with what their ingredients are and how they work.

I know that every child is different and probiotics and enzymes are certainly not a cure all. So not all children will get the same results with them.

Here is a story about a boy that is close in age to yours that was really struggling with many of the same problems that your little one is and his mom has found several different things to help him. http://help4acidreflux.wordpress.com/federicas-story/

[Author]

Posts