My DD3 is 19 months old. At a young age she was diagnosed with eosinophilic gastrointestinal disease. Basically, her immune system sees protein chains of any size as a pathogen and attacks in the GI tract. We went through the food elimination until I was eating 3 foods, no improvement, reflux meds, antispasmotics, various natural routes, specialists, traveling out of state, etc. From 4 weeks forward she screamed 16-20 hr a day. Only slept in 20-30 min blocks and would wake screaming. No sleeping position, sling/carrier, a single of many many meds, chiro, anything, nothing helped. Biopsies diagnosed the disorder and because BM contains the protein chains that were causing her GI to degrade, chronic pain, vomiting, etc, we moved her to a prescription amino acid formula which made all of the difference. It took us to about 13 months to get to this point, at which point she was behind because we had spent a year holding her while she screamed in pain. Her older sister has the same condition, but I BF her through 2.5yr and she didn't start going terribly down hill until then.Â
Â
Fast forward, through an odd turn of events, food trials, other things, our GI team now thinks there is something NON GI causing her issues. Mainly because the path it is following now is not what it should be. It never goes into remission, but can be controlled, but she has seemed INCREDIBLY reactive again, we scoped again, and her GI tract and biopsies were clean and perfect. So her symptoms now are not GI caused. Our out of state GI team has recommended seeing neuro, infectious disease, rheumo, etc, etc. All that said....she is 19 months, has caught up developmentally totally, gross and fine motor far exceed her age, she is close to on track verbally, comprehension is great...she understands everything. We have feeding therapy only because she just now is starting to eat food, but even that is going great. Height and weight are finally high percentile for her age.Â
Â
But she is miserable. She still wakes about 15-20 times a night screaming and writhing in pain. She head bangs on the floor and walls when frustrated. She is intensely and abnormally over-reactive. She is so uncomfortable being still. Sleep time is torture. She will go days, literally on a few hours of sleep. She will stay awake until she is staggering crookedly into things. She now sometimes sees to feel either no pain (when she should) or the last week, it almost is like her skin hurts. I pick her up to move her under her arm pits and she grabs them and says ow. I wiggle her into a cart seat and she cries ow. She grabs her arms and stuff and says ow. But she will also play outside for an hour and seem fine. She still cries hours and hours and hours a day, for no reason. When she isn't, she is Incredibly engaging and appears quite normal. Her joints look normal to me.Â
Â
Her scope at 16 months included blood draws to check for numerous things, and everything checked out.Â
Â
Our OT does not know what to do with her and has recommended a Dr that prescribes SSRIs to toddlers. Our Ped is great and will be happy to pursue any next step we feel like we need to.Â
Â
I sometimes feel crazy because on paper, everything looks amazingly good. In reality I am nearly home bound with a child that seems to be in chronic pain for no reason.
Â
WHAT ARE WE MISSING HERE????
She had an emptying scan done and was normal. She has been worked over from the GI side...5 upper/lower scopes, biopsies, upper gIs, DGE study, ph probe, etc. Our GI says we are at ground zero there. We don't know if we need to be looking at behavioral or physical. Luckily she rarely vomits now. 
