we are still here...
The best they have come up with...and all they are doing is literally watching as he eats and recording his pain episodes...functional gastrointestinal disorders. Basically, he hurts and has to learn to live with it.
Guess who is not happy with this?
They have restarted his Carafate, and Periactin, which is supposed to help with "overreactivity". ????
They have had a behaviorist in to watch me feed him lunch twice. Yesterday, he cried through the entire meal, today, same food, he was fine. (they say that also points to what they are saying) Then 45 minutes later, he started fussing, and had a bad afternoon, and a horrible evening. Had to get tylenol twice. He is asleep now, but has not stopped punching himself for the past hour and a half, all in his sleep. (They will say it is another "behavior"....self stimulating) But he is fussing while sleeping too.
I don't know when we are coming home. I do know tomorrow I am going to find a time to let them know that I expect further testing. They proposed, through the behaviorist, that we begin certain behavior modification techniques during meals, record for the next 4 weeks (until his scheduled scope on Jan 12) his pain/wretching responses, then compare this with the information they get when they scope him again. They keep saying he has had "extensive workups"...they have scoped him 3 times, each time with biopsies, found HPlylori the first time, "plain" gastritis and esophagitis the 2nd time, and candida esophagitis and gastritis the third time. They are going to have him on Carafate for a while, again, not on again off again, and expect everything to be ok in January. Ok, then let's look at surrounding structures...pancreas, liver, etc... Let's do some motility studies, we know he has gastroparesis.
I just want my kid to stop being in pain.
Poor Jakey! Yet despite of these struggles he has come so far over the last year!
ReplyDeleteThinking of both of you,
Your neighbor
Poor guy!!!! I just hate to see the little ones in pain. :( Has he been tested for celiac disease yet? His symptoms sound a lot like celiac, and I've heard it's more common in kids w/DS (I struggle with non-celiac gluten sensitivity myself).
ReplyDeleteSometimes even if tests come back negative it can still be present - you could try eliminating gluten from his diet for a month to see if it makes any difference, if you haven't already.
Big hugs!
Lisa (who doesn't know you but feels your little boy's pain!)
P.S. I am over the moon that you are Jacob (in Bulgaria's) new mama! I wanted desperately to snatch him up but it just wasn't the right time for us. I will be eagerly following your journey.
I used to have severe abdominal pain and just recently was diagnosed with a milk egg and garlic allergy through scratch testing. I had previously tested positive only for a shrimp allergy with blood testing, but apparently it isn't as sensitive. I highly suggest next time he is having some sort of anesthesia that you might just check into whether food allergy scratch tests can be done while he's out.
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