Cry-in-pain2.flv

CLIP 2 - This is the norm for Trevor when he is in the excruciating pain. And, this is when he was being fed directly to his intestines with the J-tube. He was getting nothing by mouth, so the stomach motility disorder that he has doesnt play a factor into his pain here. This lasted for three straight months and he has had some relief with the concoction of medications that his doctor at Hershey has him on to make him have bowel movements. He is now being fed by mouth until he gets backed up and then I have to put it into his MIC-KEY button. He is on Erythromycin, Reglan, Miralax, Milk of Mag and Prevacid every day just to make him a little more comfortable. He takes meds 13 times a day. But when he doesnt go, he is screaming and completely uncomfortable again. He typically is like that for 2-3 days at a time with about a 12-16 hour break in between because he actually had a good bowel movement. And when he does go, he then wants to eat all of the time. He eats about 2-3 ounces at a time and eats every two hours, around the clock. He is now 6 months old and my poor little baby has had to live like this his entire life already. And, my other children only know their little brother as being in pain all the time because he cant poop. He is a completely different child when he poops. He is happy, smiling and talking. His demeanor is not fussy. He is perfect and happy when he can go to the bathroom. I just want my poor baby to have relief. And I am praying for a motility disorder specialist who has the equipment to test him and treat him. Please find in the goodness of your heart to get my baby in the hospital and get him tested so he can proceed to a life that he should have, pain free!

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[diamondgirl828]

Already lifted him up in prayer! How is his condition now? What is this called??

[mom2mad4kids]

Hi there, just seen your post here, its the same condition as my 3 month old nephew has, i was wondering how you got on, and if your little boy has had any improvement or is he still on the same drugs as you've described? He must be around 2 yrs old by now?

[1320trail]

What condition has he got that makes him hurt like this? I certainly hope he's better now!!

[karapari]

poor little guy, this makes me sad! ... has there been any improvement?