Good Afternoon! I was able to sleep until 8:30am, then a friend called to inform me it was snowing. I got up looked out the window and sure enough it is coming down, not sticking, but still dumping. Sooooo now I have a sick boy bouncing of the walls(seriously very bouncy), that seems to have become a bottomless pit overnight, stuck inside. Oh joy!
I really don't like the way he is reacting to the prednosone, but it is helping with the stomach pain, and he is walking on both legs. (he has not been able to put weight on his left leg for about three weeks) His dx from the Reumy is enteropathic arthritis. about two years ago our old ped. Dx him with asthma, based only on symptoms. Severe pain in chest when becoming active and difficultiy breathing. In early Aug. of this year he had a pulminay breathing test and we found that he does NOT have asthma at all. but the arthritis effectd the joints between his ribs and his sternum and have caused him to lose chest expansion. It first showed up when he was two with him waking up at night screaming because his knees, ankels and hips would hurt so bad. Once again because they did not see anything in his blood, we did not get dx. I took him to over 5 different peds. all said the same thing "just growing pains". I have three children, he is the only one that has had this problem. When we finally did get the dx of CD we were refered to the Reumy. He was upset that he had not been seen earlier. We are waiting for him to get well enought to start PT, but he will not regain all of the range of motion he has lost in his hips, and back. We just hope to stop him from losing more.
Isaac is doing good today, Miralax kicked in and that always helps...
Bilirubin - What is a an elemental/polymeric diet?
My husband and I talked again today and it frustrates me. He is convinced that Ty does not have CD. I think he just does not want to except that this is a CHRONIC, UNCURABLE disease. I know that we can get it into remission eventually, but the question is when? How long? and the answere is only God knows. He does not even want to deal with the fact the Isaac might have it to. It is a hard thing to face!
I am going to call the GI on Monday and ask for the capsule scope for him too. We are already going on the 8th for Ty's and Isaac is getting a recheck . We'll see, what happens.
The boys see the only pediatric GI in the state of Idaho, at ST. Lukes Childrens . They are good, I just don't know how to get the Reumy(he is at Elks Rehab) to communicate with them and the Ped. to communicate with both of them.... I think i might need to start asking for my own copies of everthing so that I can carry info from one to the other.
Sorry this is so long again... I am working on another pot of coffee already today.