- Joined
- Nov 28, 2012
- Messages
- 29
Sorry I don't keep up here very well. I feel like I don't keep up well with anything these days!
Dylan is still really struggling and it is, as you know well, so very frustrating and heartbreaking. Asking for extra prayers today as we have two big meetings.
The first is to tour an alternative high school. I'm so worried about Dylan moving to high school. He misses so much school and our local HS is not very forgiving about these things. Even with a 504 plan I expect that it would be a lot of stress for him. He doesn't like to be behind or "in trouble"...like any kid does. This school i'm looking at would give him the ability to work at his pace. Honestly I think that he would always be ahead of the game. He likes school and he's smart but is always playing catch up in regular school and it is overwhelming for us both. It would also give him the opportunity to take classes like computer programming and CAD or electronics...things that interest him. It has a college prep tract, I just think it might be the ticket. If he gets "accepted" we will have to move so that we live in the district. It will be worth it, just a lot, again. Praying that it works out for him!
The second is with Dylan's pediatric GI. I feel like we need some big changes. Remicade definitely helped him for awhile but it doesn't seem to be anymore. And adding the methotrexate seems only to have lessened his immune system more! He has continued lower quadrant pain and pain with eating; but also has had a steady run of strep throat, stomach viruses, cough, headaches...everything. He is just not doing okay and I feel like we've tried this combo long enough. I think its time to move to Humira or something else - try something new. Also, prevacid may be a problem. Has anyone else had trouble with prevacid. When I look back at my journal from the first time he was on prevacid it lloks like he had a constant sore throat. When he had his endoscope back then(2years), the doc thought he may have Barretts Eusophagus...at age 12. The biopsy said NO but still there was damage there - possibly from prednisone. and prevacid was supposed to help that. But when he first went on Remicade it DID help and he didn't need prevacid so we got off it and he didn't have the sore throat. It is such a puzzle. I also wonder if his throat hurts from all the throwing up...his stomach is so sensitive that he throws up numerous times every week. For MONTHS he's been throwing up. I just don't know what to do next. Thanks for your prayers.
Oh, and one more thing. We struggle to keep weight on Dylan. I get frustrated by well meaning people telling me that I just need to feed him better and he'd be fine. For the last month, pretty much the only thing that he feels like he can eat is squash. I'm getting organic butternut, acorn, spaghetti squash. We cook it with olive oil or in the oven and with cinnamon or honey or a little seasalt... I don't know what else to do. He was on enteral nutrition for almost six months and it did NOTHING for his disease. He gained some weight but NOTHING for his disease. Argh. I just wish he could feel good and normal. That's all I want.
Thanks for letting me rant.
Dylan is still really struggling and it is, as you know well, so very frustrating and heartbreaking. Asking for extra prayers today as we have two big meetings.
The first is to tour an alternative high school. I'm so worried about Dylan moving to high school. He misses so much school and our local HS is not very forgiving about these things. Even with a 504 plan I expect that it would be a lot of stress for him. He doesn't like to be behind or "in trouble"...like any kid does. This school i'm looking at would give him the ability to work at his pace. Honestly I think that he would always be ahead of the game. He likes school and he's smart but is always playing catch up in regular school and it is overwhelming for us both. It would also give him the opportunity to take classes like computer programming and CAD or electronics...things that interest him. It has a college prep tract, I just think it might be the ticket. If he gets "accepted" we will have to move so that we live in the district. It will be worth it, just a lot, again. Praying that it works out for him!
The second is with Dylan's pediatric GI. I feel like we need some big changes. Remicade definitely helped him for awhile but it doesn't seem to be anymore. And adding the methotrexate seems only to have lessened his immune system more! He has continued lower quadrant pain and pain with eating; but also has had a steady run of strep throat, stomach viruses, cough, headaches...everything. He is just not doing okay and I feel like we've tried this combo long enough. I think its time to move to Humira or something else - try something new. Also, prevacid may be a problem. Has anyone else had trouble with prevacid. When I look back at my journal from the first time he was on prevacid it lloks like he had a constant sore throat. When he had his endoscope back then(2years), the doc thought he may have Barretts Eusophagus...at age 12. The biopsy said NO but still there was damage there - possibly from prednisone. and prevacid was supposed to help that. But when he first went on Remicade it DID help and he didn't need prevacid so we got off it and he didn't have the sore throat. It is such a puzzle. I also wonder if his throat hurts from all the throwing up...his stomach is so sensitive that he throws up numerous times every week. For MONTHS he's been throwing up. I just don't know what to do next. Thanks for your prayers.
Oh, and one more thing. We struggle to keep weight on Dylan. I get frustrated by well meaning people telling me that I just need to feed him better and he'd be fine. For the last month, pretty much the only thing that he feels like he can eat is squash. I'm getting organic butternut, acorn, spaghetti squash. We cook it with olive oil or in the oven and with cinnamon or honey or a little seasalt... I don't know what else to do. He was on enteral nutrition for almost six months and it did NOTHING for his disease. He gained some weight but NOTHING for his disease. Argh. I just wish he could feel good and normal. That's all I want.
Thanks for letting me rant.
It's so frustrating and heartbreaking to watch our kids suffer and feel helpless 
