- Joined
- Jan 13, 2013
- Messages
- 36
Hello again. I have posted once since my 12 yr old son was dxed with Crohn's the end of December. I feel like I can barely keep my chin up lately. Emotionally, I am just drained. We have him on Asacol, Omeprazole, entocort, culturelle probiotics, as well as trying gf diet for a period of a couple months to see if we notice improvement. He's been on those since the first of January, and still stomach aches every day, though mostly somewhat milder. He had more severe pain two Tuesdays ago, so I called his GI doc, and they added oral pred for a course of 7 days to the mix. Then last Thursday night, he woke up in the middle of the night with severe pain, nausea, shakiness, chest tightness. Called his doc, stayed up with him and it got better, so we didn't go to the ER but I did ask the doc the next day just to do bloodwork to make sure it wasn't pancreatitis, and that was normal. WE had a good, relatively low pain weekend, then more pain over the last few days and today after lunch he has had severe pain and he threw up. So I called the GI doc again, they said to monitor him, take him to the ER if he gets worse, and they called in zofran to add to the mix. I just feel so discouraged in all this. I feel overwhelmed. We haven't got a second opinion yet, but I think now we are leaning toward driving to Cincinatti. Mainly, I am not looking for a different diagnosis at this point, because the more I read, the more I feel confident that it is most likely Crohn's, but atleast having another opinion on the best method/medication for treatment for my son would probably be helpful. I know another mom said when I described the idea that my son needed to be on immunosuppressants "for life" it sounded like I was describing a prison sentence. But that's how this feels to me right now. And the doc used that term too---when he said it, he said he would need to take it "the rest of his life." And it has been SO FRUSTRATING. I have two kids with asthma, and their diagnosis never frustrated me like this. I felt like when I talked with their doctors at the time, we had a clear diagnosis and a direction to go in that they were pretty confident would work for my kids. And we did, we made adjustments and moved on. But with this, I just feel like every day, I hear someone else suggest something different to try or read someone say why the thing that was just suggested made no difference at all for them, and it's really discouraging. It would be a heck of a lot easier to embrace these riskier drugs if I felt confident they would help him, but I don't feel that way at all. And today, with him throwing up, I feel like we are back at square, well not one, but two. In the midst of all this, my ped has become concerned because my 10 month old (different child that son with Crohn's) is also not growing well, and so we are feeding this kid to the point of throwing up to try to get her back on the charts growth wise also with a weight recheck on Monday. Meanwhile, my own stomach has been tied up in knots, but mostly I think it's just from anxiety over my son, though I have had elevated liver enzymes in the past and I am prone to migraines, so there is that question in my mind now if maybe I could have undxed Crohn's as well. I just want my son to feel well and be able to do the things he wants to do, to grow and be healthy and have a wonderful life. I know my problems on this board are like a drop of water in the ocean compared to others', but right now I just needed to vent a little. This has been the worst winter for us ever for sickness in our house, every time I start to think we can actually have friends over again or get back to a routine, someone else gets sick. Can I curl up in a ball for a while and just cry a little? Thing is, my son has been a trooper through all of this. I just wish I could take all the sickness he feels, and put it on me instead, so he wouldn't have to deal with this crud. :frown:
