I have a couple of issues I was wondering if I throw out there if I could get any comments or suggestions. You all are so wonderful to talk to!
First, my son (13) has been on Remicade for a little over a year now and he has been on Methotrexate for nine months. Overall he is doing okay (I wish I could say great). His labs the last few months have been coming back pretty good. The problem is, he hates Methotrexate. He cannot even say the word without getting a sick feeling. I take him to the hospital every Friday to get the shot. We tried a few times doing the shot at home but he would act out, push me away, cry hysterically and so now we are back going to the hospital again to take it because he is to tough to cry in front of them, if you know what I mean. He had wanted to try switching to the pill form, in which we did for about three weeks, but it made his body so sore that he could not hardly walk at all. So we are back on the shot form. He told me last night, in a big, crying meltdown he was having, that the metho causes him so much emotional pain. That if he was not on it he would be much better. He said he would rather take the physical pain then be on it. He wants control of his body but I tell him at 13, I get the say over him. He has not reached puberty yet and still can act immature at times.
I am waiting on a call back from the nurse. I have mentioned him trying to get off and see how he does but the doc did not recommend it. How do we know if its working? He wants off it so bad. I don't know if I need to talk to his PCP or his counselor and maybe he needs some anxiety meds (in which I don't want to do because he just got off some a couple months ago). If he got off for a couple months and found his symptoms got worse, can he go back on it? Any suggestions?
The other problem. My son suffers from rectal prolapse and has for a few months now. Terrible pain when he is having a bowel movement. I don't understand how he strains so much and all that ever comes out is liquid. Never has had a formed stool. He tries to breathe or read to take his mind off straining but it does not work. We have tried suppositories and that does not seem to help. It is not on the outside of his anus, but only comes down during the straining. We have done warm baths also. Any recommendations for this? He eats like a normal 13 year old but is very picky and he is not the healthiest. He had tried Boost for 2 1/2 weeks this summer but gave up. He does not go gluten or dairy free but he does drink lactose free milk. I feel like with all the straining and the prolapse that he is going to or already has damaged something down in that area. I have seen his stools, and every now and then, he will have a couple drops of blood on top of it, like maybe from straining too hard (or at least I hope that is what is causing it). I bring this up all the time to the GI but she says nothing really can do unless he goes EEN so he does not go to the bathroom and strain as often.
Thank you all so much!
First, my son (13) has been on Remicade for a little over a year now and he has been on Methotrexate for nine months. Overall he is doing okay (I wish I could say great). His labs the last few months have been coming back pretty good. The problem is, he hates Methotrexate. He cannot even say the word without getting a sick feeling. I take him to the hospital every Friday to get the shot. We tried a few times doing the shot at home but he would act out, push me away, cry hysterically and so now we are back going to the hospital again to take it because he is to tough to cry in front of them, if you know what I mean. He had wanted to try switching to the pill form, in which we did for about three weeks, but it made his body so sore that he could not hardly walk at all. So we are back on the shot form. He told me last night, in a big, crying meltdown he was having, that the metho causes him so much emotional pain. That if he was not on it he would be much better. He said he would rather take the physical pain then be on it. He wants control of his body but I tell him at 13, I get the say over him. He has not reached puberty yet and still can act immature at times.
I am waiting on a call back from the nurse. I have mentioned him trying to get off and see how he does but the doc did not recommend it. How do we know if its working? He wants off it so bad. I don't know if I need to talk to his PCP or his counselor and maybe he needs some anxiety meds (in which I don't want to do because he just got off some a couple months ago). If he got off for a couple months and found his symptoms got worse, can he go back on it? Any suggestions?
The other problem. My son suffers from rectal prolapse and has for a few months now. Terrible pain when he is having a bowel movement. I don't understand how he strains so much and all that ever comes out is liquid. Never has had a formed stool. He tries to breathe or read to take his mind off straining but it does not work. We have tried suppositories and that does not seem to help. It is not on the outside of his anus, but only comes down during the straining. We have done warm baths also. Any recommendations for this? He eats like a normal 13 year old but is very picky and he is not the healthiest. He had tried Boost for 2 1/2 weeks this summer but gave up. He does not go gluten or dairy free but he does drink lactose free milk. I feel like with all the straining and the prolapse that he is going to or already has damaged something down in that area. I have seen his stools, and every now and then, he will have a couple drops of blood on top of it, like maybe from straining too hard (or at least I hope that is what is causing it). I bring this up all the time to the GI but she says nothing really can do unless he goes EEN so he does not go to the bathroom and strain as often.
Thank you all so much!
I don't have any experience with it but I think I've read that you need to supplement with folate/folic acid with the MTX (but not at the same time). If you're not doing that, perhaps it's a deficiency that's contributing to his unwell feeling??? Again, I'm not sure of this... hopefully, a parent with MTX experience can comment... :ghug:
