- Joined
- Nov 28, 2012
- Messages
- 29
Hi all, 2nd post and it is a doozy. I"m copying from my blog which can be found here: never mind, can't post until I've had 10 posts...which shouldn't take long 
Mostly I have a really discouraged son and am feeling kind of beat up myself. Wondering how you stay motivated and positive to a child who has been to hell and back with this disease and when you are struggling yourself with it.
Thanks for your help.
jd
Shooting up meth and more
Okay, so the plan for Dylan was that when he got down to 20mg of prednisone, he would add a weekly methotrexate injection. This would give a few weeks for him to have the effects of prednisone, while building to a therapeutic level of mtx and hopefully keep his bowel issues all in check. I've said before how I hate prednisone (despite how effective it is in doing the base job of improving the direct IBD symptoms). I won't take it personally anymore after being on it literally for years. I wonder how much damage I have now is in part because of that? I also had great heartache over allowing Dylan to be on it again. It's never been good to him in terms of so many side effects. It will take a pretty big flare for me to consider letting him have again - even for a two week hit.
I also was pretty clear how much my first mtx injection bothered me...and really the first couple. I'm still just so very, very exhausted. Whether its the mtx or the increased vitamin D, I do feel generally considerably better than I did, however. (sorry this isn't sounding remotely eloquent, its totally off the top of my brain/heart) I have a "feeling" that I"m on the right track. While I've had some tell me that they never got over the fatigue from MTX, I've had many more tell me that after the first dozen or so weeks they really did feel a whole bunch better - and less tired than they had in a long time. I'm hopeful for this. Nevertheless, the idea of so quickly trying to grasp having Dylan take it is really difficult. Separating the two of us and rationally believing that just because I have something doesn't mean he will, and vice versa can be difficult. Plus, I learned some things through my "initiation" process and planned to start him "better".
Okay so he had his first injection Friday night. He (and I, because I still have zero energy the day after) pretty much was useless on Saturday. Sunday he was quite nauseous and achy all over and very tired. Monday he went to school until about 1:30 and then finally had to go home. He had a massive headache, was nauseous and had really sore feet and knees. His doc prescribed some Zofran for the nausea and I let him stay home on Tuesday. When I got home he was still pretty nauseous and exhausted and limping around. During the night he was dripping sweat and restless but he never woke up. (and no actual fever.) He settled into a good sleep near morning. I wasn't about to wake him up. So he missed school Wednesday too. I did ask his school nurse to bring his work to him (why I didn't do this before I didn't know...oh the things we learn). He didn't do any of it as he slept most of the day. I called the Ped GI and she got him in to see our regular pediatrician first thing today. (Our Ped GI is in Billings - 2 1/2 hours away) Meanwhile, poor Dylan had more pain in his feet especially, but less nausea. He was good when I got home, but asleep by 7:30 or so.
This morning we went to regular pediatrician. He was feeling better than he has in a few days. Still sore feet but not limping badly. Moderately nauseous but he didn't even feel like he needed the Zofran. I thought, well good, the meth side effects are probably wearing off and this was just a tough week and it will get better. Why do I ever think that? Although he did not have a fever, has not had bowel pain, is having regular bowel movements, his ESR and CRP were both moderately elevated! Now, if you read this blog much, you know that one of our issues has always been that he normally doesn't bump these markers until he has very severe Crohn's going on. In fact, it delayed his diagnosis because he had normal labs, but when they found blood in his stool and with my history and his inability to eat, extreme pain, weight loss etc. they finally did a colonoscopy only to find massive inflammation, severe, active Crohn's. So for his numbers to bump now is alarming to me! Both the Ped GI and regular Ped are watchful and alert but feel that we need to give this another week and see if we have a trend of sorts. His liver enzyme tests aren't back yet and that may play a role in next course, too. But I'm just kind of in shock. I'm supposed to tell this kid who I love more than life himself to take another injection tomorrow...How do I do that? Lord, give me strength. I really like these doctors and they are firmly in agreement. I"m just so very tired of telling Dylan that the "best" thing for him is to do something that hurts, a lot. I feel like its all I do. From shoving a tube up his nose and down his throat, to Infusions every 8 weeks to prednisone and all its nastiness to stabbing himself with a needle filled with an ugly yellow liquid he pretty much knows now is going to make him feel really crappy. Why????? To feel good? Anytime for that would be good!
So I mentioned how sore his feet are, and to a certain extent that is really the biggest "side effect" symptom that remains...other than the fatigue which I am still experiencing 6 weeks later so I can't say that it is a "problem" - may just be part of the battle that has to be fought to win the reward of feeling good. Nothing can be easy after all. To be fair, his feet and knees have both bothered him at various times before. He has had specially made, individualized orthotics since he was about 8. His pediatrician did NOT see any inflammation or feel any "heat" that is normally associated with inflammation or drug reactions or arthritis (like I have...). However, she was surprised to see that his arches are still non-existent despite the orthotics and felt that it was severe enough a pronation that combined with his recent growth (5ft5.5inches and drum roll please 107 pounds), his feet might need more work. In other words, she didn't see it as being a crohn's or drug related issue, but rather a pretty significant physical/structural issue. And she attributed the knee pain to the misalignment of the feet. So, before we knew anything of these increased inflammatory markers which may or may not have anything to do with his feet....she referred us to an orthopedic surgeon. Now, mind you, she was clear to say that she feels this guy is not a surgery pusher at all but rather is very good at identifying the root of a problem and possible solutions - including orthotics, PT, etc. Essentially, she thinks this guy can help us skip some of the messing around and tell us the likelihood based on his age of best treatment options. SOunds good to me. It's worth a visit at least. The poor kid can't walk across our house without his feet aching...and we live in a tiny two bedroom condo.
So what in the world is the inflammation from? Is it Crohn's, Is it joints, is it some other random thing? He's not showing any kind of flu symptoms - other than those that can totally be accounted for by the prednisone, MTX, etc. - fatigue, overall soreness, nausea...? It makes me want to pull my freaking hair out!!! Why can't the kid catch a break? WHY?
Mostly I have a really discouraged son and am feeling kind of beat up myself. Wondering how you stay motivated and positive to a child who has been to hell and back with this disease and when you are struggling yourself with it.
Thanks for your help.
jd
Shooting up meth and more
Okay, so the plan for Dylan was that when he got down to 20mg of prednisone, he would add a weekly methotrexate injection. This would give a few weeks for him to have the effects of prednisone, while building to a therapeutic level of mtx and hopefully keep his bowel issues all in check. I've said before how I hate prednisone (despite how effective it is in doing the base job of improving the direct IBD symptoms). I won't take it personally anymore after being on it literally for years. I wonder how much damage I have now is in part because of that? I also had great heartache over allowing Dylan to be on it again. It's never been good to him in terms of so many side effects. It will take a pretty big flare for me to consider letting him have again - even for a two week hit.
I also was pretty clear how much my first mtx injection bothered me...and really the first couple. I'm still just so very, very exhausted. Whether its the mtx or the increased vitamin D, I do feel generally considerably better than I did, however. (sorry this isn't sounding remotely eloquent, its totally off the top of my brain/heart) I have a "feeling" that I"m on the right track. While I've had some tell me that they never got over the fatigue from MTX, I've had many more tell me that after the first dozen or so weeks they really did feel a whole bunch better - and less tired than they had in a long time. I'm hopeful for this. Nevertheless, the idea of so quickly trying to grasp having Dylan take it is really difficult. Separating the two of us and rationally believing that just because I have something doesn't mean he will, and vice versa can be difficult. Plus, I learned some things through my "initiation" process and planned to start him "better".
Okay so he had his first injection Friday night. He (and I, because I still have zero energy the day after) pretty much was useless on Saturday. Sunday he was quite nauseous and achy all over and very tired. Monday he went to school until about 1:30 and then finally had to go home. He had a massive headache, was nauseous and had really sore feet and knees. His doc prescribed some Zofran for the nausea and I let him stay home on Tuesday. When I got home he was still pretty nauseous and exhausted and limping around. During the night he was dripping sweat and restless but he never woke up. (and no actual fever.) He settled into a good sleep near morning. I wasn't about to wake him up. So he missed school Wednesday too. I did ask his school nurse to bring his work to him (why I didn't do this before I didn't know...oh the things we learn). He didn't do any of it as he slept most of the day. I called the Ped GI and she got him in to see our regular pediatrician first thing today. (Our Ped GI is in Billings - 2 1/2 hours away) Meanwhile, poor Dylan had more pain in his feet especially, but less nausea. He was good when I got home, but asleep by 7:30 or so.
This morning we went to regular pediatrician. He was feeling better than he has in a few days. Still sore feet but not limping badly. Moderately nauseous but he didn't even feel like he needed the Zofran. I thought, well good, the meth side effects are probably wearing off and this was just a tough week and it will get better. Why do I ever think that? Although he did not have a fever, has not had bowel pain, is having regular bowel movements, his ESR and CRP were both moderately elevated! Now, if you read this blog much, you know that one of our issues has always been that he normally doesn't bump these markers until he has very severe Crohn's going on. In fact, it delayed his diagnosis because he had normal labs, but when they found blood in his stool and with my history and his inability to eat, extreme pain, weight loss etc. they finally did a colonoscopy only to find massive inflammation, severe, active Crohn's. So for his numbers to bump now is alarming to me! Both the Ped GI and regular Ped are watchful and alert but feel that we need to give this another week and see if we have a trend of sorts. His liver enzyme tests aren't back yet and that may play a role in next course, too. But I'm just kind of in shock. I'm supposed to tell this kid who I love more than life himself to take another injection tomorrow...How do I do that? Lord, give me strength. I really like these doctors and they are firmly in agreement. I"m just so very tired of telling Dylan that the "best" thing for him is to do something that hurts, a lot. I feel like its all I do. From shoving a tube up his nose and down his throat, to Infusions every 8 weeks to prednisone and all its nastiness to stabbing himself with a needle filled with an ugly yellow liquid he pretty much knows now is going to make him feel really crappy. Why????? To feel good? Anytime for that would be good!
So I mentioned how sore his feet are, and to a certain extent that is really the biggest "side effect" symptom that remains...other than the fatigue which I am still experiencing 6 weeks later so I can't say that it is a "problem" - may just be part of the battle that has to be fought to win the reward of feeling good. Nothing can be easy after all. To be fair, his feet and knees have both bothered him at various times before. He has had specially made, individualized orthotics since he was about 8. His pediatrician did NOT see any inflammation or feel any "heat" that is normally associated with inflammation or drug reactions or arthritis (like I have...). However, she was surprised to see that his arches are still non-existent despite the orthotics and felt that it was severe enough a pronation that combined with his recent growth (5ft5.5inches and drum roll please 107 pounds
), his feet might need more work. In other words, she didn't see it as being a crohn's or drug related issue, but rather a pretty significant physical/structural issue. And she attributed the knee pain to the misalignment of the feet. So, before we knew anything of these increased inflammatory markers which may or may not have anything to do with his feet....she referred us to an orthopedic surgeon. Now, mind you, she was clear to say that she feels this guy is not a surgery pusher at all but rather is very good at identifying the root of a problem and possible solutions - including orthotics, PT, etc. Essentially, she thinks this guy can help us skip some of the messing around and tell us the likelihood based on his age of best treatment options. SOunds good to me. It's worth a visit at least. The poor kid can't walk across our house without his feet aching...and we live in a tiny two bedroom condo.So what in the world is the inflammation from? Is it Crohn's, Is it joints, is it some other random thing? He's not showing any kind of flu symptoms - other than those that can totally be accounted for by the prednisone, MTX, etc. - fatigue, overall soreness, nausea...? It makes me want to pull my freaking hair out!!! Why can't the kid catch a break? WHY?
