Coming out of lurkdome to seek advice/thoughts/been-there-done-that for my son. DS (now 11) was diagnosed this past February with Crohn’s, mostly in the terminal ileum. In the spring/summer of 2013 we took him to the ped because we thought he had a virus and was not eating as well as he should have been. It was sporadic sometimes he’d eat really well and other times he’d be full. Ped did bloodwork and stool test but at the time only checked for blood in the stool (oh if I had known then what I know now ;-) ) and the bloodwork came back as anemic. We went to a hematologist who tested him for Thalassemia and had him on iron but not much changed. Fast forward to winter of 2013/2014 we finally see an endo after the ped is still not happy with his lack of growth and iron levels still not that great. Endo did the “right” blood test and found his ESR was elevated. He also did a wrist bone scan and found his bone age to be on target for 10 plus or minus 6 months (he was exactly 10 ½ at the time). Saw the GI in Feb, did endoscopy/colonoscopy and found Crohn’s. We were blindsided to say the least.
Of course in my naïve panic mode I though no way will we put our kid on these meds. You wonderful people here told me in many nice ways (and I’ve learned more and more by lurking) that diet alone doesn’t work and that medical intervention is usually necessary. We decided to give it a go anyway without the “big guns” and he did a few months of entocort, he is currently on LDN (slowly increasing since May up to full dose since end of August) and has been following a gluten free/dairy free/corn free diet since March. And of course those reading along shaking their heads saying it is not enough are right. While his bloodwork is almost normal, his calprotecin hasn’t gone below 200, he is still anemic (we’ve started iron infusions – had 1 so far and will have another 3 more at least) and he is not really growing. He has not lost weight but really hasn’t gained more than 2 lbs and has only grown 1” in the past year. At the last GI appointment the GI said she still felt some inflammation when pressing on his right side (where his inflammation was mostly located) and son confirmed that while he was not in pain when she pressed, it felt like he had more room on his left side than his right. We all mutually agreed to give it to November to see if the LDN fully kicked in and then we’d come back to make some decisions.
So all this to say, we know we have to do something, I just don’t know where to start. I won’t do 6mp. We met for our 2nd opinion the Dr. that was part of 6mp research and he said he won’t prescribe it for tween/teen boys because of the risk (although in all fairness he did emphasize that the risk was small but to me it is telling that the person behind some of the research would not prescribe it). I’m sort of leaning towards MTX but I’m not sure which is the lesser of all evils. I’d love some advice/thoughts/anything. I’m of course afraid of side effects, both long and short term. Do these meds cause sterility? Will his hair fall out? Will he have an appetite? Is it possible to start the meds and go off them/go back on? I don’t mean yo-yo type but do people get to a point where they are good for a few years then try something like LDN again? I know some will suggest EN but he just won’t do it. I may try to see if I can get a single can or two of peptamen just to waste my money, lol. He did protein shakes on the advice of our nutritionist for 2 months and he can no longer drink them. Mentally he is done with them and they tasted pretty good with fruit added. He can’t fathom a nasal tube and he is a bit of a panicker so I know that won’t happen unless he is drugged and forced so I don’t have high hopes for him to drink peptamen and I’m not even sure at this point what it would do?
If you've lasted this long, thanks for reading my novel.
Of course in my naïve panic mode I though no way will we put our kid on these meds. You wonderful people here told me in many nice ways (and I’ve learned more and more by lurking) that diet alone doesn’t work and that medical intervention is usually necessary. We decided to give it a go anyway without the “big guns” and he did a few months of entocort, he is currently on LDN (slowly increasing since May up to full dose since end of August) and has been following a gluten free/dairy free/corn free diet since March. And of course those reading along shaking their heads saying it is not enough are right. While his bloodwork is almost normal, his calprotecin hasn’t gone below 200, he is still anemic (we’ve started iron infusions – had 1 so far and will have another 3 more at least) and he is not really growing. He has not lost weight but really hasn’t gained more than 2 lbs and has only grown 1” in the past year. At the last GI appointment the GI said she still felt some inflammation when pressing on his right side (where his inflammation was mostly located) and son confirmed that while he was not in pain when she pressed, it felt like he had more room on his left side than his right. We all mutually agreed to give it to November to see if the LDN fully kicked in and then we’d come back to make some decisions.
So all this to say, we know we have to do something, I just don’t know where to start. I won’t do 6mp. We met for our 2nd opinion the Dr. that was part of 6mp research and he said he won’t prescribe it for tween/teen boys because of the risk (although in all fairness he did emphasize that the risk was small but to me it is telling that the person behind some of the research would not prescribe it). I’m sort of leaning towards MTX but I’m not sure which is the lesser of all evils. I’d love some advice/thoughts/anything. I’m of course afraid of side effects, both long and short term. Do these meds cause sterility? Will his hair fall out? Will he have an appetite? Is it possible to start the meds and go off them/go back on? I don’t mean yo-yo type but do people get to a point where they are good for a few years then try something like LDN again? I know some will suggest EN but he just won’t do it. I may try to see if I can get a single can or two of peptamen just to waste my money, lol. He did protein shakes on the advice of our nutritionist for 2 months and he can no longer drink them. Mentally he is done with them and they tasted pretty good with fruit added. He can’t fathom a nasal tube and he is a bit of a panicker so I know that won’t happen unless he is drugged and forced so I don’t have high hopes for him to drink peptamen and I’m not even sure at this point what it would do?
If you've lasted this long, thanks for reading my novel.
