I can give you our experience on both LDN and remicade. My son started on LDN about age 12, we were worrying about puberty and he had not grown or gained weight on Imuran despite normal labs so GI didn't feel he was bad enough to warrant jump to biologics and I was terrified of scary side effects of biologics so I had read a bunch of stuff and studies on it and agreed to give it a go. Things got worse before they got better and it was a long time till we reached a good spot after about 8 months and I thought things were good we kept waiting on growth, weight gain and puberty to hit. We decided to add supplemental EN and he did gain weight on it but as soon as we stopped it his weight went down. We had about 4 really good months and then he got c-diff and things just kept going farther down hill and lost most of the weight he had gained he also grew an inch while on LDN so not a great amount but after 3 years of no growth we were hopeful this was during our 4 really good months. We added Imuran back to his meds and did EEN for 8 weeks a burst of prednisone hoping to get back to that good spot. He was now 14 and not a sign of puberty so we also scheduled a visit to the pediatric endocrinologist. They did a bone age scan and said he was 2 years behind and he might possibly be low on hormones. At this same time he had an MRE through his GI and found lots of inflammation throughout the small intestine and a slightly raised fecal calprotectin (all other labs were in normal range as they had been the entire time). He had been back on Imuran long enough that we should have seen some improvement if it was going to work so we made the decision that we had to do something. He was 14 and 5'1" and 89 pounds, his 12 year old brother had passed him in height and weight and puberty! It was really starting to effect Jack mentally and socially. We decided to move forward with remicade and wait on additional testing for the endrocrinolgist. He gained weight right away. We were lucky in that he started feeling better immediately from the remicade, half way through his first infusion he told me he was starving (this was a child that was never hungry and I had to remind to eat) we went out after and he really wanted a cheeseburger and fries. He ordered a double cheeseburger and ate the entire thing and a whole order of fries yes not the most healthy of meals but I was at the point that I would feed him anything he would eat. His meals would consist of eating a few bites and leaving more than half the food on the plate.
That first infusion was January 2014 by April he had grown another inch but we decided to go ahead with endocrinolgist testing as we were still worried about height and puberty. The tests showed everything was fine and GI talked to him about how sometimes people are just short and develop later (even though neither husband, myself or his younger brother were late bloomers). By July of that year he really started growing and reached my height of 5'4" and had caught up with his younger brother. They both really enjoyed that they were the same height as me
It didn't last long as Jack just continued to shoot up and now not quite 2 years later he is 5'10" and still growing and he went through about 3 years of puberty in 1 year. Went from no body hair to shaving. His younger brother is 5'9". We still struggle with his weight but he is now where near the emaciated state his was in.
So short version after my novel. LDN just wasn't worth the time it took to get any kind of relief and it wasn't enough to keep him there. He also had this weird head bobble thing (almost a twitch) going on while he was on it. It has disappeared since he's been off it. We thought he had some kind of injury and he had massages and chiropractic stuff to try and fix it but now I think it was probably a weird side effect of the LDN. I think looking back now the LDN also suppressed his appetite farther, he just never felt hungry.
Remicade was our miracle drug, he is living a completely normal 16 year old life with barely a thought for his Crohn's except once every 8 weeks when he has to get his infusion. He did not miss a day of school last year and has only missed one this year and that was due to pink eye. He has a zero hour class and works out every day after school, has a part time job, a girlfriend and still managed all A's except for a B in Accelerated Pre-Calculus on his report card he got just yesterday.
