Lack of growth :(

[Mehita]

It's been awhile.

DS is still on Remi (7.5mg/kg, 6 weeks) and mtx and has been feeling fine. His last scopes were just over a year ago and microscopically everything was great. Last MRE was... maybe 5 years ago? Last endo appt was 5 years ago and the bone scan said he was only 2 months behind.

My concern is that he's been sitting at 115 lbs and 5'5" for over a year now. At age 17, that puts him in the 5% range. His brother who is 4 years younger has just passed him up. I'm 5'2 and men on my side of the family are no taller than 5'9". Hubs is 6' and men on his side of the family are all 5'11-6'3'. He is proportionate and has fully gone through puberty. If you were to look at him, based on size you might think 8-9th grade, but then if you looked more closely, you'd reconsider (facial hair, demeanor, etc) and think he's older... just small. How concerned should I be?

We have a GI appt coming up and I'm putting together my list. He eats like a teenage boy, no concern about quantity; quality yes, but that's another battle. He's taken up cycling and goes out for 1-2 hours a day, so he's burning calories. No GI symptoms at all. Normal BM's.

Is there a way to tell if this is it? Is he full grown? If ordered by his GI he might (strong might) supplement with Boost or Ensure, but it would be a battle of wills. I know it bugs him being so small, but he's also become very strong headed over the last few years (and our relationship is very rocky). We've always been told because of the Celiac, he'll be 1-2 years behind his peers in growth. I just don't know...?

Any thoughts?

 

[Maya142]

I think you probably need to see an endocrinologist to figure out if he's reach his full height or if he's still behind and will grow. Some kids with IBD grow much later - into their 20s, but if he's gone through puberty, then I'm not sure...

If he is behind and needs to supplement with Boost or Ensure, I would push that. You could also think about an NG tube - I know he has had trouble with anxiety in the past, but he could surprise you. Kids get better at dealing with things as they get older and he might be able to insert one at night no problems.

My daughter found it MUCH easier than drinking. It may not be necessary, but if he does need to supplement, it's something to think about.

It really is much less intimidating than it sounds.

I would also want an MRE if it's been so long since his last one. He has had disease in his small bowel in the past, right?? Why isn't that being monitored? Scopes could be good but he could still have inflammation in his small bowel...

Our GI will do small bowel scans every 2 years at least. I would want to make sure that he is absorbing his calories and if he has small bowel inflammation that could be preventing absorption.

An endo can do an x-ray to see if his growth plates have closed.

Sending hugs :ghug:! I'm glad he is still feeling good on Remicade!!

 

[my little penguin]

Honestly I would see Endo
As Maya142 said simple hand bone X-ray and they will know
Once that windows closed they are done
Given he has been through puberty and hasn't grown in a year
I would be prepared that this may be his full height

Second imaging
Ds has never gone that long for an MRE (even with being allergic to contrast )

Good luck

 

[Maya142]

I wanted to say - my daughter was so underweight she was not even on the chart, till we started tube feeding. Now she is a perfectly healthy weight. Her height did not change much - she gained about 0.5 inches (but she was 16 when we started and girls stop growing earlier anyway) but she went from being way under the 5th percentile to something like 20th.

She was quite pleased about growing even half an inch ! She is only 5'2, and we thought she was done growing.

 

[Mehita]

Ok, I'll give endo a call. Maya, you're right, his disease has been in the small bowel. I'm guessing his GI will order an MRE and require some sort of supplementation. I just don't want to be in the room when he does!

 

[Maya142]

Ok, I'll give endo a call. Maya, you're right, his disease has been in the small bowel. I'm guessing his GI will order an MRE and require some sort of supplementation. I just don't want to be in the room when he does!

My daughter had an MRE this winter. She had a small bowel follow through in the fall and it was awful - she had a hard time drinking the barium and threw up everywhere.

With the MRE we put the contrast through her tube. They did it slowly and she was fine. No throwing up. Some nausea but that was it. It was SO easy!! My daughter was thrilled!! I would ask them to place an NG tube and just pump it in - M says she will not even bother trying to drink it again. I would also ask for some zofran if you don't already have some at home. We gave it to her prior to the MRE and it helped a lot.

She found it much easier this time since she was older. She generally hates MRIs and MREs but it really was not bad at all!!

 

[Jenn]

ditto on the endo. I joke that they never DO anything, but they will (growth hormone) when warranted. It's at least worth checking in and discussing his personal growth expectation. Ask the endo to order a bone age hand xray, and do before the appt, so you can discuss the results at the appt.

My son's first endo kept telling us he's not skipped, he'll grow a couple years after all the other boys are done (ie. 19 or 20). But our current one says there's no crystal ball, it's wait and see. Still, there may be some time now before his growth plates fully close to use growth hormone to get him to his potential.

 

[Tesscorm]

S responded very well to supplemental EN (he was dxed probably mid way thru puberty). Pre-dx, he was ~140 lbs, so ignoring the weight he lost and regained, while on only supplemental EN for two years, he went from 140 to 175 lbs. And, this was all developmental/muscular gain. He didn't gain too much in height (1.5-2 inches) but he was already 5'10" when dxed.

S swore the protein/nutrition in the formula helped him build muscle much quicker than any of his friends. He truly felt there was a noticeable difference between him and his friends when they would start 'working out' at the gym and he attributed it to the formula. This was a big motivator for him. I can't prove this is the case but...

For a reference point, he was taking in 1500 cal/night, 5 nights per week while eating a regular diet during the day (I found he'd skip breakfast because he was 'full' from overnight formula) but seemed to replace it with a third meal late evening (ie half a pizza, steak, etc at 10pm).

This was through the time he was 17 and 18. When he left for university, he'd started remicade and his GI didn't 'enforce' the supplemental EN, so the most I could get him to agree to was to drink 1-3 shakes (Boost) per day. At the beginning, I know he was doing it a bit because I told him the benefits (nutrition, study showing remicade worked longer/better when combined with EN, etc.) and to make me happy, but it eventually become a convenience for him at university as he'd have one instead of making/buying breakfast or as a quick 'fill-up' before/after a hockey game, class, etc.

While I don't think he 'always' drinks one or two shakes every single day now, I do know, whenever he comes home, he asks if I have any for him to take back to school. He says they're heavy to carry home when he goes shopping himself... so I know he does buy them regularly and still drinks them.

Perhaps you can appeal to DS from the 'working out' perspective?? Hopefully, the GI will be onside (you can bring up the study... I once posted it on the kids' reference subforum. It was a Japanese study that showed a significantly increased success rate with remicade when combined with EN).

Good luck!


Oh, and also re the MRE/scopes... S still has scopes and/or MRE done every couple of years. He had a scope almost two years ago and, while all was good at scope, GI said he wanted another MRE scheduled. While he said 'no rush' because there was no issue, he still wants to stay on top of it.

 

[Jmrogers4]

2nd/3rd/4th on endo, better to check that box off than to keep worrying. I think another MRE would be a good idea as well. Jack just had one about a month ago he had to drink 4 bottles of the barium. He drank 2 and they brought him back and it hadn't moved far enough along so they made him drink 2 more. He was a very unhappy camper! We ended up being there for 5 hours!
Just wait until he is 18 then it's well I'm an adult. I let the health care professionals talk to him now. I just sat there while he drank barium and they would come out and tell him to drink it faster (he wouldn't listen to me).
Even with as tall as he is now I think he is still slightly delayed if I compare to his brother, brother can grow a pretty nice goatee, Jack still has maybe 5-6 beard hairs and can go 2 weeks or more between shaving - brother not so much. Jack is still growing in height as well 1/2 inch between last 2 appointments. I think about an inch over the last year between 17-18.
Hope you can get some answers.