Crohn's and Growth Hormone Therapy

[Phillymom]

Are any of your kids on Crohn's meds and Growth Hormone Therapy (GHT)?
Our 13 year old son is newly diagnosed with moderate Crohn's and is currently on Apriso and Entocort. He has also been diagnosed as Growth Hormone deficient and on GHT, but the GHT is not working because he is not yet in remission.

They want to start him on Remicade. I wish we had more time to try alternative meds/diets, but since your bones solidify by 15-16 years old we worry we'll lose precious time. This is all so stressful.

If any of you have had success with growth on Remicade or have any other ideas or advice, I'd greatly appreciate hearing from you.
Thanks!

 

[Maya142]

Hi and welcome.

My own daughter was put on Remicade when she was diagnosed at 16. It took 3-4 infusions but she began to feel a lot better. 8 months later, we scoped and ALL the ulcers in her colon had healed. In fact, her colon looked "beautiful" - like she didn't have IBD. There was still mild inflammation in her TI but even that was much improved.

She was about done growing when she started Remicade, so we only saw about half an inch of growth.

She had no side effects at all with Remicade and the infusions were very easy - a chance to nap, watch TV and miss school . She quite liked them!

Have you considered enteral nutrition, in addition to whatever medication you choose?

Many kids do it to gain weight and to help with growth. My daughter was severely underweight when we started. She tried drinking the shakes at first, but couldn't drink enough to maintain her weight, much less gain.

So we eventually went to an NG tube. It was much less scary than we expected! She inserted it every night and took it out in the morning, so no one at school had to know. We ran the feed overnight and that's when she got her extra calories.

Within a week, she could insert it in less than 10 seconds. It sounds really intimidating, but it's not. She found it much easier than trying to drink the shakes.

It was the only thing that put weight on her - we tried LOTS of things - diets for example - but formula worked best. She gained about 26 lbs with supplemental nutrition - an amazing improvement, considering she had been so so underweight that she had been hospitalized for just her weight 3-4 times.

Are you at CHOP by any chance? We go there and they are very big on enteral nutrition. Some kids do EEN - which is either 100% formula or 90% formula 10% food - to induce remission. It is very effective - it works as well as steroids, if not better. Other kids just do supplemental EN (like my daughter) and use formula for weight gain and growth.

Some kids need tubes to do it and others have no problems at all drinking.

Here are some parents who have experience with both EN and Remicade:
my little penguin
crohnsinct
pdx
Clash
Tesscorm
worriedmama

 

[Phillymom]

Thanks so much for your reply. I'm so relieved to have found this group!
Yes, we're at CHOP with 2 docs, one in Endocrinology and one in GI.

First of all, I'm so glad to hear nutrition has worked for your daughter. We're in a strange situation. My son's weight is not the problem, it's his height. we actually started with the endocrinologists first and then discovered he had Crohn's. He started GHT 9 weeks ago and he hasn't grown at all. The endocrine docs were very surprised to see that and are concerned that if we don't get him in remission the therapy may not work and he will not get to his potential height. Both my husband and I are on the shorter side so we are pushing for everything he can get.

Yes, nutrition was suggested and actually recommended to us at first, but our summer is packed with three weeks of travel abroad and then my son has 4 weeks of overnight camp. Because of the disruption, and that my son was showing push back about nutrition when it was suggested to him, our doc said Remicade is probably our best bet.

Btw, we increased his GHT a few days ago and now the mini flare up has subsided. Thanks to you and your reply to me, we're going to reach out to his GI doc again today to further discuss nutrition for him before trying Remicade. I realize I have some more questions before making this decision. Thank you so much!

 

[Maya142]

Just to clarify, exclusive enteral nutrition can be used to induce remission - just like steroids. But you will need a maintenance medication, like Remicade, to keep the Crohn's under control. Enteral nutrition by itself is not usually enough to keep the Crohn's under control, especially once you stop doing formula only (100% formula/EEN).

So chances are, you'd probably want to do both nutrition and Remicade for the maximum control of the disease.

He could take the enteral nutrition wherever he goes - including to camp. My younger daughter is in college and has a feeding tube, and does her feeds there. She initially started out with an NG tube but now has a permanent tube in her belly. Some kids choose to drink the shakes and then they're even easier to carry. You can put them in a thermos so other kids can't see what he's drinking and so the drink stays cold (they taste better cold!).

Most kids will start with a semi-elemental formula like Peptamen Jr at CHOP. Or you could try a less broken down polymeric formula (like Boost or Ensure) but that might be harder to tolerate (but it would taste better). My daughter hated Peptamen Jr at first, but got used to it and was able to drink two cartons a day. It wasn't enough for her, which is when we decided on the tube.

 

[Jmrogers4]

Many boys continue to grow past the 15-16 mark and growth plates remain open, I know my own 17 (nearly 18) year old son's growth plates are still open since he fractured one in his wrist in February. How's puberty/development going? That was a bigger worry for us at that age (although size and growth were a huge concern). At 14 1/2 my son had virtually no signs of puberty and was about 5 foot tall, we went through all the hormone testing with the endocrinologist and he was not deficient just on the lower end. He also started remicade at the same time. For him that was and has been his miracle drug, he started to gain weight immediately and grew a couple of inches over the next 6 months and then just took off. He grew 9 inches over a years time and puberty hit hard and fast and went through about 3 years worth in 1 year.
He is now just over 6 foot tall (and still growing). We tried many things prior to remicade but felt we had no more time to lose when we started a little over 3 years ago.

 

[Tesscorm]

My son also used exclusive EN to induce remission, also through a NG (naso-gastric) tube.

He was just turning 17 at diagnosis and most of his height (5'10") was already there... so we didn't see a huge jump in height but he did gain another inch or two over the next 2 - 3 years. He was also quite underweight at diagnosis and, over the next two-three years also gained almost 50 lbs of 'healthy' weight (ie developmental, muscular, etc.). This was all due to the initial 6 weeks of exclusive EN, which took him into clinical remission and then he continued with supplemental EN (at half dose) for two years. He did not start remicade until 1.5 years after diagnosis, so most of the weight/height gain was attributed to EN and having reached clinical remission.

Remicade was added because the supplemental EN was not enough to eliminate all remission. While I haven't seen obvious/outward signs of any change since starting remicade (ie most weight/height gain was already done), MREs and scopes have shown that all inflammation is gone and my son has no crohns symptoms.

We also haven't seen much in the way of remicade side effects. He's been on remicade 4 years and, over the last couple of winters, he's seemed to catch more than usual colds/bronchitis... but, hard to say for certain that it's due to remicade or just a couple of bad years for infections (he lives at university, ie lots of other kids, etc.)

I do encourage you to try both - remicade and EN. If your son isn't willing to do exclusive EN (which is understandable, it's not an easy thing to do!), did your GI suggest steroids? Usually, when beginning the maintenance med (ie remicade), either exclusive EN or steroids are used to induce remission quickly. The maintenance med will then continue/take over once the EN/steroids treatment is ended.

 

[sabrina123]

We had growth/endocrine issues in our family - some on HGT. Bc of that, after crohns diagnosis is daughter and with a year of no growth (height issues), our dr wanted to keep steroid use at limited (she had been on until official pathology) - and not to induce remission. Our dr recommended a form of nutritional therapy (SCD like) plus maintenance med (Pentasa) - though would have been fine with remicade. (We had already been doing the nutritional therapy with success).

However, we had remicade pre-approved and the dr set a very clear date a few months out, by which labs had to be great, symptoms gone, and growth restarted significantly. If daughter didn't hit those marks, we were to immediately start remicade. We worked with our endo in conjunction too - check growth plates, etc. She grew nearly 2 inches in 2 months.

We will have scopes annually, labs frequently to make sure on track- anything goes off, go to remicade.

For us, diet therapy took us a bit to make work, but we have a good team GI/nutritionist/endo that are very supportive and can offer some guidance to make things work a little more logistically.

Good luck!

 

[pdx]

My daughter was diagnosed at age 12, and has been on Remicade and methotrexate for a little more than 2 years now. She also used EEN via NG tube for several months at the beginning, because Remicade wasn't enough at the start; she needed something to jumpstart her healing before Remicade could take over. Following EEN, she used overnight tube feeds for several months more to help with growth.

She grew a lot with this treatment combo. She has gained 5 inches of height and 50 pounds since her diagnosis, most of that in the first year.

I can understand that your son wouldn't want to try any special diets or EEN over the summer, but I think you'd still have time to try it this spring. The usual course of EEN is just 6 weeks.

Good luck with whatever treatment you decide on. I hope it works well and quickly!

 

[my little penguin]

Een (formula ) would not replace remicade
It just might help boost growth some by giving nutrients your kiddo can absorb and letting ng remicade work more effectively

Did they do a bone age scan?
That can tell you how much time is left .

Fwiw Ds is doing een again
He drinks neocate jr (elemental formula ) all orally
No tube

Good luck

 

[cmack]

Hi Phillymom,

I was still growing when I was 20. A friend of mine who took illegal steroids closed his growth plates at 15. He is 5'2'' I'm 6'1'' I was taught by my gym teacher about the harm that can be done with anabolic steroids. Growth hormone is a whole different thing. I knew a really short guy in grade school who had growth hormone treatments. He ended up average height 5'10'' or so.

I wish you the very best for your family.


Best wishes,

cmack

 

[xmdmom]

One can grow until one's growth plates close. The bone age not the chronological age determines that. Puberty is what ultimately closes the growth plates. Do you know his bone age? Has your son began puberty?

How long has your son had symptoms of Crohn's?

What height percentile and weight percentile is your son? Or alternatively, what's his age, height and weight?

What does your son's growth curve look like? Has your son been following a growth curve or growing parallel but below the 5th percentile OR has he clearly fallen off a curve? If so, when did the fall off begin?

In my experience, one will not see a big effect in growth if the Crohn's is not well treated.

Also how (what specific tests) did the doctors use to diagnose GH deficiency?

 

[ChicagoMom]

Our endocrinologist was flatly opposed to hormone growth therapy until she was absolutely sure that the Crohn's was under control. She felt that the hormone therapy could not overcome active Crohn's disease, and would not be worth the effort. We opted to do supplemental NG tube feedings, and that, combined with a bigger dose of Remicade, has put my daughter in remission, and she's gained weight and grown. I can't say enough positive things about the supplemental NG feedings. When I think back to where my daughter was a year ago, as opposed to where she is now, I desperately wish that I would've agreed to the NG tube feedings much, much sooner. I should also add that while we did see a lot of improvement with the Remicade alone, the addition of the NG tube feedings really made the biggest difference in DD's growth.

 

[cdnrose]

This is an interesting thread. My 15, almost 16 year old son is very small for his age and just recently went to see an endocrinologist. Since I have crohns she was concerned his lack of growth combined with his ongoing stomach issues may point to crohns as well. We've now had an ultra sound, bone age test and extensive blood work done and are waiting for the results. He hasn't really hit puberty yet, he has a very small amount darker hair over his lip but that seems to be the extent of anything that may indicate that it has started.

I hope that we can get quick results from tests and get him onto a treatment plan of sorts, he is bullied constantly due to his size and it is changing his happy go lucky attitude to that of a negative one..that may also be an indicator of puberty though.

 

[Phillymom]

Thanks for your input everyone! It is incredibly helpful to hear your stories.

My son is 13.6 years old. He has not started puberty, but I will confirm again as I remember an earlier visit where I heard pre-puberty during our discussion with the growth docs.

I think the real concern is with his bone age which was initially scanned at 11.5 years when he was almost 13 and in less than a year his latest scan shows it has increased to 12.5-13 years old.

He failed the growth hormone test prior to being diagnosed with Crohn's. He needed to score a 10 or higher and he only scored a 4.6 so he's not producing enough growth hormone at night. Since it took 2 months for us to get the growth hormone through insurance, I'm a bit concerned about him going off of it. Unless it hurts the situation, I'm an advocate of keeping him on. We've read that it can actually help Crohn's lesions.

His weight and BMI are actually really good. He loves to eat! It's just his height and as I said my husband and I are on the shorter side so we want him to get every inch he can.

Between a call with his doc this morning and hearing from all of you I'm now convinced that Remicade is the way to go. We'll look into the NG to supplement if needed as well, but with a very busy summer of travel and overnight camp they don't want it disrupted and would consider starting him at the end of August.

Thanks again everyone!

 

[Phillymom]

Oh, and at 13.6 years old he's 4'6 and weighs 78 pounds.

 

[xmdmom]

How tall are you and his other parent?

Reading a bone age isn't an exact science. Do you know who read it-- a pediatric endocrinologist or a radiologist?

Did they do a test where they gave him drugs to stimulate GH or did they check GH every so often during the night? Diagnosing GH deficiency is also not an exact science...and some doctors are liberal about it and others are conservative.

 

[my little penguin]

You can travel with and ng tube and easily insert it overnight
Given time is not on your side I am not sure why the wait
There is never a good time to start
My kiddo is 13 as well and on all elemental formula right now(no food )
He drinks it all orally
No tube

Not by choice
It is a medicine used to treat his Crohns not food

And has been using formula since age 7
He has gone on vacation and camp etc...
Not een the entire time sometimes just supplementary
But life is always busy

It has allowed him to grow
He gains 60 lbs and grew 12 inches since dx

He is now 112 lbs and 5'2"

Most kids pack on lbs -10 or more at a time and then grow 2-4 inches at a time during puberty

No kid picks een or ng tube or supplemental formula as a option
Either the parents or the GI state this is what is going to happen (same as other meds )
Or it doesn't happen

 

[Maya142]

My kiddo was also VERY against the tube. She tried very hard to drink formula but just couldn't get enough to maintain her weight, much less gain.

Finally she was so underweight that her GI insisted. She was really nervous about the tube, but it ended up not being a big deal at all. It really sounded much more intimidating than it actually was.

She did talk to a psychologist about how to explain the tube to her friends - that helped a lot. It also helped her deal with the whole situation and learn how to cope.

She is in college now and her friends and roommates don't bat an eye at the tube. It's no big deal at all.

She has gained more than 25 lbs with the tube. She feels a lot better and has a lot more energy now that she is not malnourished.

Since he's already 13, I'd guess starting as soon as possible is ideal.

 

[Jenn]

Hi, we check in with an endocrinologist each year. The goal was addressing the IBD, then the growth. My son finally resumed growing and started puberty once Humira worked and has not needed GHT. He was 2 years delayed in bone age for a long time. Best of luck on Remicade!