Delayed growth

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jland25

jland25

Joined
Mar 13, 2014
Messages
27
Location
Hudson Valley, NY
Hello,

I was wondering if any of you had growth issues with your children. My son is 13 and only in the 3rd percentile for height and weight. His full height potential should be 5'8", but as of now he is on track to be only 5'2". I am happy to report that his Crohn's seems to be well managed at this point, but of course I am concerned about his poor growth.

He is not deficient in growth hormone and his testosterone levels are normal (he is going through puberty). His bone age is about a year behind.

We are meeting with the endocrinologist later this week, but I was just wondering how others have handled this situation.

Thanks for any insight!
 
I am having this issue too. My son is doing really well apart from growth. He has stayed the same for about 2 years now and hasn't changed shoe size either. I will be interested to hear what the endocrinologist says to you
 
OH YES!!!
We have been round and round on that issue. My son was diagnosed at 10 and was 4'1o" at that time and his growth pretty much stopped he made it to 5'1" by 14.5 (a year ago) so at a time when kids are growing several inches or more a year my son grew 3" over a 4 year period.
His Crohn's we thought was well controlled minimal if any symptom other than lack of growth/weight gain. Labs all in normal range. I kept asking the GI "shouldn't he be growing" and while it was noted it was always he will he just needs more time. I also think that while they knew how old he was it just didn't really register. It really wasn't until his GP said something about his growth not changing over the last year and he was sending an IM to his GI that things really started rolling also the fact that he was flaring at the time.
It was always suspected that he had small bowel involvement but no further testing past scopes done (but then his labs were normal) so it was assumed this was under control as well.
He had a fecal calprotectin done September 2013 which came back high and another one done in November 2013 after 8 weeks of EEN which came back even higher. A MRE was scheduled which came back showing inflammation in the small intestine about the same time we started seeing the endocrinologist to see if there was anything else that was contributing to lack of growth. Lots of testing over several months, no hormone issues causing lack of growth.
It was decided to try remicade in January 2014 because maybe he had the inflammation in the small intestine all along and that was contributing to lack of growth. After starting remicade he put on weight fairly quickly but it was a tense 6 months before we saw any growth. I'm happy to say that he is currently 5'7.5" and still growing. So he has grown 7" in the last year, his growth velocity is off the chart at the high end instead of his height and weight dropping off the bottom. Weight continues to hover around 25% which is where he was pre-crohn's.
So in the end for us, we have to assume it was disease activity and once we got rid of all the inflammation his body did what it was supposed to do and just took off. I think he has grown 3 years worth of height and puberty in one year. Went from no body hair to having to shave his upper lip.
Hope you get answers and keep digging if you just feel that there is something more, trust that mommy intuition. I just had the GI thank me at his last infusion for pushing the growth issue as he just assumed he was just meant to be a small child. (I'm not huge 5'4" and always bring him to his appt.). His dad is 6'1" and his younger brother who is 2 years younger had passed him in height and pre-crohn's you could guarantee what height his younger sibling would be based on what height Jack was at a certain age.
Jack's bone age showed him just about 2 years behind which would put him at the same age as his younger brother. They are currently the exact same height and are within 3-5 pounds of each other.
Good luck
 
Lots of IBD kids have growth issues. Nor until the disease I well controlled does the growth start to kick in and even then it took my daughter quite a few months of good solid remission for growth to start. How long has he been in remission? Are they determining good control from labs alone or was there imaging and biopsies to confirm remission?
 
Same here D didn't grow for 1.5 years. Once healing started and she reduced prednisone to 20 mg something just clicked finally. After that last growth spurt at 13 she hasn't grown since and are assuming thanks to all the meds she is done. Strange though because she was predicted to be about 5" taller. We gave up and have just accepted it, but I also know as far as girls go, once they get their periods there isn't much more that will happen in the growth department for height.
 
My son who is now 13 sounds very similar. Very little growth prior to dx, he's not even on the chart. He is 13 and only 54 in. I don't think he's in remission tho. He's never had many symptoms other that occasional loose stools and lack of growth. Been to the endo, no issues there. My husband, myself and daughter are all on the taller side...not giant but def not short. He just started remicade a few mo ago so I'm hoping this will help control things and allow him to grow, he's just now started to put on some weight....his arms no longer look like sticks...I just wish he'd grow, he's getting very self conscious about it.
 
We just had our appointment with the endocrinologist last week. He did a really good job of explaining things to me and making me feel more confident about my daughter's growth. She has dropped quite considerably off her growth chart in the last two years (from 60%. To 27th). The GI has not been worried, but our pediatrician was very concerned. After a hand XRay, it shows my daughter's bone age to be behind her true age by one year. If he were to plug that in on a growth chart, it shows her to be in the 70% for bone age. Since most girls her age have gone through their BIG growth spurt and she hasn't, it skews things. She has not started puberty, so he has no big concern that she won't catch up to her destined height (just at a later age than the average girl her age). He also mentioned that heavy steroid use will mess with growth (we have only done 5 days of steroids-no worries for us thus far). We are still awaiting blood results from the visit, but do not expect anything to come of those. We will continue to see the Endocrinologist 2x year to monitor her growth.
 
How confident are you that he's in remission?

JMrogers son is the best example I know of hidden disease activity. My son was similar. You've got to get him healthy enough to be able to start absorbing again.

Our Endo told us she'd be hesitant to do growth hormones without a solid remission. that was pretty much our only option since DS's bone density was only two months behind.
 
Hoping someone may be able to lend some advice. Went to the Endo today and DS (13 1/2 years old and believed to be in remission) has grown 2.2 inches and 10 lbs in 6 months!

Great news we thought...but the Endo looked concerned and ordered another bone age X-ray, (note: previous x-ray showed him 8 months behind). She thinks based on physical examination today that he may be progressing through puberty too quickly now and that she is concerned is growth plates will close early and that he will not reach his maximum height of 5'8" to 5'10" (he is currently 5'2"). She talked about a drug to slow things down and potential growth hormones. Will get the results of the bone age next week. Ugh hate waiting!

Has anybody else seen this rapid acceleration through puberty? Is this normal catch up? Thinking of getting a second opinion!
 
Weird MLP I do not get any of your pages....

Hmm I do have experience with this but it is with T and it was before Crohns dx. She had precoscious puberty. Went through all puberty and growth by age 9. After she got her period we were told not to expect any more growth etc. Even bone age xrays confirmed she was done. At one point we were offered homones to stop puberty etc but opted not to interfere but I get that it is different for a girl. She has actually squeeked out an inch or so since being treated for her Crohns and the GI thinks she will grow a little more. Go figure!

O on the other hand did exactly what your son did. No puberty for the longest time, treated Crohns, got her to remission and she grew almost 5 inches in a year and sped through puberty. No xrays done as we weren't concerned so I can't say growth plates were closed but endo and GI agreed she was done at 5' 4" and we should be excited that she grew that much. A year later she is 5' 7"!
 
My daughter has had delayed puberty and growth. She grew hugely since getting her Crohn's in better order. No experience like your son since she is older.
 
When you are all talking about no growth, do you mean mainly height or weight or both? My son is undiagnosed but we have some family history of crohn's. His height has only very slightly slipped in the last year but he has gained no weight at all in 14 months. He's 9 and I'm hearing as long as his height stays kind of tracking the weight thing is ok. (Despite both weight and BMI at <1%.) I just insisted on a referral to revisit this.
 
For DS weight that remained the same ( crossed percentiles ) and later slow weight loss were red flags.
Lack of height ( veritcal growth ) was later after the weight loss started
 
Weight loss, constant canker sores and abdominal pain were the symptoms we saw first. Then the lack of height until the disease was under control.
 
My son had lack of height growth, still does, his weight was constant, although has gained a bit since treatment...still waiting for height growth to kick in. He also had canker sores and loose bowl movements.
 
No change in height/weight from 9/10 combined with daily stomach ache, and a 12 pound loss in the 2 months before diagnosis lead to diagnosis. After diagnosis we had no weight change (other then gaining back the 12 pounds he had lost) and only a couple of inches growth over 3-4 years (10-14 years old) all other symptoms disappeared except lack of growth/weight which finally led to more testing only to determine he most likely had active disease in the small intestine nearly the entire time. The right meds have made all the difference for him in the last year and a half he has gone from 5'1" to 5'8" and gone from 89 pounds to 130 pounds.
 
Ages 5-8 my son grew very minimally and that was his only symptom until age 8. His pediatrician was monitoring his growth and over those three years he plateaued on the growth charts and was about to fall off. Until the GI symptoms started, we had no idea what was going on. After the GI symptoms started the "aha" moment happened and we were sent to a ped GI for dx. By then our ped was thinking Celiac which the GI confirmed and topped off with Crohn's.
 
Thank you. I read a lot of the growth posts on this page and am never sure. Mine has grown 4 cm in the last year in height. This is a slight drop in percentiles but not dramatic. The weight is more obvious. He initially lost weight and then regained only part of that and has been stuck there for about a year. We evaluated some of this three years ago (when a massive drop in percentiles happened, plus GI issues, and I joined this board). He had a scope that was aborted after they caused a bleed (found nothing as far as it got but we did rule out celiac pretty well). He just seemed to spontaneously do better some months after that. He has never been as big as before all that but was up to around the 8th percentile in height and weight. Small but he was staying on some kind of track. Then whatever happened last year and he's just stuck. Not a lot of GI symptoms this time around except he is full after not eating much and regularly complains of vague abdominal discomfort/queasiness. GI appointment in June. Meanwhile I will continue to follow. Thanks.
 
I always had growth issues growing up too. However, my folks aren't tall people so I probably wouldn't have gotten much more than my 5 ft anyway. But, I've always been underweight too and still am. Even now that I'm in my 30's I still haven't hit even close to 100 lbs. I hope you guys can get things taken care of better now than we did in the 80's and 90's. Sending hugs to each of you.
 
My son has definitely has had issues with his weight. He was 90lbs when it started at 13 and every time he would gain some weight he ended up losing it when he had a flare and stayed there for at least a year. Last year he got up to an all time high of 124! Had a flare and went down to 105 and then back up to 118. He is 3 months shy of 16. His voice started changing about 6 months ago so he should be rapidly growing at this point but he hasn't yet and I don't see how that can happen with the weight swings. His height has dropped too but at puberty kids are all growing at different times so it is hard to go by percentiles. Last April the Dr said based on examination he has a growth spurt to go through but haven't seen that yet. People tell me about their teenagers growing out of their shoes and clothes so fast and that really hasn't happened with him. He is a hair or so shy of 5'10 and based on my husband and I , he should be about 6'2. In my family the guys are 6'1-6'6! I worry that things aren't under control for him right now and his time to grow is going to pass him by. We haven't been to an endocrinologist and it hasn't been suggested. I know based on family history , we have late blooming family so I hope that is all it is.
 
crohn'smakesmeangry I would ask for a bone age scan at the least that way you would know how long he has for growth. My son will be 16 in July and a bone age scan was done a little over a year ago which showed him about 2 years behind in bone age so at 5'8" he is the same height as his 2 years younger brother so I have to think that even though he is nearly 16, his body is 14. Make any sense?
The bone age is a simple x-ray of the wrist. It's hard waiting and hoping and not sure you should or shouldn't be doing something because maybe that's the way it's supposed to be... For what it's worth my son's GI recently thanked me for pushing as he just assumed he was meant to be small. After adjusting medicines and really getting things under control he grew 7" over the past year
 
I agree on the bone scan. Through the course of 2 bone age scans we are starting to notice a slight (1-2) month acceleration in bone age. Based on a rapid progression puberty (basically some serious catch up!) and this slight acceleration our Endo recommended Letrozole to keep growth plates open to assure DS reaches his targeted height of 5'8' -5'10". Definitely getting another opinion before making a decision.

Having the bone age studies gives great information and as to where they are at!
 
Jmrogers, I remember chatting on here with you - it has to be over a year and a half ago- maybe when your son was first starting remicade. When I came back on it was so awesome to see how great he was doing! I would like to see things get under control for my son and then see if he grows. In the last year he has grown 2 inches but that is not spurting! There have been time periods in the past year where things were under control ( or better control) and that is when he grew. I know his Drs are going to figure it out for him and if he's not growing then I will get the bone scan. You're exactly right , it's difficult to determine if it is the disease or that's just how he is meant to be.
 
Bone scans are standard and should be done on Ibd kids to get a baseline regardless of whether they are growing enough or not.
It also tells if there are osteoporeous concerns etc
I wouldn't wait given his age
We were offered one shortly after dx
And will probably get another one on a year or two
Good luck
 

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