Delayed puberty

[CDJ]

We had a routine appointment yesterday for Josh. He will be 13 in January. One of the things that has come up is that he is showing no sign at all of starting puberty, and the doctor is also concerned that he hasn't grown taller in about a year.
Apart from keep on checking him, she has said there is nothing they can do until he is 14, so 14 months away at least. Even then I am not sure what can be done.

I know steriods can have this affect and also crohns in itself, but until now he has met all the growth markers, so I wasn't really expecting this. He finished the last course of steroids in April [ 3rd lot in 3 years ] Josh has high hopes of reaching his 3 brothers heights of 6ft +, so I am not sure what this holds for him at the moment. His brothers had all well started puberty by this age.

Has anyone elses child gone / going through this? And is there anyway it can be overturned? I just feel that with this disease it is one worry after another.

 

[Dexky]

Paging BriansMom

My son finally started puberty at 13 1/2! He has grown quite a bit from 13-14 so I guess I can understand them drawing the line at 14. Good luck

 

[Johnnysmom]

We went to a Pediatric Endocrinologist and found it very helpful.

My son was not gaining weight and his growth stopped for a time as well. The Endocrinologist said that kids with mild or moderate crohn's should continue to grow unless they become too under weight. My son's BMI at the time he stopped growing was 15. His Dr. said once the BMI gets too low they stop growing due to malnutrition.

The Endo also got an x-ray of our son's hand and was able to tell his "bone age". This shows how much time he has until his growth plates will close. Some kids with crohns will have a bone age much younger than they are. For instance, you can be 13 with a bone age of 10 years old. The illness has a way of 'suspending' the onset of puberty, and once the child is healthy things start back up again. The Dr. also took blood tests and found out what my son's Insulin-like growth factor, serum free T4, and TSH to make sure everything was functioning properly. My son's levels were normal, but if the IGF is low they can give shots of growth factor to jump start puberty. I have 2 friends who have gone that route with their child and are very happy with their decision. There are risks and benefits to be talked about with your Dr. but it is still an option.

We found meeting with the endocrinologist very helpful. Our Pediatrician referred us, I don't think our GI would have. He had the opinion that if the crohn's is under control, growth will be fine. Our endocrinologist disagreed and we did as well.

I have also given you a link to a great article on catch-up growth.
http://edrv.endojournals.org/content/18/5/646.full.pdf

If it were me, I would not want to wait until 14 to see an endocrinologist. But, if that is a route you don't want to go, extra nutrition will be very helpful if he is under weight. We started doing protein shakes and adding calories everywhere. We didn't see a big jump in weight until his fecal cal became normal but the extra foods helped.

((((hugs))))) and I hope your son sees some growth very soon!!

 

[crohnsinct]

Yeah I don't agree that there is nothing they can do. He is still young and I think that 13/14 age range is probably a big turning point for a lot of kids not just the ones with Crohns but still a closer look now would go a long way.

No vertical growth in over a year? Our GI would be concerned about that. His thinking is that if the Crohns is under control the child should be growing, gaining, maturing etc and if they aren't then they need to be looked at further...imaging, endo etc. to find the cause. When was the last time there was any imaging to rule out simmering inflammation?

My daughter is growing and gaining but no puberty yet. I think that is the last piece of the puzzle. GI isn't concerned about that yet (she is 14) but if in a year still stagnant we will revisit.

 

[upsetmom]

I understand your concern..:ghug:

My daughter just turned 16 and is finally starting to hit puberty now. Although her height has never been affected.

I too was starting to get very worried but our GI wasn't concerned as her bone age was only 13. He said she was still growing and was going to be a late bloomer.

Has your son had a bone age x-ray done?

 

[Brian'sMom]

We have had the same issues!! (Got your page Mark!) I took him to Endocrinologist. He did an array of bloodwork and an exray of his hand. He was able to determine a lot from all of it. He said his testosterone levels were high...so puberty is on its way. He got a predictive height if he continues like it is now...and a height he'd be if inflammation was knocked out. From the x ray he said he's a year and half behind...but that's good cause that means he'll keep growing longer than his friends that are growing now...thus catching up. And from the blood tests he could see that his growth factor hormone was in normal range. Brian is doing nightly NG tube feeding and that has dramatically added weight and muscle. Endo wants the GI to get inflammation under control then wait 6 months and see how the EN feeds have helped. If he's still having issues there is a more indepth growth hormone factor test they can do.
Hope this helps. My son is 13 1/2 and in 8th grade. Before EN at night he was 4'8" and 67 lbs. In first month he went up to 75 lbs. No increase in height yet. But we're dealing with a flare right now. Once inflammation is under control I think he'll grow.
Also, Endo asked about when puberty hit for me, my husband, my other 2 kids. He thinks late onset of puberty runs in my family (Kinda embarrassing...but yes...I was a late bloomer along with my daughter...my sister...etc. He said that matters)
The testosterone test was tell tale I think. I'm not worried anymore.
I agree with Johnny's mom...I wouldn't wait to see endocrinologist. Go now
Hope this brings some peace

 

[Tesscorm]

I don't believe Stephen had developed crohns at 12 or 13 (or, at least, we had no indication) but he was always quite small and thin... his sister is only 13 months older and she was truly a foot taller and 20 pounds heavier ALWAYS. But, at around 14 years old, he suddenly shot up! He literally grew a foot or more within 2 years. So, 14 may be a common time to 'spurt' for boys... but, I also think it would be a good idea to start looking for any problem as crohns does certainly play into it.

After being diagnosed, he did exclusive EN for six weeks and then continued with supplemental EN for a total of 2 years... in that time, 16 to 18 years old, he gained 50 lbs and another 1.5 to 2 inches! (Some of weight was just regaining what he'd lost prior to diagnosis.) So, I also encourage supplemental EN! The nutrition certainly can't hurt!

 

[Mehita]

Is his Crohn's currently under control?

Puberty and growth kicked in after my son had a resection this past January (he's 13), but then stalled again when he flared and was put on pred. Like the others have said, keeping the inflammation under control seems to be key. We haven't seen an Endo yet, but may consider it soon. I'm kind of holding out to see what happens once he's off pred in a couple of weeks.

Just for comparison since our kids are about the same age, my son is currently 4'10" and 85 lbs.

I don't think it would hurt to see an Endo if you're concerned. If anything, it might bring some peace of mind and goodness knows we all could use some of that!

 

[Jmrogers4]

We are hoping for puberty/growth spurt to hit this year, Jack just turned 14 and was stalled at 4'11 and 77lbs for several years after diagnosis. He started on LDN just a few weeks before his 13th birthday and grew an inch in after about 6 months but still did not gain any weight, once we added supplemental EN in February he grew another inch and gained 23 lbs in 8 weeks but has not gotten any taller since then and seems to be holding steady about 96 pounds.
His 12 1/2 year old brother is starting to show signs of puberty but nothing for Jack. His GI doesn't seem concerned, it's always we'll see where he is at next appt.
We just did a 5 day burst of pred, he had been going downhill since right before his birthday so hopefully we got everything under control and he will start growing again but of course I worry about it.

 

[Patricia56]

No growth = no remission
Prenisone = no growth

Between the two I am not surprised your son is not growing and has no signs of puberty.

I suggest a 2nd opinion GI right away.

I would also recommend visit to ped endocrinologist but I can tell you the most likely verdict is the above. You will not see growth while he is on prednisone and there is no reason to do pred if he is in remission.

My son had no growth for 3 years prior to diagnosis. Didn't grow for 1 year post-diagnosis because he was not in remission. Once he got into solid remission he was slow to grow/reach puberty but he DID grow. He was diagnosed at 10, clearly started a gradual move into puberty about age 15.

Last summer when he was 16, bang:wine: - there was suddenly a man living in my son's room. Has a beard starting if he doesn't shave every other day, deep voice, lost 40 lbs for no reason (his GI says this isn't unusual at puberty) and has the typical male physique now.

He has continued to slowly grow and has finally reached 5'8" which is great since we had resigned ourselves to him being 5'5".

 

[CarolinAlaska]

I totally recommend supplemental enteric nutrition. If he can't drink it, then he should do nightly NG tube feeds. Our kids who are not reaching puberty need all the help they can get.

 

[CDJ]

Thank you for all your informative replies. I will ask about being referred to an Endocrinologist at our next visit. He did have a bone scan done just after being diagnosed, almost 4 years ago, but I will ask about getting another one done.

Josh lost a considerable amount of weight earlier this year when he was flaring, inflammation was found to be in his small bowel. Since then, with treatment, he has put some weight back on and actually is no longer underweight. He is 154 cm and 46 kg. He came off prednisolone in April. He is actually still fitting into clothes that he was wearing two years ago, so he obviously hasn't grown much in that time.

None of our family were late starting puberty, and all my elder sons were all 12 - 13 when they started. Hopefully over the next year things will start to change

 

[Patricia56]

Kids grow the most in the spring and summer so it's concerning that he didn't put on any height at all despite being off the pred.

It's important for him to put on weight as this comes before height in most cases. If it is certain that he is in remission then supplementing his nutrition is your best bet in encouraging his growth. Catch up growth requires about double the calories for the expected size which means a LOT of calories. Liquid nutrition is the easiest way to get this along with using high calorie foods in his diet - things like cream and butter. You know - the stuff most of us are trying to avoid!

If he still doesn't grow despite supplementation then he needs to be cleared by endocrinology and then go back to the GI because it is unlikely that he is in complete remission.

 

[DustyKat]

Hey CDJ, I can't add to the recommendations you have been given but will just reiterate regarding where you are at present with inflammation. Has further small bowel imaging been done since Pred has ceased? What are his inflammatory markers showing?

Sarah is a classic example of what bowel inflammation does to a prepubescent body. Certainly she was undiagnosed at the time so no treatment had ever been instigated but at 14 years old she showed no signs of puberty at all. She was diagnosed during emergency surgery and the offending section of bowel removed (ileocaecal resection). This action put her straight into remission but her condition had deteriorated significantly in the previous 18 months so for the first 6-9 months post op nothing happened growth wise however there was significant weight gain. Then at about 15 I swear she did three years growing, in all ways, in 12 months.

Also bear in mind that with small bowel involvement then any inflammation/scarring will affect the absorption of vitamins/minerals/nutrients.

Dusty. xxx

 

[pops14]

hi

L was in the same situation aged 13 was not diagnosed till 13 1/2 consulatnt said his desease started when he stopped growing despite x2 courses of modulin months of Pred and Azathioprine he has slowly started to grow and enter pubity aged 14 so dont despair we were very worried but gradually he started to show a few signs these started before he started to grow con said that it all starts to grow down below then they grow, L is way below his older brother who is nearly six foot aged 15 both had sinular centiles so he has alot if growing to do. Have heard crohns kids can continue to grow way after there piers have stopped nature has a way of sorting things out. do push to get him off pred .

Katie

 

[ChampsMom]

Hey CDJ,

My son was a late bloomer... I was (like you) very concerned about his size (diagnosed at age 13, he was so small and thin, BIG/HUGE difference between him and his friends). But the doctor assured me, if he was suppose to be 6 feet tall he would be, but probably later than everyone else....

This has proven to be true (he also did prednisone). He was 14+ before he started showing any significant changes and then one last Summer (age 15) BAM he grew 6 inches and has put on a ton of weight - mostly muscle mass, not a lick of fat on him!

He just had his 6 month check up and he's grown another inch and he's put on more weight...

Just because your other boys were faster into puberty doesn't mean he will be too. I have found that my IBDer's body (and mind, laughs...) does things in his own time (sometimes much to my dismay!)... but alas, it will happen...

I think the Endo idea is cool. I was early to puberty, but my brother was late, so I wasn't overly concerned. If it is available, why not.

 

[CDJ]

Thank you again for the reasurring answers. It is good to have understanding people who "get" what I am going through, it is so hard to explain to others at time. Katie- He isn't on pred now, that was earlier this year.
It is good to learn that though others may also be later going into puberty, it will happen at some point. I will just enjoy my boy while that is what he still is, and hopefully he will start to become a man within the next couple of years

Crohns really sucks at times when it affects so much of our children's lives. Like everything else, we shall deal with it and get on with it