Delayed Puberty?

[ChicagoMom]

My 11-year-old daughter was diagnosed with Crohn's disease in April so we are still pretty early in this process but I'm just curious about puberty. L's bone X-Ray showed her bone age to be 7 years, so she has a pretty significant growth delay. She's anxious to grow, and several of her friends are starting to go through puberty. I remind her often that this is going to take longer for her but I'm just curious for those of you who have been in a similar situation, how long after achieving remission did your child start to go through puberty. I know that every child is different, I'm just trying to get an idea of a timeline.

 

[AZMOM]

Great thread. Claire's 11. No remission here. Lots of her friends are obviously headed down that road....Claire hasn't showed the slightest sign of a any changes yet.

J

 

[my little penguin]

They should have you fill out a form for puberty at each Gi visit .
There are multiple stages .
Weight and growth play a big factor.
Adding En ( formula with food) or EEN ( formula only) can help with decreasing inflammation and increasing growth/weight.
DS has been on peptamen jr since nov 2011 ...
First as EEN for 9 weeks then as a supplement 2-3 a day.
Once the remicade started to work - 6-8 months later he started to grow .
He has gained 36 lbs and grown over 7 inches in the past 1 1/2 to 2 years almost .

The plan is to stay on En until he is done growing since most Ibd kids are barely at the bottom of the curve .
My kiddo moved from the 25% at dx to the 70% now.


Good luck

 

[Mehita]

My son is finally in remission and started growing almost immediately after starting Remicade - 3 1/2 inches and 11 pounds in 6 months. Getting the disease under control and getting rid of all inflammation is key.

Since your daughter was just dx'd in May, I'm assuming that's when she started 6MP also? Is she doing well on it? If so, then you'll probably start seeing changes as she gets healthier. Keep in mind though... pred will slow, if not stop, any growth.

 

[Patricia56]

As Mehita says, expect no growth and no progress toward puberty as long as she is on any form of steriods. This includes Entocort which is a topical steroid for the small intestine.

My educated Mom guess is she is going to have a long wait before she gets into puberty if her bone age is 4 years behind. Get a growth curve chart and use it to chart her growth. The GI should be checking this with great precision at each visit. Get the numbers and do your own charting to help her see that she is growing and that there's a wide variation that's normal. Even if she's at the 5% if she starts following the curve then she will get to puberty eventually.

My son was diagnosed at 10 and was very short for a long time. He finally started gradually growing until he reached 5'8" at age 17. His growth never matched the curve - it was gradual not in spurts.

If she achieves remission but there's still no signs of puberty starting within 6 months to a year then I would ask for an endocrinology referral. But until she's in solid remission there's no point. They will just tell you she has to be in remission and off steroids for growth/change to occur.

You can console her perhaps by telling her that some girls don't really get into puberty until 16 or 17. Unless that is your family history she's likely to get to puberty well before then.

 

[vtfamily]

He has gained 36 lbs and grown over 7 inches in the past 1 1/2 to 2 years almost .
My kiddo moved from the 25% at dx to the 70% now.

That is so awesome!

Gus has been using formula for about three years. He doesn't like it, even though it goes through the g-tube, so he doesn't use it consistently enough. Doc thinks gastroperesis is the problem...that will be our next test.

I'm definitely going to share your results with him!

Thanks.
Cheryl VT

 

[vtfamily]

Gus has delayed growth too. We have regular appointments with an endrocrinologist to keep tabs on growth and puberty, as well as potential intervention options. Those visits help him understand the physiology involved and have helped him cope with his situation pretty well.

His growth plate x-rays have remained pretty consistent. If we can get his inflammation under control and put some weight onto him, he should be able to catch up to his expected growth table. Though, compared to his pre-Crohn's projections, he will be two or three inches shorter...not bad, all things considered.

Cheryl VT

 

[myboy12]

We were told at our last visit that, while his blood work has vastly improved, that until the micro inflammation is controlled, we should not expect the rapid growth that his peer group is now experiencing. Our GI doc is not concerned, but as a parent, I hate seeing his disappointment in falling behind his friends. Giving it a little more time before we seek out an endocrinologist.

We did not experience any growth in height on prednisone, but we did see significant weight gain, and a little height gain after the taper was complete.

 

[Patricia56]

As a general rule, kids with CD have not been shown to benefit from growth hormone treatment. While it can be helpful to have endo consult to rule out hormone imbalances beyond that, in our experience, there's not anything they can do for a kid who is short.

Getting them into remission and keeping them in remission are the keys to growth for kids with CD.

 

[Jmrogers4]

Still waiting for puberty to hit hard here... Jack will be 15 next month but has only really been in a good solid remission since January. We saw the endocrinologist did all the tests he is in normal range so it is just a matter of waiting and I agree it is hard on them when they compare themselves to their peers. I agree with everyone else keep track of her growth and really question if she is not growing.
I questioned but not hard enough and Jack had very minimal growth and no weight gain for 3 years before it really became a big concern and by that point we were behind the 8-ball so to speak. We now figure he had low level simmering inflammation and it did not show up on labs which we all relied on too much as we have since discovered his bloodwork is always in the normal range.
I think everything will come together this year as he has really grown since January and put on weight and is back on the same curve for weight as he was pre-crohn's, we're not there for height but he has grown more in the past 6 months then he has the past 3 years.