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growth

Does anybody know if there is a documented reason why some boys with dmd are shorter than average? I'm not getting much of a response from our clinicians. They pretty much say that he's "just genetically smaller -not related to dmd". However, my husband is 6'4", I'm 5'10" and my other son is on the 100% centile for height. Seth is just about in the 9th centile (he's almost 3y/o). He had a blood test that showed low-ish levels of igf-1 but he wasn't deficient. I've since learned, however, that a one off blood test for hormone levels is unreliable. What other tests should i be insisting on?
Physically, Seth is fine, but i know being so little bothers him a lot.
Anyone with clinical experience tell me what's going on here?
Thanks.

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Permalink Reply by Lori Ware on October 20, 2011 at 9:09am

Did you do the 3 hour growth hormone test? That would tell you definitely if he is deficient. All of my children were small until they hit about 5 y/o and then grew to where they are some of the taller of their friends. However, my son never did...of course, for him, that was steroids, we assume as he is not growth hormone deficient (by the 3 hour test). We put him on growth hormones anyway and he is growing about 3"/year now and is back on a normal growth curve. I know being small bothers them! My son hates it!

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Permalink Reply by lisa burke on October 20, 2011 at 9:37am

Thanks Lori. No, we didn't do the 3 hour test, just a one off blood draw. Our clinicians seem reluctant to do anything else for some reason. I forgot to add that Seth's not on steroids yet. I dread to think how small he'll be when he is.

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Permalink Reply by Lori Ware on October 20, 2011 at 10:15am

If he was borderline low on the IGF-1 through a blood draw, I would request/demand a 3 hour test to see....but that's me...lately I seem to be VERY demanding!!!

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Permalink Reply by Ofelia Marin on October 20, 2011 at 3:45pm

At Seth's age the IGF-1 tests might not be reliable. Dr. Wong had several boys that age with lower results. Which also makes me ask why this test is performed at that age, but other strange tests are performed in the DMD world w/o any historical evidence, when boys are diagnosed so young no one knows exactly what to expect. Anyway, she recommended to us repeating the IGF-1 after 6 months and having a bone age x-ray. If you are really worried Lisa, you can do the 3 hr test, or repeat the IGF-1 after 6 months then do the 3-hr test. Once you start daily steroids you should expect slow growth due to them...it's a known side effect. :(

Hopefully Seth's future will offer better alternatives than daily steroids and growth hormones!

Lori Ware said:

If he was borderline low on the IGF-1 through a blood draw, I would request/demand a 3 hour test to see....but that's me...lately I seem to be VERY demanding!!!

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Permalink Reply by Jessica Rownd on October 20, 2011 at 3:49pm

I agree. Wyatt's was low, we did the stimulation test and it came back normal. But it is your right to request it.

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Permalink Reply by lisa burke on October 20, 2011 at 5:07pm

Thanks for your replies everyone. I'm going to chase up an appointment and ask for the 3 hour test. If he's not deficient then i have no idea why he's so little. It's silly but it really bothers me. And him.

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Permalink Reply by Liisa Underwood on October 25, 2011 at 4:08pm

Lori, you crack me up =) Ofelia and Lori are right. Make sure you get a recommendation for a good pediatric endocrinologist.

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Permalink Reply by Marla Swope on October 28, 2011 at 3:58am

I can't be of any help as far as clinical experience, but I thought I would share my son's experience with being smaller than others his age. Baylor is 7 years old now and is in the 3 percentile for height, and only weighs 42 pounds. He has always been small, but it hasn't seemed to bother him thankfully. His classmates and friends are very protective of him. It may be partly because of his stature, along with the fact that they have been with him since kindergarten. They know about Duchenne because of the presentations I've presented to them in K and grade 1. I think that helped a lot for them to have a basic understanding of DMD, and how it affects Baylor everyday. I work at the school two days a week in Baylor's grade, and it is so wonderful to get to see how the kids make sure he is involved, and how they watch out for him. We are also a tall family, so sometimes I wonder if he is smaller because of DMD. At the MDA clinics they have never suggested any tests to see why he is so small, so we haven't worried about it. Baylor did have a growth spurt when he was 6, so maybe Seth will catch up, you never know =)

Forgive me for rambling, I'm up way to late =)