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