Hi -

 

I just wanted to see if there are boys with DMD who are taking Growth Hormones and are still mobile.  My questions are:

 

1. Is your son GH deficient or not?

2.  How long has he been on GH?

3. Has his mobility changed at all since taking GH? Better or worse?

4.  Did you increase stretching daily and/or did you see increase tightness/contractures?

 

Thank you.

 

As you all know, all of these decisions are so hard to make and I know that each child is different but would love to hear your answers.

 

 

Kim Maddux

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Nicolas has been on GH since late March.  I do have to increase his stretching a bit but it's not overwhelming.  since he's only been on it for a couple of months I haven't seen any sure signs of benefits with mobility, but he is 9 and still walks and does not walk on toes yet.  I also make sure to have him wear his AFOs at night, which is also helpful.  My son was definitely GH deficient and he is on Humotrope.  He really hates the daily injections, but it has to be done and he agreed to take the drug.  We let him help make the decision.  he hasn't had any serious side effects, just a couple of headaches, but not horrible.  He has grown a bit already!!  I have heard that GH is helpful with mobility, but since he was already mobile and no real problems yet, except stairs, I have nothing to compare it to.  Hope this helps!

 

Michelle

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