My son Nicolas is growth hormone defecient per Dr. Wong's team.  Can anyone give me their insight of growth hormones?

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My son is also growth hormone deficeint. he is on genotrophin. His IGF level was 9.
I've heard through Dr. Rutter (she's on Wong's team) that most of the boys there are on growth hormones.  We will be starting him on Humotrope soon, but wanted to know if anyone has experienced side effects?  If so, please explain.  Nicolas peak level was 7 which is good for insurance, but I feel bad for him.  Before steroids, he was as tall or taller than other kids his age.... Now he's 8 and the shortest (besides the girls) in his class.  Only reason I'm starting growth hormones is because I don't want him to be SO DIFFERENT, as we know that the wheelchair and participation factors (in gym) make him different as it is.  I guess it's vain.
LOVE having my boy on Humatrope.  He's 5.5 and has been taking it since last October.  Not only has he grown 1.5 inches, but he is ALSO walking up stairs without using the railing and alternating legs.  It's not for every kid, though.  Some get tremendous headaches that should be watched carefully. I'm a big fan of it.  Even with this fast growth, the stretches we've been doing has helped minimize a loss of flexibility for what he had before the meds.
Lisa, how old is your son?

Liisa Underwood said:
LOVE having my boy on Humatrope.  He's 5.5 and has been taking it since last October.  Not only has he grown 1.5 inches, but he is ALSO walking up stairs without using the railing and alternating legs.  It's not for every kid, though.  Some get tremendous headaches that should be watched carefully. I'm a big fan of it.  Even with this fast growth, the stretches we've been doing has helped minimize a loss of flexibility for what he had before the meds.
He is 5.5 yrs old. Very much in the DMD honeymoon timeframe.
Was he deficient Liisa? Why have you decided to start GH so early?

Liisa Underwood said:
He is 5.5 yrs old. Very much in the DMD honeymoon timeframe.
We were just intending to get the hormone baseline once he started the steroids. However, he was already showing defiviency. So, based on what we heard about the positives, we decided to go ahead and start. Liisa
oh...i misunderstood when you said 5.5 earlier...i thought you meant 5ft 5 inch..

Liisa Underwood said:
He is 5.5 yrs old. Very much in the DMD honeymoon timeframe.

I am confused is the growth hormone given with the steroids.

My nephew has DMD and is currently taking deflazacort but doesnt seem to be growing in height. Just trying to find out more about this growth hormone. Hope someone can help me with some insight to it.

I think one first test that can be done is to measure IGF-1 levels. That along with a bone age x-ray and the growth charts could give an idea if there is growth hormone deficiency. Personally, I haven't hear about anyone starting GH therapy so early unless they are deficient. GH therapy can have very serious side effects in some cases and it isn't proven to benefit the Duchenne progression, however if the boys are deficient side effects could be monitored closely and it might be helpful. There will be a clinical trial in Cincinnati sponsored by Charley'sFund and partners testing an FDA approved IGF-1 medication. It would be great when we see some data showing if it helps or not.

@ Ofelia:  I agree that it is not a proven DMD therapy and is not for every kid.  Connor was already deficient when we went to get a baseline.  There will never be an answer to the question:  Was he deficient becuase of the steriods or not? However, I do like the fact it has improved the functionality he does have.  It has given him much more confidence in himself, especially as he is finally coming to a point where he understands that his body won't do what he wants it to do all the time.  He also understands that his body's ability to do things is different from his friends.

 

In any case, I am very happy we decided to it with him.  He's a real trooper for taking the shots.  And, we are closely monitoring him with the doctor.

Right. GH helps the boys grow. The only thing that I do not know, since there is no data supporting it, is if they help improve strength in any way. In other words, if your son started steroids and GH around the same time, at age 5.5 the strength improvement might be due to steroid and age alone. We cannot say if GH would contribute to that at all until a clinical trial is conducted. From what I heard Dr. Wong's team has several boys on GH (older ages) but the results obtained so far are mixed, one cannot say that GH does more than helping the boys grow at this point...which of course is important, being too short cannot be good for their self confidence... Then you run into the other thing doctors say when recommending steroids, "short is good in DMD"...either way it's hard to know what's best to do, a personal decision as everything else in DMD.

Liisa Underwood said:

@ Ofelia:  I agree that it is not a proven DMD therapy and is not for every kid.  Connor was already deficient when we went to get a baseline.  There will never be an answer to the question:  Was he deficient becuase of the steriods or not? However, I do like the fact it has improved the functionality he does have.  It has given him much more confidence in himself, especially as he is finally coming to a point where he understands that his body won't do what he wants it to do all the time.  He also understands that his body's ability to do things is different from his friends.

 

In any case, I am very happy we decided to it with him.  He's a real trooper for taking the shots.  And, we are closely monitoring him with the doctor.

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