Has anyone noticed their boys having a harder time walking after they get taller?
Sam did not have to stop steroids when tested to start HGH. This was done in Cincinnati.
Andrea Cleary said:
To those of you with experience in HGH treatment and/or the medical professionals out there,
Did your son have to stop steroids for a period of time when they did the stimulation test? This is what our pediatric endocrinologist is telling me has to be done (I think she said 3 months). We don't want to do that as Simon has responded to Deflazacort very well, except of course for the growth failure. We want him to grow, not deteriorate and grow!
Yes the growth hormone may help your son gaining some height. Donot worry for taking steroids. Your son should continue taking steroids.
Alejandra Lagffer said:
Hello I am just to take a decision on giving my soon the grown hormone not for the heigh issue but for him to recover strenght he is know taking deflazacort and the doctor told us he uses genotropin for this is this safe? Can this really help my son ?
It is not necessary to stop steroids when on Growth Hormone. My son still taking steroids (deflazacort) while on steroids. We have seen a great improvement in his height velocity (around 8-9 cm per year). He also has a much better weight / height ratio.
On the other hand we have not seen any improvement on his strength.
You said that your son is on the PTC trial. Please consult your physicians for the trial BEFORE starting with growth hormone!!
Andrea Cleary said:
Yes, but we can start new meds once in the extension phase (Sept.26), as long as they don't affect coagulation. And our participation in the exon skipping trial is why I am asking if endocrinologists were requiring the boys to stop steroids for their GH tests. Simon would not be able to continue in the research trial if not on steroids, and we don't want to stop them anyway!
And I really don't care what his GH levels show, I just want it prescribed regardless (he has fallen off the growth curve and only grew about 1.5 cm in 4 years!), since I know this is done and other boys are growing significantly. Yes there can be side effects, and perhaps in his case it won't work either, but I would like to give it a try, with medical supervision. Ordering over the internet and getting substandard and possibly dangerous product contraband is not an option I am willing to take though.
I've pointed out the irony to the endo team that doctors were also wary of prescribing steroids for DMD, and that it is now a standard treatment.
I have already consulted the GSK exon skipping trial team, and they are fine with my son starting GH if we so choose, once the official one year trial has finished and we begin the extension study (this September).
My question was if the kids had to stop steroids for the GH stimulation testing done before beginning , not during GH therapy.
Our endo says that the presence of steroid in the blood sample (in vitro) interferes with the test and gives false results. Ofelia and Laurie have confirmed that other boys have continued with their regular dosage of steroid while undergoing the test. Now I need to find out if that was the correct thing to do.
My son's endo said nothing about stopping the steroids to do the test for growth factor.
Thank you J. :-)