Wondering if there was anyone here whose son is taking growth hormone treatments and is older than ten? My son will be 14 next month is about 4ft. 5 and 78 lbs. He just had a stim test and is very low in growth hormone. We are in the process of getting the treatments authorized by our insurance company. I was hoping I could get some feedback from someone.

Thanks,
Janine

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yeah! Good luck with the shots!
Janine said:
Got approval. Just changed to another growth hormone and it went right through.

Janine
That's great Janine!

I remember them discussing GHD at the PPMD conference last year and the potential of giving it to all boys because of the impressive strength results they were seeing. Does anyone know if they are getting close to that yet or is it still very preliminary?
Hi Karen,
Dr. Wong told me that they are looking for funding to put together a 'formal' study with HgH. We go back in Oct and will find out where she is with that then.
lori

Karen Barnett said:
That's great Janine!

I remember them discussing GHD at the PPMD conference last year and the potential of giving it to all boys because of the impressive strength results they were seeing. Does anyone know if they are getting close to that yet or is it still very preliminary?
I would imagine one of the biggest obstacles might be cost. From what I figured the hgh cost over $33,000 per year.

Thanks Lori, I'll try to post my observations in a few months
Hi Janine,

My son is 14 soon to be 15 in October and is taking growth hormone. He has been taking for about a year. We started in Cincy, but he is now followed locally. Our insurance does cover it. We give our son a shot each night. It's should be given in just the fatty tissue of the skin and not the muscle. We noticed that he increased his height slowly by a inch and 1/2 to two inches. We are being cautious to not obtain a large growth spurt. With Duchenne should be gradual. As the shorter the kids are the less work their muscles need to do to keep them mobile.
My son Harrison started on in this past January. He seems to look better, weight slightly more under control. No change in mobility. That would be a miracle. Again, ordered by Ritter/Wong. I am glad to hear Wong is excited about it. I was a bit skeptical and it is really expensive even with insurance.
Ha, big boy. Our son is going to be 15 in a week. he's 4'2" and has grown almost 2" in a year on HGH, he weighs 112 pounds. He has been on Deflazacort since he was 7 and is still walking, etc. but from the time he was seven until last year he only grew about 3 inches; not a lot in 7 years. His bone age says he has some years of growth so maybe he will get to be a few inches taller.
Michael
I thought I would give an update. We just had his first follow-up appointment. He has grown 1". I have not noticed any increase in strength but the doc said it would most likely be to early to be seeing that.

Janine
Did I update on Seph? He grew 2 inches in 3 mths and that was in October! Everyone is starting to notice that he is growing and I am having to buy pants...all his others are getting too short!!!
Lori,
That's great news!! We're meeting with endo in February. Sam is 6" shorter than his twin brother now. It's really starting to bother him. Sam still has pants from 2 years ago that fit, and I didn't buy them that big.
10 inches in 2 years!!!! OMG!!! I do think that since we went to Cincy in Oct Seph has grown another inch! The problem now is finding pants long enough that fit his tiny tummy!!!!! I LOVE this problem!!!

Rhiannon Hubbard said:
Great news Lori and Janine!!

Isn't it amazing when you can finally see them outgrowing stuff? =) Shoes were the first thing for us, then the pants.

Tomorrow will be 2 years for us since Carter started treatment, and we were just talking about what a HUGE difference it's made for him. He's grown a little over 10 inches and went from 12-18m clothes to 4/5T. He was way below the charts, and is in the 10th% now. Amazing how great it is so see the 10th%!! lol.

We did 5 months off this summer and didn't notice any changes strength-wise on or off the shots. The only thing that changed for him is he almost completely stopped eating, we forgot about how hard it was to feed him before GH.
Hi all!
We are in the process of getting Cole approved for treatment. He has been prescribed Genotropin (1.3 mg/daily) by Dr. Rutter. He's 9 years old. I'm just curious and would like to know if anyone has seen any negative side affects. I'm thrilled to read all the positive ones....but I still worry. I'd also be interested to know what form of HGH others are on (Genotropin/ Norditropin/Humatrope?) and what influenced the physician to prescribe one over another.
Thanks!
Polly Sundeen

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