Growth Hormone Replacement therapy?

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Growth Hormone Replacement therapy?

Postby Dakota's Mom » Tue Jul 13, 2010 8:00 am

Hope everyone is enjoying their summer! It is going fast for us!!

We are still trying to sort through all of Dakota's latest issues. He is still doing great with the TC surgery. He has now been cleared to see the ortho only once a year because the scoliosis has improved so much! Big yea for that!!

However, he is still not growing properly. He will have lots of labs to rule out some other endocrine problems, and growth problems are common in kids with NF. The talk of using growth hormones is emerging again.

Does anyone have experience with GH replacement therapy? I have read some promising articles from NIH about it resolving SM and Chiari. But, I have also been warned that it can really make scoliosis curves worsen. But, the other concern is with his widened pulse pressure, and growth hormones help hearts grow strong. Sigh....to much to sort through.

I would hate to use the GH therapy and have the scolosis curve wickedly progress. But, I would love for the syrinx to go away--which is probably a stretch, but a girl can hope.....Any thoughts?
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
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Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE

Re: Growth Hormone Replacement therapy?

Postby syrinx48 » Tue Jul 13, 2010 2:32 pm

My oldest son is getting growth hormone treatment since the age of 7. He has no CM/SM or other problems that way. His brains are functioning normal. He is now 25 and is almost ready and be a doctor. Just doing his internships.
His pituary gland has developed wrongly in the womb, and only his growth hormones are afflected. Other hormones are good, no problems with that. He has developed just normal. That's all I can say. I hope this helps?

Annemarie
syrinx48
 
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Re: Growth Hormone Replacement therapy?

Postby Dakota's Mom » Tue Jul 13, 2010 3:54 pm

Thanks, Annemarie.

For those interested, I posted links in the all about Chiari section of the board that discuss CM and SM resolution with growth hormone therapy. The pituitary-Chiari/SM connection is very interesting.

If we go down this road, I will keep you posted on how it affects the SM and scoliosis.

Thanks!
Mom to Dakota (11)--Neurofibromatosis, SM (C2-T8), Left Thoracic Scoliosis, Seizure Disorder, Autism with Cognitive Impairment, Osteoporosis, Hypothyroidism, Untethering surgery 5/08
and Joshua (8)--happy, healthy, and supportive brother
Dakota's Mom
 
Posts: 62
Joined: Sat Oct 20, 2007 6:17 am
Location: Omaha, NE


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