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Neurology  (Expert Forum)
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NF 1 and Humane Growth Hormone?
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NF 1 and Humane Growth Hormone?

by 4myangel, Mar 04, 2007 12:00AM

My daughter is an 8 year old with Neurofibromatosis 1.  She has numerous café-au-lait spots, ancillary freckling, hamartomas in her brain, slight learning disabilities, but no external tumors at this time.  She has been seen by an endocrinologist for growth delay.  She has been falling off her growth curve the past few years.  Her endocrinologist feels that HGH treatment can help her achieve a suitable adult height.  Will putting her on human growth hormone for 5 years increase the amount of neurofibromas that she develops?  If so, how much more severely than if she has no HGH treatment.  Some Dr.s have said it is a different hormone that stimulates tumor growth and therefore would not affect the outcome. Others have said it will affect the skin and her external and internal tumors would become more numerous.  Do the majority of NF patients experience even less growth at puberty than their peers?  

Thank you for your time and support.

by Forum-M.D.-SH, Mar 12, 2007 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.      
   The treatment of NF-1 patients with Human Growth Hormone (HGH) is controversial.  NF-1 patients tend to be shorter and have larger heads than their peers.  A percentage of NF-1 patients will have HGH deficiency when tested, but others will have growth delay even with 'normal' HGH levels.  Many endocrinologist will recommend HGH supplimentation regardless of HGH levels.  The amount of growth is modest in most cases with 1-3 inches of growth and should not be considered 'curative' for the short stature of NF-1 patients.  HGH has not been associated with increased tumor growth, and is not considered to cause progression of the disease.  There are hormones that seem to increase tumor growth, but these are the 'sex' hormones (estrogen, etc).  This is why NF-1 lesions are worse around the time puberty and with pregnancy.
I hope this has been helpful
Member Comments (2)

by 4myangel, Mar 05, 2007 12:00AM
Typo in the subject/title, correction- "Human Growth Hormone".
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