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NF 1 and Humane Growth Hormone?


My daughter is an 8 year old with Neurofibromatosis 1.  She has numerous caf
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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
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Avatar universal
Typo in the subject/title, correction- "Human Growth Hormone".
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