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03/15/2012 07:59 PM

LFS and Growth Hormone Deficiency

nlongmore
 
Posts: 6
New Member

Does anyone have a child with LFS who has growth hormone deficiency? My 5 year old had proton radiation which included her pituitary gland and now she is severely growth deficient. Her endocrinologist is researching pediatric cases around the country but hardly any have LFS experience.

Thank you

Nicole

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03/15/2012 11:59 PM
mamas4monkeys
Posts: 103
Member

I remember reading something a few months back about growth hormone and LFS- I don't remember where though- I think it was a paper online about the actual growth hormones. I know that growth hormone can potentially increase the risks of cancer, so having LFS is a definite consideration when trying to decide best option but I don't have any idea what the risks are. SO many of the LFS cancers are so rare there isn't a lot of info. I would suggest having your endo call an institution that has a lot of experience with LFS in general like Dana Farber or MDAnderson- they would be your best bet at finding docs who might have insight into both areas. My kiddo is on the other end of the growth spectrum which I know we will have to look at options for some sort of intervention eventually as well. I hope you can find some guidance, please let me know if I can help look or dig for more info.

06/28/2012 07:53 PM
nlongmore
 
Posts: 6
New Member

Thank you mamas4monkeys my endo doc called several large institutions (including MD Anderson where she had proton radiation treatment) around the corner most of which said due to lack of information that she should just be be kept monitored and to be vigilant. So we are going thru the process with insurance of having her HGH approved and will probably start next month. I'm not looking forward to it but she needs it as it goes beyond needing it for stature purposes. Thank you for your comments & helping hand.
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