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Green Bay, WI
A 45-year-old female asked:

My son, 8, has apert syn. at 38 lbs, 3'8", growth hormones are being considered. what are the questions should i ask? what are risks?

2 doctor answers6 doctors weighed in
Dr. James Ferguson
Pediatrics 46 years experience
Pedi Endocrine: As long as this is carried out under the supervision of a pediatric endocrinologist i think your risks are minimal.The hormone is synthetic, not like one used years ago derived from glands, & this eliminates most of prior risks. You will want to understand how long the treatments will last & how much growth to expect. Also what would they consider success or failure & any reasons to stop.
Dr. Vered Lewy-Weiss
A Verified Doctoranswered
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Questions: Apert syndrome is rare and no long term studies using gh on such patients, per se, though we use gh in patients with other types of skeletal dysplasias, like in turner's & noonan's syndrome regularly. My questions would be 1) does your son have septo-optic dysplasia which has been seen in some with apert's? It can cause a gh deficiency. 2) any obstructive sleep apnea? To be cont.
Dr. Vered Lewy-Weiss
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Provided original answer
Ask about any data your pediatric endocrine team has about using GH in Apert's or similar. Are long-term GH use risks different in Apert's patients than in others receiving GH for FDA approved indications (Apert's is off label). I don't know the answers to these questions but would be glad to learn. Best wishes to you and your son.
Aug 26, 2012

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Last updated Sep 28, 2016

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