Evan was being especially flirtatious during our recent trip to the grocery store. One woman said, “He is so darling. How old is he?” She seemed very surprised when he answered, “eight.” His petite build, sweet personality and limited speech skills make him seem more like a five or six-year-old.
I have been thinking quite a bit about his petite build. The size difference between Evan and his peers is becoming more apparent as he goes into second grade. Over the summer several new specialists who are seeing him also voiced their concerns. He is under the 5th percentile in his height and weight. For the first time we discussed the possibility of starting growth hormones.
One new factor that might help his growth from now on, was the repair of his bowel obstruction in June. Hopefully with this corrective surgery Evan’s body is better able to digest food and absorb nutrients.
With the possibility of starting growth hormones, I have new research ahead of me. What are growth hormones? What are the risks? What are the benefits? What questions should I be asking?
I decided to start my research with a new approach. I wanted to see if I could gather some basic preliminary information by asking online doctors. One website, Health Tap, had been recommended to me as a high quality free service.
I had no idea if this website would be worth my time and I was curious to see how it worked. So I went to www.healthtap.com , registered, and posted my question.
“My son, 8, has Apert Syn. At 38 lbs, 3'8", growth hormones are being considered. What are the questions I should ask? What are risks?”
I wanted to write more but this was all the space that was allowed. The website was attractive, easy to use and promised that more than 14,000 U.S. physicians belonged to this forum. Healthtap states: “We’re dedicated to improving people’s health and well-being by providing our users personalized health information and free online and mobile answers from thousands of the best physicians in the U.S."
Within four hours I had answers from two different doctors. Their answers were brief, as their space is limited too. However, I felt the answers were excellent and gave me some new leads to follow:
“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.”
And from doctor #2:
“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.
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. “
I was invited to continue a conversation with these doctors for $9.00. Not too bad, but for the moment I opted to end here.
I was impressed. Both answers gave me new ideas to think about.
For my own knowledge, I tried a few other online websites advertised as free services. These proved unsuccessful.
After submitting my question to www.askthedoctor.com I was notified that this site isn’t taking any new registrations at this time. I was redirected to www.justanswer.com/health/ . This website was beautiful and easy to use. I was pleased that I could ask a lengthy question, seemingly without a word count limit. However, after I submitted my question I was told it would cost me $38 for the answer. I declined.
Next, I went to www.mdtalks.com which also looked very promising. I submitted my question and was prompted to “wait one moment while your question is processed.” I waited 10 minutes and nothing happened. I tried again with the same result. It might be my computer or it might be the site, but this site didn’t work for me.