First Endocrine Visit: Growth Hormone Here We Come!

The long awaited appointment with Siena's endocrinologist, Dr. Diane Stafford, of Boston Children's Hospital, finally came today! We were a bit anxious for this meeting for a couple reasons. First, we want to get Siena started with Growth Hormone as soon as possible. Second, we didn't know where this doctor stood on the concept of early application of growth hormone. We hear from many families that they had trouble getting their endocrinologists to buy in to the idea of starting growth hormone. We feel it's a lack of awareness of all the great research findings that are going on right now. Dr. Stafford specializes in Prader Willi Syndrome and currently has about 40 patients with it at the moment, ranging anywhere from 6 months to 21 years. That fact alone made us feel much more comfortable! She's been working with children with PWS for years and has a ton of experience. A wave of relief came over us when she finally dropped the idea of starting growth hormone early! She said she would like to schedule her sleep study right away to get the process started. We couldn't believe it! A sleep study is a test done to find out if Siena has obstructive apnea, which is basically an obstruction in her breathing pathways (something that is not uncommon with PWS). They need to know this before starting the growth hormone. If she does have this, they'll simply need to make adjustments to Siena's plan, using a mask that will create positive pressure in her airways to allow her to breathe easily. The reason it's so important to know this, is that growth hormone can increase the size of the tonsils, creating a bigger risk if there is already some sort of obstruction (the apnea). Once the sleep study is done, and we know where Siena stands on the apnea situation, Dr. Stafford said she'll have the growth hormone in our hands in no time! She also mentioned that we'll get trained at the hospital to administer the shots (supposedly a very small needle similar to an insulin shot) properly. We are VERY exited to get Siena started on this process. They'll be calling us in a week to schedule that visit. Many children don't get to start growth hormone this early, with insurance obstacles, doctor cooperation, etc.. So, we feel blessed to have such a great running start! If there is anyone unhappy with their Endocrine doctor in the Boston area, you HAVE to check out Dr. Stafford--she is amazing!