Wednesday, December 18, 2013

Follow-up Endo Appointment

We had our follow-up appointment with Dr. Paez, Evelyn's endocrinologist, this afternoon.  She wanted to meet with us to discuss Evelyn's stimulation test and the growth hormone therapy she will be starting.  She showed us the results of her test - basically the growth hormone levels at each of the 7 blood draws.  They consider anything below a 10 to be failing the test, and she said that most children who fail will peak around 6-7.  Evelyn's peak was just over 3.  The good news with this low of a number is that we should have no trouble getting insurance to cover her therapy, which is around $10,000.00 per MONTH (yeah, gonna need some insurance to cover that!).  It takes several weeks to go through the insurance authorization process, which includes an MRI of Evelyn's pituitary gland to be certain it is not damaged, abnormal, or has a growth on it. 

We are definitely entering into a whole new (scary) world, but we really like Evelyn's doctor.  I am incredibly thankful for that.  Once we receive insurance approval, she will start the growth hormone therapy which consists of an injection daily until she goes through puberty (for real).  We are NOT looking forward to that becoming a part of our routine.  She will also see Dr. Paez every 3 months to track her growth.  Dr. Paez will plot her growth to ensure that she is growing at the correct rate.  Growing too slow is an indication that she is not getting enough growth hormone, while growing too fast is an indication that she is getting too much.  The therapy does not have any side effects, so long as you do not overdose on the growth hormone.  Dr. Paez said we should expect to see about 4 inches of growth in her first year (they call that catch up growth), and the therapy will only allow Evelyn to grow to her physiologic potential.  They calculate that based on Dan and I's heights.  If we did no therapy at all, Evelyn would only grow to about 4 feet tall.  With therapy, she should grow to about 5'6".  I am 5'4" and Dan is 6' - but they take 5" off of the male...apparently if Dan was a girl, he would have only been 5'7" - you learn something new every day!  That makes Evelyn's mid-parental height 5'6.5" - which is what they will use to track her growth velocity during therapy.

While scary, we at least feel like we have a better idea of what is going on.  She will have an MRI shortly after we get back from Colorado, then we wait for insurance to approve everything.

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