Wow. We just returned from seeing the 4th pediatric endocrinologist in the past year. Since Halle's diagnosis, we have been desperate to find a doctor who will listen. We saw one who told us she was (his words--to us, in front of her) "going to grow a penis," and "going to have a tumor on her pituitary gland, because you won't treat her appropriately." We saw another, who suggested that since the Cortef was causing such extreme hyperactivity, we consider Ritalin. We saw another doctor (the first doctor,) who told us nothing, NOTHING about her diagnosis. Never mentioned the need for Solu-Cortef, never discussed our options...We saw the NIH, who were great, but who weren't able to be her primary care folks. I have been praying so hard for an answer...Halle just cannot tolerate the Cortef at anything above 8-10mg/m2. She becomes insane. She will only sleep 5 hours a night, she eats non-stop, she is hyperactive, she cries repeatedly over nothing, she acts like she is driven. It has been so painful for us to watch. Many of you know exactly what I am talking about...
Anyway. For those who have been in the same boat as we have, I cannot recommend highly enough going to see Dr. Sarafoglou's team at U of Minnesota. I emailed her about Halle's case, and she replied to me, then called me personally to discuss options. We decided to go see her, and I have to say... I was so happy after our visit with her on Friday that I started crying. She listened to every single thing we said, and she believed us. Her bedside manner with Halle was incredible. Best of all, she offered us options. Halle's bone age is further advanced--as I knew it had. She will be 7 on November 18th, and the bone age is 10. Dr. Sarafoglou offered us the option of using aromatase inhibitors to treat her. Dr. Sarafoglou talked to us about an upcoming study wherein she will attempt to measure 17OHP levels in much the same way diabetics measure blood sugar--but with filter papers. It will allow her to better control each child individually--because she believes, as all of us parents do, that CAH really is an individual diagnosis.
(I feel it is absolutely wrong that kids are treated with a blanket steroid treatment, of 10-15mg/m2/day. I just don't see that it's possible for all kids to need the same range of dosing. Clearly some need much more, and some need much less. But I digress.)
I am so, so, so happy today. I feel like we were finally led to the best doctor out there for us. I cannot speak highly enough of the medical care Halle received.
So for those who have or are using aromatase inhibitors, what do you think?
Christine
