Good News

So we met with Dr. Muhonen Friday. Then Sat. Nate and I sent him an e-mail telling him we wanted to see an endocrinologist and try Growth Hormone with Emma to treat her condition. There are some cases where it has been known to shrink the Chiari and Syrinx. There are also cases where it has had the opposite effect, and made things worse. We weren't sure how he would respond since he is the expert, and we are just worried parents : ), yet we were asking him if he would proceed a certain way. We had mentioned it in the appointment and he sounded open to it. We still kind of expected him to E-mail us back that we were crazy. Then just a few hours after, on a Sat. we got a response.

Yes on all your questions. I sent disc out yesterday.
For endocrine see Mark Daniels at Choc. No one compares for sure. I can help you get in. I need to check her every couple of months to make sure her nerves are still working.
Your plan is reasonable to try. Mm

Sent from my Verizon Wireless BlackBerry

I'm not going to lie we were really excited. Not only does he think it's reasonable to try, but he will help us get an apt. with a good Endo. We understand this is a long shot. But we are excited to find an amazing doctor, one of the best, who think our idea is good and worth trying. You may be wondering what this means, and what our plan is! So here goes. Start her on GH, then at 3-6 months get another MRI. If the syrinx is the same or shrunk then we will continue for another 3-6 months. If the syrinx is larger then we will stop treatment and proceed with surgery. As long as this works, she may be able to avoid surgery all together. I don't know. This will not fix the Basilar Invagination. It may create enough room where it is less of a concern, and we will be able to monitor her over the years. Who knows but we will deal with that when the time comes. For now we are happy to have found a doctor who is excited to work with us, that we trust.

Also good news for the week Emma has qualified for California Children's Service. It is kind of like an insurance but just for this condition.