New Year, New Questions

A "New Year" to me used to mean promises and hope and new beginning. Did I say used to? I got over that a while ago. Realizing quickly that really the new year was just a change in calendar and what happened the day before was still there the next day even though it was a new year.

Toward the end of last year we finally sent out Daniel's MRI to Dr. Dobyns in Chicago. Dr. Dobyns is a professor and also a researcher on Lissencephaly. He was the guy that we were told over a year ago when we first got the diagnosis that we should contact and ever since his name has come up as the one to contact for further diagnosis. The problem is that to get any sort of recognition from him you have to "donate" $150 towards his research otherwise you will hear back from him typically in about 2+ years. Well, considering the fact that we are in need of an economic stimulus package, we didn't have $150.00 lying around that wasn't designated to something else say food for the kids. Luckily, my parents (Grandma and Papa) generously gave us the money and we sent out the MRI. We heard back from the great doctor in record time even with the holidays and new year and everything, but what we heard makes me want to throw up, makes me want to yell and scream and puts me right back to where I was at the beginning of this blog.

Before I post what he told us I want to explain first why I sent Daniel's MRI to him in the first place. I had no belief that this doctor would end all of Daniel's issues or that this nightmare would be over after the mailbox door was shut. I thought in no way that there would be magic pixie dust sprinkled on the MRI CD. My only wish for sending the MRI along was really to get some further answers. I wanted this doctor to (as he does for a living) further classify Daniel's Lissencephaly so that it could be noted and registered and tucked away somewhere so that someday in the future 5, 10, 15 years from now they will call and say we found the cure, the pill, the antidote..."we are very glad we found you thanks to this documentation, and knowing your precise diagnosis that matches what our treatment cures." Too much to ask, I don't think so? Now, you can see why I go back to the beginning with more questions then answers:

"Best to collect and send some medical summaries, including detailed head growth charts. His brain scan was done at 9 months, an age when it can be difficult to see some details of brain structure based on rapidly changing maturation.

The pattern of convolutions is either normal or perhaps slightly immature for age, but I do not see any type of lissencephaly. A new scan now would probably sort this out. He does have a small cerebellum, particularly the middle portion which is designated “cerebellar vermis hypoplasia” (CVH). My lab works on this group of conditions as well. CVH is associated with a large number of different developmental disorders, some with very good development and others not.

What have you been told, and who are his docs? And where in VA? This is more complicated than just looking at his scan. Where has his head size been tracking?"

WBDobyns