Wow, what a difference. This guy was great. And we had high expectations! He gave us so much information that I dont think I can clearly explain it here but at least he gave us information! At our last visit with Dr. Victim, she basically just shrugged her shoulders as if to say: "she has Rett syndrome, sorry, deal with it" and gave us no direction!
Today, we feel armed with info and with somewhat of a plan. Here is what we are going to do:
2. Xray of spine to get a baseline if she should develop any spinal curvature
3. overnight video eeg (Fun!)
4. Consider giving Avery a stimulant to calm her down-she NEVER stops moving, her attention span is non-existent and she is impulsive. Because you can see effects of stimulants in about a week we may think about trying it. I am thinking along the lines of learning and maybe it will help her to focus and learn more at school?
5. Clonidine? for sleeping. The Dr. did say he thought what we described sounded like a typical sleep distrubance based on sleep cycles. And, it doesnt really bother me...plus Clonidine sounds so scary for some reason? This is last on our list.
6. Folate-Apparently there have been clinically diagnosed girls that really had a folate deficiency and when given this supplement, they improved. NOT in girls with a MECP2 mutation or deletion. But, he said since Avery's is yet to be reported it couldnt hurt. (When I got home though I found that the research has shown it doesnt really work and may increase seizures so I have an email into Dr. New and Improved. will update on that when I hear back!)
He recommended that we definitely go to the Rett syndrome conference! Great news! Now to figure out how to pay for it all! yikes. But its in Colorado and would be super informative. So we will figure it out. He also recommended going to the Blue Bird Rett clinic in Texas! Maybe....
Anyway-he was great.
Ill keep you posted on what happens next!