Treatment Plan

We met with Dr Superneau this morning, and received a lot of information....most of which I can probably not explain, understand, or even remember...lots of biochemistry. To further understand what mitochondrial disorders are, visit Dr Shoffner's site: http://www.medicalneurogenetics.com/ He has a portal for patients that has some helpful info and some great links. United Mitochondrial Disease Foundation (http://www.umdf.org/) has great information. I've also been in contact with an extrordinary mother of a child with mito disorder...she has a great website for him at http://www.judesmitojourney.com/ Hopefully, these resources will help you and me to understand the disorder better. For specifics about Lydia's disorder, here is a picture of the conclusions page of her diagnosis report:

We didn't get much info from Dr Superneau today about expectations for Lydia's future....basically, the disorder is rare and her specific affected areas (Complex I and III) are even more rare so that there is no baseline or "typical" mito kid. We can't predict her future because every mito patient is different. We basically just have to wait and see how she develops and if she will become stagnant at any certain age or regress at any certain age or continue to progress....there is no way of knowing right now. As for now, we will continue to pray, attend therapy, see all of her current doctors plus a cardiologist to be sure that her heart is not affected, and to begin supplemental vitamins/medicines. She will begin taking CoQ10 and LCarnitine as soon as we can get them ordered. After being on these for 2-3 months, she will have a blood test to determine how it is being absorbed by her body,and then we will probably add creatine to her medicine cocktail.

My mind is a bit of a whirlwind right now...having trouble gathering and completing thoughts. I'll try to add more info as it comes to me. As always, thank you for continued prayers.