Re: Kris- Reintroducing ourselves...(Long)

[Guest guest]

I just wanted to say welcome to the group and to let you know we see Dr. Whiteman and Dr. Renaud as well. We just got back home after a week up there for two of our children. Asenath (4) and Zipporrah (6 months) see them on a regular basis for their issues. Dr. Whiteman definitely is the reason our Asenath is still alive! Hope this group is a help to you. These are a great group of women and a few men as well. Darla Reintroducing ourselves..(Long) I first posted to this wonderful group last fall. I read this board everyday--I have learned so much and have the greatest respect for each and everyone of you. My twins are now 2 1/2 years old. One became ill at 20 months of age, the other at 22 months of age. Dr. Whiteman saved their lives. We live in Minneapolis--we spent 4 months of precious time at several of the hospitals here with no answers-- we drove to Rochester out of desperation Dr. Whiteman immediately said "your kids have mito". One of the boys has a confirmed partial complex 1 deficit (he has been much more affected), the other does not. Dr. Whiteman believes they have a thiamine reponsive form of PDH (incredible response to thiamine) - Cleveland Clinic cannot test for the thiamine responsive form of PDH with the fibroblast biopsy, so some day we will have to consider a muscle biopsy for definitive diagnosis. My boys have absolutely no tolerance for any stress---we literally do not leave the house anymore (except to go to Mayo). As much as my kids have suffered Dr. Whiteman continues to say that they are doing well for having mito and that no other geneticist would believe they have Mito (that is why the idiot Docs in this town did not consider it). We will be at Mayo May 6 and 7 for MRI's if anyone would like to meet. Dr. Ranaud wants to rule out "white matter" damage from a crisis in January. One more thing-- my children get absolutely "crazy/insanewhen they are in crisis--like they are on drugs--anybody else experience this?Wishing everyone stability and peace,KrisCole and Zack