Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Hi Kathy, I'm kind of ignorant about Doose right now, too. From what I can gather, it is a syndrome involving some myoclonic epilepsies. Children can varying degrees of severity. It is supposed to be rare, and difficult to treat. Some of the others may be able to help us out on understanding it better. Our " new " center is just new to us. It is Cincinnati Children's Hospital. Their facility is new, but the hospital has been around a long time. They've been consistently ranked in the nation's top 10 children's hospitals (US News & World Report). I know it all boils down to the quality of care your child actually gets, but so far we are so relieved that someone seems to be taking us and our concerns seriously. Best wishes, GLenna > I'm sorry to be ignorant, but what is doose? And where is the new > center?? > Kathy > On Tue, 27 Jan 2004 23:49:44 -0000 jgmsteele@y... writes: > > Hi all, > > Just have a minute, but we had our first appointment at the new > > > > epilepsy center today...lots to take in. Overall, we were very > > impressed with the staff and facilities. Our doctor seemed to know > > > > her stuff and shared it freely with us. She brought up many things > > > > I've learned from this group (before I had a chance to ask), and it > > > > seems they are on the cutting edge of the newest treatments. That's > > > > what we are hoping, anyway. > > Macie is going in tomorrow morning for a 24 hour Video EEg - it > > > > will be her first. They are also going to do a full blood workup > > and check for metabolic disturbances. She said it is quite possible > > > > that the diet has put things out of whack. We will also meet with > > the dietitians tomorrow. At least we feel like we are taking steps > > > > towards doing something. > > The doctor feels she has many signs of Doose, but says we'll > > know more after reassessing everything. I know some of you are > > dealing with Doose already. I don't know much about it and can't > > seem to find it. I know there is a group for that, too. Anything > > any of you have to share would be appreciated! > > > > Thanks, > > > > Glenna > > > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a > > last resort! " > > > > List is for parent to parent support only. > > It is important to get medical advice from a > > professional keto team! > > Subscribe: ketogenic-subscribe > > Unsubscribe: ketogenic- unsubscribe > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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