Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 Hi, Ken Hirsch here, and unfortunately don't have much time now to go into mito. go to www.rivendell-peds.com/hirsch to see what we went through. You've got a long road ahead of you and just keep in mind some important facts. 1) No two people with the same defect will have the same " clinical course " 2) No doc has a crystal ball, so therefore, don't believe anyone when they say that time is limited. No doc is G-D, and therefore there is no prognosis over the long haul 3) This will be the worst roller coaster ride of your life. 4) Electronic support groups are a) Great because of being able to talk to a faceless croud Extremely bad because of not being able to read the body language associated with the comments made and causes periodic flaming (net language for very heated argument, hurt feelings, etc, etc, etc) 5) It's OK to lurk for a while until you get your feet wet 6) When the time comes potentially for a biopsy of the muscle, I'm part of the only go to a center that can analyze the muscle right then and there and don't freeze it to send somewhere else for testing. Again, sorry I have to be so short, but welcome to the list, and by all means, if you haven't already, check out www.umdf.org and www.imdn.org Ken (father of a son with complex I and III deficiencies and a board cert pediatrics, sub-boarded in pediatric hematology/oncology) Quote Link to comment Share on other sites More sharing options...
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