Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi everyone, Hope you had a great Christmas. We came to land to stay with friends this Christmas and I took the opportunity to take to see dr Capone, from the Kennedy Krieger Institute in Baltimore. It was worth every minute of the trip - nothing like people with a lot of experience and who knows exactly what they are talking about. He confirmed my guess that should have a sleep study done because she might be having apnea - her tonsils are very large and she sleeps sitting down (all folded down on her legs - incredible flexibility !). He said a lot of people with DS do that because it opens their air ways and they can breathe better (the student that was attending the appointment was most impressed). I also, of course, asked about nutrivene and ginkgo. He said it was quite safe to start with those, only that we should monitor her vitamins a and d levels every 6 months because of high levels in the nutrivene. As for the ginkgo, he only said to start it low. I might start her on DHA as well. I commented that I belonged to this list, that a lots of people were using ginkgo and that I thought it was a pity that the DS organizations reacted so badly about the Changing Minds protocol, that there could have been a better and more constructive way to handle the issue. He agreed with me and said that overreacting is what they usually do, and argumented that the only way to revert that doing the tests. Nothing new there, but it showed that he is a sensible guy. He laso said they are doing tests with two different medicines for Alzheimers at the clinic (ant remember the names), but all with older children (9 and older). Let me get to the point - I want to start on Nutrivene and ginkgo, possibly DHA, too. I wanted to know - do you use the complete program, or just the daily dosage ? About gingko there are a lot of previous messages, I will just go over those. Thank you all for the info and suppor this whole year ! I love this list !! Best wishes for 2009!! Pat and (4) Quote Link to comment Share on other sites More sharing options...
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