Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 I just recently found this down's group. There are 475 members. They don't seem to be as active as this group but if your friend posted a question my guess is they'd have some ideas or advice. I have a son with DS but doesn't have seizures so I have no knowledge at all to give. downsyndrome/ Laurie > A doctor friend e-mailed me today: > > " I am now > researching seizure specialists for a St. Louis friend of > mine who has a daughter with Down's syndrome and intractable > infantile > spasms. Before the spasms started she was smiling, crawling, > starting > to feed herself. Now she has lost all that and is not progressing > at > all. Nothing has worked so far to control these seizures and free > her > brain so she can start learning and developing again. She has sort > of > been in a state of developmental arrest since these started about a > year ago. " > > I know a lot has been posted on this board about seizures but can't > remember what has helped for some. Also, is there a good Down's > board like this one? > > Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Thanks Laurie. I'll certainly pass that on. > I just recently found this down's group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Have they tried using b6 injections/oral-- there's lots of info on the net about b6 and seizures...here is one that is specific to using it in down's kids: http://jpn.webiks.net/archives/sayi2no1/Infantile.pdf W > A doctor friend e-mailed me today: > > " I am now > researching seizure specialists for a St. Louis friend of > mine who has a daughter with Down's syndrome and intractable > infantile > spasms. Before the spasms started she was smiling, crawling, > starting > to feed herself. Now she has lost all that and is not progressing > at > all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Great info, thanks for passing along. Since these are friends of my friend, I'm not that familiar with what they've tried. I know they'll be interested in everything I send them. Thanks again. Oh, I'm not sure what your interest is or why you know about B6 and seizures, but in case you missed it, some time ago andrew posted a passage from Williss' group about magnesium and seizures. Let me know if you'd like to see it and can't find it in this group's archives. It was very interesting. > Have they tried using b6 injections/oral-- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2004 Report Share Posted February 7, 2004 Thanks! > Enzymes, probiotics. > > 's page and andrew's page. > > Sign up and introduce themself :-) > > Quote Link to comment Share on other sites More sharing options...
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