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Medical Forum / Diseases and Disorders / Epilepsy / August 20044 year old with Doose's Syndrome
Hi, My 4 year old first had seizures jan 2003. His eyes would roll back and he would lie very still and be unconcious.His E.E.G. showed some abnormalities and he was put on Tegretol. He was fine for a couple of months then he started having 'drop attacks ' several in a day . A second E.E.G. later and he was diagnosed with having "Doose's Syndrome" . He was then put on a different medication "Valproic Acid". Again he had been fine for acouple of months, then yesterday night he hadhis rolling eyes type of seizures again. Everytime he fell asleap he would have a seizure this happened 4 times and then he fell asleep. Would appreciate any info on 'Doose's Syndrome' or anyone with similar symptons. Thanks >Hi, >My 4 year old first had seizures jan 2003. His eyes would roll back and he [quoted text clipped - 3 lines] >symptons. >Thanks There seems to be a MSN group dediacted to this syndrome. It is nice to talk with other parents who ahve been there. I have a child with infantile spasms which sounds really similar. Have you thought about the keotgenic diet? I thought I had heard of all the childhood epilepsies, this is interesting, I hope you get some answers. Jan Tovah 13 Eliana 11 Asher 8 DAvid 5 Shoshana 3 Thanks Jan, I have been looking into the Ketogenic Diet ,not sure if it helps with this type of epilepsy.Will ask the neuro. will also check out the MSN group. Harry > >Hi, > >My 4 year old first had seizures jan 2003. His eyes would roll back and he [quoted text clipped - 16 lines] > DAvid 5 > Shoshana 3 My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's this morning. I've been reading up on it for him, and it's very rare. He was told that developmental problems could occur, also, but they caught it early, so that's a good thing. My question is about the MSN group...how do we access this? If you have information on how to go to it, I'd appreciate it. I did a search and found this post, signed up just to ask. I know he'll be very interested. Thanks in advance, and hang in there... A.D. > My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's > this morning. I've been reading up on it for him, and it's very rare. He [quoted text clipped - 5 lines] > there... > A.D. Bookmark or save http://google.com . Go to that site and under the search field enter Doose's Syndrome. It will pull up about 12 posts around the net. (Ignore no. 5- that was my reply here on this thread earlier.. ) At first one, of topics brought up, it said Doose's Syndrome is 'A rare familial type of primary generalized myoclonic <can't read my writing- astatic?> epilepsy, with onset between year 1 and 5 of life' . There is more detail under the topics listed. There are only about 7 topics on the subject (some Googles will bring up 300! ), so shouldn't take too long to read through. If you have some other topics or names related to that, other Google searches might bring out other detail. You could also try the U.S. Ep. Foundation of America site and see if there's anything in there. http://efa.org . G./ > > My friend's daughter (turns 4 in September) JUST was diagnosed with > Doose's [quoted text clipped - 20 lines] > You could also try the U.S. Ep. Foundation of America site and see if > there's anything in there. http://efa.org . G./ For better search results, use Doose syndrome instead of Doose's. There have been changes in English rules so that syndromes that are named after people no longer have the apostrophe 's.' For example: Down's syndrome is now Down syndrome. Barb > > > My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's > > > this morning. I've been reading up on it for him, and it's very rare. He > > > was told that developmental problems could occur, also, but they caught it [quoted text clipped - 25 lines] > > Barb THAT should keep them busy reading for a while !! That version of Title (Barb's) on Google pulled up ~35 pages of 20? articles per page, although after about page 7 20% of each screen's articles are Non-English, but there are a bunch of articles (and one? at least support group), specifically on that topic. G./ > My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's > this morning. I've been reading up on it for him, and it's very rare. He [quoted text clipped - 6 lines] > > A.D. Hello, What do you mean with MSN group? I know MSN, but what group are we talking about here? Maybe I missed something? Cheers,  SignatureTake care. Marco > My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's > this morning. I've been reading up on it for him, and it's very rare. He [quoted text clipped - 5 lines] > there... > A.D. If they want to Subscribe to that newsgroup that I mentioned that's under the link that Barb Posted earlier, if you're using Windows (since you originally wanted a Newsgroup for him?), click on Tools? then Subscribe newsgroups, type in the Newsgroup Name (after you've clicked down those links Barb put up and found the Newsgroup name I mentioned) and then when you subscribe that group should bring up recent posts over previous 2-3? days, and they will then be added to their newsgroups list (like you are with this group?) . If you're subscribing under Google, I don't know how to do that, and someone else here or at your Google helpdesk should be able to tell you how to link through that. Personally I prefer the Windows version? , since I have this newsgroup set to sort incoming messages by Subject title, so that I could skip over unrelated messages if I chose to. Since you're interested in above Subject, you'd only then have to read messages that have that Title or Contained Doose in it to find topics of interest. (I forgot to look up what you're using to post here, but thought it was google? If it's not and you list that here, someone might be able to give you more Geek Oriented link to that group I described earlier.) G./ "gaross" <> wrote in message ... > "asdemeter" <> wrote in message > > My friend's daughter (turns 4 in September) JUST was diagnosed with [quoted text clipped - 7 lines] > > there... > > A.D. **** They're using www.talkaboutsupport.com under Supernews <-- if there's a Different way to subscribe to newsgroups (like this one) or the group described on this thread before --- Anyone? G. // > If they want to Subscribe to that newsgroup that I mentioned that's under > the link that Barb Posted earlier, if you're using Windows (since you [quoted text clipped - 14 lines] > google? If it's not and you list that here, someone might be able to give > you more Geek Oriented link to that group I described earlier.) G./ Doose syndrome is more commonly known as MAE (Myoclonic Astatic Epilepsy), I have an article by Hermann Doose on this syndrome. If you or others wish I can post. Carl ;-) > My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's > this morning. I've been reading up on it for him, and it's very rare. He [quoted text clipped - 6 lines] > > A.D. Doose Syndrome is more commonly referred to as MAE (Myoclonic Astatic Epilepsy). I have an article describing this and some of the original reseaerch by Hermann Doose. If you or others wish I can post it. Carl ;-) > My friend's daughter (turns 4 in September) JUST was diagnosed with Doose's > this morning. I've been reading up on it for him, and it's very rare. He [quoted text clipped - 6 lines] > > A.D.
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