Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 , Thanks for the info....I was kind of afraid of using the Diastat in the first place...because I've heard of others having problems with it. But then I've heard it help alot of kids too. My daughter wasn't on any other meds. I was afraid that they'd give too much valium on top of the Diastat (instead of waiting for all the meds to take effect)....and I think that might of been what happened and why she had a hard time coming out of the sedation from the drugs (14 hours), and a hard time breathing. She had 2 doses of valium and then phenobarbitol...all within a hour...on top of the Diastat. I think the next time, I won't use it...because I think she was slightly over sedated. My youngest has had these prolonged seizures too...but she's always bounced back within 3-5 hours, but sleeps alot after that...but wasn't given quite the meds. I sure wish I remembered the dosages they gave her. I guess I could get her records from the hospital. So much happens in such a short tim! e, that you don't remember it all. I think I had 15 people in my house, between firemen, local EMS, police, and the Star Flight (helicopter rescue people) crue. And each group was asking what happened, questions about her history, and of course...they all wanted insurance info. I'm glad my youngest seizures are controlled. I don't know how you survive the uncontrolled seizures. I'd be a wreck everytime she had one. My heart and prayers go out to you and your daughter. Savage Mom to and Chelsea > > Message: 9 > Date: Fri, 28 Jul 2000 17:33:44 +1000 > > Subject: Valium and clonazepam warning > > Re: Reminder - Kennedy's B-Day > > HAPPY BIRTHDAY KENNEDY!!HOPE YOY HAVE A GREAT DAY.....GOD BLESS > The Buckmans > Re: BPP info from Pubmed > > In article: crsmoogie@... writes: > > Jon & Sally - does this mean that it still could be inherited ??? ( even > > though Crystal doesn't have those deletions ??? ) My hubby & I gave blood > > samples to Dr. Dobyns. Should I ask if anything showed in our blood. Would it > > ??? This whole thing confuses me. It's pathetic, since you Jon, did such a > > wonderful job of explaining it. I'm just getting dense as I get older < grin > > Chris > > The research article was specifically about familial BPP, in other words the > condition shows a definite inheritance pattern in the families concerned. Of those > families studied most showed X-linked inheritance (which I guess, simplistically, > means female carriers and male sufferers) but two showed dominant or > recessive inheritance. It doesn't mention other mechanisms because it is > specifically about inherited BPP. BPP can also be 'aquired' (the word they use > on the Geneclinics site*) which I guess means that it is a new mutation (or fault) in > a gene somewhere or perhaps some totally non genetic reason. > > There is no point testing parental blood if nothing shows in the childs blood tests. > > The problem with some genetic testing is that the tests:- > > a) may not necessarily target exactly the right area of the chromosomes, and > thay are unlikely to target all the possible places on chromosome where PMG > could be implicated > > It comes back to the old problem - they still don't have enough information. Give > 'em another 10 years and it will all be understood. In the meantime the best thing > anybody can do in these situations is to let the researchers have as much > information as possible. That means blood samples, clinical data, MRI's and > family history information. With all that and with funding and the right people we > will all get answers one day. > > Heres hoping :-) > > Jon (still waiting for an answer even though they've done lots of tests and found > nothing.............so far) > > > * http://www.geneclinics.org/profiles/lis-overview/ > > -- > Sally, Jon, (Age almost 3, ILS Grade 4a ) and , Cambridge, UK. > Lissencephaly Launch pad: http://www.foliot.demon.co.uk/lissinfo.html > ICQ: 18084172 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > .. > > > > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > --------------------------------------------------- Get free personalized email at http://www.iname.com Quote Link to comment Share on other sites More sharing options...
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