Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Thanks for your message and the advice. Sorry to hear that you are also going through this. I have not looked into VNS for - the diet was working brilliantly for him up until this catabolic thing kicked in, so I am going all out to try and get him sorted through the diet again - just going to take a bit more tweaking I feel. Instead of the diazepam I have tried clobazam but that does nothing at all - so those have been binned. I am not familiar with the other medication you mention in your other message - or maybe I am and I just know it by a different name!!! I try to avoid as many medications as I can with - went through a lot of them pre-diet days - not good. Normally the valium works well for emergency use - but that particular night it took 2 lots to stop the seizures instead of 1. Thankfully only needed 1 the following night and hasn't had any since then (I've now probably tempted fate and will have to give it to him tonight now - I am getting really nervous of posting ANYTHING remotely positive!) Can you tell me some more about this medication - I am presuming it is another emergency med? Is it the valium that is placed under the tongue instead of rectally? Take Care. Emma. Mum to . > Emma, Mathew sounds like Stella with his seizure patterns, this last weekend > I was away at an Epilepsy camp w/ my older daughter and of course Stella had > a bad weekend. > With Stella the fasting helps along w/ the diazepam, I hate giving it to her > though, we'll wait out 10-20 seizures before giving it to her, she clusters > too, and has both the atonic and the TC's. I'll occasionally give her a tsp > of OJ and see if that brings her around, her ketones have never measured > that high thru the blood tests at the labs but her urine/breath always says > high, the OJ actually helps a little, I think some kids benefit from > slightly lower ketones. The not wanting to eat also rings a bell, is he too > acidotic? I've been playing around w/ giving stella different carbs that > are more alkaline to see if it makes a difference, (nothing too concrete yet > though). Also, watch out for sodium levels, stella's were really high and > i'm not sure why because we don't use salt, maybe the cheese? but I know > that can cause seizures. Remember giving the benzo's lowers his gaba > threshold so it's a catch 22 on that one. > We are meeting w/ a neuro surgeon today to talk about VNS, do you have that > over in the UK? That is our last option w/ stella, so i'm crossing all > toes/fingers we have some success w/ it. She is due to start school > (kindergarden) next wednesday and i'm a little scared of that. > I hope things pick up for you, > amanda > -- > http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm? user_id=143 > > Quote Link to comment Share on other sites More sharing options...
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