Guest guest Posted July 25, 2004 Report Share Posted July 25, 2004 - Thanks for the info regarding the interaction of depakote and the diet. does not have an " official " diagnosis of MAE--we'll be persuing this with her ped neuro on the next visit--it sure seems like a possibility to me, thus joining the Doose group. I'll try searching the archives again--is there a way to search all the posts easily? Thanks for your help. ne > Hi ne, > I was just about to ask if had a MAE diagnosis after reading your > message and seeing her seizure types, when I recognised your email address > and realised you joined the Doose group a few days ago > Starting the diet when on high dose depakote can def cause problems, > toxicity being one, and also there is a theory that depakote and the diet > work along similar channels, to do with fatty acid mechanisms, meaning that > in some kiddies they can 'compete' with each other, and there are quite few > who don't therefore attain full seizure control until the depakote is > weaned. > However - there are just as many who have been fine on the combination, it > is basically not a one size fits all thing, but something to keep in mind if > you have to go down the fnetuning road to get the seizures under control. > So basically, be on the alert mainly for toxicity, ie - increased > seizures, esp as med doses peak, sleepiness, vomiting, unsteadiness etc. And > perhaps forewarn your keto team that you have read of other children whose > med levels go too high when their metabolism switches into the state of > ketosis. > Problem achieving satisfactory ketone levels may be another symptom that > some depakote needs weaning. > If you do an archive search at the files section here, you will probably > come across quite a few older posts by using the search word depakote. Let > me know if you have any problems searching and I will see if I can help you > dig them out. > > Hill ('s Mum in NZ) > PS - very glad the tegretol was ditched, as if she does have MAE, you will > know by now that it is a big no no for this syndronme - her paradoxical > seizure response to this med is one that many of us have witnessed in our > kiddies too > > > > ----- Original Message ----- > From: " ne & Clague " > > > Hi Everyone, > > > > We're so glad to discover this group! We are starting our 4 year old > daughter, , on the ketogenic diet on Monday, July 19th, and would > appreciate any information to help us along the way. > > > > Our beautiful and healthy daughter, , had her first seizures in > Dec. 2003 with 2 T/Cs within 1 week of each other. She was started on > Tegretal but switched to Depakote in March 2004 due to onset of > myoclonic;atonic seizures (up to a dozen/day). 24 hour VEEG confirmed dx of > mixed generalized seizure disorder (intractable)--capturing multiple > clinical seizures and 40-50 subclinical seizures daily over a 3 day period. > Since that time she has experienced more T/Cs and most recently eyelid > myoclonic seizures--with the time between seizure activity diminishing in a > rather rapid pattern (longest seizure free period 20 days; now only 6 days). > And I suspect daily subclinical seizures (due to changes in her behavior and > bluish coloration of her eyelids and a recent EEG confirmed continuing spike > wave patterns). While you'd never notice with a casual glance, has > also been diagnosed with mild hypotonia, oral motor dyspraxia, a language > disorder, and sensory integration dysfunction and is currently in weekly OT > and SLT and is showing improvement. > > > > is on Depakote (1125mg/day), Keppra (125mg) and carnitine > supplements. She has moved beyond the therapeutic range with Depakote and > is beginning to experience more side affects--upset stomach, slight tremor > (more like a " jerkiness " ) when tired, and tends to sleep more (not > necessarily a bad thing-ha). > > > > Because she is on such a high dose of Depakote a day, I have been > closely reading any posts regarding the interaction of Depakote and the > diet. Any suggestions with things to watch for while initiating the diet > would be greatly appreciated. > > > > ne Quote Link to comment Share on other sites More sharing options...
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