Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Hi , Thanks for responding. You have really been through A LOT. We have also had numerous hospital stays ( I long ago lost count... And has been in status several times (non-conv) but believe it or not we still do not have a definate diagnosis. Until these myo's started in Jan., we had never even gotten a seizure on an EEG (and he was having a least 2 a month). At one point we had even stayed in the hospital for a solid week to try to get a seizure on the EEG and nothing - then he goes home and BAM! has a status sz the next morning. But just from some of the reading/research I have been doing - definately has a few of the MAE characteristics but they've never been able to confirm that from the EEG readings. I've been pushing trying to wean Phen. or at least try decreasing and see if we see any difference - it's been a hard sell - but I'll keep going... I hope continues doing so well - - In ketogenic , " & Hill " wrote: > Hi > Yes, 's diagnosis is Doose/MAE. > No, our neuro didn't tell us about phenytoin potentially aggravating MAE > seizures, was his first diagnosed case, and a lot of the info he > gleaned on the syndrome back then (in 2000) actually came for me sending it > on to him. > Phenytoin was trialled as an AED when was an inpatient soon after > his seizures first started, he got worse and worse and worse, (yes, > including increased myos) everyone said his condition was just deteriorating > on it's own, blah blah, as they do....until an EEG showed he was actually in > NCS with severely ataxic movements not all related to seizure activity. A > question mark about an adverse medication effect was finally raised, and in > the end we simply refused his dose one morning when no one was doing > anything about it. > He improved, and that was the end of that med for a while. Soon after that > I came across a paper on MAE (written by Olivier Dulac) where it does > actually spell out that phenytoin is a MAE no no, as are tegretol, phenobarb > and vigabatrin. > 20/20 hindsight again, as tegretol and phenobarb had previously been > trialled and had worsened him as well. > Despite having the journal paper in writing by then, the phenytoin was > tried as an infusion some months later to try and break him out of minor > motor status, where of course he worsened again, and then even again in Nov > last yr in PICU when he was in tonic status - they said they had to use it, > as it was part of the hospital status 'protocol'. Grrr. Never again.... > What diagnosis have you actually been given? > > > > > ----- Original Message ----- > From: " " > > > > > > Hi , > > I hope you don't mind me butting in here. But I was very interested > > in what you had said about Phenytoin aggravating 's syndrome > > (which I assume is Doose/MAE from what you said in your post???). > > My son does not have a diagnosis of this but he has a few of the > > characteristics and in my heart of hearts I trully believe the > > phenytoin he is still on with the diet is what is causing him to > > continue to have seizures. Before the diet he had only had TC's but > > one year into the diet (still on phenytoin) he started to have > > myoclonics. Did your neuro tell you this about the phenytoin or had > > you read it somewhere? > > > > You are really a wealth of information . > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
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