Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Hi, I'm delighted to have found this group! Didn't know there was a UK one. My son has epilepsy (Landau Kleffner) which started during chemo for leukaemia when he was 3. Well, that's when he started losing speech, becoming aggressive and not sleeping. It took till he was 5 to get a diagnosis for the speech loss, by which time he only had a few words left, then the epilepsy drugs wiped out the last few and turned him into a drooling zombie. After a few ghastly years, the ketogenic diet and the specific carbohydrate diet, we now have him drug free and at 10 he's much better. After 4 years in nappies he's now using the toilet independently again which is wonderful. However, we wonder if any communication will ever return! At the moment he is not keen to sign, although making slow progress with PECs. I'm convinced there is a problem with his liver, as I've noticed the last few years whenever he vomits there is absolutely no bile. Docs are unconcerned but I feel this must be serious! Especially after years of chemo and antiepileptic drugs. Currently trying taurine cautiously - he seems v. sensitive to any supplements and had a huge increase in seizures when we tried carnitine at a miniscule dose. Lecithin and milk thistle have also caused seizure increase... sorry, this is turning into a very long message - any advice on liver support/seizures would be appreciated! And then I want to look into valtrex, as he did have chicken pox, and then shingles while recovering from chemo. It's hard to know where to start! Edinburgh Quote Link to comment Share on other sites More sharing options...
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