FYI I am a mother of 4 and my eldest boy Alun developed epilepsy 4 years ago this year in October.It was just a sudden onset no reason, over the 4 years we have being through numerous meds have lost count on how many, we have tried the Ketogenic diet but unfortunately it made Aluns seizures a lot worse so had to stop it for his safety. He has Drop attacks continuously,Absent seizures every 2-3min, Tonic Clonic 1 every 3 weeks l;asting 4-5min, Jerks, and has started having night seizures aswell.Alun has between 50-200 seizures a day so his body is very tired and exhausted. We have being diagnosed with Dooses Syndrome but possible Lennox Gastaut Syndrome. Alun is at the end of his med list as no meds work yeswe go through a Honeymoon period but then they just dont take effect anymore. Iwish the medicinal Cannabis was legal I hate seeing my son go through Hell(sorry for language) and not get anywhere. The up side with Alun is we go through a phase where we are a typical 9 year old walk,talk,backchat,eat etc lasting 2-3 months if lucky but then we have the downside of it where he is our 9 year old baby as he gotta be feed, changed, everything, so it makes it hard. just wish had more of the positive side of things. I am at the end of my rope and dont know where to go from here his Neurologist is useless atm and so is his Pead. My son has to wear a helmet at all times as he has had a lot of dongs to his head due to fits.
Posted on: Thu, 07 Aug 2014 18:34:39 +0000
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