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sleepyjess(and anyone else)-my experience of seizures

(7 Posts)
dizzy34 Sun 05-Jun-05 21:29:42

Hi there, i am new to posting on this board but saw what a nightmare you have had and wanted to reply. My ds is 2yrs old and had seizures from when he was in the womb. He had ct scan, mri scans, brain ultra sounds when he was 6days old. He was diagnosed with epilepsy at 13days old. No epilepsy medicine has ever worked for Harry and most have agrivated his condition. We are currently using a drug called stiripentol. He has upto 70-100 seizures per day on a bad day, and on a good day up to 30ish. They last about 90 seconds. Watching your son seize for 2hrs must be horrendous. Harry was eventually dx with malignant migrating partial epilpesy of infancy when he was 5mths old. He is only the 13th child in the world to ahve this condition. THere is no one else in England. He is quadriplegic, blind and has micro ceaphly. He can not eat or drink and is fed through a gastrostomy tube via a pump. Harrys seizures are all different, some make him scream, some make him giggle, but mostly he goes very stiff and shakes, turns to one side and his face contorts. Harry sleeps in our room in a cot that we ahve took one side off and it is right next our bed. When he has seizures every 5mins it is too much to keep going into another room. we have the cctv moniters for when we are downstairs and they are fantastic. Anyway, i thought i would get in touch to let you know you are not alone. Seizures are always frightening and i would do anything to take them away from Harry, but we have learnt to live with them, i guess we have to as he has so many or we would have gone mad (or madder than i already am)

whymummy Sun 05-Jun-05 21:45:58

dizzy i don't usually post on the sn boards but i do read them,i'm so sorry about harry,i know a mum from school whose baby has lots of seizures and her brain isn't growing,it's just devastating.
you will get lots of support and make good friends on here.

Davros Sun 05-Jun-05 21:52:45

Hope you don't mind dizzy, I put a link to this thread from the other thread.
All I can say is you sound wonderful and dealng with so much.

Bethron Sun 05-Jun-05 23:07:20

Message withdrawn

Fio2 Mon 06-Jun-05 08:29:44

Hello Denise, thanks for sharing Harry's story. My daughter, who is nearly 6 has microcephaly too

Pages Mon 06-Jun-05 14:07:04

So sorry about your DS Dizzy34. Do they know what the original cause of the seizures was? (Sorry if that's a silly question, i don't know if they ever know what causes them).

dizzy34 Mon 06-Jun-05 14:40:53

Hi, There is no physical cause for Harrys seizures. All his brain scans are 'normal', blood tests are 'normal', muscle biopsys are 'normal'. His eegs are abnormal and show that the seizures originate from several areas of the brain, hence the migrating part of the condition. He is registered blind but all eye tests and scans are normal.

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