Discussion Boards I care for...
1 year old with severe epilepsy - first timer
- By zacsmum
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Wed 23 Aug 2006 21:37
My son suffers with a very rare epilepsy and has 60 - 80 seizures on a good day, he has global development delay and is on par with a 9 - 10 month old, although he will be 2 soon. He has an older brother who has just finished his reception year at school. I am struggling to cope with the impact it has had on my older boy. I have been a 24/7 carer for a year now, and due to zac's seizures, i spend all day within inches of him. I would really like to meet others that are in simular situations. Any advice on the mazes we have to find our way through for help and support would be much appreciated. I am in desperate need of some frineds but have little opportunity to get out there and meet anyone.
Look forward to hearing from you
Emma
Replies
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By bun107
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Re: 1 year old with severe epilepsy - first timer
Sun 27 Aug 2006 22:35hi Emma - I'm June mum to Alex who is almost 3. He takes generalized tonic clonic seizures and at his worst was seizing for over 2 hours! Luckily it's not all the time, we are on AEDs but like yourself feel completely baffled by a lot of it - happy to chat if you like - even though are circs are different it would be nice to known someone is speaking the same kind of things.....
June
- By zacsmum
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Re: 1 year old with severe epilepsy - first timer
Sat 2 Sep 2006 22:04Hi June - Thanks for replying, Sorry its taken me so long to reply, we have had a bad week, Zac is on 3 AED's now and it is making him nauseous. Twice this week we have lost the drugs and had a night of worry but to no advers effects. The last 3 days have been his best ever 14 - 21 seizures each day, fingers crossed its not temporary. We have just been told that they have his results for his 2nd MRI, but unlike the first that was clear they are unable to tell me over the phone, so i am left thinking the worst until the appointment arrives. Are we allowed to post our email addresses on here, i am new to this and not sure if we chat via the board or personally via email? I have some understanding on tonic clonic seizures, i read up on all seizure types and syndromes when they seemed reluctant to give me a diagnosis on Zac, it's sad really but i was left to come to my own conclusions. How long has Alex had epilepsy? Are the consultants helpful where you are? Do you get support from an epilepsy nurse? Speak to you soon, Emma