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Epilepsy Research UK
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Good Morning all

Just thought I would give a quick update on Bethany (14). Touch wood she hasn’t had a seizure for 2 weeks. We have applied to a charity for an anti suffocation pillow and I filled in the dla for children form , we are also waiting to hear about a bed alarm from another charity. I have read the book from young epilepsy inside out twice and feel a bit more knowledgeable . Hope everyone else is doing ok, Beth has good days and bad days with the keppra, fingers crossed we have more good days x

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Aw Gillyhan that's good and long may it last

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Thanks how’s Callum doing now? Did u apply for dla?

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Hi he's doing ok they increased his epilim to 400mg twice a day and he's not had a partial seizure since 13th November and thankfully not had anymore full ones.

Yes his forms came through yesterday think it will take sometime to fill in tho it's like a book.

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That’s good, yes the form took me 2 days to fill in x

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His actual wasn't to bad 2 hours and 40 pages later

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Hello Gilly,

And I am so very happy to read of your good news, and long may it continue.

Reference to the mattress and the bed that you mention, and just wondering if Epilepsy Action helpline would be able to assist you.

Helpline: ‭0808 800 5050‬

Here’s wishing you well.

Richard

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Will check it out thank you

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Hiya

Glad to hear things looking up. I didn't know you could an anti suffocation pillow 🙈

We got FLA for a daughter when she was diagnosed but don't get it anymore, we're going to get her to apply again as she's 16 now.

Hope the good days get more often xx

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Thank you . The pillows are £54.99 on eBay so thankful the charity is providing one. I looked into dla a lot on google and it gives advice how to make sure you word information as you are proving that your child needs more care than a ‘normal’ child of their age. Fingers crossed x

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