Fab new Seizure Diary for Children

[kellyoh]

Hi

I had epilepsy as a child and 20 years ago was not really given much help or support. I am now a mum of 2 young kids.

I started working for the National Centre for Young People with Epilepsy (NCYPE) 2 months ago and had to tell all other mums about the new Seizure Diary the NCYPE has just launched.

This new Seizure Diary has been especially designed for children. It's called Day By Day By Me and is an A5 ring bound book that looks like a real diary. The front cover is by Nick Sharratt (who does the Tracy Beaker book pictures) and looks great. Plus it's full of loads of other pictures and stuff for kids to do.

The NCYPE (www.ncype.org.uk) is making it available FREE to any child that wants one. Epilepsy Specialist nurses can get whole boxes sent to them - so get asking.

I can't recommend enough that you try and get this diary for your child. My friend says that since her daughter has filled hers out she has discoverd that she is having more seizures than she thought and her medication can now really be managed properly. She feels like both she and her daughter are more in control of it and her daughter feels more empowered.

I wish I had had one as a child!!

sounds good, I had a look at the web site boyut couldn't find anything about it on there

If you want a diary - call 01342 832243 ext.296 or email [email protected]

Hope this helps :-)

Thanks kelly - might help me be a bit more organised about noting down DS's seizures

Move to Leeds Riven, ours there is fab Unlike the one in our home town who hasn't contacted us in three years.

Riven - where do you live? Your local Primary Care Trust should be able to help, but I can ask in the office if you like.

I don't think it's remotely appropriate for DD1 or, indeed, anyone we know. But if you have mild E and nothing else wrong with you I can see this must be hugely useful. Good on the NCYPE.

a specialist epilepsy nurse? don't make me laugh

We have never even seen anyone from the pilepsy team, let alone a nurse. Yet they expected me to know how to use rectal diazepam from someone saying "you stick it up their rectum and squeeze and then hold their buttocks together" and now I have had a similar (but obviously not bum related) explanation about the buccal. We were given a diary but no way of knowing whether our child was having absennces or not because we really have been given no information at all (maybe i should contact my mp/social worker etc )

hi all -

am new to all this, my DS had begun having absences, we think... waiting for tests. any advice appreciated!

Me again - the NCYPE also does a Parents Handbook and runs a families conference every year. I have copied this information from the NCYPE website for anyone interested:

The Childhood Epilepsy Information Service provides a professional and comprehensive information service using a variety of sources including:

Leaflets and fact sheets written by our own specialists
Leaflets and fact sheets produced by members of the Joint Epilepsy Council
Approved websites
Audio visual aids
Books and Journals
Enquiry Service

The Childhood Epilepsy Information Service also provides an enquiry service for anyone wishing to find out more about epilepsy in children and young people.

Telephone : Confidential enquiry line 01342 831342 (national rate call), Monday to Friday 9am-1pm

If you can't find help in your area - Speak to the info service. They will listen, understand and try to help.

Thanks kellyoh - looks like that might be a good place for us to start...