Epilepsy: A Parents Advice

My son Thomas was diagnosed with Epilepsy when he was just 1 year old, since then we have been on a roll-a-coaster ride of ups and downs, twists and turns. I would like to share a few words of advice for other parents of children who have Epilepsy.

 

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Epilepsy Parents

I have also joined “Epilepsy Parents” group on FaceBook, and had some really good advice from Debbie, founder of the group and owner of www.epilepsy-parents.org.uk.

Ok, I will keep the advice short and sweet, 5 tips from me and 6 from Debbie. Please feel free to ad your own comments and advice at the bottom of this post.

My Advice

  1. Don’t Panic - It’s ok, you are not alone. There are many other parents out there who feel or have felt the same way you do.
  2. Understand Epilepsy – Research what Epilepsy is, join discussion / support groups online (Epilepsy Parents is a great example, and a very friendly community).
  3. Don’t Wrap Your Child In Cotton Wool – What I mean here is don’t try to be over protective, your child will learn to adapt to their Epilepsy (far better than you will), it is important that you don’t make them feel “different”.
  4. Be Prepared For Tears - As Thomas has grown older, he has started asking questions about Epilepsy, and he has also started getting a little upset with it.
  5. Get Involved – I have found that in order to understand Epilepsy (from a parents view point) it is very useful to get involved in the Epilepsy community. I have met some amazing people and gained some great advice over these last 4 years.

Debbie’s Advice

Debbie has given the following points of advice, I have tried to explain what I think she means by them (Debbie let me know if you want to correct me over these points ) :)

  1. Don’t Read Too Much Online – Online information can be quite scary and very confusing, in my experience it can also be very outdated.


  2. Find Support Groups – Speak to people who have already been through a similar situation, speak to other parents and professionals.
  3. Ask A Lot Of Questions - Again, ask people about Epilepsy, similar to “find support groups”. If you don’t ask you won’t know is what my mother used to say. :)
  4. Contact Debbie – It’s true, get involved with her FaceBook group, ask questions. Speak to like minded individuals. Visit Her FaceBook Group.
  5. Be Aware Of The Support You Are Entitled To – Find out the benefits you can claim Disability Living Allowance etc… (DLA can be quite hard to get granted, I have applied 3 times for Tom).
  6. Be A Pain In The Arse - (This made me laugh when Debbie told me) Make sure that schools are doing all they can for your child and fully understand your child’s condition, Thomas has a lot of support from his school, thier staff members have been fully trained in how to use Thomas’s VNS device.

Resources From Epilepsy Scotland.

I have also been given some really useful resources by Craig at Epilepsy Scotland, children’s story style information documents explaining Epilepsy in a way children can relate to and understand (thanks Craig).

  1. Farah & Ted Visit The Hospital.
  2. Brian Learns About Epilepsy.

Epilepsy Scotland have a huge range of information, the Parents Guide is very good.

Full list of Epilepsy Scotland’s guides here… http://www.epilepsyscotland.org.uk/information/guides/

Summary

Finally, each child will have different needs, make sure you get the support you need. Be supportive of your child. Join groups, and support other parents!!!

Thanks for reading, please feel free to add your advice to the comments section below.
Andy & Thomas.

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