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Teen with epilepsy and dyspraxia

3 replies

merriment3 · 02/01/2011 15:24

Hi - my beautiful 12-year-old daughter has epilepsy and dsypraxia. I would love to chat to another parent who has a child with similiar problems. We managed fairly well until secondary school but now find ourselves increasingly isolated. I am beginning to feel at a loss as to how to help my daughter fit in and make friends.

OP posts:
pinkorkid · 02/01/2011 20:06

Hi merriment, sorry to hear your dd is having problems settling at secondary school. It is nearly always a difficult transition to make if your dc has any kind of special need. My ds 13 has different diagnosis - primarily asd - but has had similar problems with making friends and feeling isolated.

The amount of help you can access via the senco will depend to some extent on what stage you dd is at on the sen register -school action action + or statement. Having said that having a high level of support from a 1 to 1 lsa throughout the school day isn't likely to help you make friends. but possibly being included in a social skills group run by the sen dept might help.

One possible means of support is the circle of friends where a pre-selected group of your daughters peers will be told in a simple way about your daughter's difficulties and appointed as her champions to look out for her. Link to some info on this here: www.inclusive-solutions.com/circlesoffriends.asp

This can also be done on a smaller scale via a buddy system, where your dd's form tutor can ask someone else from her class to stay with her at break-time and go with her to the canteen - this doesn't have to be the same person all the time and doesn't necessarily have to involve explaining about your dd's epilepsy and dyspraxia.

Informally you could see if your daughter would like to invite anyone from her class to come round to your house after school or to do something fun at the weekend. Making sure nice food/treats are available will help the process along.

Of course, a lot of these strategies are dependent on your daughter's wishes and sensitivities and how much she is willing to be upfront with others about the difficulties she faces and also on the sensitivity and emotional maturity of the other children involved. Hopefully by this stage in the year their form tutor should have a reasonable idea of personalities.

It is really worrying and I don't think there are easy answers but in your position I would contact both the senco and your dd's form tutor to discuss concerns and see what advice they can offer.

majajefferies · 06/01/2014 00:52

Hi,
Just googled dyspraxia and epilepsy and found this thread.
I was wondering if you could maybe help me out, my son is 12 and has both conditions but we are really struggling to find suitable epilepsy medication as they all seem to worsen his dyspraxia and cognitive abilities, plus the aggression and appetite…
Is your daughter settled into her school now?
Many thanks,
Maja

merriment3 · 28/03/2015 12:49

I have just seen your post!!!! I hope your son is making good progress and has sorted out his medication problems. My DD became very naughty on Epilim and very depressed on clobazam. Lamotrogine, carbamazepine and Keppra have all worked well for her with few side- effects. She does have a healthy appetite but this has not been an issue for us as she is naturally slim. Dd's epilepsy has been very hard to control and she has had a pretty miserable time, but now has a VNS implant which has made a big difference. You may want to consider it if your son is still having problems.
I am very happy to chat more if you like. I found Dd's dyspraxia more difficult to cope with in some ways. Good luck to you both. ??

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