Epilepsy Research UK
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Absence seizures / daughter newly diagnosed

Hello! My daughter (9) was diagnosed with absence seizures this week and starts meds today. All seems pretty straightforward so far and she's fairly ok with it. The fact that she had a truly lovely paed look after her helped!

Hoping to connect with other parents looking after young people with absences to get advice about how protective to be. DD is so keen to be independent and do things like go to the shops on her own and walk to school by herself but even if seizures are mostly controlled, I'm not sure I can let her out of my sight let alone cross roads on her own :(

Struggling to find a balance in my head between letting her have freedom and keeping her safe .

Cheers

Pagea

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Hi, I am sorry you have this to deal with. I am not a parent but feel you need support (who doesn't?).It is hard I would assume being a parent anyway dealing with the normal everyday things and trying to get the balance right. I suppose it is all about guiding and teaching children to be safe in the world they live in when we are not there, and perhaps it's the same when a child has a condition.Sorry, I hope this doesn't sound patronising, just trying to work it out.

I expect you have or will be developing strategies to help. For example I wear a hi viz jacket when I am out, I know a child might be more self conscious, perhaps there are some jazzy types about, so that as I can be slow crossing or if I have a problem I will be seen. Does she have any pals going to school along the same route or who would pick her up on the way to their walk to school. Having people around you that know what or what not to do (i.e. panic and call paramedics) is half the battle.

If this is a condition that has just presented it itself it may be that you haven't yet determined if there are any warnings (auras). It might require you and your daughter to work together to help her to write things down, what she was doing before hand, how she felt etc,etc. This might help to identify triggers and early warning signs. If any can be identified this would be fantastic.

I hope you get some other feedback, have a good look round other sites especially the Epilepsy Foundation. Unfortunately you are not alone with this problem so there should be some good advice out there. Possibly the Ormond street Hospital?

Good luck

p.s. they way I have been dealing with this epilepsy to just to know as much as I can about it and the medications and the detail of how and why it is affecting me etc.etc.

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My son takes vimpat with Keppra. The first 2 to 3 weeks in vimpat he was very tired. The side effects subsided.

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Our daughter is 8 and has had AS since 2.5. She is fairly self conscious and very independent. Mostly her seizures don't seem to interfere with active living, though she's not at the stage of crossing roads and going out on her own. They do disrupt her thinking and flow of consciousness which she finds frustrating. She is a bright kid, but always a beat behind at school and in PE in particular. Next year she starts swimming with the school and they want her to wear a different coloured swimming cap to identify her and she's dreading it. We have had a really rough ride in terms of medical support. Her epilepsy hasn't responded to meds and we've become a bit lost in how best to deal with situation. We are currently trying to find a new, sympathetic epileptologist or neurologist! I wish you luck and positivity with your daughter. There will be a way because there always is. If I can't help with anything, don't hesitate to ask :)

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