Absence seizures - daughter newly diagnosed

[Pagea]

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

[EpilepsyMum]

Hi Pagea, give yourself time. I promise you, you and your daughter will feel more confident as time goes by. It's quite a shock when you first get the diagnosis and there is an awful lot to get your head around. When our daughter was first diagnosed at the age of 5 (she's now 14) we wouldn't let her out of our sight. She now has drug resistant epilepsy and multiple seizure types but she wears protective headgear and the people she spends time with know of her condition and keep an eye on her, allowing her to do the things she likes. If your daughter is happy to talk about her epilepsy, inform as many people as possible, let them know what to do if she has an absence - what to look out for, what the triggers might be (if there are any) but this might take time. Epilepsy is a tricky beast and seizures can change but allow her to do the things she wants but encourage her to assess the risks and how she should manage them. Make sure people she's with know what to do as well. It will get easier, I promise. Good luck!

[HeroOfChaos]

A GP I saw yesterday reckons I might have the same & been reffered to a neurologist to find out for sure as it happens with TV screens & computer monitors, I'm still finding this hard to take in as it means I can't drive

I'm kinda expecting something to come back & will be shocked if it doesn't

[Pagea in reply to HeroOfChaos]

Hope your appointment goes well. Are you keeping a diary of what happens and when (helpful for the neuro and also for you to work out triggers)

Let us know what the outcome is.

[HeroOfChaos in reply to Pagea]

Yes I have been keeping a diary of when it happens & it's around TV's, computer screens & flashing lights, has happened in 5 different places

I will keep you all informed as the appointment is on tjhe 26th of this mnth