14 month diagnosed with RAS... How do I cope

My daughter was recently diagnosed with reflex anoxic seizures. Since then she has been having 1-2 a week. The funny thing is so far they have only been around me and her dad. I am absolutely lost it's the most frightening thing I've ever seen. Where now on our 7th seizure and each time I worry this will be the time she doesn't come round.

Triggers seem to be unexpected pain and when she gets really upset but it doesn't happen everytime so I'm at a loss. I worry about going into the kitchen incase this is the time she has one and I don't get back in time.

Does anyone have any tips for coping or catching these before they happen and stopping them.

I also work and I'm really worried about her at nursery.

Thanks for any feedback really appreciate it.

2 Replies

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  • The most important thing to remember is that although RAS is frightening to witness, it is not life threatening.

    Your say your daughter only seems to have RAS attacks whilst she is with you and her father. This is likely because she is most relaxed around you, so any sudden stimulation comes as more of a shock to her. Likewise, when she is at nursery, her senses will be more alert, she'll be excited about playing with her friends, and her adrenaline will be pumping. We often find that children have fewer episodes when at nursery and school.

    We have devised a care plan for you to share with her nursery along with our information sheet. Please visit stars.org.uk and download our patient resources. Alternatively, you can email us info@stars.org.uk and we will gladly send information through the post.

  • Hello, I am having a similar experience with my son but my paediatrician told me he will always come back, is it possible he might not? I would never ever risk it and similarly he has had them all with me except one with his dad. It is truly terrifying. I read on the STARS website that they have more with their main care giver as that's when they are most relaxed and able to let go. I worry about when im at work but his childminder is very good.

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