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Reflex Anoxic Seizures - anyone experienced these?

(12 Posts)
MotheringShites Sun 17-Nov-13 20:39:29

Back from hospital after a diagnosis of RAS.

DS2 is 2.10. This morning I found him rigid and not breathing, face down on the floor. To say it was the worst moment of my life is an understatement. I frantically called 999 while DH performed mouth to mouth. He quickly came round but was sleepy and listless. Ambulance took us to hospital and after some observation we saw the pediatrician who diagnosed RAS.

I am still terrified, although DS was leaping about, Spider-Man style all day.

Any experience or advice?

MotheringShites Sun 17-Nov-13 20:45:25

Sorry to do this but, Bump.

Queenofknickers Sun 17-Nov-13 20:47:23

No personal experience but remember reading about them in a book by Stephanie Calman as her daughter has/had them. Let me go search for book - I think it mentions a support group etc. her daughter is totally fine and much older now.

Queenofknickers Sun 17-Nov-13 20:53:14

Right, found book (btw is v funny book called 'Confessions of a Bad Mother'- I highly recommend)

Her daughter Lydia had this and the support group she mentions is called Stars. She says Lydia fainted for he next 3 or so years then it stopped - no ill effects. ) Hope that helps in some small way thanksthanksthanks

butterflymum Sun 17-Nov-13 20:55:25

The wonderful folks at http://www.stars.org.uk/ will give you all the support you need.

Best advice is, hard as it might seem at moment, is don't wrap your son up in cotton wool. Find coping mechanisms that work for you, that help you keep calm if and when he has further RAS episodes. Do not be afraid to share with others that care for him about RAS (playgroup and later school etc). Hopefully, as he grows and develops, his RAS episodes will reduce. They are not pleasant for any parent/carer etc to watch and experience, but they are always self limiting and usually do little else than leave your child very tired for a time afterwards. You will find your child usually recalls very little indeed about the episodes.

butterflymum Sun 17-Nov-13 20:55:51

oops

forgot to convert link.....here you go

www.stars.org.uk/

MotheringShites Sun 17-Nov-13 21:00:57

Thank you.

butterflymum Sun 17-Nov-13 21:08:59

Do read up on all the info on the STARS website and do phone/email them for support as necessary. It will do you a power of good to chat with someone who fully understands what you experienced with your son, your fears and concerns and to help you realise you can and will cope.

Nowadays, RAS is so much better understood. Years ago, parents were palmed off with being told their child was having a temper tantrum or were mistakenly given diagnosis of Epilepsy. RAS is neither.

MotheringShites Sun 17-Nov-13 21:18:36

I will thanks butterflymum

I really thought my baby was dying. I just can't express how that felt or how I can't shake that feeling, even though the doctors have assured me of the benign nature of the fit. I feel so relieved but so traumatised at the same time.

butterflymum Sun 17-Nov-13 21:39:19

Now that you have experienced those feelings, use them positively to move forward.

If he has another seizure, you will be able to cope better with it at the time and recover quicker from the experience afterwards. Importantly, how you react and deal with RAS will impact on how your son will deal with it as he becomes more aware of something having happened. If they are regular, it will become second nature to you to cope. It may still be frightening to you, but you will be able to better process in your mind what is happening and what the outcome will be and this will help.

Do also be aware that you will need to understand how others that have contact with your son might feel/react were he to have a seizure whilst with them.....eg grandparents/aunts/uncles. You know that you felt traumatised, then be aware that they will actually feel this and more, as they are not the actual parent and will be feeling that as well as the trauma of coping with a child who has had an RAS episode, they will feel guilty that it happened whilst with them and feel worried about what you will think of them. Make anyone that will have such contact with your son understand how the experience might make them feel and reassure them that you would in no way blame them for an episode occurring. That there is nothing they could do to stop it and if it is going to happen it will, regardless of who is with your son. Explain to them too, about the nature of RAS, how it will always have a trigger , and, as you have now learned, it is always self limiting. Share coping strategies as well.

flippyfloppy Sun 17-Nov-13 22:02:22

Hi there, I understand what you are going through. DD had one of these last May, she was 4.5 yrs old. I have never been so scared in my life, I thought we had lost her. The event was made worse by the fact they wouldn't send an ambulance because they had me on telephone for 7 minutes and by that time she had come around (that's another thread!) . Anyhow hospital arranged for my DH and I to attend first aid course, she had a day at the hospital doing all sorts of tests on her heart and eventually through elimination it was put down to a reflex anoxic seizure. At the time I never thought I'd get over the experience or ever be able to have her leave my side. However as they say time is a great healer, we've had one episode since when she was coming down with chicken pox and appeared to be fainting/passing out but it was a much milder episode and she didn't lose consciousness. It still haunts me at times, but the more you speak about it the more you hear of anecdotes from people who have been in similar situations which I found some comfort in. I also made an appointment with my GP to talk about the episode, as at the time I found it hard to accept these things just happened. The next week or so will be hard but once you process it all things will get back to normal. Good luck and glad to hear your son seems OK, it's us that suffer! X

MotheringShites Sun 17-Nov-13 22:23:04

Thanks flippyfloppy I'm now getting ready to sleep on the floor next to his bed. I know I have to get back to normal but right now I can't leave him. I felt the same. I really thought I was going to lose him. It was brief but the most frightening thing ever.

I'm glad to hear your DD is ok.

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