Reflex Anoxic Seizures

Last August, when Alex was ten months old, he gave us the fright of our lives. I genuinely thought we had lost him. Even now when I think about that day, I feel physically sick.

It was a warm day and the kids were in the garden with Graham. Harrison was running about and Alex was having a crawl on his mat whilst I was doing something in the kitchen.

I heard Alex cry and the next thing Graham comes rushing in with him shouting that something was happening to Alex. What I saw still haunts me. He was in Graham’s arms, completely blue. His eyes had rolled into the back of his head and he was rigid but jerking, like he was having a fit. I grabbed the phone, and somehow managed to dial 999. Whilst I was doing this, he stopped jerking and was completely still, and not breathing. Graham had him on the floor doing CPR (he has had first aid training). I remember screaming at the operator that my baby was dying.

After what seemed the longest few seconds of our lives, he came round and started crying. Although he was still very pale, the blueness went. He was really clingy and sleepy. The paramedic turned up. Because he had started to come round, the ambulance didn’t come for a while so I took Harrison to my parents at the top of the road whilst Graham stayed at home. The paramedic checked him over and put him on a heart monitor which showed up fine. When the ambulance came we went off to Heartlands hospital to get him looked at.

By the time we got to hospital, you wouldn’t have guessed anything had happened. He was crawling around quite happily, charming the doctors and nurses whilst they observed him for a couple of hours.

We were told that he had suffered a reflex anoxic seizure. They didn’t give us much information about it, and told us to see our GP. When we got home we did some research as we’d never heard of it before.

Basically, a reflex anoxic seizure is a fit caused by a temporary cutting off of blood to the brain. It’s nothing to do with epilepsy, and is different to a breath holding attack.

It can be triggered by a number of things – pain, fear and shock being common triggers. In Alex’s case it was pain (Harrison had crashed into him). The trigger causes the heart to slow dramatically or stop, which in turn affects blood supply to the brain. It affects about 8 in every 1000 children and is most common between 6 months and 2 years old. It is scary, but not life threatening, and most children grow out of it.

He has had about five of these seizures since, although none quite as bad as that one. Although they’re still terrifying, we are much calmer when they do happen and we know how to deal with them – place him on the floor in a safe position, check nothing is blocking his airways and rub his back and reassure him. He’s usually clingy and sleepy for a few hours afterwards but they don’t necessitate a hospital visit.

It doesn’t have a massive impact on daily life. Our family is aware what to do if he has one of his seizures. The main things we do is try to prevent them. If he hurts himself we try to make him laugh before he realises it hurts which works most of the time. I know a lot of people would automatically want to wrap him in cotton wool, to stop him hurting himself. As tempting as that is, I think it is important for him to be able to deal with pain.

For more information and support on reflex anoxic seizures, visit S.T.A.R.S.

Reflex Anoxic Seizures | www.parenthoodhighsandlows.com

29 thoughts on “Reflex Anoxic Seizures

  1. oh what a terrible experiences, my nephew does what we call kinking which i s very similar, he hurts himself and has that much pain or shock that he stops breathing and cant grasp any air to take a breath, its a scary thing to see x

  2. Oh my goodness, what a terrifying situation to have found yourself in, that must have been awful! So pleased to hear that he’s doing well otherwise and the fits are kind of manageable. xxx

  3. What an awful scare for you all. My daughter developed the meningitis rash at 15 weeks old and we were rushed to hospital. She was fine but I will never forget that sick desperate helpless feeling. Thanks for sharing your experience and for raising awareness.

  4. When anything happens to our children , we tend to suffer more than them. This sounds frightening. I had never heard of reflex Anoxic seizure. All the best and I hope that he grows up, it doesn’t affect him too much.

  5. Oh my god! that must have been so scary! I don’t think I would know what to do but cry if this happened to one of my boys! Thank you for sharing! Another thing to look out for!

  6. I cannot even begin to think how awful that must have been for you. I’d never heard of it before so I’m so glad I have read this.

  7. oh my, these like these makes you think how precious every minute and every second of our lives, hope this wont happen ever again

  8. How frightening…my heart literally sank for you. My friend went through a similar experience with her son and there is nothing more terrifying than when your child stops breathing. x

  9. That sounds terrifying, and I’ve never heard of it before. Useful to know, thank you for sharing x

  10. Oh gosh can’t imagine how scary that must have been for you all! I have never heard of this before!

  11. That must be one of the most scariest things ever. Having to live with a child with a condition is hard, but I can not imagine going through this. You are right not to wrap him in cotton wool, although I can imagine that is ALL you must want to do

  12. Unfortunately I have come across this in my job and it’s horrible but I cannot imagine how terrifying it must be for the parents. Thank you for the post xx

  13. That sounds so scary and I really hope he grows out of it soon. Well done for writing this post and raising awareness of this condition.

  14. That must have been so scary for you. I’ve never heard of this before. I’m glad he’s ok now. Thanks for linking up to the #binkylinky

  15. Oh my word, what a terrifying experience. Thanks for sharing your story to we all know what one of these seizures looks like when we see it. Glad to see little one happy and unscathed from the experience in the super cute photo

  16. That must have been so terrifying for you. Babies are so tiny and precious, my heart still skips a beat every time my daughter has a tumble (she’s 21 months and has them A LOT!!) It’s really great you are able to deal with it so calmly now though and can help prevent it happening x Char
    (http://charlotteskitchenblog.blogspot.co.uk/ – feel free to pop in and say hi!)
    #binkylinky

  17. never heard of that before, but thanks for sharing as if I ever come across it, it wont be half as scary now I know the facts! Thanks for using #binkylinky

  18. That must have been so scary. Abbey had febrile convulsions as a child and I was so scared – it made me get first aid trained though which is something I think every parent should do

  19. Oh how scary for you all, just horrible. I’m so glad to see you are not wrapping him in cotton wool from now on though. It shows what good parents you are x

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