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Children's health

Reflex Anoxic Seizures?

10 replies

Gingerbics · 15/02/2012 21:45

My 17 month old had one of these on Saturday and it was completely terrifying but thankfully he's ok.
I actually thought he'd died in my arms. Consultant says that although they look. life threatening they're not and says it's likely he'll have more.
I've since read up quite alot about them
But wondered if anyone else's little ones or big ones experience them.
Thanks

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LakeFlyPie · 15/02/2012 22:06

Poor you, it is scary, particularly the 1st one you see Sad

DS1 has what I think are RASs.
Always in response to pain / shock.

He had his 1st at 8 mo when he toppled over face first onto a tiled floor and split his lip, I was terrified and it seemed like he held his breath forever. In reality it was probably less than 10 secs, but his eyes rolled back and he went very pale and clammy.
I took him to GP who said it was fairly common and he would grow out of them.

He's 3.7 now and had his last one a few months ago.
I think he's probably had about 10 in total over the years and I still find them horrible to see, even though I know they aren't harmful and that he recovers quickly.

I warned nursery about them when he started there aged 14 mo and they weren't concerned as they have dealt with children who have had them before.

Am hoping he'll have grown out of them by Sept when he starts school but presume that if he does have one they will be au fait too.

I read a bit too and was interested about the low vagal tone theory as I was a bit 'fainty' in response to injury / squeamish situations as a child / teenager and wonder if there is a genetic component.

Hope your DS grows out of it quickly Smile

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Gingerbics · 16/02/2012 20:32

Thanks so much for taking time to reply Lakefly! Hopefully you're coming out the other side now. You're right it really is terrifying.
Can I just ask, when your son has one, what exactly do you do with him, we've been told to put ours in the recovery position. I think that seems strange as I always thought recovery position was for when breathing had resumed but not yet conscious. My boy had def stopped breathing and the heart had stopped too but maybe I guess as they are sure with this type of seizure breathing will start again quickly, it's the best thing to do.
Thanks again x

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IShallWearMidnight · 16/02/2012 20:44

have you come across STARS yet (charity for RAS amongst other fainting conditions)? Very helpful they are.

I saw video footage of an RAS attack last year at the STARS patient day - it looked terrifying, and that was without it being my child, and knowing what we were about to see. Only positive thing is that most DC do grow out of it AFAIK, and it's generally well know amongst medical people (not that I'm still furious with DD2 paediatrician who refuses to accept that she has a physical cause for her fainting, and it's not down to some deep-rooted trauma in her childhood. Sorry for rant mode Wink)

STARS have resources for schools LakeFlyPie, so it's worth flagging them up with nursery as well, just so that everyone knows what's what.

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Gingerbics · 18/02/2012 06:30

Wow great tip re: STARS ishall, have downloaded some info to give the childminder. How old was your little one when it first happened?
Sorry to hear about your frustrations with the paediatrician, must be so frustrating when they dont listen.
We're at that still v anxious stage when our son cries, falls etc waiting to see if it'll happen again. Mind you, it only happened a week ago so still v fresh in our minds.
Thanks again and hope you have a good weekend.

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Gingerbics · 19/02/2012 21:13

Bump!
Just wondered if anyone else has any experience of these?
Thanks Smile

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starsus · 20/02/2012 19:07

STARS is the only non-profit making organization worldwide offering support, information and advice to those affected by syncope.

We receive enquiries from people of all ages, care givers, individuals and families and provide information and support from diagnosis through to treatment and long term management of syncope.

Our website, //www.stars-us.org is packed with information on these debilitating conditions, including patient stories and a brand new ?Ask the Expert? column, when each month a leading heart rhythm expert will focus on a particular condition.

We also run a moderated syncope message board where many of our members join so they can exchange information, share experiences and sometimes ?just chat?. Many find the board a source of comfort and reassurance that they are not alone.

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colettejane · 19/07/2014 12:28

My toddler suffers from Reflex Anoxic Seizures, we live in Ireland. If there anybody out there who child suffers from the same thing as there is not much information in ireland only with Stars uk

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ImperialBlether · 19/07/2014 22:37

Colette, my son suffered from these from the age of 2-3 and he hasn't had another since then. The consultant said that it's really common to grow out of them. The recovery position is best and if they have a fit, you shouldn't worry as then their breathing will kick start. It's incredibly worrying. I hope your toddler is OK.

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LIG1979 · 20/07/2014 14:49

My dd (almost 2) has had a couple and they are horrible. She also had a febrile convulsion but not sure if they are linked. That stars website is good. I have spoken to both doctors in a&e and the doctor at our surgery and they all seem unworried and sure she will grow out of it.

Also, it does not seem to worry dd. she is usually fine pretty quickly after it but it is me that is left traumatised and upset for a long time after.

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ImperialBlether · 20/07/2014 17:33

I was traumatised too, LIG. The first time it happened someone called an ambulance. By then my son had had a short fit and was breathing again. The ambulance driver wanted to take me to hospital as I was in such shock - I truly thought my son had died.

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