Reflex Anoxic Seizures

[Morgie]

My 3 year old son was diagnosed with suffering from RAS when he was approximately 18 months old. He had had a number of attacks prior to this which I had put down to breath holding. He basically collapses( goes very pale,eyes roll back, difficulty breathing and sort of loses consciousness-a bit like a fit but not quite if that makes sense) occasionally when exposed to stimuli of pain. Children do often grow out of it and I thought my son had, having not had a seizure for nearly a year. However he has had two in the past 3 months approx. Are there any mums out there who have children who suffer from RAS and if so what are your experiences of gaps between seizures and of telling primary schools. My son is at nursery and the staff are fine about it but I am a little unsure about how to deal with "big school".

[Bronc]

Morgie
I don't have any first-hand experience of RAS, but a friend's son has just had his first attack so we've been looking into it. There is a support group on the web which looks great, no newsgroup unfortunately but some case studies.
www.stars.org.uk
Best of luck to your son at Big School.

[Mooma]

Morgie, I was very interested to read your message, as in the past 18 months my son has twice lost consciousness, in both cases after a painful knock. The first time it was almost simultaneous with the injury, the second he was at school and waiting to have a bad graze treated. He was out cold, the most horrible yellow-green colour, and unresponsive for about 20 seconds. I have never come across this reaction to pain in my three older children. Do you think this could be a mild form of RAS? I have just looked at the website cited by Bronc, and it seems that most sufferers have more frequent and severe attacks than my son's.

[Copper]

I've never heard of RAS, but I think my daughter suffered it once as a toddler - it sounds exactly like what happened to her.

Don't worry about the school - just inform the head teacher and make sure that the school staff know what to watch out for, what to do etc. They should have designated first aiders, but will also need to warn all staff members (as well as the class teacher). At our school, there is a boy with a severe peanut allergy and each classroom teacher has a photo of him on the wall, with instructions as to what to do if he collapses while they are on playground duty.

[Tusky]

is this like fainting ? - as a child I used to faint quite often- sometimes on swings, and once almost fainted after being told by my doctor that I'd a hole in my eardrum (which sounded horrendous to me- I had to leave my mum in the surgery and go outside-then on the way home I felt so faint we had to sit on a garden wall until I recovered). This all might have been due to my being anaemic - but it's also happened in later life to me,when I haven't had anaemia- once on a tube train and once on Victoria Station -horrible ! Nothing since,not even when pregnant.
I think there was an article in a newspaper a week or so ago about this very subject,but I can't remember which paper.

[Tania]

My son, who's now 2 has RAS and had his first attack aged 13 months. It is often misdiagnosed as breath-holding or epilepsy and many doctors and consultants have never come across it despite it first being identified more than 20 years ago.
During an attack, the child goes ashen, sometimes his body jerks and his heart and breathing stop, causing him to lose consciousness. After a short while the body automatically kick-starts itself and the child regains consciousness although is usually disorientated and drowsy. It's not fatal, but if you suspect your child may have RAS you should insist on being referred to a consultant and check out the website already mentioned www.stars.org.uk. It is run by Trudie Lobban who is extremely knowledgeable and helpful. My son had an EEG to rule out epilepsy and is awaiting an ECG to rule out any other complications. Do not accept being told your child is holding his breath in a temper tantrum if you know he or she is definitely not! The attacks are frightening to see (my son has had three in one day and there are other cases far worse) but once you know what it is and how to deal with it, it's easier to cope with. Good luck!

[Petal03]

my 7 year old daughter has just been diognosed with r a s this has been happening since she was 1yr old they put it down to breath holding it has now happend at least 40 times and always through pain or shock some times it can have a long varried of time in between attacks but never the less is still very frighting my daughter goes pale but her lips go blue to dark navy her eyes roll back and she goes limp occasionaly she wil jerk a bit and has been known to come out of 1 and go back into another i to like other mums am very concerned about her in school just incase she doesent start to breath again

[buttercup]

i suggest you contact an organisation called STARS. you can find them on the web. they are brilliant

[Joms]

All of you beautifuly describe my 2 year old daughters symptoms and it was a relief to see. She is currently an undiagnosed 'breathholder'but we have been referred to a consultant to find the cause. I may take all this new information with me. I am unsure of one thing though, When my daughter recieves a sudden shock, she screams one long breath out that gets quieter and quieter, a look of pure terror crosses her face and she physically cannot take a breath in. She then lapses into the RAS symptoms, Does anyone else get this? I would be grateful for a reply.

[butterflymum]

Hope people don't mind me 'bumping' this up again but the thread started and finished before I 'discovered' mumsnet.

I too have a son with RAS. He is almost four now and had his first seizure at a few days old. It took myself and my husband over 3years to get a confirmed diagnosis in January of this year. I found out about RAS through my own research and stumbled on the STARS charity a couple of years ago. Like those who have posted before me, I would urge anyone with concerns as to whether or not their child has RAS, to contact STARS. This year, I have helped raise awareness of the condition and STARS by campaigning here in Northern Ireland. A local newspaper and TV news programme carried interviews of myself and son and another NI mum and her son.

Awareness still needs to be raised as I am sure there are still parents who have not been able to get their child diagnosed.

Out of interest, are their any other mumsnet parents who have a child with RAS?

Also, did those of you who posted before me receive the help you needed? If yes, great. If not, why not contact STARS now.

RAS can 'come and go' a bit. Children can have spells without many (or indeed any) attacks and then they can start again. Adults, too, can suffer from RAS.

PS

RAS should not be confused with 'blue' breathholding or epilepsy (as it sometimes is).

[butterflymum]

Last call - are any of you mums who posted before me, with kids who suffer RAS, still out there?

Do any other mumsnet parents have children/know children with the condition?

Or, indeed, are there any adult sufferers out there in mumsnet land?

[butterflymum]

Sir Roger Moore has recently become a Patron of STARS, the charity that helps sufferers and their families - you can read about him on

Sir Roger Moore

[butterflymum]

Hello

Hope no one minds me bringing this post up again. RAS is often un-diagnosed or wrongly diagnosed, so it helps to remind people now and again that it exists and what help is available (please read my post of 22nd June).

butterfly

[sugarplumfairy]

My DD1 did the same as joms DD about 10 times, took her to the docs and I think he thought I was a nutter (it was a locum not regular doc who is lovely) she is now 10 and these happened when she was about 1-2 years old when she would throw herself around in a tantrum and then bang herself and then stop breathing. They just stopped as suddenly as they started don't know why but agree it is frightening when it happens but you become more able to deal with them.

[sugarplumfairy]

My DD1 did the same as joms DD about 10 times, took her to the docs and I think he thought I was a nutter (it was a locum not regular doc who is lovely) she is now 10 and these happened when she was about 1-2 years old when she would throw herself around in a tantrum and then bang herself and then stop breathing. They just stopped as suddenly as they started don't know why but agree it is frightening when it happens but you become more able to deal with them.

[sugarplumfairy]

My DD1 did the same as joms DD about 10 times, took her to the docs and I think he thought I was a nutter (it was a locum not regular doc who is lovely) she is now 10 and these happened when she was about 1-2 years old when she would throw herself around in a tantrum and then bang herself and then stop breathing. They just stopped as suddenly as they started don't know why but agree it is frightening when it happens but you become more able to deal with them.

[sugarplumfairy]

Oops

[Emmas1985]

My son is now 5, started having them when he was 4 with just one that was awful, lasted ages and took him about an hour to be back to himself. That was it for a few months and now he's had another two in the last month. All are triggered by him cutting himself (smallest cuts and scratches you can imagine). Doctors are now referring him for investigations as they are full seizures once he has fainted, very scary! Feel like I just want to wrap him up in cotton wool so he doesn't see his own blood ever again 😩

[BG2015]

My DS was diagnosed with RAS after 2 episodes. First one he was 10months, his brother pushed him back and he banged his head, vomited, eyes rolled back, went unconscious- most terrifying experience of my life. Rang 999. He was admitted and out of it all day.

It happened at my parents house, same thing, bump to head, a few months later. This was in 2004/5

He's now 14 and hasn't had one since. I do believe that most children grow out of it. But it's very, very frightening when it happens.