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Reflex anoxic seizure(17 Posts)
Hey everyone, ds has been diagnosed with reflex anoxic seizure. He has had two, both after minor falls. they are absolutely terrifying when they happen and was wondering if anyone has any experience of this and what triggers them in their lo. Also did lo grow out of them?
any info gratefully received, thanks
Anyone? Im really interested in common triggers so I can avoid them as much as possible
A child at my Dds nursery had them.
His mum has been told he will grow out of them in all probability. Must be frightening to watch
For the child we know the main trigger has been falls and bumps.
my ow 6 year old has them. as a baby he would go lifeless- and roll his eyes..this seemed to disappear when he was 2ish then it came back when he was4. When he had a temperature, or got too hot- he would collapse, similar to a faint but also unresponsive and limp.Initially they said it was febrile convulsions- but after seeing another consultant they decided anoxic reflex seizures- although he doesnt fit or shake, he flops. I was told they are most common, when a child has a fright, bump to head or high temperature. They are self limiting and the child grows out of them-my 6 year old has not had an episode since he was 5.5yrs old. i now always make sure school has calpol to give him as soon as he says he feels unwell as he spikes temperatures quickly, and to strip him off when he becomes too hot.
My DS2 had these. They are bloody awful. He had his worst one had a playgroup and they called an ambulance whilst I wept and a vicar prayed over him. He is now 3 and hasn't had one in over a year (he probably had about 10 or so, all from falls and bumps to the head). I am pretty sure he has outgrown them. Remember that no one ever died from an anoxic seizure and here is a great tip - blow in your son's face repeatedly when he is trying to 'go under'.
My DS never got them with temps only bumps to the head.
My DS suffered from them but appears to have grown out of them, he's just coming up to 4 yrs & hasn't had one for 6 months or so.
Falling was one of the main triggers but plenty of other things also caused them e.g. GP trying to look at his throat when he was poorly, nurse cleaning his cannula when he had breathing problems, getting to hot in the car on a day trip - even getting overtired/upset could sometimes trigger a seizure. They were bloody terrifying at first but after a while we became used to dealing with them and it wasn't too bad - though anyone watching would be frightened to death & nobody would ever babysit for us.
STARS are amazingly helpful and supportive with factsheets and info for schools/pre-schools etc.
AFAIK generally DC grow out of it, and it's not life-threatening, but it is horribly scary when an attack happens.
If you look on the website I linked above, you can see presentations by Dr William Whitehouse about RAS (think you can see them if you're not a subscriber), but he's incredibly reassuring about the condition. (DD has a different condition covered by STARS so I've heard him speak at the annual conference a couple of times)
My son had three of these - they were the most terrifying experiences. His stopped at the age of two and took place over a few months. The hospital consultant said that some people have them all of their lives but most stop at around two. He also said it was thought to be hereditary as they would often have fathers and sons who both had it, but nobody else in our family has ever had it.
I've just re-read and saw you wanted triggers. My son's were so minor:
- one was when he was rolled up in a duvet and fell off the bed when he was playing with his cousins - I think he was frightened of being hurt.
- one was where he was running and stopped short of a lamp post - at first everyone thought he'd hit the lamp post because he collapsed, but he clearly hadn't as he had no bruising - it seems as though he was frightened of bumping into it (hard for me to think about this one as I was across the road at the time - he was with my friend - and from where I was it looked as though a car had knocked him over - someone had double parked. Although it was 18 years ago now, my blood freezes when I think of that.)
- one was where he was playing football with some friends of ours, ran up to the ball and then collapsed. I can't see why he would be scared or shocked on that occasion.
Each time it happened, his face froze into a kind of silent scream - it was absolutely terrifying.
Best of luck, OP - I really hope your son's seizures stop soon.
yES, My son has a dazed frozen look to him before he collapses.
DS2 had these until he was about 3. If he ever banged his head or fell over hard, he'd take an intially gasp of breath about to cry, then just stop. We used to blow on his face which seemd to bring him out of it!!
We were terrified as DS1 has epilepsy and were so worried DS2 was going to start with other seizure types.
Both mine have had febrile convulsions too- wonder if there is a link?
fatzak - weirdly enough, our DS1 has epilepsy (non hereditary) and our DS2 had anoxic seizures (again no one else on the family had them). Strange that you've had the same experience as us - very worrying and I am sure, very unusual.
DD had them sometimes when she bumped herself when younger. They aren't nice.
She stopped at about two and a half then had another when she fell off a slide and broke her arm at four and a half.
I worry that she might always do it if she ever really hurts herself. I therefore am that annoying mother wincing, telling her to be careful and slow down as she climbs or runs.
She does the whole tonic clonic thing then is out for hours afterwards, sleeps most of the day. It is still scary to witness despite knowing it can't really cause harm.
If you would like more information about syncope, reflex anoxic seizures or postural tachycardia syndrome (POTS), please get in touch with us via email firstname.lastname@example.org
Our website has comprehensive information on various conditions with associated factsheets and booklets: www.stars.org.uk
My son has had 2 RAS's in past 6 months absolutely terrifying and has also had loads of near misses. He has recently started to have a few what we think are Absence Seizures so have an appointment In couple of weeks, we're not sure if there's 2 seperate things going on or both linked. I found the STARS website really helpful and lots of info I could give to his childminder. Forgot to say, he's 2 yrs 2 months old.
Hi can I please ask Gingerbics from above message if the absence seizures were diagnosed and if they were linked to the reflex anoxic seizures?
I have a 4 and half yr old son who had extreme RAS from just 4 days old had 20+ fits a day. These continued until age 3 and he now rarely has any, but is having suspected absence seizures (to be confirmed by EEG soon).
I just wondered if the 2 were linked somehow or 2 completely separate things.
He also has learning disabilities.
Any similar experiences shared would be much appreciated
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