Reflex anoxic seizures

[Cheaney]

Anyone have a son, daughter are relative that suffers from RAS, would be nice to hear your experiences

[Kellyw83]

Hello I have a 4 year old daughter who has RAS. Here is our story- it all first started when she was 6 months old, she would cry then hold her breathe for ages. This continued and got worse turning into seizures by age one. From this age until 3 years old she would cry, completely collapse (had to hold her or in recovery position), eyes rolled upwards, turn blue and stop breathe ( her heart literally stopped) , shake and jerk her arms with feet turn inwards and arch her back rigid then she would Take an almighty breathe then come round crying and disoriented. We then got referred to hospital at age 1 and since then up until October last year she has had many tests including EEG's (electrodes glued to head) MRI's, scans etc over the years where some were on for days. Many ECG's etc. we have always been told that she will just grow out of it and it's scary but not to worry. We weren't convinced as the older she was getting the more severe the seizures were, they were still happening at least once a day some days a few times each day . In November we met with a Cardiologist and she decided to admit her to have what's called a Reveal Device fitted (google it). That then monitored her heart and we had a button which we had to press each time she had a seizure so it would record it all. After only being in her for a month we were called to see the cardiologist a few days after Christmas. The findings were worrying, it was showing that her seizures were worse and each time her heart was stopping for up to 13 seconds so if she was having a few seizures a day at this rate it could be damaging to her heart and brain i.e.- brain damage over time. We then all agreed that the best thing would be to have a Pacemaker fitted so each time the heart would beat to low or stop then the pacemaker would kind of "jump start" it back. She had this operation in April this year and is doing amazing- Not had one full seizure!!!!!!! We are so glad we stuck to our guns insisting that it was more than just a little thing she would grow out of as we were told by the neurologists. Hope this helps xxxxxxx

[OliviaB in reply to Kellyw83]

Hi Kelly it was nice to here some good news at the end of your story, but it must been very frightening for yous watching ur daughter take that many seizures, i have a 2 year old daughter who has RAS since 1 she had about 10 seizures some lasting 25 mins some 5 or 6 mins, had heart machine on 24 hrs said came back fast heart rate be nothing to worry about but they didn't get a seizure, she had EEG nothing showed ether, all I get she grow out of it peak age is 6 months to 2 but reading these messages I see that they can go on to any age, hers is brought on by a fall and a cry like holding breath at start and eyes roll back, face sheet white lips blue and arms and legs jurk so scary iv had to catch it on video to show doctors how bad it was at times, I'm worried about sending her to Playschool now has your wee girl started nursery or Playschool they call it here?

Olivia

[Panda2806]

Hiya I am new on here after being directed by STARS. I hope all your little ones are ok and your coping as parents. It’s incredibly scary and no one could understand unless they have experienced it. My 8 yo daughter has RAS triggered by extreme anxiety and weekend before last she had the full blown one where her heart stopped! I was terrified and honestly thought I had lost her! She has been having seizures but none that severe. With hindsight we believe it has been happening since she was about 4 but few and far between until the last 6 months. She has also just started Cognitive Behavioural Therapy which we are hoping gives her (and us) coping mechanisms. I would love to hear more about your little ones - what are there triggers etc? Take care

[Indiarose]

Hello,

My baby girl is newly diagnosed with RAS,at my wits end worrying about her condition.

I’m up till 3 am watching her sleep just in case. She seems tomcryiher sleep now which is relatively new, can anyone shed any light on this condition.

Much appreciated

Joanne