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A very inspirational mom shares with me how it is living with Reflex Anoxic Seizures also known as RAS. I have to say this is not something I have heard of and I admit the thought of watching a child have a seizure must be terryfting.
Living With Reflex Anoxic Seizures
My son Matthew has a medical condition called Reflex Anoxic Seizures (RAS). He has had blackouts and seizures since he was around 9 months old and first got diagnosed properly at around 2 and a half, he’s 3 now.
This condition is not life threatening but can be scary to witness. Unexpected stimuli such as sudden pain, shock or an extreme change in temperature, causes Matthew to black out and collapse, his heart and breathing to stop, his eyes to roll up into the head, his complexion to become deathly pale, often blue around the mouth and under the eyes, his jaw to clench and his body stiffen.
Sometimes his legs and arms jerk. After 30 seconds or so, the body relaxes the heart and breathing resume and he is unconscious. One or two minutes later Matthew should regain consciousness. Upon recovery, Matthew may be very emotional and extremely tired. He may need to sleep following an episode for up to 3 hours especially after particularly bad attacks but generally he bounces back up happy as larry as if nothing happened.
The episodes appear to occur in batches so on a bad week he has had up to 12 in a day and will have several bad days continually after each other, and then it can disappear for weeks, months at a time and then spring back on you.
However the body will always recover, it’s not life threatening at all, its just petrifying to watch,. Sometimes he can pull himself back from an attack before he fully passes out too; these are referred to as near misses. The condition affects us both in many ways, I struggle to allow him to run off and play as other 3 year olds for fear that he will bump himself and have an attack.
I do try very hard to let him be “normal” but it’s a struggle and I AM constantly on edge every second of every single day. My main worry is he will have an attack because of a night terror (very common in RAS sufferers but not proved to be connected) and possibly suffocate himself.
A wonderful charity offered me an anti-suffocation pillow which has helped me a lot; I sleep a bit better at night now which makes me so much more relaxed as a person and a parent. I also struggle to allow him to stay with other people without me being there in case they don’t know what to do.
For Matthew it doesn’t affect him too much thank goodness, the only worry I have right now with him is that he cannot control himself, sometimes during particularly bad attacks (especially when he has a seizure) and he wets himself. I hope this won’t dent his confidence when he gets older and I really hope his school and friends are as good as the nursery and friends he has right now.
I have a good support network from my wonderful parents who I owe a lot to and they do live close by, however doctors I have found pretty much useless so far. My health visitor has continually told me to ignore him and stop being soft and that he was attention seeking and breath holding. I knew they were wrong and it was far worse but they refused to listen and put me in quite a dark scared place for a while.
My doctor refused to listen and told me the same and offered me anti-depressants instead (no idea how that helps my son) I struggled with any local doctors and hospital until I met one wonderful doctor, he’s still pretty useless for advice but he made the official diagnosis of RAS.
Finally knowing what was wrong with my son made life a lot easier, Matthew is under a consultant at the hospital now and I suppose he could be worse. The problem with RAS is the attacks don’t last very long, and recovery is very quick too, so by the time you ring 999 and the ambulance gets there usually he’s fully recovered and running round happy as nothing happened.
Most doctors have never actually witnessed an attack; they can’t really be monitored on heart monitors either for the same reason.
Surprisingly RAS is fairly common, most sufferers and parents of sufferers seem to hit the same struggles as I did finding a diagnosis and help and support, it can feel really lonely sometimes but to those in the early stages I can promise it does get easier. You learn to keep calm and just deal with it, it just becomes a part of life and a part of who your child is.
I think you will always worry but it is not life threatening and you just need to keep telling yourself that and you will get by, there are fantastic groups on Facebook for RAS sufferers and a wonderful organisation called Stars (www.stars.org.uk) who will speak to you on the phone if your ever worried or just need some1 to chat to and can also send out information packs for schools and fill you in on everything you need to know.
I think I am a stronger person now and I can’t tell you how proud I am of my son, he deals with every attack like it’s nothing, he’s so happy and bouncy and we call him stunt boy, so you can only imagine the things he gets up to. For a child with RAS you would never believe how brave he is.
