Sports with RAS

[Footygirl08]

Hi all, hope you can help, my 12 yr old daughter was diagnosed with RAS at 18 months and we've been lucky to not have experienced too many seizures so far, although she did have one quite frightening one where she did visibly stop breathing for a while when she was about 6yrs old. Hers seems to be triggered by the pain stimulus. She now plays football and we're now experiencing quite a few minor episodes where she becomes extremely dizzy - one episode has been after a tough tackle where in her words her ankle went floppy but she has also experienced a dizzy episode whilst training and her coach says she loses all colour in her face, which could be the start of a seizure. Are there any RAS sufferers that play sport can help us out with how to manage her condition with playing sport? Or any suggestions on what you use to aliviate the symptons if and when they start? (Before football she used to do gymnastics 12rs a week without any epiosides). Thanks

[Duvetdaytoday]

My 8 year old son has RAS and is also football and sport mad. Like your daughter he doesn’t have attacks very frequently - maybe 2 or 3 a year usually triggered by pain. He’s played since he was 5 only had a full seizure once playing football (he broke his arm!) but we have plenty of near misses. He’s found the only way to dodge an attack when he feels it coming is to lie down. All of his team and his coach know about his RAS and we always try and let the ref know at the start of a game. If he’s injured and he needs to lie down he will raise his hand and they will carry him off to lie down for a moment. He usually then bounces straight back on within a minute or two. I’ve also heard for some people that squeezing the muscles in your legs can help as it gets the blood circulating back to the heart and head faster. Staying well hydrated is also helpful.

For us ultimately the thing which has made it easier is everyone being aware so that if he does have a near miss he gets help quick enough to avoid a full fit. He has more near misses doing other stuff than playing football, he says he thinks it’s because when he’s playing it’s not a surprise if he gets hurt - he’s mentally prepared for it so it removes the shock factor. I’m always a bit nervous when I watch him play but but we’ve just found ways to manage it and I’m sure your daughter will work out strategies to help her cope. Good luck - it’s tough being an RAS parent isn’t it!

[Footygirl08 in reply to Duvetdaytoday]

Thank you so much for replying, I do feel a bit in the dark about how to help her best as whilst doing gymnastics she never had an episodes, even after splitting the beam! She is also at the age where obviously hormones are changing so wondering how much this is also having an effect as she has had more minor/dizzy episodes recently. She is a tough (stubborn) cookie and battles through whereas I believe if she stopped and came off for 10 mins to recover it would help. Fortunately her coach has recognised that she loses all the colour from her face but think we need to maybe introduce some signal to indicate that she needs to come off as obviously he cannot watch her all the time. She is quite embarrassed about it all and doesn't like a fuss made and I also think she doesn't want to be made to stop playing as she's worried she wont get picked to play. The coach has suggested she has some old fashioned Lucozade when she feels dizzy so we might try this too. Feel so useless as the coach (and her) are looking at me for answers and I cant give them. Thank you again for sharing your experience and tips, I will pass on the leg rub ideas to the coach and will also speak to the coach about speaking to the team, she will hate that but feel it has to be done.

[Duvetdaytoday in reply to Footygirl08]

Totally appreciate she must find it all a bit embarrassing. My son never used to tell anyone but he’s has a few seizures at school now which people have witnessed so he’s become far more open about it. I agree that it’s tough when people are asking you for the answers and you feel just as confused about it! Our experience has been that his team have been really kind and positive about it. I don’t think he gets picked to play matches any less because of it so hopefully your daughter will find the same.