Playground fall leads to RAS diagnosis

Anne Troman’s worst moment happened just after she’d dropped her eldest child at school. On the way out of the playground with her younger son, Alex, he stumbled and then fell, apparently lifeless to the ground:

“I really thought that I had lost him but after what seemed like a life time but was I think only minutes, he gave a great yawn and started crying for me.” says Anne, from Birmingham.

It wasn’t the first time she had had cause to worry about Alex’s health. He had been having ‘strange episodes’ since he was a few months old. At just seven months old, Anne was told that he was a child that could command her attention by holding his breath. She remembers thinking sceptically that he must be a very intelligent baby to be able to do that!

The frightening episodes continued and the family GP sent Alex for an ECG on his heart and EEG on his brain – a test that can point to epilepsy, but nothing was found.

Their health visitor told them to blow on Alex’s face when he was having an attack but it seemed to make him worse. They noticed he was especially bad when travelling on long journeys and when they were supposedly relaxing on holiday.

Then came the attack in the school playground. They ended up in A & E, where as luck would have it, the registrar on duty had recently had training about a condition known as Reflex Anoxic Seizure, a type of arrhythmia. The registrar asked a number of questions and the family finally knew what was wrong with their son.

The problem was, although Alex was diagnosed with RAS, they were told there was no treatment!

“This left us in a confused and frightened sort of limbo and at first we thought we would have to wrap him in "cotton wool.” We soon found that Alex wasn't a child you could do that to!”

The registrar did put them in touch with the charity STARS, which helps people with RAS and Syncope, and they were able to offer support and information.

Even though Alex does not have medical treatment, the Tromans have learnt to watch out for the signs that an attack may be imminent. They also believe too much sugar can make him more susceptible to ‘near misses’ which share symptoms with full RAS attacks, but Alex does not lose consciousness.

The family consider that Alex’s RAS is milder than some other cases, but attacks are still frightening when they happen and show no sign of abating:

“Towards the end of last year we thought that he may have out grown RAS but serves us right for being complacent; he has had more attacks and near misses already this year than in the last 18 months.” says Anne Troman.

“I think the most difficult thing that we have had to cope with is telling people about the attacks especially as they may not happen. We were concerned that the description of the attack would frighten everyone but also concerned that they should know in order to give the appropriate assistance if he did.”

Nursery and school have been excellent and family and friends supportive. They believe it is something they will live with always and that Alex will have spans where he is not affected and others where the attacks are worse.

”I don't think I will ever get used to watching him in an attack, I will still worry about activities where might have an attack and not be found in case he cannot maintain a clear airway. I will never forget the time when on coming out of an attack he said " Momma, have I died and gone to heaven? I hope not because I love you!"

Alex calls the attacks his "funnies" but to us, they are not funny at all.

Editor’s Notes

1.   Reflex Anoxic Seizure is a type of arrhythmia.

2.   STARS can be contacted on 0800 0286362, or at www.stars.org.uk.

3.   AAAW’s website is www.aaaw.org.uk

4.   Some patients with RAS have been given pacemakers or the drug atropine. However, these are not suitable in all cases.
 

Read about more patients with RAS

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