STARS Issue 21, September 2004 by www.heartrhythmalliance.org

WORKING TOGETHER WITH INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS TO OFFER SUPPORT AND INFORMATION IN SYNCOPES AND REFLEX ANOXIC SEIZURES

! "#"! REFLEX ANOXIC SEIZURES are a type of arrhythmia (heart rhythm disorder) occurring mainly in young children but can occur at any age. The sudden shock of pain, however slight, or indeed any unexpected stimuli, causes the heart and breathing to stop, the eyes to roll up into the head, the complexion to become deathly white, the jaw to clench and the body to stiffen often with legs and arms jerking. After 30 seconds or so the body relaxes and the heart and breathing restart. The sufferer may remain unconscious for one or two minutes or for well over an hour. RAS is often misdiagnosed as breath-holding or more seriously as epilepsy.

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+ SYNCOPE (pron: sin-co-pee), also known as Transient Loss of Consciousness (T-LOC) or blackouts, is a result of the temporary cutting off of the supply of oxygenated blood to the brain. The mechanism of the syncope in susceptible individuals includes reflex cardiac standstill (always reversible) commonly following a surprising bump to the head or elsewhere. Recurrent syncope is perhaps one of the most challenging and, at the same time, most frustrating problems that is encountered in clinical practice.

STARS

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Freephone

0800 0286362

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www.stars.org.uk

trudie@stars.org.uk

PO Box 175, Stratford Upon Avon, Warwickshire, CV37 8YD

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Trudie & STARS members at the A-A conference in July

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RAS is Normal to Us Now !

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It took 2½ years for us to get a diagnosis for our daughter Ellie, as nobody seemed to have heard of RAS, and it was only thanks to STARS that we managed to get a diagnosis at all. At nearly 5 years old, she still has a lot of near misses, and her attacks are still very much a part of our lives. Ellie has asthma too, and seems to catch every bug going, but she is competent at taking her medication, and she doesn’t let her condition stop her smiling. I now have to be convinced that Ellie needs tests before I let doctors do them. I am happy to say that Ellie has recently started school and is loving every minute of it. I was very worried about leaving her for a full day at first, but the school were very reassuring and are always there to listen to any concerns I might have. Her teacher is very understanding and actually follows Ellie’s lead; as I explained - nobody knows how Ellie is feeling better than Ellie. We have had a few incidents at school where Ellie has displayed symptoms, but thanks to dedicated teachers who have read all the information provided by STARS, most of these have gone by without a major incident. I attended her first parents evening recently and was pleased to hear that Ellie is very bright and keen to learn, and I am very proud of my little girl. My older children, Daniel and Rebecca are fantastic with her and they know how to cope with her illness as well as the rest of the family. They educate anybody who is willing to listen, about RAS, and are very quick to spot potential hazards to Ellie. They don’t mind when she has them up in the night with night terrors, and that occasionally we can’t do something because Ellie isn’t well. Ellie had an attack in the swimming pool the first time I took her, but recently we tried her again. Daniel and Rebecca spent the weeks leading up to it explaining to Ellie about swimming. We went to the local pool where they have toys galore in the pool. After a while Ellie relaxed and Daniel and Rebecca did very well at keeping her away from splashing children. I am very proud of them and how they have adapted to RAS. When Ellie was first diagnosed I didn’t think our lives would ever be normal again. But I am pleased to say it is. We have had to become aware of things that we wouldn’t have normally thought about, but I have been able to return to work, and actually leave Ellie with a childminder without worry. RAS is so “normal” to us now, I am guilty of forgetting how horrific it can be for someone to witness an attack. But I don’t hide my child away anymore to avoid the questions and the stares. Once again I would like to thank STARS and its work, without it I would still be fighting for a diagnosis for my daughter. Yvonne Waite

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Pacemaker ends life of RAS seizures for Emily I would like to tell you about my daughter, Her name is Emily; she is two years old and has RAS. It all started in November 2001 when Emily was 11 months old, she had two blackouts in the space of an hour. After a long line of telephone calls and doctors visits I took Emily to our local hospital where she was seen by the on-call paediatrician who thought it was just breath holding and nothing to worry about. Over the next few months, Emily continued to have seizures and we dealt with them as best we could. Then on the day that she was due to have her MMR vaccination as I was walking into the room I mentioned to my Health Visitor (Carole, who has been fantastic) that Emily would probably pass out but she would be ok. As a result of this conversation Emily was referred to see a specialist at the Hospital. In February 2002 before the appointment date, Emily had a particularly bad seizure and ended up having a two-day stay in hospital. While there, we met with the specialist and she suggested that in her opinion the likely cause was a condition called Reflex Anoxic Seizure, but to be sure she would send Emily for some other tests (ECG. an EEG and Blood Tests). After the tests were done the months rolled on & the seizures continued. I got more and more frustrated. Eventually after several disagreements about its necessity, in July 2002, a 24-hour monitor was put on Emily and I was told just to let her have a seizure so they could see what was happening. My instinct was always to try and stop or shorten the seizure; I am now glad I didn’t stop her. The

tape was taken in to be looked at; on the last Sunday in July two days later on Tuesday Emily was admitted to Alder Hey Children’s Hospital. We where told that on the following day she would be having a Pacemaker fitted as the 24-hour tape had recorded her heart stopping twice (once for 23 seconds and 20 seconds). As you can imagine we were both in shock. We knew a pacemaker was a possibility for this condition but we did not expect to be facing the situation ourselves. The following day Emily’s consultant came to us with the suggestion of putting Emily on Atropine, which would increase her heart rate and hopefully reduce the risk of seizures. We took her home the following day. For the months that followed Emily had very few seizures and we felt that the Atropine had made a significant difference. Unfortunately, by December, Emily had a couple of seizures and we knew the dose of Atropine could not be increased anymore as her weight had not increased enough, so the next step would be a pacemaker. At the beginning of January Emily had her pacemaker fitted; she spent just one night in Hospital and was well enough to come home the very next day. Since her pacemaker was fitted over a year ago Emily has not had a single attack and is leading a full life as a healthy active three year old. She goes to a nursery during my working hours and other than the fact she has a very small scar on the left side of her chest you would not know the trauma that Emily her brother Ian, her father and myself have been through. Mrs Finn, Cheshire

The DVLA’s guidelines for driving for a person suffering from seizures, is that a person must have been free from seizures for one year. However, it classes RAS as a ‘provoked seizure’ and its website says these cases can be dealt with on an individual basis by DVLA. It says: reflex anoxic seizures can be treated as provoked: “In the absence of any previous seizure history or previous cerebral pathology.”

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“Found your phone number in a directory of alternative therapists, rang today and spoke to a very helpful man, who is going to send me some leaflets (my 13 year old daughter faints 1-3 times a day). I have had a look at your website; great to know there is advice and support out there - certainly not getting much from GP!”

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I am writing to say how much I enjoyed the visit to the House of Commons and to thank you and your team for organising it. It is impossible to describe how much it meant to me to be around "my own kind" as my boyfriend describes it! I was diagnosed with Vaso-Vagal Syncope when I was 23. At the time, the diagnosis was a tremendous relief as I felt that having RAS was really affecting my quality of life, making me feel disconnected and depressed. As a child and into my late teens I was terribly anxious and experienced severe night terrors which other people found difficult to understand. I now know this is a common symptom. My RAS attacks really "took off" when I went off to University, occurring often at half term when I was supposed to catching up with coursework but of course then feeling so sick this was an impossibility. My mother and myself were visiting doctors after nearly every seizure but they could not find a diagnosis. Things came to a head when I had about five in a short period of time - the most memorable being one in the aisle of a plane. The turning point was a particularly horrendous seizure after a travel injection. When I came round I thought I’d had a stroke as I couldn' t speak or move properly for about two hours. Luckily my doctor witnessed the attack and referred me to Professor Kenny at Newcastle Royal Infirmary. I then had the famous tilt table test and was told I needed a pacemaker - which has dramatically changed my life. I now don' t have RAS attacks - only the first symptoms, and I recover quickly. The visit to the House of Commons was a fascinating experience and I would like to say thank you to all the people who told me about how they cope with VVS. I now know that I am lucky to have a treatment that has worked so well for me - it did not occur to me that not everyone can have a pacemaker and it is dependant on the way your body reacts on the tilt table. Talking to different parents also made me realise I had not fully understood the worry and dread my own family must have lived with after every seizure. I now realise what an excellent job they all did - sending me packed off with glucose tablets and carton drinks, but never once ever making me feel restricted. Thank you to all the people I met, for widening my narrow perception of VVS - the whole day really opened my eyes. Thank you STARS for giving us a lifeline and the chance to talk to people who really understand. Shelley Wilson.