Chelsea’s Story

When I was little I was diagnosed with epilepsy and lots of things would trigger a fit, like being sick. I had lots of medicines to try and control the fits but nothing worked.

I started with attacks when I was a toddler and it wasn’t until I was twelve and became very ill that finally mum became impatient with the hospital and asked for me to be referred to a specialist.  We visited a consultant in Sheffield and he told us it was Reflex Anoxic Seizures.

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Dominic’s Story
 

Dominic was 8 months when he started having what we thought were ‘funny turns’. He would cry and seem to not breathe for 5 or so seconds, and his lips would turn blue.  In those early days he always started crying again soon so I wasn’t too concerned.

But not long after his first birthday he bumped his arm while playing and started crying. This time, after about 10 seconds of vigorously thrashing his arms around and making a clicking sound from his throat, he went a grey colour. His lips were blue, his arms and legs went rigid and his hands and feet turned inwards. Then he went limp in my arms. His eyes stayed open but rolled to the back of his head. I was petrified and kept calling his name until he regained consciousness a few seconds later.

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Joel’s Story

As a mum, I remember vividly those dark days when Joel would have had multiple RAS attacks per day, especially when he was toddling, or go a week without one and I would feel elated only to be brought down to earth again when another attack occurred. Naturally I wanted to wrap him in cotton wool and protect him from any incident likely to lead to an RAS. I remember wondering if Joel could have the normal life other little boys have.

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Eliza’s Story
 

Eliza is now a healthy 6 year-old – thanks to her pacemaker.

When Eliza was a baby, she would 'go off' – looking grey, slightly stiff and yelping for breath. As a tiny baby she had also slept for long periods (without waking to feed) although this was never linked directly to her later diagnosis.

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Louise’s Story

Louise had her first real episode on Easter Sunday 2005 while visiting her grandparents. She was 8 months old. Louise was sitting in her highchair when Granny looked over and said "oh Fiona, I think she's taking a turn". I immediately lifted her out and by the time I had gone through to my husband Colin, she had finished her seizure. We took her to hospital but Louise was tired but absolutely fine. The doctors did a series of tests including bloods and urine analysis but found nothing. They released her later that day with a possible diagnosis of febrile convulsions. Leading up to her first seizure, we had noticed that Louise had some moments when she looked dazed and would become "floppy"' for a few minutes. We now think those incidents were "near misses". Louise's seizures soon returned and we were referred to a neurologist at our local hospital who recommended that we tape any further episodes on our camcorder.
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Immanuel's Story

This is a positive RAS story as my 3 year old has pretty much grown out of his seizures. But here's the background. One night my daughter ran to me to say that Manny wasn't well. In fact he was slumped blue and unconscious on the floor – crumpled up over the bar of a chair. He was 11 months old and at that crawling/trying to walk stage and I still don't know exactly what triggered that terrible attack. We went to hospital in an ambulance and by the time we got there Manny was getting back to normal. The staff were great - if confused. Chest x-rays and epilepsy tests showed nothing was wrong. Then we saw a heart specialist who diagnosed RAS. He said the reason he knew about RAS was because quite a few children had been referred to him with possible heart problems. Read more.

Wesley's Story

Before Wesley was diagnosed as having RAS neither of us had heard of this condition / cause of seizures. The first seizure occurred when Wes was caught in the face by a neck chain swung around by our daughter (Jasmine – then aged 4). Wesley became distressed, but then was also not able to breathe. His whole body stiffened, contorted and shook, his eyes rolled up and his face turned grey and looked ‘horror struck'. He then passed out and started breathing again before regaining consciousness a few moments later. He was then really miserable and obviously felt unwell. The incident was very scary - at one point in the process I (Tim) thought he might die. Afterwards we made sense of the fit as an episode of ‘breath holding', which had happened to Jasmine (our daughter) a couple of times and which Eleanore had been told (in a very critical sense) that she had done as a child. ...Read More

Shelley's Story

Drama teacher Shelley has suffered from Reflex Anoxic Seizures for 25 years – but she was only correctly diagnosed three years ago. She had her first seizure when she was just two years old. Many children with the illness happily grow out of it before they leave childhood, but for some like Shelley, it is a debilitating condition that she has had to learn to live with. Her seizures have even occurred while on a plane en route to Australia - a humiliating experience in front of a planeload of strangers. It wasn’t until she had a particularly bad attack at the doctor’s surgery after some travel inoculations, that she was finally referred to a specialist. The specialist suspected Shelley was suffering from Vasovagal Syncope, another name for RAS. A tilt-table test was carried out, where the patient is strapped to a bed, which is then tilted to test the effect on the heart. She was stunned to discover her heart had been stopping during the syncopal attacks - and believes she has had near-death experiences while her heart has not been beating.. Read more..

Sarah's Story

Teenager Sarah has lived with a heart arrhythmia almost all her life. She suffers from Reflex anoxic Seizure, a condition where any sudden shock or pain can cause her heart and breathing to stop in a kind of mini-cardiac arrest. The sufferer also has seizure like symptoms during an attack, and they fall unconscious. Sarah’s first attack happened when she was just two years old, after a fall at nursery school. It was put down to shock, but then a few weeks later, she suffered another episode after she sat down onto a submerged toy in the bathtub. Their GP diagnosed Reflex Anoxic Seizure, but it was only the beginning of their problems.. Read more.

Joel's Story

Joel was 5 months old when he had his first seizure. It occurred in a relatively normal situation. I had lifted him out of the bath and, on placing him on the bed, he went rigid for a few seconds, then went floppy. It was a huge shock to me, but I now realise that this was caused by the apparent shock of Joel coming out of a warm bath into the cooler air. Despite my original fears, I thought that as he looked and he recovered well, I would wait and see if there were any other signs of illness or any reoccurrence before raising alarms about Joel’s health. The next RAS occurred a few weeks after the first one-on Christmas Eve. Read more..

Alex's Story

Anne'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. 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. The attacks continued. After one 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.. Read more..

Julie’s Story

From an early age I was prone to fainting. Assemblies and nativity plays would be the worst for me. I was always tired and lacked concentration. My mother was called into school to discuss this issue. The school felt it wasn’t normal for a child of 8 to have such a lack of energy. I was spending a large part of the day, “daydreaming”, as it was called, and they felt I should see a doctor. I was taken to see the local GP, who thought he could hear an extra heart beat. I was sent for blood tests and a chest x-ray. All proved negative. It was decided it was down to my age and I would grow out of it.
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Tabatha's Story

Amanda, who lives in Weymouth, Dorset, was already coping with her son Elliott, who had been diagnosed with a heart rhythm disorder, SVT. Then her only daughter, Tabatha, came along. Amanda was overjoyed to have a daughter after four sons, but at she knew something wasn’t right with her little girl.
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Fiona's Story

Fiona was diagnosed very early on, but we were given no information apart from the fact that although the attacks look and sounded unpleasant they were not life-threatening. We were on our own until I was leafing through a woman's magazine and saw an article about Francesca Lobban. I've been in contact with Trudie, who runs STARS ever since and have been to a couple of STARS conferences. Fiona now has the additional handicap of being diagnosed with ADHD which may or may not be connected to RAS, nobody knows. I have spoken at one of the conferences about life with an ADHD teenager and the problems it brought to the family. Luckily for us, most of the trauma of the past 5 years is behind us now as Fiona is managing ADHD and RAS without any medication. It is really down to all of us as a unit supporting her through the bad times that has finally got her through.

Benjamin's Story

As a special needs teacher, Suzanne is accustomed to dealing with a range of distressing medical conditions but when her own son began having seizures at just 8 weeks old, she was totally devastated. Nothing, she realised can prepare you when it is your own child you are dealing with. Suzanne has been frightened by the sheer number of attacks her son, Benjamin, has suffered. After several attacks in a few days, they were sent to the hospital for ECG heart and EEG brain tests. But it wasn’t until ten months later that they saw a doctor who was an expert in Benjamin’s symptoms. He diagnosed Benjamin as suffering from Reflex Anoxic Seizure, a type of arrhythmia. Read more..

Nicola's Story

My name is Nicola and I am 17 years old. I was diagnosed with RAS when I was two and it has been part of my life ever since. I can't really remember what it was like when I was younger to live with RAS because I was too young to understand, but often my Mum tells me how hard it was for both her and my Gran, who lives next door, anytime I took a seizure my Mum couldn't watch, as it was so hard for her to watch me go through this in front of her and she knew there was nothing she could do but wait for me to breath again. When I started school I was still taking seizures, but when I turned seven it was as if the seizures had "disappeared" I didn't have any for 2 years and then one day when I was in primary 6 I was at gym and was running backwards, I tripped over, and took a seizure. I was so upset because it was then I realised how embarrassing it was for me to take a seizure in front of all my school friends "How would they understand?". After that they came back with vengeance I was taking seizures and was also becoming incontinent, during them which was even more embarrassing. My Mum then heard from a doctor who was doing pacemaker research at the time, she asked my Mum if she would let me be fitted with a pacemaker as part of the research. I then had a tilt test, which I took a seizure on, and my heart stopped for 35 seconds. Read more.

Josephine’s Story

My daughter, Josephine is diagnosed as suffering from RAS. Her first seizure occurred when she was 9 months old during her bath time. Although I was right next to her, she somehow managed to pull herself up to a standing position whilst she was in the bath. I was supporting her but she slipped and banged her chin on the side of the bath. I immediately picked her up and cuddled her. It was then I noticed she had gone rigid, her eyes had rolled up into her head and she had gone a strange blue colour. I thought she was dying. Extremely panic stricken, I started to give her resuscitation whilst at the same time screaming to my mother downstairs to call an ambulance. This lifeless state seemed to last an eternity, but in reality it was probably less than a minute. She suddenly let out a deep breath and started to scream.. Read more

Mari & Lowri’s fight for Referral

We first became concerned about our identical twin daughters, Mari and Lowri, when they started being mobile at around 18 months old. While toddling around like any ‘normal’ child they would frequently fall over and bang themselves – but in their case, this would usually result in a short period of unconsciousness.

When I reported this to the GP, I was told that it was probably breath-holding attacks for attention-seeking. But as the girls were already being monitored for a previous medical condition by the paediatric department at the local hospital, we just asked for our follow- up appointment to be brought forward. The usual tests for epilepsy – EEG etc – were carried out, but luckily were seen by a sympathetic doctor who said it was something to do with the heart and that these episodes would pass when the girls were more secure on their feet.

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