STARS Patient Information
Our family had never heard of Reflex Anoxic Seizures until our youngest daughter was diagnosed. Hopefully our story will help lessen the anxiety of other families who find themselves in a similar position. Heidi had never shown any signs of the condition until she was 2 years old. One morning, just after her birthday, we were getting ready for work, rushing as usual, when Heidi fell and bumped her head. She walked to me afterwards, but then went limp in my arms with her eyes rolling and arms jerking, deathly white with a blue tinge to her lips. Panic set in and an ambulance (the first of many!) was called.
After a couple of hours at A+E with Heidi running around as if nothing had happened, we were sent home with a head injury advice leaflet and told to keep an eye on her.
This was later to be classed as Heidi’s first Reflex Anoxic Seizure. It was April before Heidi was to have another ‘episode’. This time, we had got up early to go to the Lake District to visit family. When we arrived, Heidi was very excited and running/laughing with her sister to meet the relatives. All of a sudden Heidi slowed and stopped, holding my legs as though to be picked up. As I lifted her, she went limp, back arched and jerking limbs. This time Heidi’s lips were definitely blue and she was dribbling and ‘moaning’ as her eyes rolled. We placed Heidi on the floor and she seemed to come out of it, only briefly before she set off jerking and unconscious again. At this point an ambulance was called again and she was taken to the local medical centre to be checked by a doctor.
The doctor could find no clear explanation for the episode; her heart rate was fine as was her sugar levels and blood pressure. All he could suggest was a possible breath holding episode, but advised us to go to our GP to get their opinion.
We followed his advice and got the earliest possible appointment. Again, opinion was it was a breath holding incident and we were reassured not to worry, but as parents, we were not convinced. Another month past and we had started to forget about it, then one morning, Heidi was helping take the bin out, she tripped and fell, banging her hand. Again Heidi was pale, limp, jerking and rolling her eyes. Each time these episodes only lasted seconds with the longest lasting up to 1 minute, but as a parent watching it felt like a lot longer. We didn’t dial 999 this time, (by now we were starting to work out what to do), but took Heidi back to the GP that morning. She agreed that more investigations should be done and got us an appointment with a paediatric consultant in around 6 weeks’ time. We both felt relieved at this point that something was being done and we would have an explanation soon, but that explanation was a long time coming!!
Before we made it to the appointment, Heidi had another ‘episode’ this time when running in the garden. By this point we were too concerned to wait until the arranged appointment and insisted someone saw her immediately. We were seen at the Children’s Assessment Unit at the hospital and Heidi underwent a full check, all the previous episodes were explained and discussed at length and Heidi had blood tests and an ECG done before we came home with an appointment for an EEG arranged for the following week. At last we felt something was being done!
At this point I should say that these episodes did not really cause Heidi much distress, once she had recovered (this took 10-15 minutes), she was always back to running around laughing and enjoying herself again, leaving Mum and Dad to worry!
Heidi went to her EEG appointment and they got as many readings as possible, but said it would take 6 weeks minimum to have any results.
It was June 2011 when we saw the consultant and for the first time we felt that someone was listening to us, she reassured us that Heidi did not have epilepsy and that when she was not having an episode, her heart function was normal. The next step was to discuss Heidi with a paediatric cardiologist and try to ‘catch’ an episode on a heart monitor that Heidi would need to wear 24 hours a day for at least a week! Heidi was still 2! This was going to be tricky!
The heart monitor proved to be the worst part of our experience so far. It was a warm summer and Heidi had the monitor fitted with 3 stickers applied to her chest, with micropore tape over the top so they didn’t come off. The monitor was designed for an adult and so the wires were incredibly long and the nurse tried to give us a strap to go round Heidi’s neck so she could carry it round with her!! I pointed out that she was 2 and that was a choking hazard, so we were left to come up with our own way of attaching it to Heidi.
Inevitably, the probes came loose at times and the stickers needed replacing. Her skin reacted with the stickers and she blistered badly, and had horrendous rashes. The distress this caused to Heidi was heart-breaking. She was hysterical as soon as she saw the envelope containing new stickers and developed a phobia of plasters/ reward stickers and even the sound of ripping as a result. It was a long, upsetting week, and to make things worse, Heidi didn’t have a single episode while wearing the monitor. Things continued like this over the summer while we awaited the results of all the tests. Heidi continued to be a normal 2 yr old, and every now and then she would pass out and then carry on as usual. But, we still had no diagnosis and, we needed an explanation.
At this point, all the episodes had happened when Heidi was with family, in the October, she had a run of them while at nursery (another trip in an ambulance) and the latest episodes were as she was sleeping/ waking from sleep. Concerned by the increase in episodes and the change in the nature of them, we contacted our consultant. We had to be quite forceful at this point as she was happy to continue monitoring Heidi herself, but we pushed for the cardiologist to see her, and also for Heidi to have open access to the Children’s Assessment Unit at the hospital to avoid her having to sit in the A+E department every time she had a longer episode.
Eventually we did see the cardiologist, who dismissed us as panicking but did an ultrasound of Heidi’s heart, which thankfully showed no problems. However, just as we were feeling relieved, he dropped the bombshell that Heidi’s ‘episodes were caused by the vagus nerve making her heart stop!! I felt sick at this point, I looked at my husband and he was as stunned as me at the blunt way in which it had been revealed, the cardiologist continued to speak, but I couldn’t take it in, this sounded so serious. Then Reflex Anoxic Seizures were mentioned for the first time, and he proceeded to print off a sheet from Wikipedia for us to take home and read and arranged for yet another heart monitor to be fitted as he wanted to ‘catch’ an episode so it could be confirmed.
That night I came home and googled RAS. I found STARS and emailed them with my concerns and asking for help and reassurance. The information and support I received was amazing. Immediately we felt that this wasn’t a big deal, and Heidi was going to be absolutely fine. STARS sent information for her nursery and also a book to help us explain the condition to our eldest daughter, Freya, so that she knew it was ok if Heidi passed out, that she would be fine. We also asked their advice on alternative monitors, more suited to children and were advised to request a ‘king of hearts’ monitor as they were a smaller model. We contacted the hospital and were told only one type of monitor available. At this point I offered to take Heidi to the children’s Hospital in Liverpool, but we were told the equipment over there would be no different, the only other option would be an implant to try to catch episodes over a period of 18 months- not something we wanted to consider.
Heidi had the monitor fitted again, but she was so distressed by the whole thing that we could not keep it on for a week, she was petrified of it and we didn’t want to put her through anymore. We continued, with Heidi running around as normal getting up to mischief, and we kept a note of any episodes. Nursery created a care plan and we went to appointments to update the consultant when needed.
Heidi was discharged in July 2012 and her episodes are becoming less frequent (her last one was in December 2012), We are able to recognise triggers for Heidi, pain, excitement and being upset have all been known to trigger an episode and we know to just watch her a little more closely. This September Heidi will start school, and although her episodes are becoming less frequent, a care plan is being drawn up and staff are being trained to deal with it, just in case. We know that there is a chance that RAS episodes could become more frequent for Heidi again, but more importantly, we know that although the condition sounds scary, there is no reason for Heidi not to live a perfectly normal life!