STARS Patient Information
Holly’s story of her daughter Georgie-May
In the early part of November 2011, our eleventh- month-old daughter Georgie-May was having a terrible time teething. A normally happy baby girl, she had become a little grouchy, understandably, new teeth can be painful!
One morning, enjoying some mummy-daughter time whilst Archie, our three year old son was at nursery, Georgie cried out suddenly, as if in pain. I picked her up, thinking that it must be her teeth, and she immediately went limp in my arms and appeared to stop breathing for a few seconds. It was over almost as soon as it started, but it was still enough to send me storming off in the car with her to our GP.
Our GP checked Georgie over, who by this time was babbling and giggling away as if nothing was ever wrong. It was decided that any number of things could have caused it, but was likely to be a very mild form breath holding. I went home reassured, especially as Georgie seemed to have no ill after effects.
Just over four weeks later we had forgotten all about her little "moment". It was Christmas morning, and we were expecting all the family for lunch. Georgie, who by this time was learning that mummy wasn't able to hold on to her all the time, was put down to play with her brother in the living room. Literally seconds later, following a short scream of temper, she was limp and floppy; lips blue; eyes rolled back in their sockets; white faced and not breathing. To us it looked like she was dead. We immediately rang 999, who stayed on the line with us until the paramedics came. It was the longest couple of minutes of our lives. She began to breathe again within about 30 seconds, but did not come back to full consciousness until we were in the ambulance ready to leave.
Once at the hospital, Georgie was very upset, hungry and tired, but otherwise absolutely fine. The paediatric doctor was very thorough, but didn't know the cause. He advised it was "one of those things babies do" or "febrile convulsion", although we were fairly certain it couldn't be the latter because her temperature was normal, and she had not been unwell. He recommended that if it happened again to try to catch it on tape.
Needless to say, we were grateful to be home in time to dish up the roast potatoes, and glad that such a frightening experience was over.
Boxing Day afternoon brought with it a milder version of what had happened on Christmas Day. This time, by the time the paramedics had arrived she was fine, and it was agreed that a trip to the hospital on Boxing Day would be unnecessary, but to keep an eye, and call again if needs be.
By New Year’s Day, we were beginning to relax a bit, she had been fine since Boxing Day, perhaps it had passed, after all anyone could see she was a healthy happy child.
Alas, after a lovely afternoon at our grandparents, we returned home with very tired children, almost the moment we were through the door, something upset Georgie, and boom it happened again: Limp; floppy; blue lips and not breathing. I grabbed my phone and began to tape the episode, trying to stay focused as I knew that this may be the only way of getting to the source of the problem. But this episode was worse than any of them had been so far. She seemed to stop breathing for an age (when we later looked back at the tape it was about 60 seconds) and when she did begin to take a few shallow breaths they were rattled and laboured. Then she began to fit; jerky arms and legs, stiff jaw; it was so frightening. When she had stopped fitting, her breathing was still very shallow, and when the paramedics arrived they took over and gave her oxygen. I'll never forget the looks the paramedics gave each other when they saw her lying on the floor, it was horrible.
They kept Georgie in hospital for three nights. Georgie had ECGs, EEGs, MRI, CAT scan, and blood tests. It was here our real frustrations started. Each morning the consultants and their team would gather at the end of Georgie's bed, ask me if she had had any more fits and then discuss her case. They never asked for feedback from me, never questioned the conditions leading up to one of her attacks, and when they watched the video of her attack on New Year’s day, they just said it wasn't caused by breath holding or febrile convulsion.
All the tests came back normal. When we were eventually discharged, there was no official diagnosis given, just that they were fairly certain they had ruled out epilepsy. We were advised to bring her back to clinic, and only call an ambulance if her fits lasted longer than 3 minutes. They explained that children sometimes had fits for no reason and not to panic. We weren't really happy with this but just wanted to get Georgie home.
That night, I decided to do some research. I typed a simple description of her symptoms into google, and the first match was the reflex anoxic seizures (RAS) page on the STARS website. I cried with the relief, and actually slept that night!
The next morning I was woken by a call from the hospital. They wanted me to come in and collect some epileptic anti-seizure medication for Georgie. I immediately flew into a panic: I thought we had established it wasn't epilepsy?! No, I was to come in and speak to the consultant.
It was with shaking fingers I made my first call to STARS. Jenni from STARS listened to my panicked babble, and told me what to do. I was advised to ask that if Georgie hadn't presented with any firm evidence of epilepsy then why was I to give her this medication?
When I got to the ward, I was met by one of the junior consultants, who handed me a prescription for Epilim. He instructed me to administer one small dose a day for two weeks, gradually increasing it over a number of weeks, and that I would probably have to do this for a least two years! When I asked the question Jenni had suggested his only answer was that it probably wasn't epilepsy, but we could never be sure, and it was better to be safe than sorry. He advised, “take the medication as we don't want her to continue having seizures.”
Not wanting to argue, I smiled, thanked him, and went home (after having a good cry in the car!). When I got home I completed some research on Epilim. I concluded that the very best course of action for Georgina was NOT to pump her full of drugs which may not be necessary.
I called Jenni from STARS again, who soon brought me up to speed on what RAS really is, how my history of fainting at the sight of blood, and my mums general fainting history can be a significant factor, and all the other associated causes and symptoms. We soon felt that it was likely that RAS was what was wrong with Georgie. The attacks only seemed to happen when she was very angry, emotional, or in pain, and her symptoms of blue lips and pallid colour spoke for themselves. Jenni signposted us to a paediatric cardiologist at Southampton Hospital who had an interest in RAS, and sent me The Blackouts Checklist to take with us to our GP.
Our GP was wonderful, although not familiar with RAS, our health visitor was and they both backed me up completely. We had to go privately to be seen sooner, and was referred in just two weeks.
The paediatric cardiologist was wonderful, and after thorough checks, listening and note taking for over an hour, he agreed that it was likely Georgie had RAS. He felt sure this would be confirmed by something called a memo device. This was a little box that we were advised to hold over Georgie’s chest whenever she had an attack to record the rhythms of her heart. Having had four or five attacks in a ten day period, Georgie suddenly stopped having any at all. I was despairing, knowing the next day we had to give the device back, when finally, she had one that very night! I felt very guilty for feeling relieved, I hoped this would be the final hurdle....
We then went back to the hospital and we were commended by the team for throwing the Epilim away. The results of the memo confirmed Georgie’s diagnosis of RAS.
We are now in the process of putting a care plan into place for Georgie’s nursery, and hoping to do some work to raise awareness and funds for STARS. Georgie's attacks have settled into some kind of a pattern now. Her attacks are normally brought on if she's tired and emotional, or in pain.
As her mum, I'm dealing with her RAS episodes, keeping calm and reassuring her, but they still frighten me. As parents, It's awful to hold your normally bright and healthy child limp in your arms, waiting for them to start breathing again, knowing that this is a part of normal life now. But she always does, and within an hour she's back to normal.
I often wonder how it's going to affect her as she grows up. I know there are cases where people go for years without a seizure, and then they come back. I'm only grateful that we found STARS, so that as she grows up I know where we can turn to for advice.
I really cannot thank Jenni enough for all her kind words and support, without her and STARS I dread to think where we might be now!