Harminder’s story
Since the age of two I have suffered from RAS. At first everyone just thought I was a clumsy child always falling over and hurting myself. My mum was worried as sometimes I would fall without any reason. My mum talked to our G.P, who then referred me to my local hospital to see a paediatrician. The paediatrician told her that I had a problem with my feet, “balled feet” where the soles of my feet weren’t flat. He recommended that I wore supportive shoes, which would help them to grow with a flat sole.
My mum tried this for several months but still nothing improved, I was not only falling but also at times passing out. That summer my mum was changing one of my many plasters, when I suddenly had a seizure, my eyes rolled into my head, I was really pale and stiff. As you would expect my mum panicked because I was not breathing either, and started C.P.R whilst waiting for the ambulance to arrive. I was taken to my local A&E Dept. By the time I arrived at the hospital I had recovered, but was very sleepy. The doctors advised that it was a febrile seizure due to the hot weather, so my body could not regulate my temperature which caused the seizure. He told me this was normal for children of my age and said that it would get better by itself, and there was nothing further to worry about, so I was sent home.
Four months later, I had two more seizures, each one getting worse. Finally my second referral to the paediatric department came through. This time they did some tests. I had an EEG and an ECG, and both tests came back normal. Despite these normal test results, and mum describing my symptoms, the paediatrician diagnosed me with epilepsy, and wanted to start me on a course of tablets for the condition. Mum was uncomfortable with the diagnosis as my uncle suffered with epilepsy and my symptoms were not the same. The doctor would not listen to this, so my mum asked for a second opinion, but was told it would take three to six months to get an appointment with a different paediatrician.
Mum, being strong-minded, decided she had no choice but to go privately and we were offered an appointment within a week. She described my seizures to the consultant and without further tests I was diagnosed with Reflex Anoxic Seizures and told that it was often misdiagnosed as epilepsy or breath-holding. The consultant referred us to STARS, who were brilliant. Trudie explained there was a consultant at a children’s hospital who could help us if we needed a future referral.
When I was just 3 years old, we went to see this consultant as I had suffered more seizures. I was given an EEG and an ECG, and both tests came back negative, which was a relief. A heart scan was then arranged to monitor my heart, which was normal. He advised it was very difficult to catch a reading from a seizure, and many people had experienced the same problem. I had a Tilt Table test and this was also normal.
Another doctor then suggested that I have a Holter Monitor fitted. This was our last chance to get the dreaded reading, but no seizures so no reading.
We relocated to Kent before my fifth birthday and by this time my seizures were occurring less often. Some were worse than the others, and they always happened as soon as I’d hurt myself. As I got older I found it easier to control my seizures through breathing slowly, and keeping calm when in pain. At last I was happy and could manage my condition, so I never really talked about it to my friends. I still saw my local paediatrician for follow-up appointments every 6 months, but was able to carry on a normal life.
At the age of 8 I was learning karate and going horse riding, life was brilliant! However, in my final year at primary school, whilst playing, I fell backwards off a small fence. I hit my head when I fell which caused me to have a big seizure in front of the school. When I came around I was in the school medical room, my mum was there and everything was just blank. Mum took me to A&E to be checked over. By the time we arrived at hospital I had recovered and just felt sore and extremely drained and tired. My head scan was clear, so I was discharged to go home.
After my seizure I wanted to sleep for days and it took me two full days to sufficiently recover to go back to school. My friends and teacher were shocked and upset as they had never witnessed me having a seizure before. My friends were fantastic when I returned back to school. I no longer felt embarrassed but overjoyed that they all cared so much.
When I started my new school I told my friends about my condition without feeling self-conscious. My friends all promised to look after me if I ever felt unwell.
Unfortunately in October 2006 the seizures became more frequent again. My teacher offered me lots of support and reassurance, I did not feel scared or embarrassed and my friends were brilliant too! I wasn’t going to let RAS stop me enjoying life. I joined the school’s netball team, drum club, continued my karate. I also started swimming lessons at my local sports centre.
February 16th 2007 was a normal school day, and later that night when I was getting ready for bed I dropped an aerosol can on my foot. The pain was so bad that I felt everything was suddenly going all blurry. I experienced a seizure which lasted longer than normal. After three minutes I had not come around so my mum called an ambulance. After four minutes I started to come around but then experienced another seizure. The ambulance arrived and gave me oxygen to bring me around. I woke up in hospital attached to an ECG machine, but by then the seizures had passed and the reading was normal.
The doctors were concerned because I had taken longer than normal to recover from the attack so I was referred to a leading London hospital. I was seen by a specialist who advised that I have a Holter monitor fitted and if this didn’t work suggested that I have an Implantable Loop Recorder (ILR) fitted. The Holter monitor did not record, so I am now preparing to have an ILR implanted.
STARS and my school have been brilliant. STARS have sent me information for school and about the ILR procedure so I now feel less apprehensive about the operation.
My friends and tutor have been brilliant and they know how to react if I have a seizure.
I want everybody to know that having RAS does not mean the end of life. I’m doing everything a girl of 12 should be doing, I enjoy my life! RAS is not the whole of me, just a small part of me! I have learned over the years to cope with my condition. Sometimes there are bad times, but I try not to think about them and just concentrate on the good. With all the love and support I get from my mum, family, school and friends I intend to live a very full life, as should you all!!