Aidan was our firstborn. His arrival was a most amazing day. The birth was relatively straight forward and after a few days in hospital, as was usual in the 1980’s the three of us went home to start a new life.
When Aidan was ten months old he had a convulsion. My mother was looking after him at the time and called an ambulance. At the hospital they thought he may have had a febrile convulsion due to a high temperature. But he wasn’t hot and I knew he’d been well when we left him.
At the time, I was still new to being a parent and didn’t have the confidence to question the doctors. Anyway, Aidan was developing normally and was a loving, happy little boy.
Aidan continued to have seizures, but the consultants were not unduly worried as they were infrequent, even though they had put him on Phenobarbitone.
Aidan started the local Primary School in reception class and was learning to read and write and was average in class. However, in his second year the seizures increased dramatically, from around 36 a year – to around 36 a month!
We were seeing a decline in his development and he was falling behind in class.
The paediatricians began to talk about epilepsy and we started a regime of different medication, to no avail. We wanted answers but the scans showed nothing.
By this time Aidan had been given a “statement of educational needs” and had an NTA (non-teaching assistant) in class to help him stay on task and to deal with any seizures that occurred.
I’ll never forget the day his teacher, in his final year of primary school, said Aidan would not survive mainstream high school, she felt he would be bullied and not be able to keep up. We were advised to look for a school for children with moderate learning difficulties. We were gutted. It was the realisation that our child really was different.
We continued to push for answers and eventually the paediatrician managed to get funding to send Aidan to the David Lewis Centre in Cheshire.
He spent 3 months there and had a full medical, educational and psychological
assessment. The outcome being that he may be suitable for brain surgery.
We were referred to Great Ormond Street hospital, where after a long train journey Aidan had a massive seizure for all to see. Aidan came round OK but I completely broke down and the years of anxiety and stress came pouring out to the new psychologist.
The results of all the test at GOSH showed there were ‘displaced cells’ in the left temporal lobe, but the seizures were not just ‘focal’ but also ‘generalised’.
This meant that surgery would not be an option for him. We were told that unless we could find a drug that controlled the seizures, we could see a deterioration in his speech and gait.
We came back to Leeds and started a lengthy programme of different drugs and combinations of.
At the age of 14 Aidan was fitted with a Vagus Nerve Stimulator. He was the first child in the country to have this operation and was on the front page of all the local newspapers, we even had reporters knocking at the door for interviews.
We were hopeful. Unfortunately he was only seizure free for 17 days – the longest time he has ever gone.
He was classed as drug resistant and at one point we actually weaned him off all drugs, he wasn’t any worse, (nor any better).
As a new drug was brought to market we would try them.
By now Aidan was on a cocktail of drugs and had developed a seizure pattern.
1 x tonic/clonic seizure every 10-14 days which would be controlled by either rectal diazepam or buccal midazolam , and complex partial seizures, which presented like awakening from a nightmare with repetitive actions , these would occur several times, almost every night, this type didn’t require any intervention.
This was exhausting for all, but we carried on like this for years.
As Aidan approached adulthood we had a great social worker who advised on his future. She would always say; “Don’t leave it too late for him to live a more independent life.” We were not ready for that, we were coping again and our other son was doing well at school and getting ready for university. We did however agree to have some respite care though and chose a Wilf Ward Family Trust house in Boston Spa. Aidan enjoyed his stays there and the staff were brilliant.
When Aidan was 24, Elliot went off to University and he really missed him. He would ask where Elliot had gone and why didn’t he live with us anymore. I told him Elliot was at school a long way away and that he was living with some friends. This prompted a response, “When can I go live with my friends?” We knew this was the time to look into a supported living service.
It took a year or so to get funding and a placement and Aidan moved into a house shared by 2 other guys with similar needs, supported by staff from Wilf Ward.
Things were great for about three years. Then out of the blue he stopped responding to the emergency medication to bring him out of seizure. Things did not improve, for two years he spent most of the time in Harrogate Hospital.
We were told by the Doctors we had reached a stage where Aidan was so poorly that, “to do nothing is not an option, but to do something was dangerous”.
Aidan was admitted to Intensive Care Unit regularly; and on four occasions he had to be put into an induced coma, just to stop the seizure. We were also asked on two occasions if we would sign a DNR notice, which of course we didn’t.
Whilst this was going on Wilf Ward Family Trust were very supportive and staff were sent on a very interesting and informative epilepsy training course given by Sally Gomersall from Epilepsy Awareness Ltd. Sally suggested that Aidan may benefit from a referral via the NHS to the Sir William Gowers Centre that offer specialist assessment and treatment for people with seizures.
Aidan was under the care of a Consultant Epileptologist from Leeds and a Neurologist in Harrogate. They had a hunch regarding new genetic testing for “Dravet Syndrome” which would be done at the Sir William Gowers Epilepsy Assessment Centre in Chalfont St. Peter, Buckinghamshire.
Aidan was transferred from Harrogate Hospital by ambulance to the Sir William Gowers Centre, where he stayed for 3 weeks until all the tests were done. After which we were sent home. It took several weeks for the results to come through, it was confirmed, Aidan did have Dravet Syndrome. His medication has been individualised and in the past year we have seen a big improvement.
Aidan is 33. His seizures have not stopped, but are much less frequent and more manageable. For me the best outcome is that his quality of life has improved massively. He is much more aware, very chatty and enjoys being with friends. He joins in activities such as swimming, trips to Blackpool and has even been to a ‘Take That” concert. He is living life to the full and very best of his ability.
I wanted to share Aidan’s story to provide hope to others who have been diagnosed with Dravet Syndrome. Sometimes reading up on this condition is quite negative, but I can assure you Aidan is having an amazing time at the moment.
Don’t ever give up hope!!!