MY HEALTH EXPERIENCE: IRIS AHERNEand her son FIONN,who has West Sydnrome, which can lead to more than 100 seizures a day
WHEN FIONN was three months old, he was diagnosed with infantile spasms, otherwise known as West Syndrome. His condition means he has seizures all the time, over 100 a day at times. If I was to count the number of seizures he has, I would be counting all day.
Some of his seizures are little jerky movements, he could have 50 of those one after the other. Over the years, his seizures have got worse and, at the moment, Fionn (now aged six) is suffering a lot of really bad fits like grand mal epileptic seizures.
His condition is described as cryptogenic or idiopathic, meaning that the cause for his seizures is unknown and cannot be found, despite undergoing a series of tests which went on for months, including MRI scans, Cat scans, Pet scans and lumbar punctures to name a few.
The really bad seizures Fionn is having at the moment leave him very weak and drowsy. It can take him a couple of hours to recover fully from one and, 20 minutes later, he can have another one. We never sleep very well as his seizures happen at night as well.
Fionn is described as having a severe global developmental delay and other associated conditions including autism. At six years old, he still has no speech. His balance is very poor and he needs to wear a crash helmet to limit the injuries from falls.
He has drop seizures, which mean when he is standing, it looks like somebody has pushed him very hard from behind. He falls straight to the floor, which is why he has to wear the crash helmet.
When he is on the floor, the first thing I do is loosen the strap of his helmet, so he does not choke and put him into the recovery position. Then I start counting to see how long this one will last. If it’s longer than usual, I have to give him emergency medication.
Every seizure, I ask the same question, will he come back this time? I talk to him. I say, “It’s okay Fionn, Mum is here”. I can see he’s afraid, even though he can’t speak.
His doctors have prescribed one anticonvulsant drug after another in various combinations, but none of the available therapies have worked for Fionn. Losing faith in drugs, we began to seek out alternatives. We tried the ketogenic diet for over two years, which did help somewhat at first, but eventually the seizure activity got the upper hand.
He had a vegal nerve stimulator implant (similar to a cardiac pacemaker), which has also failed. He has had monthly sessions of intravenous immunoglobulin (IVIg) for the past year, which requires him spending a week in hospital every time. We also have had what seems like half of the world praying for him.
Since he was first diagnosed, myself and Robert have been very proactive in terms of finding treatments for Fionn. We have tried everything, but nothing has helped and his condition is deteriorating. Through the experiences of other parents in the US and the UK, we heard about stem cell therapy and we think this holds the best hope for Fionn now.
We had planned to bring Fionn to a clinic in Germany for stem cell treatment, but that clinic has closed due to a change in legislation. We were heartbroken when we heard that news. We now have to go to the Beijing Puhua International Hospital in China, which is much more expensive, so we have had to set up a fundraising campaign at fionnsfund.com to raise the €30,000 cost of stem cell treatment.
I don’t know how we have coped with Fionn’s illness for so long, to tell you the truth. He is so ill that we don’t really think of anything else, we’re in panic mode all the time. We try to carry on with normal life as much as we possibly can for the sake of our other son, Joshua (10), but it is very difficult. If Fionn has a bad seizure, I have to stop what I am doing and give him my full attention. Obviously, this has a big impact on the time I can give to Joshua.
I take Fionn out a lot, he enjoys open spaces. If we were to stay at home because he might have a seizure, we would never go anywhere.
It is hard because he can have a seizure anywhere. If we are in the middle of a shopping centre, there is nothing I can do, I can’t hide him.
As Fionn’s condition worsens, my sense of urgency gets greater. We know people do not have much money at the moment and we are grateful for every cent we get. The local people in Kinnegad and Westmeath have been very supportive of our fundraising, but we have not had much success in raising donations through the site. We are hoping that some businesses might help us to advance our campaign a bit.
Despite all of his problems, Fionn is an absolute treasure and one smile from him can completely disarm you and melt the hardest of hearts. He has a great disposition and, in any little break that he has between seizures, his cheeky personality and great sense of fun come out.
We would so much love just to release him from behind the constant cloud and blur which shrouds his mind. He is our inspiration, our joy, our hope, our sweetest little man.
Besides easing his ongoing suffering, we so desperately want to give him some quality of life and his right to independence, to request things that he needs, to be able to feed himself and dress himself and use the bathroom and not be condemned to wearing nappies for the rest of his life.
Our biggest worry after somehow finding a cure for his seizures is his care when we can’t care for him anymore.
Fionn’s fund is selling an Irish-made silk tie, Fionns tie on fionnsfund.com. Ties are priced at €30.
In conversation with
MICHELLE MCDONAGH
WEST SYNDROME: WHAT IS IT?
West syndrome, otherwise known as infantile spasms, is an uncommon to rare and serious form of epilepsy in infants. The syndrome is often caused by an organic brain dysfunction whose origins may be prenatal, perinatal or postnatal.
In 90 per cent of children with the condition, infantile spasms occur in the first year of life, typically between three to six months of age. Often to begin with, the attacks are brief, infrequent and not typical, so it is quite common for the diagnosis to be made late. Statistically, boys are more likely to be affected than girls at a ratio of about three to two.
The spasms are different in different children, and can be so slight to begin with that they are not noticed or are thought to be due to colic. Each spasm starts suddenly and lasts for less than a few seconds. To begin with, a baby may experience only one or two spasms at a time, but usually over a period of days or weeks they build up into runs of sometimes several dozen occurring at a few seconds intervals.
In some children, infantile spasms respond easily to treatment, whereas in others they remain very resistant. Many children unfortunately go on to have other kinds of seizure in later childhood and many have learning difficulties. The prognosis for infantile spasms in both these respects is largely dependent on the underlying cause of the condition.
