Make the Most of What You’ve Got
Michael is our fourth child, now aged ten. Born in June 2000, he has one sister and two brothers. Around his third birthday, at 7.50am his eight year old brother alerted me saying "Michael's not talking, and it's like he is trying to box, I think there's something wrong with him". I raced into the bedroom and Michael was in his bed, arms flexed, jerking slightly, eyes fixed, unresponsive. I noticed a small amount of blood at the side of his mouth.
Seven years on, this picture is still so vivid in my mind. I recognised it as a seizure and it was a major shock as it was completely out of the blue. I lifted Michael, checked his airway and kept it open. He was still jerking slightly and afterwards went into a deep sleep. I immediately took Michael to the GP, where he was given Valium and oxygen. He was transferred via ambulance to the A&E at Our Lady's Children's hospital Crumlin.
In A&E, my husband John and I were told it was probably a 'severe prolonged febrile convulsion', triggered by infection. He was admitted to the ward and given oxygen, nebulisers, antibiotics and intravenous fluids for a chest infection. A few days later it was discharge time and I asked the doctor if Michael was at risk of developing epilepsy and if he would need a CT scan. The doctor thought is was not necessary, because Michael had a febrile convulsion. He advised me to watch out for infection and to give Calpol if necessary.
I began to wonder if there would be more seizures but none occurred for twelve months. Amazingly, one year later almost to the day, I found Michael - again at 8am - lying in bed looking lifeless, his hands and feet white, face greyish, completely unresponsive. I called my daughter and she brought the rectal Valium from my wardrobe, which the doctor had prescribed. I gave it to Michael and it was a major relief when after a few minutes he made some noises and the colour in his face slowly improved. My GP assessed Michael and an appointment was arranged at Temple Street Children's Hospital.
Epilepsy is Diagnosed
About two weeks after Michael's second seizure, things changed. We noticed he would suddenly stop what he was doing, become paler and stare a little. The changes were quite subtle and short, only lasting 20 to 30 seconds, but it was definitely not normal. Again, epilepsy crossed my mind.
Michael was seen by the Consultant Paediatric Neurologist and we were advised to keep a diary of all the 'paling down' episodes. Things began to escalate for Michael. The episodes increased in number and severity, some lasting one and a half to two minutes. A new characteristic was added - 'lip smacking'. Michael would now almost always move his lips during these episodes. At the next appointment, the doctor studied the diary and told me Michael had epilepsy. I wasn't shocked.
Michael was started on anti-convulsive therapy and I kept a daily diary, which is essential. Within a few weeks of starting to take the medication, Michael started to stutter. He never had a stutter prior to taking the medication. I phoned the hospital after a few days of documenting the stutters. He was now stuttering up to 18 times a day. I was advised to reduce the medication.
It was very upsetting watching Michael as the stuttering quickly became more common. When it reached 50-60 times a day for 3 days, I decided to record Michael on the camcorder. He was admitted again to Temple Street in August 2004.
It was a worrying time. We were looking forward to Michael beginning playschool and had bought his schoolbag... suddenly this. On admission, Michael had an EEG, which showed no seizure activity while stuttering. It seemed that his stuttering was as a result of the medication. He came down off the original drug and was started on another at the same time. Within 5-6 days, his stuttering was almost gong, amazing.
Michael started playschool and loved his year there. He continued to get seizures. By now we knew what they were called complex partial seizures, originating from the temporal lobe.
In April 2005, telemetry was arranged at Temple Street to capture his seizures. Gradually Michael's medication dose was increased. He had neuropsychological assessments and speech therapy assessments. He got and continues to get excellent care in Temple Street.
In September that year, he started in Junior Infants, getting between 2 and 6 seizures a week. By March 2006, the seizures intensified. On three occasions he was incontinent of urine during the seizures. Things were definitely not going the way you would wish. Michael plays a lot of football and there was a definite trigger factor there. I thing fatigue was the link.
In May 2006, Michael had a seizure and unlike previous seizures this time there was no warning. Concerns were mounting and the seizures were defining his life. Safety awareness was huge - bath time, meal time. All the time. Another new anti-convulsant was tried next, added to the existing one. The dosage was increased slowly but the seizures continued with no obvious gain.
On some mornings Michael would tell us that he had seizures during the night. We bought a monitor which went under his mattress. Over the next year, two more new medications were added to the original and later removed. Michael's epilepsy was called 'medically intractable' - all the various medications we tried failed to eliminate the seizures. Nevertheless, it is important to stress that without the medication the number of seizures would have been far higher, so he did and continues to gain enormously from it.
In July 2007, Michael was admitted to Temple Street for telemetry in an effort to capture more seizures. Having extensively researched his type of epilepsy, I asked if Michael could be assessed for surgery. It was decided that he would have a 'work-up' done, meaning MRI, CT and PET scans. His case was presented in Beaumont in November 2007 and a few days later we were told that he was a suitable candidate for surgery. We were so happy at this opportunity to eliminate or reduce his seizures. We met with Michael's neurosurgeon, and Michael also had a cerebral angiogram and a WADA test done.
Surgery Brings Improvement
In April 2008 Michael underwent right partial temporal surgery, selective hippocampectomy. Just two days later Michael had a seizure. We were very disappointed. He recovered very well but at home the seizures continued, although they had reduced in number. In October Michael was readmitted for more surgery. He had further right anterior temporal surgery and hippocampectony to remove the epileptogenic foci.
Again the surgery went well but soon Michael developed 'cortical oedema' and a small haematoma leaving him with greatly reduced power on his left side. It was like a stroke and for a few days, he was only able to walk with us supporting and propping up the left side of his body. We were terrified at what this would mean for our son but after the neurosurgeon had assessed the CT scans, he explained that the loss of power was temporary. Our relief was immense. He was given steroids and lots of physiotherapy and over the next few days Michael regained his power. He was discharged and has made a remarkable recovery.
As I write this in July 2010, almost two years after the second surgery, Michael has had his yearly MRI and we are awaiting the result. He continues on two medications, at the same dose as before the surgery. The only seizure activity since his second surgery was in April of last year when he had a few mild seizures. Since then, he has had no obvious seizures, a major improvement. It's wonderful to see that seizures no longer intrude on his life.
Michael now and again says "I'm getting a pain" but no behavioural changes occur. Just last week, I asked the Consultant Paediatric Neurologist and this. She explained these are "mini seizures" that don't develop or evolve thanks to the surgery. This is a major gain.
Thank you to all the wonderful staff in Beaumont and in Temple Street hospital who have done so much to change Michael's life for the better.
There are so many others whom I also want to thank. The staff at Michael's primary school, Scoil Naomh Iosaf, are supportive in every way possible. He gets 'learning support' there for English and Maths. Our local G.A.A. club plays a big part in his life both socially and fitness wise. He loves playing and training. Our families, in particular my mother and friends are very supportive and we know they're there whenever needed. Finally Michael's school friends are just great - he is truly blessed with his friends.
I became a Brainwave member soon after Michael was diagnosed with epilepsy. Brainwave has been great in giving us information. Thank you so much. There is so much help out there - just get informed. I must wrap this up by saying that John and I hope Michael's story can help other parents.