Isaiah

Our son, Isaiah, was born in February 2000 following a normal pregnancy and delivery. Life cruised along nicely until he was 3½ years old and contracted glandular fever while we were living in the Northern Territory. Shortly after recovering from this virus he had several “turns” where it seemed he focused on something invisible to us and trembled slightly.  This happened just before bed and we thought he had actually fallen asleep and was doing this in his sleep. So we didn’t worry too much about it. 

A week later we went on holidays to Fiji. While we were there Isaiah would have these “turns” a couple of times a night. So we arranged to see a pediatrician in Brisbane on our return to Australia. As it was Christmas we couldn’t have any tests done in the couple of days we were in Brisbane. The pediatrician put Isaiah on medication to ensure that he didn’t have a seizure on the flight home to Darwin.

Isaiah had tests on our return to Darwin which showed some abnormality of the right temporal lobe.  He continued to have several seizures three or four times a week, always at night.  He became quite difficult to control, was always tired - sleeping two hours a day and at least twelve hours at night. We tried various medications, with limited results and Isaiah was eventually referred to a Brisbane neurologist.

Our little boy’s seizures started to occur during the day after about six months. We found this really difficult as it could happen at any time - in the pool, whilst walking downstairs, on his bike.  It started to impact on his life, that's when we really started to worry. Our lives were filled with uncertainty. We still didn't have a name for his "problem". 

It wasn't until we moved to Brisbane and we rang Epilepsy Queensland that we really understood what a diagnosis of epilepsy meant.

After trying some new medications with no success we were referred to specialists in Sydney for assessment to see if surgery was an option for Isaiah.  It was a very trying two weeks.  The first week was spent in telemetry where he was hooked up to an EEG 24/7, waiting and hoping for a seizure.  This seems quite ironic when previously you always hope that your child would not seize.  To increase the chance we used sleep deprivation and reduced medication.  Wednesday we hit gold. Isaiah had three seizures before the nurse arrived at work. (The nurse needs to inject isotopes into the blood stream preferably during the seizure for a SPECT to be done to see if the seizures are coming from one area in the brain.)

The nurse was in the room for 5 minutes when he had another.  So we had optimum chance for the doctors to see what they needed.  The following day Isaiah had another test to compare without seizure.  The next few days were filled with more tests and meetings. Isaiah was totally exhausted.

Our world was tipped upside down when we were finally given a diagnosis. Our Pediatric Neurologist said "I think it is very likely a brain tumour". This was what was causing the epilepsy. We were devastated as this diagnosis had not crossed our minds.  It took quite a while to digest this information. 

We met our surgeon the following day. She immediately put us at ease and recommended that we proceed with surgery. We also met the doctor who would perform the EEG during surgery to guide the surgeon on how much to safely remove.  They told us to expect loss of memory and peripheral vision, maybe some speech problems and quite possibly a change in behaviour.  We didn't really consider not operating to be an option - we wanted a kid who could go on school camps, drive a car, go swimming and have a regular life without the constant fear of a seizure.

As my husband Darryl is a member of the Australian Air Force and was being deployed in four months we asked if the surgery could be delayed by 12 months. We were told "no, we don't want to wait."  So we went home to wait for a date to be made.  We also needed our Brisbane Neurologist to be available to assist with the surgery in Sydney.  We were given a date for October.  We went back to Sydney two days before surgery was scheduled and had an MRI but unfortunately the day of surgery it was cancelled because of a shortage of intensive care beds.  This was devastating for not only us but also our team - but it was out of all our hands.  The next three weeks were spent waiting for a new date to be given.  The wait was excruciating because we also were limited with time before Darryl left for the Middle East.

Finally we headed back down to Sydney mid November with fingers crossed.  Isaiah was admitted to hospital the day before surgery as he needed a fresh MRI to make sure there had been no changes in the month.  The neurosurgeon came to see us the night before surgery and said that stroke was a very real risk for Isaiah.  That is the only time we wavered on our decision. However, we knew that our son could not live a normal life or perhaps even survive without the surgery.

7.30 am on Wednesday 18th of November last year, Isaiah was wheeled off for surgery. The next eight hours were agony. We had some family from NSW come and sit with us for the day and that was the best thing. We have no idea what they said to us but the chatter kept our minds from wondering what was going on in theatre.  We did get updates and everything was looking good but it wasn't until our Neurosurgeon came up and said Isaiah had to be sedated again before he could be brought up from recovery. This wasn’t because of some medical emergency but because he was thrashing around and yelling for Mummy and Daddy.  What a relief!  Arms and legs work, he can talk and he wants his mum and dad!

Children are so resilient. We couldn’t believe the first thing he said when he arrived in Intensive Care. He asked “what are we doing tomorrow?’

He was on morphine and mainly slept for the 24 hours in intensive care.  His head was bandaged and he didn't look too bad.  His main worry was not being able to walk to the toilet and not being able to wash his hands after. His drain was removed just before we left ICU.  He didn't eat for the next day and a half.  But with some cajoling and buying some of his favourite things we eventually tempted him.

When he was allowed to have his drips removed he refused pain killers and assured us that his head didn't hurt.  Tough kid.  His head started to swell with his bandages removed and his eye was black. He would have short bursts of energy followed by long periods of sleep.  We sat by his bed or took it in turns to go for a walk - you need to go clear your head and just get out of the hospital every now and then.  

Isaiah was quite irritable, understandably and was angry with doctors and nurses.  They were totally amazing.  The Neurologist in charge came to see us twice a day, another Neurologist once a day and our Anaesthetist every two days.  Within a few days Isaiah was making a good recovery and was awake for quite long periods during the day. We started to take him for rides around the hospital in a wheelchair or a short walk around the ward.  Darryl was due to leave Tuesday afternoon and he would be gone to the Middle East for five months. We were given a good behaviour pass to go down the road for a final family meal.

When Isaiah was well enough he and I flew home.  Any touching of his head caused pain and he liked to sleep with an ice pack.  He didn't like anyone trying to look at his wound or to speak about his surgery.  His stitches dissolved within about two and a half weeks. With Dad gone the only person he would hug or kiss was Mum.  The next few weeks were a little bit of a rollercoaster - happy one minute, crying over nothing or angry the next.  We're not sure how much of this was post operative and how much because of the change in family dynamics.

We received the results of the biopsy of the matter removed during surgery. It showed cortical dysplasia (jumbled brain cells) as well as a low grade tumour.

The good news is now it is just past the twelve month anniversary of Isaiah’s surgery and he is still seizure free. So we can now say that his surgery was a resounding success!!!!  Isaiah started grade one this year and he is very much looking forward to moving into grade two next year.  Weekends are still kept pretty low key although Isaiah is no longer tired all the time and stopped having daytime sleeps some time ago - something he used to ask for, sometimes at 10 am!  He is having ongoing rehabilitation treatment which will be available until he leaves school. The only negative side effect from the surgery is memory loss. This is small payment for being seizure free. Programs have been specially written for his school to assist with his learning. We also do quite a bit of work at home to help him with his literacy. The doctors have now started to wean him off his medication - our next milestone. 

We know how very lucky we are that Isaiah was able to be helped with surgery. There were many risks. However, without taking the chance who knows what the outcome of years of seizures would be. The surgery was definitely a huge decision to make and of course surgery isn’t suitable for everyone but is was certainly the right decision for Isaiah.

While Darryl isn’t accustomed to public speaking, at the last Epilepsy Queensland seminar he took the opportunity to share our experiences with Isaiah’s epilepsy and consequent surgery. He did this because we knew what it would help other parents who are going through a similar journey. Epilepsy Queensland plays a vital role for those of us who are touched by epilepsy. Unfortunately there are thousands of Queenslanders with epilepsy who are unable to be helped by surgery.