Gordon Taylor

Meningococcal disease at 9

Meningococcal disease

My son has had meningitis four times; this may sound extreme, it is. Here is my story.

Gordon first contracted meningitis in 1991; he was nine years of age.  Gordon was never a sickly child but on the May bank holiday he felt unwell.  His temperature rose to 103 and he was delirious; I immediately sent for a doctor. 

A doctor arrived, checked Gordon over, said he had a viral infection to give him plenty of drinks and keep an eye on him.

For the next few days Gordon was lethargic and his temperature would rise and fall, but at this stage there were no spots.  At the weekend Gordon became ill again and again I sent for a doctor. The same doctor arrived said it was a still a viral infection  and continue with the drinks. I wasn't happy about this as it had gone on for too long and said I wanted a second opinion.  The doctor then said to take him to the children's hospital.  

We live about 30 minutes' drive from the hospital and by the time we got there Gordon was stiff.  When we arrived in the casualty department the staff were fantastic. Within minutes everything kicked off and medical staff took over. Gordon was shot full of antibiotics and taken to theatre for a lumbar puncture. My husband and I were shown into a waiting room where we sat, for what was probably a short time but seemed like hours, until a doctor came in to see us and told us that Gordon had meningococcal meningitis and septicaemia and was a very seriously ill child.  

At that stage the only thing I knew about meningitis was that it could be bacterial or viral. The doctor said it was bacterial, and said the next 24 hours were critical.  Gordon was put on several drips and moved into an isolation ward.  During the night the doctor came back to check on him, told my husband that Gordon was doing OK as he was still alive. The next 24 hours were at that stage the longest in my life.  

Thankfully he did recover and was allowed home a couple of weeks later.  Although he was very thin and pale Gordon was very lucky there was no permanent damage, but it did take a full year for him to recover. He suffered from a loss of memory and severe lack of concentration and would go into what can only be described as black moods.  These were very hard to deal with as Gordon was never like that.  It was after this that we joined Meningitis Research Foundation when by coincidence my husband heard an interview on the radio. Through meetings and talking to other people who had either suffered meningitis or family members I found that this was 'normal'.  

When Gordon went back to school for the next academic year, which was the year he should have been doing all his work towards his 11+ exam, he still had a lack of concentration and memory loss which continued all through that year, which I was also told was quite 'normal'. However, he passed his 11+ exam and went to grammar school where he developed a love of rugby and played up to first 15 level. He also played golf and became a competitive sailor representing Ireland in national and international competitions. Everything seemed to be going so well.

But in December 1998 he had all the symptoms of meningitis again and was rushed into hospital.  Again he was put into isolation on a drip, given antibiotics and kept in hospital for two weeks. The doctors said they were sure it was meningitis but as he was given the antibiotics immediately on arriving at hospital they could not get a culture so could not confirm it.   

In November 1999 Gordon again had all the symptoms of meningitis (although he had had the Meningitis C vaccine) and by the time he saw a doctor he had also septicaemia. An ambulance was sent for and Gordon and I were put into the back. Off we set for the hospital with my husband was driving there in our car. The paramedic was at great pains to tell him the ambulance would be going through red lights and he was not to follow it but to drive carefully.  Unfortunately a couple of minutes after the ambulance left for the hospital it caught on fire and had to return to its base and we had to wait until another one arrived. At this stage my husband had arrived at the hospital and couldn't understand where we were (if it hadn't have been so serious it could have been a comedy). Again it was hospital, drips, antibiotics, worry and relief when he recovered. The consultant he had this time felt because he played so much sport he may have had a head injury at some time which had not been investigated, but although he was X-rayed and MIR scanned nothing suspicious was found.  

In 2007, Gordon had just returned to England after a trip home for his brother's wedding. He had started a new job and after only two days felt so unwell that a member of staff decided to take him to the local hospital.  He went to the A & E department, told them his symptoms and informed them he had had meningitis three times before. The doctor said he was sure this was a viral infection to go home, drink plenty of water and take painkillers to keep his temperature down.  While waiting for a lift home he collapsed outside the hospital and was taken in again.  Roughly four hours later he was told the doctor was happy it was a viral infection and he could go home, but Gordon was convinced he was seriously ill and refused to leave.  Later that evening his shoulder was sore and a doctor was sent for - septicaemia had already started - and he was rushed to the Intensive Care Unit and again put on drips and given antibiotics in massive doses.  I got a call in work early the next day from the ICU telling me that Gordon was with them and being treated for meningitis and could I come to the hospital; I flew over to England that afternoon.  When I arrived and was taken into the ICU it was explained to me that Gordon was critically ill.  He had huge septicaemic blotches over his arms, legs and trunk, was wired up to a heart monitor, they were also very concerned about renal failure. I don't think I have ever been so frightened.  

Gordon was kept in the ICU for five days and gradually recovered and was moved into an isolation ward for another few days.  During this time we decided that when he was strong enough to travel he would come back home to Northern Ireland to recover.

He saw our family doctor on his return who referred him to a consultant in the Royal Victoria Hospital in Belfast.  His consultant ran a series of tests, the outcome of which was that Gordon was born with a complement deficiency, which is the reason he has taken meningitis so often.  Gordon will now be on antibiotics for life, he was advised to wear a medical alert giving details of his complement deficiency and what medication he should be given.  He has been a very lucky/unlucky young man, he has recovered and apart from his memory being affected has no other side affects. I do not want to think what would have happened to him had he left the hospital. It scares me to think that with all the publicity regarding meningitis a doctor would not listen to him, although he is an articulate adult.

The one thing I do not understand is why he was not tested for a complement deficiency before when he had had meningitis for the second or third time.  Neither my husband nor I had ever heard of a complement deficiency and it certainly had never been mentioned to us.

Gordon has been treated in three different hospitals in Belfast and in Barnsley I would like to thank all the staff who have looked after Gordon with care and dedication, our own medical practice and of course our own family and friends who have had to go through the worry and pain with us.  I hope we do not have to go through it again.

I hope my story is of interest and helps if anyone else has had meningitis more than once to find a reason.