Meningitis in your words

Loken's story

  • Date of illness: 10 Jan 2011
  • Categories: Meningococcal
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Recovery with after effects
  • After effects: Scarring - skin damage
It was the 10th of January 2011 and I received a phone call at 3pm from the nursery saying that Loken had a temperature and that he was a bit sleepy. I agreed for the nursery to provide him with some Calpol.

I had a weird feeling and decided to stop work and to collect him. Loken was very lethargic and sleepy when I collected him at 4pm. However, I went home with him and tried to give him some food, which he refused. I gave him some grapes, which he ate. My mum saw him via Skype and said that he didn't look well at all and to keep an eye on him.
I took him to bed at 6pm but his temperature kept going up. I applied cold cloths on his head and legs to get the temperature down. Loken started shivering and I got really worried. His feet and fingers looked a bit blue as well so I decided to call the out of hours doctor. They asked me lots of questions and advised me that they would call back soon. At this time I could not see any rash on his skin but I didn't know what I was looking for.
I got really worried all of a sudden and decided to call my friend Inga to ask her if she could drive us to the A&E. We arrived at the A&E at 9pm and Loken started vomiting and emptying his bowels at the same time. He wasn't well at all and the vomiting became more and more aggressive. He hardly responded to me and was then seen by the paediatrician, who gave him antibiotics through a drip. He spotted a couple of spots, one on his neck and one on his arm.
We were then admitted to Maidstone Hospital, where Loken was watched overnight. He wouldn't sleep and always said "alle alle", which is the German word for finish (he was in pain and wanted me to help him). His blood pressure kept going up and down and throughout the night he developed a severe rash all over his body. 
I called my sister-in-law Della at 4am to come and support me as I couldn't cope anymore (I was also seven weeks pregnant at the time). My husband had flown to his job in Venezuela the day before and I was advised to call him to come back as our son was not well.
It all happened so fast and they said something about meningococcal septicaemia and meningitis. I didn't even know what meningococcal was. They called the Southern Thames Retrieval Team to collect Loken and take him to the London Evelina PICU. Loken was put into a coma as his organs were not able to support him anymore. Della and I received antibiotics and we were able to drive in the ambulance to the hospital. I kept asking the doctors and nurses if he would survive and all they kept saying was that Loken was very ill. Nobody ever gave me false hopes.
The next few days were the most difficult days in our lives. Brendon (my husband and Loken's dad) arrived two days later and he was devastated to see Loken in the PICU. He had wires everywhere and was completely swollen from all the fluid they had to give him. He stayed in a coma for six days and was then slowly woken up. We thought we’d crossed a hurdle and that he would survive, but again we were told that anything could happen in the next few days.
Loken's fingers and toes turned blue and the consultant drew a line with a pen to see if they were getting worse. Loken had a few brain scans as he was not responsive, but the consultant could not see any obvious damage apart from a swollen brain. Loken got better on a daily basis, moving his fingers and watching everything that happened around him. We were transferred to the Children's Ward and he continued his recovery.
We were in and out of hospital for the following four weeks as his temperature would not go down. It dropped down to normal eventually and he was finally discharged. He got better and better on a daily basis, learning to walk again and to talk.
We are the luckiest parents in the world as Loken has made a full recovery apart from a few scars on his body where the disease struck.
Loken turned six in January 2015, and is thriving and enjoying life. I had a healthy baby daughter in September 2011 and life could not be better.
I am very cautious now and I advise all my friends to watch out for the symptoms and to act promptly. We would like to thank everyone, who supported us and who helped Loken to survive such a horrible disease.

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