Meningitis in your words

Herbie Taylor's story

  • Location: England
  • Categories: Hib (Haemophilus Influenzae B)
  • Age: Toddler 1-3
  • Relationship: Parent
  • Outcome: Recovery with after effects
Herbie Taylor

Our 4th child, Herbie, was 13 months when he started walking in February 2010 and yet three weeks later he stopped! He stopped crawling too and seemed lethargic and unwell. I took his temperature, it was normal but he definitely 'wasn't right'. He didn't want to be picked up, he cried when you did, but he wanted to eat and drink! It was odd.

I took him to my GP on the Monday after two days of this and he gave him a thorough check. Throat a little sore, temperature normal at 36.6, ears fine, tummy soft, chest clear. I was advised to take him home, give him Calpol etc if he seemed in pain and let him rest. It was probably viral, the achiness/pain was flu like. My GP did suggest coming back at the end of the week if he was no better and sooner if he got worse.

By Wednesday he seemed to want to move but it was short lived and by Thursday he was back to lying on the sofa watching his siblings play. On the Friday I returned to the doctor's surgery. A different GP checked the same things and got the same results. He noted however that his temperature was strangely low. Herbie was irritable and wanted to lay flat, he was so unhappy at the examination. My GP's words were...'it seems viral but I would be happier with a high temperature's like something sinister is going on'. He gave me a bag to get a urine sample and suggested I took it straight to A&E for testing (it was 6pm and the surgery was shutting) and let the Paed team look at him. I was nervous about meningitis at this point.

"I turned on the nightlight and looked in horror at Herbie"

got back home and found the urine sample had leaked everywhere! I called the out of hours doctor who suggested going first thing in the morning to the hospital.

That night around 10pm Herbie vomited for the first time. He was sleepy, hadn't eaten or drunk for about 12 hours and still didn't have a temperature. I continued checking for rashes as I always do when my children are ill...there wasn't one.

Early the next morning we went to the hospital. Herbie was no better and no worse. He slept his way through A&E and lo and behold he had a temperature, nothing remarkable but I felt happier as I figured it was viral as we thought all along. The doctors checked his urine, clear, his lungs with an x-ray, clear. His tummy was soft and his temperature came down with Calpol. However the doctor was concerned that he was still very sleepy so he admitted us to a ward for six hours observation. We had to try to get him to drink but he didn't want to. He took some Dioralyte and stopped being sick. He sat up briefly to watch Waybuloo on TV. The hospital discharged us. In fairness to them they said we could stay overnight but that they wouldn't do anything we couldn't do at home. We took Herbie home but put him in our bedroom to watch him overnight.

At 5am I awoke to a high-pitched wailing. I turned on the nightlight and looked in horror at Herbie, his eyes were open but totally white (rolled into his head), his arms were stuck up to the side of his head. We called an ambulance and he was rushed to A&E. I thought that he was gone forever. He arrived at A&E and they treated him for meningitis immediately.

He spent 17 days in hospital and had 17 days of antibiotics. They still don't know if it was the HiB strain which he had been inoculated against but the tests suggest it was. He was too unstable for the lumbar puncture to be done until day seven. He was given loads of fluid and was swollen and plump. Getting blood out of him was a nightmare, the cannulas just as bad. During his time in the Paediatric High Dependency Unit (PDHU) he had a blood transfusion, two platelet transfusions, a bleed in his stomach, problems urinating, two CAT scans – the first showed nothing but the second a week later showed a fluid collection.

He had a couple of vomiting episodes, one of which kept him in the PHDU for seven days instead of the four they had hoped. He had very low blood pressure, then high blood pressure. His heart rate kept dipping.

The strain on us and our other three children (seven year old twins and a two year old) was hard but a great network of family and friends helped us through.

I write this when he is only home from hospital a week and a half.

He is crawling again but not yet walking, he wants to but doesn't have the strength. His eyesight and neurology are all normal. I know he can hear but the test in a week or so will tell us if there has been any loss. He is eating, talking and pretty much doing what he did before. Time will tell if there are any underlying issues.

He is still sleeping in our room as he has bad dreams and cries out. When I give him my hand he stops immediately without waking. He is extremely clingy but we have been told this is to be expected.

What I want to say to parents is 'IT'S NOT ALL ABOUT A RASH AND HIGH TEMPERATURE!' Herbie had a low temperature, no rash and very very cold hands and feet but he does have cool hands and feet always. If this story helps save one child it's worth telling which is why I joined MRF as soon as I returned home. I am optimistic of a full recovery for him but know that the fact that he is here at all is something I will always be grateful for.

Emily Taylor
April 2010

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