Meningitis in your words

Nigel Knowles's story

Location: England
Categories: Tuberculosis (TB)
Age: Young child 3-5
Relationship: Child
Outcome: Recovery with after effects
After effects: Learning difficulties

My son Nigel had TB meningitis in spring 1969 aged four and a half years. He went undiagnosed for some weeks. His father was at that time in the Far East, serving with the Royal Navy.

In February he had bouts of sickness, and some stumbling. Mid March he had severe pain above his eye and a high temperature. He was at that time unable to walk, and was also drowsy. I had to take him in his sister’s pushchair to see a doctor, who diagnosed a throat infection.

Ten days later, after two home visits, Nigel’s temperature was above 100, he was unable to stand at all, and could not bear to be lifted or have his head moved.

My mother suspected meningitis, as there had been a family history of meningitis in boys on her mother’s side of the family, including her younger brother. The doctor said that he was not sure what was wrong, but that he was sure it was not anything serious. He also said that the family history was not relevant.

Eventually Nigel was sent to Ashford Hospital on Wednesday 2 April, where he was diagnosed with viral meningitis. I was told he would be better within about a week, however Nigel deteriorated, and by Easter Sunday he was in a coma, and very poorly indeed. I was visiting him three times a day, and each time could see the change in him.

Ashford Hospital sent the police to fetch me on the Sunday evening as they did not know what else they could do for Nigel. He was transferred to Great Ormond Street Hospital later that evening. I travelled in the ambulance with Nigel, who was now completely unresponsive. My father met us at the hospital. The specialist who saw Nigel arranged with the MoD for my husband to be sent home, and he arrived home on Tuesday 8th. On Easter Monday Nigel was diagnosed with TB meningitis, and was being barrier nursed in an isolation ward.

Nigel remained in a coma for a number of weeks, and it was not until the August that we were told he was out of danger, at which time he was transferred to Tadworth Court Hospital to recover and continue with his physiotherapy to learn to stand, and walk, again. He also had speech therapy.

He finally left hospital on October 17, just prior to his fifth birthday. On leaving hospital he was doubly incontinent, blind on the left side of both eyes, unable to speak properly, had bouts of screaming, and could not walk more than a few steps without falling over.

"Years of treatment followed. His speech improved slowly with help, and is now perfect",- tells Nigel's mother.

Nigel suffered permanent, serious brain damage which caused; left hemianopia (blindness to the left hand side of both eyes), secondary left sided hemi dystonia (unusual and uncontrollable and painful movements to his left side, most noticeably his arm). He has also been left with poor concentration and poor short term memory. His self management skills are poor.

Nigel remained under the care of Great Ormond Street, where he had physiotherapy to improve his walking. He also had major surgery to his left leg in 1974 (tendon grafts to drop his heel down) and in 1976 a left rotation osteotomy (cutting and turning his left thigh bone though 45 degrees, and pinning it back together). This surgery greatly improved his walking, but he still stumbles and falls occasionally.

My younger sister’s son also had meningitis early in 1973, when he was nearly three. His symptoms were not the same as Nigel’s. He had neck stiffness and pain and could not bear to have anything put over his head. He was drowsy and just wanted to sleep. Fortunately, and partly because of Nigel’s history, he was seen and diagnosed early. He was also fortunate he did not have bacterial meningitis, he had viral meningitis and was in hospital for about a week. He did not have any long term adverse effects following his meningitis.

Both Nigel and his cousin Craig were healthy, active little boys prior to contracting meningitis. I was told by the consultant at Great Ormond Street that if Nigel’s symptoms been recognised and diagnosed earlier, he would not have gone into a coma, with the likelihood that he would not have suffered serious, if any brain damage.

Pauline Knowles says: "I am thankful for his survival, but his life has needless to say been made difficult by the brain damage that resulted."

Nonetheless he is a happy, funny man, with a whacky sense of humour, and I love him. He has recently undergone brain surgery (Deep Brain Stimulation) to try to overcome the secondary dystonia. It is early days, but the signs are encouraging.

Pauline Knowles
September 2009