Almost three years ago, MsDD came down with a cold virus. She’s no stranger to these things: I’ve always thought that she was more than averagely vulnerable to the colds and sniffles that come with early childhood.
She went into school the following day but I was called away from my first Breast Screening examination by the school nurse. Eliza had fainted at school, fallen and hit the back of her head. She had been feeling light-headed ever since, and was in the nurse’s station, dizzy. Could I please pick her up and take her home?
And so began a condition that continues until today.
I managed to make an appointment with the GP who, seeing a 12 year old girl in his office, immediately deduced that Eliza was anorexic and gave her a lecture on eating properly. She eats properly. She is not anorexic. I was outraged and asked for a second opinion with a different GP, who referred her to a paediatrician, whom we saw privately. When it’s your child, and you have health insurance, you jump the queue.
The paediatrician arranged for test after test to eliminate a heart condition; low blood sugar; epilepsy; blood pressure problems; tumours. We were referred to King’s College Hospital, where she was connected up to electrodes to measure for any irregular brain activity. She was required to go to sleep but I don’t know anyone (apart from, perhaps OH,) who can sleep to order. Just as she finally dropped off, a loud ambulance passed by in the street below. It didn’t matter anyway, because there were no irregularities found.
We were referred during the holidays to a paediatric cardiologist at the Evelina Children’s Hospital who was pleased to report that nothing irregular had been found.
During all of this, I could see the look on these doctors’ faces: the look of recognition that they were being faced with one of those awful hysterical mothers. There was obviously nothing wrong with the child but the mother was still there spinning this story about light-headedness and dizziness. At times I was made to feel I was imagining things but I knew that my daughter was obviously not right. Her face was grey, she could often not stand up or walk in a straight line and her dizzy spells could come on at a moment’s notice and last for hours.
She was told that she was overtired and doing too much so I let her do nothing during the summer holidays. She slept and slept but still had the dizzy spells and her world was constantly spinning. By this time I got the impression that the paediatrician was simply not listening to me. I’d talk to him and he would write things down and yet his report to our GP or to the specialist consultants contained so many inaccuracies that I had to correct. No wonder they must have thought I was hysterical.
In the end I took the OH to one of our appointments in the hope that he would take a man more seriously. I don’t want to make sweeping generalisations here but I do wonder if the fact that the paediatrician was a middle aged Asian man had anything to so with his high-handed attitude towards me.
All this took months and still nothing was found so we were referred to the Audiology Department at Great Ormond Street Hospital. Eliza’s world had been spinning for almost 9 months by the time we saw the Consultant there, who carefully took Eliza’s story and conducted some tests on her ears and balance system. She finally postulated this: Eliza’s vestibular system had been knocked out by the original virus and her brain had been struggling to make sense of the world ever since.
The GOSH consultant suggested that we see a physiotherapist, who would teach Eliza the Cawthorne-Cooksey exercises for rehabilitation of people with vestibular problems. Eliza would have to retrain her brain to rebalance itself.
Our GP referred us to a local physiotherapist and Eliza started a daily programme of exercises to retrain her brain and balance system. The constant light headedness disappeared, which was a huge relief.
During this time Eliza was making up all the work she had missed, and achieved distinctions in Grade 7 clarinet and Grade 4 piano. She even danced in her school play and kept up with all of her BYMT musical commitments. She was exhausted and had huge bags under her eyes, but her complexion was becoming less grey and she now had some colour back in her cheeks.
Nevertheless, her dizzy spells would still come on without any notice and did so every three or four days. We continued to see the GOSH consultant, who was pleased with Eliza’s progress but still concerned at the debilitating dizzy spells. Just before Christmas 2012, she started drug treatment which only seemed to make the dizziness worse.
This time last year Eliza was spending three or four hours every day lying down in the nurse’s station at school, unable to move or open her eyes. She would wake up dizzy in the middle of the night and be unable to sleep for hours. The poor child was still going to school and making up the work that she’d missed but her music and the quality of her homework suffered and her grades were going downhill.
At last year’s parents’ evening her teachers were so helpful and sympathetic but I burst into tears several times at the thought of this bright future going down the toilet. I think you must be able to imagine how awfully stressful it all was.
We decided, with the doctors, to terminate Eliza’s drug treatment and she continued with the physiotherapy. And then, at the beginning of this school year, the dizzy spells suddenly became less frequent. She started having them every three weeks or so and, at one point there was five week gap between them. A glint of sunshine was appearing over the horizon. She was much more like her old self with a glaze of 15 year old teenager complicating things.
Now, Eliza has a busy life. Currently in the first year of her GCSEs, she’s having to do all the extra required for her Duke of Edinburgh Bronze award, which she’d doing as this year’s compulsory community service. She has ballet and all of her Bromley Youth Music activities. Last term she simply bit off far more than she could chew, what with being in the house band for the sixth form play and also taking part in the school drama company. Predictably for this essentially scatter-brained child, homeworks were late, music practices weren’t done and her marks in her Grade 6 piano and Grade 8 clarinet exams were deeply disappointing.
This term she has been asked to be music director for the lower school play and spent the Christmas holidays composing songs and incidental music. She spends lunchtimes and some after-school time teaching and coaching the young actors. She’s tired and the pressure is on with her homework. She has had two dizzy spells in the last week and I can’t help thinking that they must somehow be connected to stress and tiredness. I’m worried.
Fingers crossed the dizziness will abate in time as her brain completes its retraining, and she IS better than she was last year but these two dizzies in the last week have made me worry that her condition is worsening again as we start a crucial time in her school life.
All I can do is keep my fingers crossed and hope that she can somehow get herself through it all and that it will somehow just go. No-one knows what it is. No-one knows how to cure it. It’s just one of those things.