I haven’t posted in three months. It hasn’t, it’s fair to say, been a very easy three months: more seizures, more ambulances, more time in hospital. This whole year has been grim, quite frankly. But I am very happy to report that there are signs that things might be improving for R.
Since January, I have suspected that tonsillitis was at the root of many of R’s worst episodes. It’s been difficult to prove. Until very recently, I favoured the “maternal thermometer” (maternal hand on brow) when determining whether my children were unwell. I considered myself to be pretty good at this but each time I took R to the GP convinced that she had tonsillitis, her temperature was below 37 degrees. R is difficult to examine and halitosis and a reluctance to eat are not taken as diagnostic so, in the absence of a temperature, she was rarely diagnosed with anything.
Whatever the GP thought, as her mum, I knew when R was ill. In fact, I had come to the conclusion (on the basis of no evidence whatsoever) that R’s baseline temperature runs low. I put forward my hypothesis to R’s doctors but things being how they were this year, I never quite got round to collecting any data to test it. Over the course of R’s month long stay in hospital in the summer, however, it was established that R’s usual temperature is indeed very low. A temperature of 36.5 degrees (well within the normal range) is a fever for R. On this basis, during one of her admissions in August, she was seen by an ENT doctor to consider a potential tonsillectomy.
The surgery was booked for October. Unfortunately, the week before the surgery, R’s seizures worsened again and she was re-admitted to hospital. I have read that you only realise just how long 30 seconds is when you watch your child having a seizure. It’s true. So imagine a seizure lasting for hours. R was very poorly. Her neurologists, determined that she would have the surgery did their best to put a positive spin on the situation for their surgical (and anaesthetic) colleagues.
I’m glad they did. In the month since the surgery, R has had only a couple of short seizures and none – NONE – in the last three weeks. The surgeon said that R’s tonsils were very scarred and shrivelled, a sign, they said, of many infections. Incredibly, having been increasingly unsteady on her feet, to the point where she was more or less full-time in her wheelchair outside of the house, R is walking well again. It feels like our own small miracle.
So now that these evil tonsils are out of the way, we can concentrate on getting R properly better. If only she would eat…