It’s almost a month since I last posted. G suggested that I might want to censor some of the gloomier posts for the sake of the reader. Right now, it feels that by doing so, I might just as well mothball the whole blog. From a selfish point of view, I find sharing our experiences here cathartic. But I also think that giving a truthful account of our life with Rett syndrome is only fair to R.
It’s not that nothing good has happened recently. R enjoyed Christmas. She loved her hot pink headband with built-in headphones and her little night light, which projects blue and green stars on her ceiling. She enjoyed the pantomime and going out for dinner afterwards. Tonight, R laughed through the whole of James McAvoy’s CBeebies Bedtime Story (anyone who has ever heard R laugh will know that it can really make your day). But all the good stuff has been tempered by the fact that she is still unwell much of the time.
This week has not been a good week. On Monday, R stopped breathing. Not for long – 30 seconds maybe – but it happened several times and each time I laid her down. This was not her usual breath holding. This was something much scarier and she was unresponsive when it happened. We decided to take her to hospital (on the way in, she stopped breathing again and I had to stop the car on the hard shoulder of the motorway. In retrospect, I think that I should have called an ambulance).
It’s not clear that these episodes were related to her epilepsy, nevertheless that her seizures remain uncontrolled is a cause for concern. Her medicines have been changed again. Given that her epilepsy is proving hard to control and the periods of not breathing, I was counselled again about Sudden Unexpected Death in Epilepsy (SUDEP). We were advised to consider an anti-suffocation pillow and that it may be beneficial to obtain a monitor which will check her oxygen levels overnight. The potential benefits of a gastrostomy tube in ensuring that R gets her full dose of medication were once again discussed.
I’m trying to be rational. There is no point in being paralysed by anxiety over this. SUDEP is very rare. Realistically, R is at low risk of suffocation because, while they can be very frequent, her seizures are typically quite short at present. But it’s incredibly difficult to set this worry aside altogether.
Rett syndrome is considered by clinicians to have 4 stages. R is in Stage 3. This is known as the plateau stage. It’s mis-named.