New year, new worry

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.

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7 thoughts on “New year, new worry

  1. I say, write whatever you want. If ppl don’t like your gloomy days – screw them, they can keep scrolling. Let your heart guide your words. Nothing else matters.

  2. Oh I feel for you. I too was worried about how depressing my posts were becoming, but it’s how our lives are… We have emergency meds, oxygen, oxygen saturation machine and I’ve lost count of the number of ambulances we’ve been in. What I will say is that the Gastrostomy (now a gastrostomy/jej tube) has made a HUGE difference to both our everyday lives and how we can manage emergencies and when Jess is ill… Obviously each child is different but we couldn’t be without it now. Thinking if you, Liz .

  3. Oh, and we have an apnea alarm (just a normal one sold in Mothercare for babies) which has alerted us several times when Jess has stopped breathing with a seizure at night- I don’t think I would get a wink of sleep without the reassurance that this is in place!

    • Thanks so much for this. I’ll definitely look into the apnoea monitor. We hope to get a SATs monitor but we are going to have to seek charity funding for one of these because they are hard to get funded on the NHS. Sometimes, I really wonder about the prioritisation of spending.
      I was over on your blog and coincidentally landed on the post where you were talking about depressing posts and how you have a whole bunch more that you have never published – oh, me too! I also have posts that I can no longer publish because R’s condition has evolved so rapidly that they are no longer relevant. Those in their own way are depressing too.

  4. Please share all experiences regarding our adored Romi. Selfishly, I feel I need to know to be in touch with this bright intelligent and beautiful soul whose smile and laugh have brought sunshine to many a gloomy day. xx

  5. Please don’t stop blogging G & G, apart from everything else you’re bringing an understanding into the lives of people who otherwise wouldn’t have a clue. Thinking of you all, Catherine x

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