Sleep deprivation the dark side of Rett Syndrome

Since September we have been in a terrible sleep cycle with Reilly. Prior to September we have had it pretty good on the sleep front, with little blips only here and there, for almost 3 years.  It actually was London that caused us the greatest grief and only recently at close to 6 years of age she is now either sleeping through the night or only getting up once to go the bathroom. For some reason she has to let us know each and every time she goes to the bathroom by using our master en suite bathroom and coming to the bed to indicate she has to go, even though we have repeatedly have encouraged her to use the other bathroom and that we don’t need to know.  Big sigh.   In the first 3 years of Reilly’s life we have been to hell and back with Reilly’s sleep patterns and behaviour.  At first the night-time laughter was cute but then it quickly became psychotic coupled with inconsolable hours of crying and screaming. We honestly thought at any given night we would experience a knock on the door from the police, concerned that we might be trying to kill or abuse our child.   A period of time that I would like to forget especially since it almost broke both my husband and me – not our relationship but our respective sanity. However, last night was reminiscent of this earlier time which only brings back nightmares.

There is no question that my husband and I are suffering from sleep deprivation.  It is well noted that sleep deprivation can cause numerous different physiological effects and here are the ones that I can check off:

  • memory issues
  • hand tremors (last week had one episode that totally freaked me out)
  • headaches – I have been have a lot lately, very unusual
  • malaise – motivation to do much of nothing
  • sensitivity to cold – interesting for my office is notoriously cold but I think I am hypersensitive to it because of lack of sleep
  • irritability – absolutely
  • weight gain – check but that could be due to Christmas as well
  • dark puffy circles under the eye – absolutely

My new best friend…coffee. I started drinking coffee only recently and have quite the habit now thanks to Rett Syndrome. LOL.

Last night, Reilly went to bed around 7 pm for she was very, very tired and it was hard to keep her up any longer. She had a bed time snack with protein to address any possible nighttime hunger issues.  At 1:05 am she first awoke and as it was my “night” I went to her. Lately she has been occasionally waking up with a BM (bowel movement) but the smell check and feel on the outside of her diaper didn’t indicate one, so I cuddled in behind her and applied some gentle pressure over her. Sometimes this works where she will melt into your own body and go back to sleep.  When this happens the minor sleep disruption is soon forgotten as you bask in the warmth and comfort or her little body.

Instead of checking in with the sleep fairies though, Reilly continued to chirp away but there was a little irritation in her chirp which just grates on your nerves. Especially when you are already tired.  Hoping that she will get back to sleep in just a few minutes I stayed silent but prayed hard she would give in soon.  Within a 1/2 hour I knew she was wide awake and we were in another ‘zone’ where going back to sleep naturally any time soon is not in the cards. So I decided to give her a dose of Chlorahydrate in apple sauce (doctor approved). I gave her the regular dose which usually would put her out in 20 minutes  but nope. No effect. WTF?

By 3.00 am I couldn’t take it any longer and went back to my bed frustrated, tired, and feeling helpless but before doing so I turned on a tv in her room.  This tv is used sparingly and only for these extreme situations. Unfortunately she kept chirping LOUDLY and it was challenging for both husband and I to (stay) and fall back to sleep.  We decided to give her another dose of Chloradhydrate but this time it was Mike’s turn. So Mike gave her another dose which surely should have knocked her out and then some.  I can’t remember when Mike returned back in despair and resignation himself for she fell asleep but only for a 1/2 hour. These two doses should have knocked her out and then some but nope. By now it must be well after 4.00 am.

Reilly eventually fell asleep at 6.15 AM but by then we should be well up and at our usual morning routine.  Since Reilly was asleep and I had a big work day ahead, I decided to adjust my schedule and try to get  a little sleep in from 6.15 – 7.30 am.   Our sitter was coming at 8.00 am as the girls are still off winter break from school. I was prepared to tell her that Reilly would be out most of the morning given what we gave her but wouldn’t you know it by 7.45 am, Reilly was up.

Last night has been the worst night in the last few months but almost every single night Reilly has one of us up a few times off and on through the night, with a new wake-up time of just after 5.00 am even on the weekends. Given that both Mike and I work and trying to keep juggle an already busy schedule we are slowly unravelling and if we don’t get relief soon with Reilly’s sleep we will have to do something different. Whether it involves me quitting my job, negotiating part-time hours, or checking into an insane asylum, scratch the last one-off for that wouldn’t be fair to Mike 🙂 something has to happen or else one of us will explode.

The sad thing is that sleep issues are not uncommon to girls with Rett Syndrome and many other syndromes/disorders are affected by severe sleep disturbances but the toll is not restricted to the child or individual but rather affects the whole family.   When you are in this dark period it is hard to think of the bigger picture. It is hard to stay positive but for what energy you have within you must be rationed just to get you through the day, one foot in front of the other. Rett Syndrome doesn’t just rob you of your child but at times like this it robs you of a life.  There is no question though we will keep fighting through it.


2 thoughts on “Sleep deprivation the dark side of Rett Syndrome

  1. I just read your story. Our daughter has been sleeping well for years and we are now experiencing what you are but based on our previous experiences with her this indicates seizures medication imbalances. Im not sure if your daughter is on seizure medications but if she is it is worth looking into and if she is not maybe doing another EEG. Have you tried melatonin slow release? Epsom salt baths and white noise sleep machine, you become desperate and will try anything dont you? I am in Australia but am happy to give any advice if I can, my daughter is 10.

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