Thursday, 21 July 2016

Fragile X Awareness month - Day 21

Not all Fragile X people have problems with sleep, but it is certainly quite common. My kids, of course, fall into the sleep problems category.


For the first 2 years of Connors life we didn't know we had Fragile X so I was just trying to figure out why he wouldn't sleep for more than 2 or 3 hour intervals. We spent a week in a sleep clinic, I tried every book, googled every strategy, I became a sleep guru. Anyone other than Connor could walk into his room and instantly fall into a coma. :)

Then Merryn was born and she did the same thing. Somewhere in there I completely lost my mind.
Finally after about 2 1/2 years of this we found out about another specialised children's sleep clinic, and after waiting the obligatory 6 months on the waiting list we staggered in. Well actually I staggered in, the kids as always were bouncing off the walls.

When you arrive at these clinics the first thing they do is get a junior Dr to do an interview with you. Essentially they go through a check list to see what you've tried so far. In my case I'd tried everything on their list infinitum. When the senior Dr finally came in the hand over was brief and she turned to me and said, 'Well I don't usually recommend medication on the first visit, but you have already tried everything else.'.

So for the past 4 years we've been using melatonin every night to get them to sleep. Which now works pretty well. As for staying asleep, well even the experts have given up on that. Apparently some people just don't need a lot of sleep (I've been told). So the day starts somewhere between 2am and 5am, and if we're lucky there weren't any other wake ups earlier.

www.fragilex.org.au

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