Friday, 20 December 2013

Christmas Miracles....In Unexpected Packages

'Tis the season for miracles, and in our house they seem to have come in rather unexpected packages.

Anyone who reads this blog regularly will know that Adam does not sleep.  In fact Adam does not sleep with such great success that nobody else in our house sleeps either - nor does anyone in our vicinity on the residential college corridor where Adam and I spend half of every week.  It is an exceptionally good night if Adam is *only* up twice.  It's far more normal for him to be up anywhere from four to nine times and, sometimes, to be up for the whole night.  

He is two and a half years old and his sleep pattern is worse than a newborn baby.

I find it mildly amusing that, while pregnant, people were warning me how difficult the first few months would be because of the disturbed sleep - they used the word "months".  It wasn't until after his birth and into his first year that I heard some parents telling me their children had taken years to settle into a more sociable sleep pattern, but most of these were looking at this from the perspective of (now) having teenagers, so while they fully empathised with our situation, even they were past the point of being in regular possession of grey faces and bags under the eyes to rival balloons.

Over his two years of life, we have been given numerous suggestions for what might be causing Adam's disturbed sleep - the first was sensory deprivation and that his dual hearing and visual impairment meant the darkness and silence of nighttime was the equivalent of this because even the ordinary sights and sounds that he may pick up would be significantly reduced.  Then the suggestion was that his asthma and the resultant coughing was keeping him up (this one is certainly and obviously true from the number of middle-of-the-night hospital runs we've done).  But finally, and recently, it was suggested that Adam's delayed social skills related to autism might be contributing to the disturbed sleep.  He may be unable to naturally learn the usual social skills a child develops to understand that when the house is dark and quiet this means his family are asleep and so should he be.  This was the first suggestion the autism might be a factor.


But just this week, during a marathon of hospital check-ups (preplanned because it was the first week of my college holidays so without commuting to Nottingham, it was easy to get around his consultants in one block) we were asked what seemed to be a very simple question by a nurse-practitioner filling in for one of his consultant's who was on sick leave:

"...And how does Adam sleep?" she asked innocently.

By the time I *stopped* laughing and asked for a definition of the word "sleep" she was smiling too.  

She began to quiz us on Adam's sleep patterns, when and how often he wakes up and when she learned that he can be awake and needing us up to every half an hour through the night, most nights of the week, she made the most amazing suggestion:

"What do you know about Melatonin?" she asked.

When we shook our heads, she went on to explain that Melatonin is the natural hormone produced by the body which regulates our sleep patterns and that it is well known that people with autism are extremely likely to produce less melatonin than other people without the condition.  She said that Melatonin supplements are available so long as the individual meets the criteria (as in significantly disturbed sleep on a constant basis) and of course is known to be autistic.  She suggested that we could consider this as an option if we wished and then discuss it with our consultant at our next appointment in twelve weeks time....then she started to laugh as we said:

"Oh no, there's nothing to consider.  Now please.  Preferably yesterday but definitely today and certainly not tomorrow!"

Taking one look at Chris's grey, exhausted face (he's been doing all of the day and night duty for the last three weeks because my broken foot prevents me easily or quickly getting to Adam's room at night) she offered to go get one of the other consultant's who would briefly discuss it with us.  

We then learned that if Melatonin is going to work, then it's going to work quickly and if it isn't going to (because this isn't the root of the problem) then we will also know very quickly.  For this reason, he agreed to give us a twelve week trial of the hormone but assured us that we would know inside three weeks if it was going to help Adam or not.

It took us *at least* half an hour to get to the chemist!

And that night, the miracle began.


After dinner, and as directed, we crushed a Melatonin tablet, mixed it with warm water (not the best solution, yogurt works better as we discovered on the second day) and gave it to Adam.  Admittedly, he was already very tired so it wasn't too surprising that he was starting to nod inside half an hour (the ideal time to give it is an hour before bed).  But here's the thing:

Adam fell asleep at 7:30pm and he slept, without disturbance and without even needing Dumbles until 4:30am!!  

By this point, he was wide awake and bouncing:

"Mummy, Daddy, is it morning yet?  I've had SUCH a good sleep!  I'm quite certain it's time to wake up!  Mummy, Daddy come now please! Right now!  At once!  This instant!  I Am Awake!"

We weren't quite so convinced it was morning as 4:30am is 4:30am no matter how much sleep you've had, but then we looked at the clock and realised it wasn't 10pm or midnight or even 2am as we've come to expect but 4:30!  

Adam had slept for NINE hours!  NINE!

What WONDROUS miracle is this????

So yesterday, I started doing some research. (Yes, I did give my child a drug *before* researching it - in the circumstances, wouldn't you?!) I found the Autism UK website (http://www.autism.org.uk) where they had published an article stating that:

"Learning to sleep through the night is something all children have to do. But for children with autism, it can often be a difficult and seemingly impossible process. This, in turn, can have an enormous impact on their families. This guide explains why your child may have a sleep disorder, and what you can do to give them, and you, a more peaceful night...

By the age of one year, most children should be sleeping through the night. If after that time your child is regularly unable to sleep or if they have a period of good sleep which is disrupted then this constitutes a sleep disorder. It is important to be aware that all children are likely to have brief periods of poor sleep after illness, during holidays and festivals like Christmas or during periods of particular stress, such as exams or if somebody close to them is ill. After events such as these a normal sleep pattern should be established again within a few days. " Source: Sleep and Autism: Helping Your Child (Autism UK)


The suggestion we had previously received on social cues was included as they said:

"Children with autism may have difficulty understanding why and when they need to sleep. Problems with social cueing - that is learning why and in what order things should happen are common in autism and this may mean your child does not make the connection between their family going to bed and their own need to sleep." Source: 
Sleep and Autism: Helping Your Child (Autism UK)

But then came the key part:

"Melatonin: This is a hormone secreted by the pineal gland which has been shown to regulate sleep patterns in animals. There have been studies conducted which have shown that taking melatonin supplements can help to ward off jet-lag after long journeys. It is also thought that in children with autism, their patterns of melatonin secretion may be irregular so it is not that they don't produce it but that they don't produce it at the right times of day." Source: 
Sleep and Autism: Helping Your Child (Autism UK)

This really felt like an absolute EUREKA! moment (and yes, if I had been in the bath, I would have been tempted to jump out of it...) because this just makes sense. We knew *something* was waking Adam up and despite wondering about any combination of sensory deprivation, social cueing, asthma, nightmares and the desire for the comfort of Dumbles, there just seemed to be something we were missing because no matter *what* we did in an effort to comfort him, Adam was still waking up.

But the first night on Melatonin? Nine hours sleep. The second night? Admittedly there were two wake-ups, one caused by a rogue cat rustling about on the windowsill and the other by an asthma related coughing fit, but after falling asleep at 7pm, Adam stayed in bed until 6am.

Yes, you read that right: ELEVEN hours of sleep.

I haven't had that much sleep in nearly three years!

Do you have any idea how much better we feel today? There is some small part of us that is beginning to feel vaguely human again, and this after just two days.

Is this our Christmas miracle? If so, then Happy Christmas, because this is fantastic and could truly revolutionise our lives. That simple miracle of sleep only seems simple when you can get enough of it.

So, a toast to Melatonin!

And Happy Christmas :-)

4 comments:

  1. My niece is 9, she was prescribed Melatonin in the summer after years of not sleeping well, and often being awake till near midnight most night. She's got several issues, no definitive diagnosis (she had a stroke at birth and the ongoing issues have been..In a word, complicated and increasing over the years) but the label autism has recently been mentioned.

    Melatonin has been a miracle for them too. So glad you are rediscovering sleep.

    Merry Christmas and Silent Night!

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  2. This is so encouraging to hear, thank you Leila! I truly hope melatonin keeps on helping your daughter and therefore you as well. Merry Christmas :-)

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  3. Praise God from Whom all blessings flow!!

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  4. ...and in this case, praise the NHS too!!!! ;-)

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