Wednesday, 9 December 2015

Our melatonin mission - autism and sleep


Our eldest son, Anthony, was never a good sleeper.  He was diagnosed with ASD about three years old just shortly after we had our second son David. Anthony has problems going to sleep, but David's a whole other ball game. He can't stay asleep. He's up for several hours in the middle of the night nearly every night. 


Ultimately this means at least one of the boys is tired and I can count the number of full nights sleep I've had in the last eight years on my hands.  Given that we still have to all function, get up, go to school etc, and after having exhausted all other avenues, we've turned to melatonin.

Melatonin is a hormone that helps to regulate the body’s sleep-wake cycles. It's not unusual for children with ASD to have sleep issues. We have tried sensory things like heavy blankets, lights, squeezing made well trialled routine changes. If none of this works then depending on results of a sleep diary you can be prescribed melatonin. 

We've been prescribed slow release tablets. Given David's restricted diet I was fairly sure he wouldn't take a pill. Of course I was right. We can crush the tablet and mix it into a bit of food with a strong flavour like flapjack. The problem is once it's crushed it is a full dose in one go. The slow release seal is broken and David gets a nights worth of melaton in a single shot. 

Giving this to David at bedtime knocked him out within 20 minutes but then he would wake up in the night as normal, sometimes more awake than before. Last week we started waking him in the middle if the night to give him this does then. It worked. When he took the melatonin as we went to bed he would still wake at night but he could get back to sleep again quickly. 

Trouble is it's really difficult to get David to consistently take the melatonin. He has no idea why he is being woken up to have something stuffed in his mouth. Most if the time it's a pin down and syringe a yogurty melatonin mix into his screaming mouth. It's honestly awful. 

Grandma found a liquid drop form online but we are pretty nervous about an unregulated product. So this week we are waiting for a call from our Paediatrician to see if they can recommend a safe alternative.  It would be great for us to go to bed again with the potential to get a full nights sleep. 

Links
Our blog - Five ways to get sleep with autistic kids

External links

NAS - Sleep issues

6 comments:

  1. I know this problem all too well, my son Jude is exactly the same.
    We have tried melatonin on and off over the last 4 years, and it is only recently that we are starting to get some consistent sleep patterns.
    We crush the tablets and put them in a small amount of orange juice. Within 20-30 minutes Jude will be asleep, and at the moment (fingers crossed) he will stay asleep 5-6 nights a week. (He does wake 2 or 3 times in the night, but usually can be laid down again and go back to sleep if done quickly enough)

    I can imagine how awful it must be waking him up to take more, maybe it's the initial dose that is the problem. We thought it would never keep him asleep all night, but after upping the dose it seems to be working right now.
    Sleep is so important to all of the family, I hope it gets better soon

    Good luck
    #spectrumsunday

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    Replies
    1. We've never actually tried giving a does at bedtime and in the night. Just one or the other. It's 2mg at the moment, I wonder if we could try half and half. Thanks for the idea.

      We are about to run out, desperately trying to get hold of the paed before they run off for Christmas! xxx

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  2. Oh, that sounds awful. I'm really lucky that the boys are relatively good sleepers. I mean, sometimes the day starts at 4am or I have to sleep on Tyger's bed for a few hours but I know it could be so much worse.

    I really hope you find something that works and is easier on all of you. Good luck.

    #SpectrumSunday

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    Replies
    1. We have a pull out mattress under David's bed so I can lie on it if he's jumping around his bed

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  3. Oh, this certainly sounds familiar. I'm not sure we would ever get prescribed melatonin though as Hayden generally goes through stages. But it does seem to be getting worse. If he is asleep before 8pm there is a 99% chance he will be awake again by midnight, and will not sleep again until around 6am. Even a later night can mean this. Most nights he isn't asleep until at least 10:30, sometimes as late as midnight, and we cannot put him to bed. We have to let him fall asleep on the sofa. I hate it, but otherwise we have serious meltdowns causing the other two boys to wake up. Unfortunately for my husband, I am a really heavy sleeper, so once I am asleep that is it, which means he ends up dealing with it most nights. Thank you for linking up to #spectrumsunday I really hope to see you again this week xx

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    Replies
    1. Im the lighter sleeper, it's me up unless I'm absolutely exhausted (which happens more than it used to). We've made upstairs safe so he can't really hurt himself and if he falls back asleep with us, then no matter what health visitor says we let him - if he sleeps we sleep so we will move him afterwards.

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What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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