The top 5 things you need to know about Melatonin

I hadn’t planned to blog on this topic tonight, there was another one in the schedule. But sometimes the stars align and we experience a massive parenting #fail, which deserves to be blogged about! You see, we have run out of melatonin.

Yep.

I told you.

Massive. Fail.

I have been singing its praises and now I clearly remember why. Poss is tossing and turning in bed, having been there for over an hour and a half. I know it’s that not long, but trust me when I say it will be the tip of the iceberg tonight. She is hyped, tense, flappy and stressed and is demanding her ‘meddy’.

And I can’t give it to her. Because we don’t have it.

For those of you who don’t know what melatonin is, or why we use it, here are my top 5 things you need to know…

1. I am not a doctor. I know melatonin is available over the counter, but we have it on prescription and it is made up by a compounding pharmacist. This means we have it noted in her medical files that she is using it, and if at any point we have any concerns, we have a professional on hand who can answer our questions. So, while I offer these suggestions, it’s purely from a parents perspective, not a medical professionals one.

2. It’s effectively a hormone replacement. You can read more about the technical/medical definition here, but from my research  it is safer than other ‘medical/pharmaceutical’ options for non-sleeping available, with few known side effects (although longer term, clinical studies are still to be completed in children).

3. There are studies to show that there is a link between people on the Autism Spectrum and a lack of melatonin in their bodies. For those who experience this, it directly effects their sleep patterns, meaning the ability to fall asleep and stay asleep is compromised. This can result in a huge increase in stress levels and anxiety surrounding bedtime, which of course, decreases the ability to fall asleep.

4. Despite these links and our years of sleep issues, Poss’ paediatrician insisted that our psychologist teach Poss self-calming techniques, (along with the techniques we supplement from her OT), before she would consider prescribing melatonin. Those are skills Poss will always have, and we are using those strategies on nights like tonight, when we #fail and are left without it.

5. She now sleeps. And not only sleeps, is asleep within 15-20 minutes on average and most nights she sleeps through. From where we were, this is a HUGE improvement. HUGE. And as a result, she functions, she copes and is generally more pleasant to be around.

sleeping poss in the car

If your kids are on the spectrum, do you use melatonin? I would love to hear about your experiences with it.

Have you ever failed like us? Please tell me you have… it will make me feel better!

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Comments

  1. Nee Say says:

    I have absolutely no concept of what you are going through right now but just wanted to let you know I’m thinking of you & Poss & I hope you both get some sleep tonight x
    Nee Say recently posted..{Grateful} for my pit crewMy Profile

    • Renee says:

      Thanks so much lovely. We are now approaching hour 2. Absolutely kicking myself for letting it get to this point… will never happen again!! xxx

  2. oh wow!! I fight to get MissC to sleep within an hour.. every night.. so I know what you would be going through tonight!

    If you can get it over the counter.. can u not go to a late night chemist? Or is it specific prescription based one she needs.

    Hope she sleeps!! xx sending you my love xx
    Yvette @ DTlilsquirts recently posted..Easter Bunny Review + GiveawayMy Profile

    • Renee says:

      Thanks lovely – I really appreciate it. We do have a prescription one, so unfortunately we are out until we can get another script repeat and get the compounding pharmacist. *sigh*

      Husband has gone to bed with her, in the hope that she sleeps… fingers crossed xx

  3. No idea about this one, but I do know what it is like to run out of a daily medication type substance that your child finds helps them.

    Hope all is back on track tomorrow.

    Xx
    Claireyhewitt recently posted..Thoughts from my head when doing the grapevineMy Profile

    • Renee says:

      Thanks Claire… it’s just a major fail on our part… no excuses… too relaxed about it all I think! But do feel better knowing I am not the only one…
      xx

  4. I read this at 2 am as I was up with a 4 year old who thought it was better to be awake than asleep.
    That was after I had been up till after 10 pm with her 6 year old brother who most nights is not asleep before 9 pm.
    We don’t use Melatonin.
    But it is often sitting in my thought bank in the back of my head
    Should we / shouldn’t we.

    It is a big step, and one I am willing to take but I just want to make sure it is the right one for us.
    Sarah @fignutmum recently posted..Have you checked the car seats lately?My Profile

    • Renee says:

      Thanks Sarah….It is something to put serious thought into. There are studies that suggest that once you start a child on melatonin, it can be almost impossible to take them off it, meaning you are stuck with it. But in saying that, if it brings sleep and it brings it regularly, then it’s a risk we are willing to take.

      If you have any other questions, don’t hesitate to ask. I am always happy to help out where I can… xx

  5. Kate Sins says:

    Sending you big hugs and hope you and Poss got some sleep. xo
    Kate Sins recently posted..Second time round I’m not so tough…a confessionMy Profile

    • Renee says:

      Thanks Kate. She did. Eventually! We have it back tonight, so fingers crossed she will fall asleep soon… xx

  6. Hannah says:

    Both our boys use it and love it.
    Without it the eldest will lie awake until 3 am getting only an hour or two of sleep.
    The youngest is an over tired emotional wreck unmedicated.
    It has been a life saver.
    Melatonin that is available over the counter is not the same as the script version you get in Aus!
    However what you need a script for in Aus is available cheeply and over the counter in most of the world! We buy ours online for a fraction of the cost here (its also an off label treatment for kids with ASD in Aus putting us miles behind the UK).
    My advice is try it, even if your N.T., it’s worth it!
    oxox
    Hannah recently posted..Australian History?My Profile

    • Renee says:

      Thanks Hannah – I am so with you, in that without it, Poss is also an emotional wreck… I never knew you could get it online… we might have to swap details!! ;)

      I have often heard that Aus is behind the UK in treatment for ASD. Makes me wonder how our government can hold their heads high, when other countries do it so much better, yet we are considered the lucky country.

      And yep, NT’s can use it. It’s prescribed for those travelling to help with jet lag and for those suffering insomnia, so if you are having issues it might be helpful there too.

      • Hannah says:

        I use it as one off, if I’ve had a spell with bad sleeping habbits etc..
        It’s awesome!
        Google World Wide Labs.
        I dont think many people in our gvmnt are holding their heads real high in this current climate..
        oxox
        Hannah recently posted..Big DreamsMy Profile

        • Renee says:

          Hmmm – good point lovely!! You are probably right in relation to the head holding thing…
          In the meantime, I will be googling my fingers off! Thank you xx

  7. Sooze says:

    Kids with neuro challenges don’t sleep well either. Sadly Melatonin didn’t work for us. Neither did Chloral hydrate which is a common Pre med before surgery! Fortunately Mogadon does work so we get some sleep. I’m glad melatonin works for you as it’s more natural than other options and I hope you don’t run out ever again!

    • Renee says:

      I totally agree, it’s not just kids on the spectrum that struggle with sleep issues. Can I ask, is there another medical or anxiety issue that is causing it? I am pleased to hear that you have found something that works. And yes, we have now put things in place with our pharmacist and doctor so it doesn’t happen again!

      • Sooze says:

        Thanks for asking so politely! Yes, my daughter has multiple and severe disabilities due to oxygen deprivation. Add vision challenges to her list of issues and sleep is a huge problem! I’m glad you have averted any future melatonin shortages. :)

        • Renee says:

          Wow Sooze, that is a lot to deal with and I can totally understand your desire to make sleep happen. Kids cope so much better when well rested (well we all do, but kids in particular) and with the extra challenges your daughter is facing, I would be doing exactly what you have done – looking for anyway in which to make it easier for her.

          Thanks for responding and I look forward to hearing more about your daughter and your challenges xx

  8. My little one is almost 4 and she had great sleep til about 3 months ago. Instead of 12 hours we now get lot’s of interrupted sleep. Up at 1 and talks and talks and then quiet and up at 3. ugh. We are thinking about melatonin but our issue also is just getting her little butt to stay in BED! Ugh. She learned to climb out of the crib so that was a sad good bye when that happened. Now we just let her get out of bed, fall asleep at her door and then put her back in bed. It’s working and there is no loud crying spats at our house now.

    • Renee says:

      Bedtime battles and staying in bed is so hard… we had very similar issues with Poss – and actually still do. She is currently co-sleeping with us because she simply won’t stay in her bed.

      If it’s working though, with her falling asleep at the door – then I would continue to go with it!! It might sound silly, but sometimes you just have to pick your battles I guess… anything to avoid the upset and distress of bedtime. And I promise, she won’t still be sleeping at the door when she is 15, so don’t stress over it!

  9. Lisa says:

    I believe you are the first person I have run into that has the same problem as we have had. My daughter started having sleep problems when she turned 9 (she is now 11). I also noticed at the same time that her hormones were starting to kick in on her way to puberty!!! When she turned 10 it seemed like the melatonin stopped working as effectively and found out through deduction that she needed magnesium/calcium. She had just started doing a lot of physical activity and she could not sleep!

    From all the problems we were having (we have homeschooled since 3rd grade) I realized that not only is she gifted but also had a learning disability (2e child – Twice Exceptional) but not until last year did I discover from my researching at the library and online that she is PDD-NOS.

    I didn’t realize that you could get a prescription for melatonin..thanks for the info! Do you use a time-released form of melatonin?? Our first pediatrician had recommended this….and how many milligrams a night does your daughter take?

    Thank you for your blog!!! It’s so nice to find someone with some answers!

    • Renee says:

      Thank you, firstly, so much for your kind comments. I am really so pleased to hear that my blog is helping people – I guess that’s why I started it in the first place!

      It sounds a lot like you have travelled a similar road to us. Poss is also in the gifted range, but struggles with lots of academic aspects, which initially we couldn’t work out why… now we know.

      We don’t use a time-release Melatonin, only because our issues relate primarily to getting her to sleep, as opposed to night waking. But if you are struggling with that, then I would certainly be looking into it.

      I have been told that puberty will be a hard transition for her… I am not looking forward to it!

      Thanks again for commenting and I look forward to you sharing your journey with us as well!

      • Lisa says:

        Concerning the puberty issue, I have found that Serena was a different child during her period. It amazed me…she was as normal as anyone and excelled at her school work once again! But, she really just started her period and only had one in the last 3 months! I await the next one eagerly to see the difference.

        So, it may not be as bad. I have always believed that the hormones were part of the problem…that’s when the sleep and other issues started. Her Pediatrician checked her hormone levels and the test came back normal, but I realized afterwards that it was taken during her period and wanted to take another test…but Serena had such a hard time with needles….it took 5 people to hold her down! So, I really didn’t want to put her through that again unless we really, really needed to!

        I am so glad that I came across your article. It is so nice to be able to have someone to connect with who understands!! :D

        • Renee says:

          Thank you again for taking the time to explain all this to me. We are a few years off it all – so it’s great to hear from others that have gone before me!

          And I totally understand about the needle thing. I dread having to go through that with Poss (and thankfully rarely have a need to).

  10. Amber says:

    Hi there, just wanted to let you know that I have failed many times when it comes to the melatonin. I have two boys on the spectrum and both take melatonin at bedtime and this is an absolute lifesaver for everyone in the household. They are much more pleasant children in the morning and they sleep so much better and usually through the night!!!

    • Renee says:

      Thanks so much Amber – it does make me feel better to know we aren’t alone when we do things like that! And I agree with you totally, it’s amazing how much happier they are after a full nights sleep.

  11. Heidi says:

    I followed a link from a Pinterest post to your post ~ and I was afraid this was going to be a ‘5 things AGAINST Melatonin’ post, so my palms were LITERALLY getting sweaty. How glad and relieved I was to read NO BAD NEWS. I’ve taken the same steps you have and come to the same conclusion ~ and chuckled when you said “she’s been in bed an hour and a half and I realize its not that long…” because I HEAR YA!!!! THREE HOURS is long, and haven’t we been there?! I forgot how I was first introduced to Melatonin, but bless the circumstance! I can’t imagine living without it. I just.can’t.imagine. Thank you for contributing so positively to the community. So much out there is negative and its so helpful to us and our kiddlets when these great helps are shared.

    • Renee says:

      Aww thank you so much for your post Heidi! And yep, 3 hours… it was actually 3.5 hours that night before she went to sleep, and even then it was only because I went to bed with her that she actually went off.

      Yes, bless the Melatonin gods!!

      I hope to see you around the blog some more – I always try to be positive, even when it’s a hard topic, there is always a silver lining or a lesson to be shared.

  12. mandy says:

    Hi,
    Just wanted to add I do know what you are going through I am a mother of five two (14 yrs old) are on the spectrum (aspergers) I fought for year through many medications with or better yet for the boys just needed a good nights sleep!!!! I had found out through a family friend also parenting a autistic child about melatonin and how wonderful it worked with her child so of course I had to try it so ran to our local pharm. and found it (fairly cheap too) and after 12 yrs. of fighting they finally feel asleep and stayed asleep!!!! It was wonderful !
    Thank you for sharing and please know ur not alone in this fight many of us out here going through it to so again thanks for sharing any and all ideas :)

    • Renee says:

      Thanks for taking the the time to comment Mandy. It really is amazing at how much it effects your life, isn’t it?! Suddenly we have a girl who sleeps and copes with things so much better.

      And thank you – writing this blog has bought so many other Aspie and Autie parents into my life – I am loving hearing all your stories. It does make me feel less alone. :)

  13. Michele Hill says:

    Yep. Liquid gold around these parts. Lifesaver. Plan with military precision to no run out due to fear of my little guy taking 3 hours to fall asleep only to be wide awake again from midnight to 5 am literally bouncing off walls and scripting, doing somersaults etc
    Michele Hill recently posted..Taking my girl to meet Sally RippenMy Profile

  14. Sharron Redmond says:

    I am wondering if I should ask my specialist about trying this for myself , even at 41 having severe anxiety disorder and Bi-Polar 2 ( more downs than ups) I have horrible trouble sleeping and have to push myslef to get into bed before 2am then am awake for usually an hour then again about 6or7 am and and tired all day . This Melatonin might be the answer for me too .I have an appointment in a few weeks so I will ask then .Thanks so much

    • Renee says:

      It’s well worth an ask Sharron. I know it’s often prescribed for adults who have issues sleeping, so you might find it helpful. The change in Poss when she has it, compared to when she doesn’t, is amazing.

  15. Oh Renee, that is such hard work! We didn’t use melatonin as sleep wasn’t an issue for J-man after age 4, but both he and I have medications that we need daily or the wheels FALL OFF! A few times I have dropped the ball and forgot to fill scripts in time, in our little town there is no late night chemist (and one opens for 2 hrs on sunday morning) Have shed many tears in frustration at my lack of fore sight. Hoping you guys have managed to get back on track. xxx

  16. Sarah says:

    My youngest son has never slept. His paediatrician has suspected ASD since he was 18 months old – my eldest has aspergers but has never had sleep issues. My youngest has had terrible tantrums and behaviours and was generally up and wide awake either high as a kite or screaming wildly, pretty much all night every night. Literally. It was awful and neither me or my husband could function properly. I feel like I effectively lost 4 years of my life because I was in such a state. The paeditrician prescribed melatonin – it changed our lives. He would actually go to sleep! much as he didn’t (still doesn’t) sleep through, it meant we could have an evening, and get some sleep. The OT also gave us a weighted blanket, which over time has really helped increase the length of time he will stay asleep. We still have some awful nights. And some good nights.

  17. Linda Yates says:

    My Daughter is now 20. It took us years to realise she was on the spectrum. Her sleeping was so poor until she went on to melatonin at age 11. It made a huge difference. Sadly, when she was about 14 and started to develop even higher levels of anxiety and severe mental disturbances, we ran out of melatonin and couldn’t get any for a few days. This precipitated a psychotic episode! So I have never run out of melatonin since! She has been on it for many years now and I do worry about the long term consequences. She has severe pmd and I wonder if some of that is caused by the melatonin. But we are all too scared to give it up. I wish it had been around when she was younger. It might have saved years of despair. I wish you well on you r journey.

  18. Tegan says:

    I remember you talking about melatonin a couple of times on twitter but I didn’t realise that you had written a post about it until I did a google search and your post popped up.
    We have been having sleep issues on and off for the last 2.5 years with Mr 4. Before that he was a perfect, two naps a day, twelves a night self settler. Now it takes 3-4 hours for him to go to sleep, and it’s often well past midnight before any of us get any sleep. This is having a flow on effect on my own mental health. I took him to our GP a couple of weeks ago and we have a referral to a paed and psychologist to find any underlying issues. One of the things suggested were melatonin and so I have been doing some searching to find any info about it I can. Mr 4 is a completely different kid when he gets a decent nights sleep and I am looking forward to getting my nights back!
    Tegan recently posted..Merry Christmas From Musings of the MisguidedMy Profile

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