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Sleep - melatonin and sleep systems
 

sarahbrisdion

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Joined: 2015-02-10 Posts: 32
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Hi everyone
I’m sure so many of you are in the same boat, but we are really struggling with sleep with Hadley. (He has quad CP)

He has recently been prescribed melatonin and it doesn’t seem to be making any difference. He is on 2 mL before bed (he has it in liquid form), my question is does anyone find it is helping their little one and if so are you on a large dose, do you give it during the night too? Or are you using it in tablet form? I want to go back to the doctor and see what the next step is but my gut feeling is it’s probably not an issue with melatonin that he’s struggling with.

My other question is about sleep systems. We have also recently been given a whole load of cushions and inserts and things to go around Hadley’s knees to keep his legs and hips at a better angle and it’s all a bit overwhelming for him and he doesn’t like any of it touching him or restricting him. Therapists are convinced he is getting uncomfortable at night and he would benefit from being better positioned, but he likes to roll over and he likes to lie on his side and all of these things seem to stop that - he gets really upset by them and therefore won’t currently use any of them.

I don’t want to just say it doesn’t work for us. I’d like to try to introduce things slowly, but how do I convince him? Any advice? What are other’s experiences? Did you have child that liked to move around a lot but who now sleeps better from being better positioned with less freedom to move? How did you get them to tolerate it?

Thanks so much.
S XX

14 November 2016 04:24 PM # 1

Angelyn

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Joined: 2015-04-27 Posts: 28
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I can’t speak to the sleep positioning, but we have been using melatonin with our son as well to help improve sleep at night.  I would agree that it doesn’t seem to be doing much.  He gets 2 ml of liquid melatonin at bedtime.  Our nurses have said if you give any more after that, like in the middle of the night, it won’t do anything.  So evidently the initial dose given is the one that will be effective.  We have had a great deal of difficulty getting our son on a regular sleep schedule and have tried melatonin, music, complete dark, rocking, trying to keep his nap short, etc and have concluded that he makes his own schedule according to what his body can handle.  It’s frustrating and tiring and makes us feel helpless.

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Angelyn

14 November 2016 07:52 PM # 2

sarahbrisdion

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Joined: 2015-02-10 Posts: 32
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Thanks so much for your reply. Hadley has 2ml of liquid melatonin too. I think we are just going to have to go back to the drawing board. I just don’t know what else there is to try anymore. Hope your little one settles into a better pattern. x

16 November 2016 09:53 AM # 3

Becca T

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Joined: 2015-04-26 Posts: 53
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Hiya! Sorry to hear about Hadley’s poor sleep :( I know all too well about that as my 5 yr old Brielle has struggled with sleeping consistently for a year now. She was on 3 mls liquid melatonin, there is a sustained release tablet you can get if your child can manage to swallow it (not suitable for PEG). The melatonin helped for around 4-5 months, then it didn’t seem to be helping anymore, multiple nighttime wakenings and sometimes she’d be wide awake and not go back to sleep at 4 or 5am. So we asked Pediatrician to prescribe a drowsy antihistamine called Phenergan, it’s been helping a lot (usually), but she still wakes 1-2 times per night on SOME nights, others she will sleep right thru. She started on 10mg, now on 15mg liquid before bed.
In terms of positioning, I’m not sure if it would be suitable for your little guy, but maybe a sleep sack over the positioning aid between his legs. And as you said, I’d be inclined to introduce the aids separately and slowly.
All the best xx

14 December 2016 05:09 PM # 4

Healing Heart

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Joined: 2014-10-10 Posts: 697
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I’m not a huge fan of melatonin - and in a lot of children it actually has the reversal of the intended sleep relief.  I found better success with liquid magnesium drops (not too many or it will cause a loose stool)... but it worked much better.  Hoping sleep is going better for you.

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Everyday Holds the Possibility of a Miracle

16 January 2017 12:52 AM # 5

Gaia

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Joined: 2017-01-16 Posts: 4
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Melatonin is misleading.  Our bodies naturally give us a surge of melatonin when it needs a rest.  That is why we feel tired suddenly, and realise we need to get to bed.  The critical piece of information that many people do not realise is that melatonin helps GET US TO SLEEP.  IT DOES NOT KEEP US ASLEEP.  Thus, melatonin should be used to help establish a bedtime routine.  But do not count on it to be a sleep potion.  Note that I said “BEDTIME ROUTINE”.  This is as important as giving the actual medicine.

1)  keep bedtime at the same time if at all possible
2)  have a picture board (laminated schedule that is in pictures) posted.  I would have a couple of boards actually - one in the bedroom, and one in the bathroom.
3)  Follow that routine religiously - our kids need the routine, and need to know what to expect
4)  IMPORTANT:  If using a night light (many of our kids are afraid of the dark) USE A RED BULB IN THE NIGHT LIGHT.  DO NOT USE ANY OTHER COLOUR!  Red light is the only colour of light (including white/natural) that will not interrupt the body’s natural cirdacian rhythm, as well as has the least negative effect on moods.

Once the bedtime routine has been established, and you are successful at getting some normalcy to bedtime, you can wean off the melatonin. 

As for staying asleep - I have yet to find the miracle cure for that.  I have talked to a developmental paediatrician, and she maintained that at all costs - never use sleep meds.  She stated that they would create “unconsciousness” but never send a body into actual deep sleep, and she felt that this would cause great harm to the body over time.

16 January 2017 06:12 PM # 6

Sylvia

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Joined: 2014-10-29 Posts: 21
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We used Melatonin for a while with my daughter. At first, it seemed to help her fall asleep, but she didn’t stay asleep all night. Plus we eventually made the connection that it was causing irritability the next day. In the end we stopped giving it to her because the benefits did not outweigh the grouchiness!

17 January 2017 08:29 PM # 7

Healing Heart

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I kind of gather that perhaps Melatonin is a bit more preferred or prescribed in the UK than it is in the States?

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17 January 2017 08:51 PM # 8

Gaia

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Melatonin is becoming more and more popular here in Canada.  The main thing is - as with everything - we tend to mess with biology etc.  They have now come out with a slow release melatonin designed to release in spurts over several hours.  This is contrary to the original design of our natural bodies.  But, since society is looking for a solution to our sleep problems (let’s face it - we all have those desperate moments where our bodies are craving for sleep) and so we begin to mess with our bodies in order to accommodate societal demands.  Will this have long term implications?  who knows?

Naturpathic medicine is wonderful.  But it is still medicine.  This means we should be doing our due diligence and researching EVERYTHING that we put in our bodies.  There are quite a few debates here in Canada regarding the long term effects of melatonin.  Some say that it negatively affect puberty, etc.

The bottom line - we all need to make our own individual choices.  There are lots of studies out there researching the effects of melatonin, using doses from 1mg to 50 mg daily on all different ages. 

I would recommend that prior to use - go see a naturopathic doctor - ask to see the research - and then make the decision that is best for you and your family.  Don’t ask anyone’s opinion - read the facts.  Some conditions actually create a deprivation of natural melatonin in the body, which means that they need the supplement.  Other conditions - maybe it will have no effect.  Given the physical, environmental and emotional differences of each of our children, there is no one answer (or right one for that matter!).

06 May 2017 07:32 AM # 9

Tina

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Joined: 2017-01-21 Posts: 5
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What are the liquid magnesium drops?

I was told initially that melatonin wouldn’t be appropriate for my son as he has no problem going to sleep, it’s just staying asleep!! That being the case we have never used it.

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