Meletonin no longer works!!!!

[Kailey's mom]

Dd's behavior issues and sleep issues have been escalating. I'm tired, she's tired. I started her back on meletonin, and it's doing nothing. It's midnight, and she's up. Last night is was 3 am. She has SPD, snores at night once she goes to sleep. I dont know what else to try. Allergies are not the issue, since she is only on elecare *eosinophilic colitis* Any suggestions I could try? body brushing, calm environment etc have already been used. Thanks!

[HarperRose]

How many mg is she taking?

Our doc told us my AS 9 yr old can have up to 9 mg, no more.

[sbgrace]

Is she napping at all? Is she sleeping in? How much less sleep than typical is she getting? Sometimes when you are so over-tired you just can't settle no matter what you do. That has happened to me.

After giving melatonin is she in bed or exposed to a lot of light and stimulation? If she's staying up I'm wondering if she's pushing past the tiredness while she's doing stuff (light exposure/etc.) that stop melatonin production? In my experience w/myself if I don't take it and then start settling to bed the effect sort of passes.

Some people who don't respond to melatonin work better with valerian (and vice versa). It's interesting though if she responded in the past and not now. My mom was like that. Turns out she has major sleep stuff going on--moderate apnea and restless leg.

I'd do a sleep study given the snoring.

[logan&jordansmommy]

With the melatonin is she falling asleep then waking? What happens without the melatonin? Without it does she not fall asleep well but sleep all night or wake or what?

[theretohere]

First I'd do a sleep study, and if that didn't show anything I'd try the valerian.

[heatherdeg]

I'd do a sleep study, too. If she's snoring she may have apnea and that could be a part of the behavior problems.

Also, before the fish oil put my son fully to sleep (seriously--whatever was wrong with his wiring on the sleep front, fish oil TOTALLY fixed) we were set to try a calcium/magnesium/vit D/boron mixture; but I think just the cal/mag was needed to help with sleep. In fact, a bath with epsom salt that gets up near the ribs (where the skin is thin and it soaks through) can help if you can't get her to take it orally.

[cchrissyy]

I'd ask for a sleep study too.

[Kailey's mom]

When the meletonin was working, she would sleep 6-7 hrs/night and she would take a 1-2 hr nap. Now, she's sleeping MAYBE 5-6 hrs/night.. very restless *that is always though* I lay her down for a nap, and we end up laying in the bed for an hour or so..but she doesn't fall asleep. She's definitily overtired!! When we give it, it in her night time elecare, so she's in bed within 10 minutes after I make it. Now that it's not even working, we are in bed, but she gets so loud *crying, hyper, etc* that I have to get up with her because dh has to get up at 6am for work. Where can I can valerian? Health food store?

Originally Posted by sbgrace

Is she napping at all? Is she sleeping in? How much less sleep than typical is she getting? Sometimes when you are so over-tired you just can't settle no matter what you do. That has happened to me.

After giving melatonin is she in bed or exposed to a lot of light and stimulation? If she's staying up I'm wondering if she's pushing past the tiredness while she's doing stuff (light exposure/etc.) that stop melatonin production? In my experience w/myself if I don't take it and then start settling to bed the effect sort of passes.

Some people who don't respond to melatonin work better with valerian (and vice versa). It's interesting though if she responded in the past and not now. My mom was like that. Turns out she has major sleep stuff going on--moderate apnea and restless leg.

I'd do a sleep study given the snoring.

[Kailey's mom]

Originally Posted by HarperRose

How many mg is she taking?

Our doc told us my AS 9 yr old can have up to 9 mg, no more.

3mg... we started at .25 mg but nothing worked until we got to 3

[Kailey's mom]

Originally Posted by logan&jordansmommy

With the melatonin is she falling asleep then waking? What happens without the melatonin? Without it does she not fall asleep well but sleep all night or wake or what?

she's just not falling asleep. When she eventually does, it's very restless sleep. If I roll over, she wakes up kwim

[Kailey's mom]

Originally Posted by heatherdeg

I'd do a sleep study, too. If she's snoring she may have apnea and that could be a part of the behavior problems.

Also, before the fish oil put my son fully to sleep (seriously--whatever was wrong with his wiring on the sleep front, fish oil TOTALLY fixed) we were set to try a calcium/magnesium/vit D/boron mixture; but I think just the cal/mag was needed to help with sleep. In fact, a bath with epsom salt that gets up near the ribs (where the skin is thin and it soaks through) can help if you can't get her to take it orally.

I'll start giving her the flax again.. she's allergic to fish *allergic to everything actually* she has eosinophilic colitis. I'm curious about the cal/mag.. how much would I give?

[Kailey's mom]

Originally Posted by cchrissyy

I'd ask for a sleep study too.

I'll ask about this, thanks

[dpeacey]

just a thought ... do you refrigerate the melatonin? We use liquid melatonin and the effectiveness went waaay up once we refrigerated it! (and noticed the tiny tiny print on the label directing us to do so).

I would check with your neuro/ped before using the valerian. We were told not to. (... can't recall exactly why now -- it is considered a sedative ...?)

My dd snored horribly until we got her adenoids out. The adenoid removal helped her sleep a lot.

Good luck, mama! I know (from 16 months of 3hrs max at atime!) that life without sleep is very hard.

[sbgrace]

I strongly urge you to get the sleep study. You're describing snoring, restless sleep, and an over-tired child in addition to not falling asleep and the behavior stuff. You've got lots of indicators of things like sleep apnea which can be treated.

[heatherdeg]

Originally Posted by sbgrace

I strongly urge you to get the sleep study. You're describing snoring, restless sleep, and an over-tired child in addition to not falling asleep and the behavior stuff. You've got lots of indicators of things like sleep apnea which can be treated.

I agree with this. Apnea could be a monumental factor with all you're describing... and very treatable... although you should research that. My husband wears a CPAP at night for apnea and I just ran across somewhere here at MDC the idea that this and/or bi-pap could worsen the problem. Honestly I haven't even had a chance to dig into this at all to know if it's an issue. I know that he absolutely has relief from it, though.

And as far as the cal/mag--I honestly don't recall, but I know what book I read about it in and I will look it up. It's packed away (we're about to list the house & relocate ) so it will take a day or two to find it. I do remember that it bothered my son's stomach so I put it on hold until I could find better dosing info and in the meantime we tried fish oil (for completely unrelated reasons). So I'm not even sure my dosing info would be of value... but I will look anyway. I need that book regardless and this is just another reason to dig it out.

[Kailey's mom]

I know NOTHING about sleep studies.. but I have a question, it might be stupid, so bear with me lol.

My dd has been through procedures where they put her to sleep. 3 endoscopies, and 1 colonoscopy.. oh yeah, and the follow up echocardiogram when she was 3 months old.. would the sleep apnea have already showed up if she has it, with the procedures she already had? Or is this something completely different. With 2 of her procedures, she needed some O2.. but only because she was so knocked out.. Should I still bring this up? What do they do, besides we have to sleep at the hospital?

[dpeacey]

The sleep apnea wouldn't have shown up on the sedation for the procedures. Sedation is completely different in terms of physiological response than sleep.

First they will send home a oxygen monitor. You will attach it to DC's finger or toe (use hockey tape and socks so DC can't remove it) before night sleep. This is a kind of first test (and easiest) way to check for sleep apenea. The monitor will record O2 levels through the night -- rapid drops reflect apenea. Of course, this is premised on that DC keeps it on!

If the monitor shows a problem, they will probably ask you to come in and sleep in the lab and do a sleep study there with more equipment. This is tough, but worth it.

If the O2 monitor doesn't show a problem, ask for a movement monitor (I am not sure of the proper name for this thing -- it looks like a wristwatch). This records sleep and movement through the day and night. DC wears it for 2 weeks. The hospital then downloads the data from the monitor and analyzes it to see how much actual sleep DC is getting -- it can indicate restless sleep syndrome too. It basically verifies mom's claim that DC isn't getting enough sleep. This is a fairly new piece of equipment (at least here in Alberta, Canada) so you might have to be a bit pushy.

So, I would do a couple of things -- make an appt. with the respirologist -- they are connected with the sleep lab. Make an appt. with the ENT about adenoids. Get the ENT and the respirologist and the ped to talk together. And maybe get allergy testing?

There are usually HUGE waitlists to get a sleep study (at least in my neck of the woods), so don't sugar-coat the situation at all when asking for appts. Make sure that they know that you, your family are desperate for sleep, and your child is suffering (long term lack of sleep has serious physiological and psychological effects).

Good luck!