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why not go with melatonin if it helps her fall asleep?

It might not be the best quality sleep but then, hay, it is sleep.

 

I know this may sound hypocritical coming from me, queen of supplements, but I'm actually trying to reduce the number of pills the kids take. They're getting to the tween age where I don't want them thinking there's a pill to cure every problem in the world. For the pills they do take, I try to hold up the vitamin C and say "this is the orange you won't eat. If you start eating oranges, this pill can go away. This Omega is the fish you won't eat. Start eating fish and this pill can go away." Trying to point out that a large portion of their pill load is to compensate for poor diet.

 

There are days that I dish out the pills and the Rolling Stones song "Mother's Little Helper" goes thru my head "She goes running for shelter of her mother's little helper..." referring to Valium. I'm starting to get more sensitive to the subliminal message I might be sending. So "here, this is to help you sleep" worries me. Don't get me wrong - we do resort to it. And if my kid only took a few pills, I'd have less concern. But because DS has lyme and because DD can't take a multivitamin (due to MTHFR mutation, she takes separate vitamins for D, C, K, separate minerals etc), they take a lot of pills already. I worry about creating a mindset I never intended. So I'm trying to fix the sleep problem in a different way.

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One thing I have done to reduce the number is to buy large empty capsules and then combine smaller ones into it. Either insert the whole smaller capsules or empty the contents. They're all being swallowed at the same time anyway and this way it helps to combat exactly what you're talking about, which concerns me too.

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Well, no B vitamins given at bedtime.

Only give 1mg melatonin when we give it and when we do give it, it works in about 15-20 min. regardless of if it's 8pm or 10:30pm when we're desperate after 2 hrs of tossing/turning. She just doesn't wake well rested when we use it.

 

She sometimes gets tryptophan in the a.m. when she's had a few moody days in a row - to help with anxiety induced by a teacher who doesn't "get her". Tryptophan turns to serotonin before it turns to melatonin, so it helps with anxiety and she's never gotten sleepy from it. I've tried a few times to give it an hour before bed with no effect.

 

She's taken probiotics at bedtime for 2+ yrs and the sleep problem is only for the past few months, so I don't think that's it.

She only pulses abx every other day and she was treated for lyme or chronic infection for a year in 2011 - that ended over a year ago and her C3d levels are now normal, her GI issues are resolved. So no signs of infection playing a role.

 

We did test for metals and mercury was in normal range as were all other metals. Slight elevation in lead (like 6 where below 5 is normal) and she took EDTA + artimisinin for 6 weeks right after that for EBV, so I doubt it's a metals thing. She also takes milk thistle and liver levels are tested every 4 months - always normal. She also takes garlic for anti-yeast and anti-films. No yeast issues since March '12 when we started garlic (yeast was common before that). Parasite testing has come back negative.

 

It doesn't seem to be anxiety - the insomnia occurs even with a parent next to her, with a night light. She just says she cannot get comfortable.

 

Mama2alex - we did not test MSH on my DD - did that for DS. So I suppose I could ask about that. The problem is that the nearest labcorp is an hr away. And her allergies, which were causing a chronic dry cough, have greatly improved since we bought mattress and pillowcase allergy covers and got vigilant about keeping her room well vacuumed/dust free. We've replaced carpets with wood flooring, emptied the basement of all organic materials, take apart/clean the washing machine drum for mold every 6 mos., fumigate the bathroom and her bedroom with thieves oil...so it could be mold but if it is, I'm stumped on what more I can do. She's been in the same school for 3 yrs - no carpets. Has the sleep problem even on school vacations.

 

The thyroid is one for my radar. Her TSH has come back ever so slightly elevated (like 5.2 when 5 is the cutoff for normal). But not enough to do more than monitor, per the LLMD.

I do appreciate all the thoughts. If I ever figure it out, I'll let you all know!

 

 

Aaagh!!! I feel MISERABLE at 5.2 as do most people who are hypothyroid. It may be different for kids but the endocrinologists basically want their patients to be 2.0 or less. The ranges are generally considered WRONG by the endocrinologists as well as by the naturopaths.

 

again, kids may be different but put thyroid at the very top of your list. It definitely causes sleep and other issues. Treating myself for that was a total game changer. You can me if you want.

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Checking thyroid definitely seems like the next logical step. I was wondering if you are still giving magnesium? Surprisingly when we checked for vitamin and mineral deficiencies our children levels were still low even though we were supplementing.

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why not go with melatonin if it helps her fall asleep?

It might not be the best quality sleep but then, hay, it is sleep.

 

I know this may sound hypocritical coming from me, queen of supplements, but I'm actually trying to reduce the number of pills the kids take. They're getting to the tween age where I don't want them thinking there's a pill to cure every problem in the world. For the pills they do take, I try to hold up the vitamin C and say "this is the orange you won't eat. If you start eating oranges, this pill can go away. This Omega is the fish you won't eat. Start eating fish and this pill can go away." Trying to point out that a large portion of their pill load is to compensate for poor diet.

 

There are days that I dish out the pills and the Rolling Stones song "Mother's Little Helper" goes thru my head "She goes running for shelter of her mother's little helper..." referring to Valium. I'm starting to get more sensitive to the subliminal message I might be sending. So "here, this is to help you sleep" worries me. Don't get me wrong - we do resort to it. And if my kid only took a few pills, I'd have less concern. But because DS has lyme and because DD can't take a multivitamin (due to MTHFR mutation, she takes separate vitamins for D, C, K, separate minerals etc), they take a lot of pills already. I worry about creating a mindset I never intended. So I'm trying to fix the sleep problem in a different way.

 

Right. that's on my mind too. BUT, sleep is not the place to start. Sleep should be on top of our lists. If it does not go well, nothing else can. In my opinion, it's better to cut out everything else but the sleep aids like melatonin (but not like lunesta).

Further, I would even argue that taking vitamins and minerals is fine since most are easily eliminated by the body if it cannot use them.

I do want to mention milk. I don't remember if your dd does dairy or not. I read somewhere that dairy and milk specifically may cause sleep problems.

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My dd also felt terrible the next day when she was taking Melatonin and we had to stop it. Her insomnia was similar to your dd's--it took forever to fall asleep. My ds has had this to some extent, too. Unfortunately, we never really figured out what caused dd's-- but it went away with all of her other PANDAS stuff, so I always assumed it was part of the cluster. I think she occasionally reports having nights that she can't sleep as easily-- but she's 13 and usually she's been up reading, listening to music, doing stuff so it seems more of a typical teen thing because once she winds down and gets into bed she usually can sleep. When she was younger (including when she was your dd's age), it was a different beast-- much more like what you describe.

 

Actually, one thought that just occurred to me--we went through a significant insomnia stretch around that age, and not always in PANDAS flares if I recall correctly. And it's around that age that the first early/pre-puberty stage hormonal shifts begin--and it was when we noticed that. Insomnia is definitely related to hormonal changes later in life. No idea if there could be a connection- but since it just hit me thought I'd mention it.

 

Some stuff from our experience, in case it's useful:

 

One thing I remember is that dd seemed to have built up worry about not being able to fall asleep that struck me as not quite the same as her PANDAS OCD worries-- but that would start creeping up in the after dinner hours and leading up to bedtime. We used the same ERP/CBT approaches for those, even though it felt slightly different to us both. It seemed more like a worry b/c the insomnia was upsetting to her, making her feel tired/lousy. But, worrying about it was only making it worse--possibly even perpetuating it after the initial cause had waned-- so we worked on eliminating that pattern the same way we'd address any other worry thought/ritual.

 

A few other things that were sometimes helpful:

Exercise and plenty of outdoors can't hurt. But my dd was super active so enough exercise to exhaust her at that age would've been like an extreme sport so even though it seems common sense and standard advice-- wasn't a reliable remedy. Still, I think it helped sometimes. The combination seemed important--not just activity, but outdoors/fresh air, too. Swimming in summer. Hiking. Biking. Days at the park.

 

Routine. Experiment and find something that seems to work- both of mine were different. One liked bedtime baths, it was too stimulating for the other so am bathing was better for sleep. One likes music, the other silence. Reading together. I used to do gentle calming yoga and/or meditation with them, paired with a peaceful story or poem. Along with that, relaxation exercises-- focusing on breathing, contracting and relaxing muscles, visualization-- whatever works. One found more sensory input calming at bedtime. Deep pressure. Heavier blankets. Ds likes gentle touch--fingers run lightly down his back while I sing to him. He also likes falling asleep to classical music. One tip: I tried to never let the routine become ritual b/c of the pitfalls in that w/ the OCD. So I'd find some things that worked and either use them like swappable components--different parts different nights and no seeming rhyme or reason to which one we did when or what things went together-- or would change things up regularly enough that one way of doing it didn't have time to become "the" way. Swapping off and on with my partner helps, too. I tried to create enough regularity to provide comfort without enough predictability for ritualization/dependence.

 

And the counter to that, I found a significant deviation from routine has also really helped the insomnia at other times. Sleeping in another bed, at someone else's house, a downstairs "campout" in a pup tent on the living room floor-- something novel that breaks the established patterns/rituals that the insomnia is attached to. I think I stumbled onto that accidentally while traveling once, then began to use it intentionally when we got into insomnia ruts.

 

Anyway, just some of our trial and error over here. Good luck!

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too many cobwebs in my mind for thyroid trouble as post-TBI troubles. . . but, yes, i think our integrative MD says he sees thyroid trouble after TBI and infections. i believe he thinks it is not always life-long - may be something that is treated for a shorter time as a side-effect of the infection vs. adults that are usually considered to have life-long treatment once they are having trouble.

 

ds was just recently checked and was 1.49. i haven't talked yet with our doc -- but for other blood tests, they use their own "optimal functional level" which are quite a bit tighter than lab normal levels. i'll let you know -- i feel 5.2 would be more than slightly elevated according to them.

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Hey LLM-

 

I totally get your concern about "mother's little helper". I personally have always taken as little medication, myself as possible. I don't drink. And I DO worry about the message I send when my kids take so much medicine :( I can only go by the hope that they will follow my example. And, we have pared them down to nothing- except during flare ups (which we are seeing a little bit of now). I do explain (like you) what every med is for scientifically (well in laymen's terms) and how long they have to take it, and how we try to do the effective minimum. We do the melatonin here many nights. They took it almost nightly during the first two pandas years- I have become a huge believer in the need for a very good night's sleep- at one point obsessing over getting them in bed early- letting go of that a bit as they get older. Now, I give them a choice: if when they are getting in bed they feel they won't sleep- I give them melatonin- if they don't want it- they don't take it. I explain that it is something that your body makes to help you relax to allow sleep, and that sometimes our bodies can get out of whack. I typically don't offer it on the weekends- but I really, really like them to get a full night's sleep before school.

 

Gosh- it is such a balancing act :) You will figure it out!

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DCMom - I do the same thing with the melatonin - this is what it's for, do you want it? Half the time, she says no and I respect her decision. Probably because I don't sense it gives her quality sleep and also because DH (who ironically has sleep apnea) isn't keen on it. Neither of us like how it makes us feel when we use it and since DH is generally silent on supplements, when he voices an opinion, I try to respect it.

 

Pr40 - I agree on the importance of sleep - but as I said, I don't think the melatonin gives her a good quality sleep. So it's not a supplement I've been inclined to push. Just a gut feeling that I can't explain.

 

ThenMama - thanks for all your thoughts, esp. on the hormones. I don't think this is an OCD thing with her. We've done lots of CBT for anxiety but she's never really had true OCD (my DS has). She does however,, psych herself out. DH does it too. After the first 10 minutes, they can tell it's going to be a "bad" night and then they both get all worked up over the "need" to fall asleep and get frustrated. Becomes a self-fulfilling prophecy. We do have a general routine and DH and I trade off every other night. Tonight I'll read/talk with DS and he'll read/talk with DD then tomorrow night, we switch kids. I do back and foot massages, scalp massages, lymph massages, deep breathing, think happy thoughts...Sleep eludes her no matter what. Except last night when we didn't get to bed until 10:30 pm - and she fell asleep in about 10 min. - and slept until 8am. Prior to 6 months ago, it rarely took her more than 10 min to fall asleep. So something has changed.

 

I did dig up her thyroid results and will start a new thread on that. Time for me to learn about another body system...

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i know you are on it with zinc and zinc/copper. . . but. . . have you done anything in this time frame with increased zinc -- b/c i believe increased copper can have implication with sleep trouble . . . could you have been chelating any copper?

 

 

or. . . are you supplementing zinc and you've drawn copper too low?

 

copper is involved with thyroid health as well -- although this is making my head spin!

Edited by smartyjones
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Smarty - that's actually a really good point. I had stopped giving DD zinc/B6 last fall b/c she started to complain that it tasted bad. Since Greenblatt uses your inability to taste zinc as a sign of deficiency, and b/c DD was only borderline pryoluria and had taken 1 Core/day for a yr., I stopped it. She's been getting cold sores a lot this winter - so I've been giving l-lysine. But the zinc would fit this piece too, so I'll re-start 1 zinc/day and see. Also going to stop giving a flaxseed/primrose supplement, as I read that unsaturated oils, including the Omega 3s and 6s, can cause TSH to rise.

 

Thanks for helping me brainstorm!

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