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sleep? Major problems....


sbgrace
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My special needs son has used melatonin (.75 mg) for 7 years to fall sleep. He doesn't settle well to put it mildly.

 

He's now, in the last several months, not sleeping well even with melatonin, even at double his normal dose.

 

He says he can't turn off his imagination to sleep. He says he's not tired, though he seems tired to me when he calls for me to complain about not falling asleep.

 

This is things like staying awake in bed for 2-6 hours nightly. I'm getting him up in the morning if he sleeps in, though he usually wakes before my alarm goes off. He's just getting more sleep deprived it seems.

 

I saw the pediatrician today. She suggested I up the melatonin to 3-5 times what he takes. I don't like the idea because a. I don't want to do a large dose indefinitely/build tolerance b.I have concerns about high does melatonin in terms of thyroid, among other things. She would prescribe Klonipone (?), but I'm pretty sure it will aggravate his OCD. She did suggest I start getting him up an hour earlier than normal (8 rather than 9). I might try that I guess. 

 

She didn't think a sleep clinic, therapist, or similar would be able to help. She said we already do what they would suggest. She will refer to neurology if I want.

 

Does anyone have any suggestions? I feel like I can't see the forest for trees here.  I am so frustrated and sad about this (he's just so tired....)

 

 

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I feel your misery--my DS is the same and we have never developed a great solution.  The more of a routine, quiet, and calm we had in the evening--the more his mind would go.  Surprisingly, we found that what we were always told was the WORST thing to do helped the most.  Watching videos seemed to help.  We realized that every time we turned on Star Wars he would fall asleep.  He seemed to need something to become so involved in that he could turn his brain off and stop thinking. 

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Could it be the melatonin causing vivid dreams? I'm sure I've read that's a potential side effect... We use melatonin and also valerian drops.

Valerian tastes foul, btw. You put the right number of drops in small bit of water and drink. I buy a German brand because they standardize their herbal meds....

 

Fwiw, My kids didn't start taking melatonin until they were over 12 but they started with 3 mg.

 

How about switching brands? Maybe the one you have is a weak batch?

 

Also, how about audio books? One that he'd heard before? A boring story? someone else's words might help soothe him

 

More fresh air and exercise?

 

Hope you find something...

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DS10 has been taking melatonin for awhile now. Our pediatrician just gave us some new advice (different than what he told us before). He said the optimum thing to do is give 2/3 of the dose two hours before bedtime and the remaining 1/3 of the dose at bedtime. He recommended that we give DS 2 mg two hours before bed and 1 mg at bedtime, for a total of 3 mg. Before deciding that the melatonin isn't working, you might try the increased dose that your doctor recommends. I still don't like giving it to DS, but it makes  a huge difference, and our pediatrician assures us it is safe. I know there is some debate about this, but we trust him.

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Other stuff that might help: magnesium but maybe earlier in the day, not necessarily at bedtime (depends on the person); a little chromium (in the morning only; I give him a fiber tablet that contains it); evening primrose oil late afternoon/early evening ( though tonight I gave it at bedtime just fine along with the melatonin). I am off to bed myself - I will try to think of more ideas. The augmentin he is on right now helps a little though he complains of being tired in the morning sometimes (he would blame the medicine, but it is probably just from going to bed too late)

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Thank you guys. I made an appt. with an Integrative Med. MD I trust from our old town. I see him next week. I'm thinking increasing the melatonin (love the idea of dosing it split; I never thought of that) is probably the right choice. I am going to see if I can find some progressive relaxation CD or something like that to focus his mind, and I'm waking him an hour earlier than I was before. Something is off generally I think, in multiple areas.

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I so feel your pain DS8 started out on 250 mcg(1/4 tab of Trader Joes minty melatonin) and now takes 500mcgs and rarely 750 mcgs(a tab and a 1/2). It has been a life saver for us.... I can't imagine going back to the bad old days :(

 

However, before realizing DS had a sleep disorder, guided visualizations were our best option. Either DW or I, would sit in a quiet, dark room and talk about riding on a gently swaying train as the sun went down and the motion rocked us to sleep... or being in a cabin on a boat while the current swayed to and fro as we went to sleep... etc etc... For us darkness and motion and calmness seemed to do it... if boats or trains don't work, maybe try hammocks or tents with a gentle breeze. Good Luck.

 

PS. Being GFCF seemed to help on sleep and other issues for us. It is an extreme option but if other options don't work it could be worth a try. I'm not suggesting it now, but if things become desperate it might be worth considering. 

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One simple thing that you could suggest that he tries?

Is when he closes his eyes to go to sleep?

That he turns his eyes downwards, as if looking down.

 

I read a study that looked at the direction of the eyes, as fall asleep?

Where it found that if were looking straight ahead, as we try to go to sleep?

Our mind keeps thinking.

But that if the eyes were kept looking downwards?

That has the effect of inhibiting thinking.

 

So it's a simple thing that he could try?

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You mention his OCD.  Is he in therapy or on meds for that?  Treating the OCD might help the sleep.

 

Is he ADD/ADHD at all?  Some doctors will actually give a stimulant just before bed to help QUIET the mind so that they can fall asleep.  With the OCD though you would want a peds psychiatrist monitoring that and prescribing, not just a family doctor.

 

As to the melatonin, we were told we could use much higher doses as well by our endocrinologist and psychiatrist as well as neurologist.  I do like to use the lowest possible dose though.

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I'll tell him to try the down turned eyes!

 

Yes, he does have OCD as well as ADHD (and autism). We tried a non-stimulant ADHD medication that aggravated the OCD. It's actually known to help kids sleep, but it was the opposite for him because of the OCD. I really wish something would help him with the ADHD stuff without aggravating OCD. My understanding is that stimulants are known to aggravate OCD, but maybe a psych could figure something out.

 

I am splitting and slightly uppping, by 1/2 a pill, his melatonin dose, and I do think it's helping some. I probably still need to go up more, but I'm giving him a week of split dose and waking earlier to see how much it helps. That will also give me a chance to run it by the doctor I trust.

 

I so appreciate the thoughts and shared experiences here. It helps me.

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I'll tell him to try the down turned eyes!

 

Yes, he does have OCD as well as ADHD (and autism). We tried a non-stimulant ADHD medication that aggravated the OCD. I really wish something would help him with the ADHD stuff, but the OCD is worse than the ADHD. My understanding is that stimulants are known to aggravate ADHD, but maybe a psych could figure something out. I can ask for a referral.

 

 

I think you meant that stimulants tend to aggravate OCD, and that is correct.  It is a wicked balance with meds when kids have both.

 

I hope he gets some relief.  I don't sleep much myself (thank you, perimenopause) so my sympathies are with your ds.

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I think you meant that stimulants tend to aggravate OCD, and that is correct.  It is a wicked balance with meds when kids have both.

 

I hope he gets some relief.  I don't sleep much myself (thank you, perimenopause) so my sympathies are with your ds.

 

Yes, tend to! He was on Intuniv, which doesn't usually aggravate OCD. Yet it was an absolute disaster for him in that area. Since he's apparently sensitive to this, I am reluctant to try things that have identified possible negative effects on OCD.  But the ADHD is really impacting his life negatively too, though not as much as the OCD when it's bad. It is absolutely consuming/debilitating.

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Yes, tend to! He was on Intuniv, which doesn't usually aggravate OCD. Yet it was an absolute disaster for him in that area. Since he's apparently sensitive to this, I am reluctant to try things that have identified possible negative effects on OCD.  But the ADHD is really impacting his life negatively too, though not as much as the OCD when it's bad. It is absolutely consuming/debilitating.

That is a lot to balance, and it can be a challenge.  (I think you misunderstood my post, though.  I meant to point out that you said stimulants tend to aggravate ADHD when you meant to say OCD.  Sorry!)

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If you are not already seeing a pediatric psychiatrist it would be a good time to find one well versed with autistic children and the compounding issues.  This is way beyond a regular doctor as you want someone with expertise in this area........even if it means driving quite a distance.

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We've been trying adding l-theanine here as a mood enhancer and at least one of our sample group will only be able to take it at night because it just makes the person extremely relaxed and mellow. Not drowsy, just really mellow.

 

And one of the brands of melatonin we've tried has a bit of l-theanine added to it.

 

This supplement has been used widely in Japan for decades. It's one of the active components of tea.

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  I think you're right on the ped. psych. I will ask for a referral.

 

I will also look into the L-theanine.  I have never heard of it before this thread, or at least I didn't notice.

 

That is a lot to balance, and it can be a challenge.  (I think you misunderstood my post, though.  I meant to point out that you said stimulants tend to aggravate ADHD when you meant to say OCD.  Sorry!)

 

Oops!  I get what you were correcting now.

 

 

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My pediatrician recommended a book and CD set called Sitting Still Like a Frog, which has calming and focusing techniques geared toward children. You listen to the disk and do the things the woman says. There are different segments to choose from, mostly only five minutes or so. We often do it right before bed. I can't make a link, but you can find it on Amazon.

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He sounds a lot like my DS. He cannot sleep and never has. He's had a sleep study and it was no help. We've been giving him melatonin for years. It lost it's effectiveness at the dose I was comfortable with this summer. We took a break and it was awful. He was going crazy because he couldn't sleep and the lack of sleep was making his OCD worse. We started melatonin again and it helps again. I think if you can stand it a break may be helpful. I also added magnesium to the melatonin. Magnesium is supposed to help with restless leg syndrome and although not diagnosed, DS has the symptoms for that as well. Magnesium was not helpful without the melatonin.

 

Finally, I've been having him watch baby videos before bed to settle his mind. I give him some chamomile tea and he sits on the couch with a blanket. We watch Baby Mozart and stuff like that. He hates it but it really helps. I don't know if it's some sort of conditioned response from when he watched them as a baby to fall asleep, if they are magical, or if forcing him to be still and quiet for before bed is making the difference. I can't do it every night, but it's the best thing we've tried in a while. 

 

DS's doctor offered clonidine but I refused. Intuniv made him sleep all day. 

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  I think you're right on the ped. psych. I will ask for a referral.

 

 

Hopefully you won't have any trouble getting a referral.  The ped psych has been SOOOO helpful here.  We have followed her to 6 different office locations in 4 different cities (she works for a large psych hospital and 5 of those offices were just moving to other locations in the system) as she is THAT good.  She at one point mentioned moving 3 hours north of us..............and I told her we would follow her there as well.

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Good idea.  My girls actually see both and they work well together.

 

 

A team approach worked well for us too: ongoing neurologist, ongoing psychiatrist, and a one-time visit to a sleep clinic.

 

I have twins with sleep challenges. Maybe something from either or both of their experiences will help:

 

 

When my son was about your son's age, racing thoughts at night prevented his sleep and required a psychiatrist's attention. In his case, these evidenced an emerging psychiatric condition beyond his OCD & ADHD, so it might be good to rule this out. In addition to new medication, a bedtime notepad helped him. My son could then draw or write his thoughts and designs as they occurred. He especially appreciated a thick pad of graph paper, as (on the autism spectrum) these thoughts often manifested themselves as detailed plans.

 

Today, over a decade later, his medications, his love of reading, and his large collection of audio books allow him to sleep relatively well most nights. He still sees both the neurologist and psychiatrist regularly.

 

 

His twin sister, my daughter, also has major sleep problems: OCD, ADHD, "delayed sleep phase disorder," parasomnias, paresthesias, and more. She had been taking melatonin for years, but some forms often seemed less effective than others. Her neurologist switched her to Rozerem, which he described as a prescribed, regulated dosage of melatonin. This has worked very well for her. She takes it 30 minutes before bedtime. This might be something to ask your doctor about.

 

 

A neurologist checked my daughter's iron, because he says anemia contributes to restless leg syndrome which interferes with sleep. He discovered significant anemia and addressed this with prescription iron. She takes this regularly.

 

 

We also visited a sleep clinic, and even though some suggestions seemed unrealistic for home life (e.g., warm her comforter in the dryer 20 minutes nightly before bed), the doctor offered good insights into breaking some unproductive thought patterns that had developed in my daughter's mind associated with bedtime. The sleep doctor also helped us realize we needed to take an even more aggressive "sleep hygiene" approach, especially waking her earlier in the mornings.

 

Meanwhile, the psychiatrist addressed some anxiety issues for her. I mention all of this because, thanks to every doctor's help and much trial and error, my daughter now has a regular bedtime, stays in bed, and sleeps much better. We do too!

 

 

I hope you receive some good answers soon.

 

 

If you are so inclined, we found yet another helpful component. My son completes a thankfulness journal before bedtime, ordering and calming his mind. And my daughter memorized this psalm. She and I still reference it often when I tuck her in:

 

"In peace I will both lie down and sleep; for you alone, O Lord, make me dwell in safety." Ps. 4:8

 

 

 

Cheryl

 

 

Simply Classical: A Beautiful Education for Any Child

 

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Thank you for the additional replies. I really appreciate all the ideas and experiences here.

 

He was very tired when he went to bed last night. I'm not always sure, but I am certain he was tired last night. He still didn't sleep well. He's not sure whether he went to sleep for a bit and then woke up, unable to go to sleep again, or never went to sleep. He feels like he can't control the imagination. His sleep studies have suggested Delayed Sleep Phase Disorder (or something like that, it's on the report, but I can't find it right now..it took him 236 minutes and 3 doses of melatonin to fall asleep). They also noted Parasomnias on this latest one, and he does have those at home as well. They didn't see restless leg on any of his sleep studies, and his apnea was cured/0 on the latest study.

 

I do know sometimes he calls for me when he's only been in his bed for 20 minutes at most, and seems to think he's been in there a long time.

 

He took that Intuniv for less than 2 months. It was the 2nd week that our sleep problems, which he attributes to being unable to stop his imagination, started. At the same time he started having significant trouble "turning off his imagination" during the day as well, though this type of preoccupation with his interests has always been there. 

 

His OCD also came back, and got worse as time in the Intuniv went forward and dosing increased. When I took him off we had a marked reduction in the OCD, but it was still there. It took about 9 weeks off the Intuniv, but I don't see the OCD anymore (he is fortunate in that NAC does a great job of controlling it for him).

 

The imagination thing and sleep problem, though, hasn't subsided. I wish his pediatrician wasn't so reluctant with referrals. She likes to try to "handle things locally if possible" first. I think he's too complicated to blindly throw medications. When I told her that she said we won't know what will work with kids like him until we try. But I think a specialist might have a better sense of what to use. I'll call and ask for a referral,or maybe make an appt to talk with her again. I expect there will be a long wait.

 

Given I am certain he was tired, I'm not even sure what to ask the doctor on Thursday. I don't know if this is behavioral/habits formed on the Intuniv (probably need sleep clinic or CBT), or related to his issues (need psych), or something new (oh, please no..)

 

 

 

 

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I do know sometimes he calls for me when he's only been in his bed for 20 minutes at most, and seems to think he's been in there a long time.

 

I wish his pediatrician wasn't so reluctant with referrals. She likes to try to "handle things locally if possible" first. I think he's too complicated to blindly throw medications. When I told her that she said we won't know what will work with kids like him until we try. But I think a specialist might have a better sense of what to use. I'll call and ask for a referral,or maybe make an appt to talk with her again. I expect there will be a long wait.

 

Given I am certain he was tired, I'm not even sure what to ask the doctor on Thursday. I don't know if this is behavioral/habits formed on the Intuniv (probably need sleep clinic or CBT), or related to his issues (need psych), or something new (oh, please no..)

 

 

Ask for the referrals.

 

If you wanted, you could request one to a sleep clinic/CBT, one to neurology, and one to psychiatry. You can even acknowledge to her that all of this might prove a little more than necessary in the end, but you would like to explore everything possible to help your son. Explain that his inability to sleep is interfering with his ability to learn, and you see unhelpful thought patterns that he cannot stop on his own.

 

Our local pediatrician, despite her best intentions, made significant errors with my two, simply because of the complex nature of my children's difficulties. You sound ready to move beyond local, experimental medications. As his concerned mom, you can justifiably seek more specialized evaluations for your son.

 

 

As you describe your son, he sounds very much like my daughter: Delayed Sleep Phase Disorder, parasomnias, responded well to OTC melatonin for years but then developed more significant difficulties falling asleep and staying asleep. Faulty thinking patterns eventually reinforced or worsened physiological difficulties. She, too, would report inaccurately being in bed "for hours" unable to fall asleep. This magnified the problem in her mind and revealed to us the extent to which she might be struggling.

 

All of this was far beyond the scope of the local pediatrician, even though the pediatrician did not realize it. My daughter improved in every area when we pursued more specialized evaluations and care. For her, we just needed some competent "tweaking," and this resulted in marked improvement. This might be all your son needs.

 

Another aspect to consider - our children do not simply outgrow all of their complexities! Obtaining a good neurologist, psychiatrist, and sleep/CBT professional now might serve your son well for many years. Ours now seem like extended family, as we visit several times a year. My daughter even brings crafts or poems for them. (And we no longer see the local pediatrician.)

 

Cheryl

 

 

 

 

 

 

 

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Thank you. I will request referrals. I may just make another appt to ask her face to face. She's very opinionated.

 

I did meet with the Integrative Med. MD from our previous home area today. It went well.

He suggested: theanine (I didn't mention it/he brought it up), increase his magnesium by 50 mg, and up his melatonin to the lowest effective dose. He really reassured me about the melatonin.

 

I do think there are cognitive things going on, though, that all the sleepy feelings in the world aren't going to fix. I'll see how he does. I'm sure referrals will be a long wait list.

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  • 4 weeks later...

I just noticed that this was an old thread, but since it's been brought back up, how is it going, sbgrace? Are you getting answers?

 

My ASD son (10) is taking a short acting stimulant for ADHD and melatonin at night. He has fluctuating anxiety but not OCD. We were really worried about a stimulant making his anxiety worse, but it's actually helped because he feels more in control of himself, more confident, etc., and his anxiety is tied very much to how in control of himself he feels. Meltdowns have been nearly non-existent since trying the ADHD meds. I have no idea if you've tried a stimulant, and I am not versed in OCD, but it might be worth discussing with a specialist if they've seen stimulants work well for a child with OCD and if they know why. We'd heard bad things about stimulants and anxiety, and it turns out that in our case, the bad things just didn't end up applying.

 

Our son does better with melatonin when we have him take it early. He also does better if he can read or something before bed--I think it puts his mind in neutral. Our melatonin is a bi-layer tablet. I didn't put any thought into what I bought because we were buying it for help with jet lag for a couple of days, and it just turned out to be magic for our son. It's Nature's Bounty 5 mg, and we break it in half. One layer works "now" and one works "later." 

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Thank you for more thoughts.

 

Tarabith, no one has mentioned trazodone, but we've never been to a psych for this issue--just the metabolics dr. and pediatrician. I will keep that in mind should we go for more help. I did start a new melatonin bottle when I upped the dose. I don't think that's it, though. Partly because the few times I've forgotten to give him his second dose, he still has problems.

 

kbutton, that is interesting! I wish I knew if something like that would help or hurt here without trying to see. But I suspect any increase in OCD with a stimulant would be easier to resolve than what we had with the other medication. So it might be worth a try. They have been reluctant to even consider stimulants because of his weight/growth. I wonder if a short acting would make that concern less, though.

 

 

The good news is that we increased the melatonin, and did split doses too as suggested up thread. I also tried to teach him some relaxation techniques, though I don't know if that's really helping or not.

 

I started waking him in the morning, no matter how long it took him to fall asleep the night before. It was rough for a bit, but now he is waking up himself well before my alarm goes off. I think this is because he's going to sleep faster. We're rarely having nights where it is taking hours to fall asleep. I think he's not entirely rested, but he's not a mess either. It's much better!

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Thank you for more thoughts.

 

Tarabith, no one has mentioned trazodone, but we've never been to a psych for this issue--just the metabolics dr. and pediatrician. I will keep that in mind should we go for more help. I did start a new melatonin bottle when I upped the dose. I don't think that's it, though. Partly because the few times I've forgotten to give him his second dose, he still has problems.

 

kbutton, that is interesting! I wish I knew if something like that would help or hurt here without trying to see. But I suspect any increase in OCD with a stimulant would be easier to resolve than what we had with the other medication. So it might be worth a try. They have been reluctant to even consider stimulants because of his weight/growth. I wonder if a short acting would make that concern less, though.

 

 

The good news is that we increased the melatonin, and did split doses too as suggested up thread. I also tried to teach him some relaxation techniques, though I don't know if that's really helping or not.

 

I started waking him in the morning, no matter how long it took him to fall asleep the night before. It was rough for a bit, but now he is waking up himself well before my alarm goes off. I think this is because he's going to sleep faster. We're rarely having nights where it is taking hours to fall asleep. I think he's not entirely rested, but he's not a mess either. It's much better!

 

I can't speak to weight issues, though that will be a factor with my younger son if we get to the point of trying meds (he's a stick). I can say that my son taking stimulants has always been slim, and he's not losing weight on the short-acting one. He eats before he has his meds, so that probably helps. Then, he is quite hungry when they wear off 4-6 hours later.

 

I am so glad to hear that things are getting better even if they are not perfect yet. :-)

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I started waking him in the morning, no matter how long it took him to fall asleep the night before. It was rough for a bit, but now he is waking up himself well before my alarm goes off. I think this is because he's going to sleep faster. We're rarely having nights where it is taking hours to fall asleep. I think he's not entirely rested, but he's not a mess either. It's much better!

 

sbgrace,

 

Such a simple remedy! Just wanted to encourage you that my daughter (with Delayed Sleep Phase Disorder, like your son) responded well to this too.

 

As a mom, I wanted to let her sleep later, so she could recover from fitful nights. But her doctor recommended exactly what you are doing. Eventually the early rising with "No Naps Allowed" helped her feel sleepier in the evenings and awaken more readily in the mornings.

 

 

Good to hear -

 

Cheryl

 

Simply Classical: A Beautiful Education for Any Child

 

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