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Can melatonin help ds3? new update 10

post #1 of 14
Thread Starter 
Ds3 is about 3 1/2y. He has a craniofacial defect that makes it harder to breath at night, similar to a stuffy nose with a cold, so he sleeps poorly (sleep study shows abnormal but not really anything fixable or dangerous--surgery to correct his nose won't be until he is a teenager--just "annoying"). He is restless and wakes frequently. He still take a full bottle, thickened with cereal for swallowing issues, about 4x a night. When I have tried to wean by watering down the milk, he increases the numbers of bottles he takes to equivalent calories, and I don't know how else to do it (#1 was bf #2 was not, but both followed a gradual pattern of less waking/feeding). Other issues: he is adopted, and had a rough transition/adjustment with a lot of grieving that was especially obvious at night. He would wake for hours and scream and cry for his foster Mom, almost every night, for close to a year. It was awful. While we are past that, he is very much in need of Mom/Dad presence when he wakes 6-8x or more a night. He cosleeps part of the night, although starts out in a toddler bed at the foot of ours. In addition, he is very high needs during the day, and has frequent intense, loud tantrums that can last 1-2 hrs at times. He is super energetic, almost certainly will be dx ADHD at some point. I am worn out, plain and simple. I frequently feel my other 2 kids are not getting enough attention/time, as I am so worn out. I am also doing a FT externship this semester, and so am WOTH for the first time since I have had kids. I am seriously exhausted, getting only 6-7h of very interrupted sleep a night. And now I can't even nap.

Here is what my gut tells me is going on--the breathing is affecting the quality of his sleep and making him wake more. Whereas most kids at this point would just roll over and go back to sleep, he is needing the comfort of Mama and a bottle to feel secure due to the adoption/attachment issues. So I feel like, if we can improve the sleep we can break the cycle. I also think that his behavior would be better if he was rested; I know that obstructive sleep apnea can mimic ADHD behaviorwise. His behaviorisi bad enough that I have realized that I am limiting how often we even leave the house, as tantrums and meltdowns can be sparked by any instance of no or limits.

So the longwinded point of all this--can melatonin help him sleep better? I read the recent thread about it, and was thinking to use the sublingual one, even if it only gave us a couple of longer stretches. Oh, and we tried calms forte. He slept in 2 beautiful stretches, punctuated by a night terror every.single.night he took it that lasted at least an hour When we stopped them, no terrors. Started them again, terors came back. Suggestions, help?
post #2 of 14
first of all, i just want to say that you are working really hard, and it sounds like you're a great mom! sleep deprivation is literally painful... for everyone. if i were you, i would certainly try melatonin. if it's not a good fit, you'll know. the first time i tried it with dd (4, ASD), i gave her 0.5mg or so, and she woke up an hour later screaming, etc. then a few months later, i tried again - this time with just 0.125 (1/8) mg liquid melatonin. it certainly helped her go to sleep more quickly, and still does, but hasn't really done anything for her waking . point is, try the smallest dose possible, and work up from there.
another thing to look at is magnesium. if he's a bath taker, you can do 2-3 cups epsom salts every night before bed. for some kids, that seems to help - or liquid mag.
good luck! i know it's hard, and i hope it gets better.
post #3 of 14
Thread Starter 
Thanks. I don't feel like a very good mom much of the time anymore--I yell way more often than I should and have much less patience, probably because I am so tired myself. I feel like I am missing out on time with my other kids, between lack of energy and dealing with ds3 issues all the time. I will go look for some melatonin probably tomorrow then. I just don't know what else to try, what else to do. He takes prescription dose benedryl off and on for allergies and even that doesn't help him sleep DH and I have been alternating sleeping in the living room which helps some, but we can both still hear him waking, which still rouses us, and leaves the other completely exhausted for having had all night duty.
post #4 of 14
eeeek! No! I don't think you should try melatonin at all without talking to your doctor first. If he's already having trouble breathing, I'd be really worried about it. We do use melatonin with my son and it definitely has some great benefits but it is also not totally without risk and given what you're saying about the breathing, I'd want to clear it with a doctor. Plus, melatonin will not help him *stay* asleep...it just will help him go to sleep. It can make night terrors worse too. Especially if you use too high of a dose. For my son, 0.4 mg was waaaaay too much and gave him night terrors. We use .1mg now which the neurologist thought was crazy but works for him.

Also, how long ago was the sleep study done? Could you maybe get a second opinion on them not being able to "fix" it now?

And finally, having worked in foster care and adoption as a social worker, I am wondering if you would consider play therapy? Maybe it would help with the sleep? Good luck. I know how much sleep deprivation stinks...
post #5 of 14
Aw, CArrie. You are such an amazing mom. REALLY. I don't think I could have made it through a fraction of what you've been doing the past two years.

I would check it with your doctors, but there is some hope with melatonin. Both ds1's neurologist and behavioral psychologist suggested it, and ds1 has been on a melatonin regimen for a couple of years now. This is what works the best for him:

1/2 hour before bed, he gets a half tablet of the peppermint-flavored sublingual ones. I think that's 1.5mg. He gets sleepy, and we put him to bed.

Around 3am, we get up and give him another half tablet. We pop it in his mouth and it dissolves in his cheek. Normally he was waking up around 4am and staying awake, so the 3am dose gives him another wave of sleep that overlaps his previous waking time, and most of the time will keep him asleep until at least 6am.

The dr. also suggested, for some kids, giving a 1/2 tablet at dinner, THEN a 1/2 tablet before bed. He said that gradual building of melatonin over the evening can help some kids' bodies recognize it's time to go to sleep, and it means a more restful night, more normal sleep pattern, etc. This behavior psych. guy, and his melatonin advice, has been such a help for us and ds1...his behaviors during the day, his sleep...it's all been so much better with the help of melatonin!

(FYI, we have an unopened bottle of liquid melatonin if you'd like to try it...just pm me and let me know. I think it's mildly cherry-vanilla flavored, if I remember correctly.)
post #6 of 14
Thread Starter 
APToddlerMama, I missed your post before giving him a dose tonight, but I think we should be ok with the breathing. It is a structural issue--the nasal spine and cartilage in his nose is missing, so there is no "structure" to his nose, and laying down kind of reduces the airway in his nose even more but sleep study didn't really show reduce O2 levels. He can mouth breath just fine, he just "forgets" and tries to breath through his nose, waking himself slightly, if that makes sense. He frequently takes rx benedryl for allergies that is 2x the OTC dose and the sedation/breathing with that has never been an issue for his dr's (and I specifically asked, because it worried me). I will ask at our next appt, though. As for the repair, if they do it too soon, they won't have enough tissue to work with later when he grows more. Hence the waiting til he is older It has been 2y since the last sleep study, and we are due for a repeat but it will be a bit before I can do another one. Play therapy is definitely on our radar, but so far it's apparently not warranted--just "keep doing what we are doing" kind of suggestions, keep meeting needs, setting limits, etc.

nayma, I forgot to mention that although he loves water and baths, it is definitely energizing for him, so I often don't do baths right before bed. I could try a weekend night, though, with the epsom salts. Is that 2-3C in a full bath, barely any water or does it matter the concentration? I will go look for liquid magnesium, too, and see what I can find.

ROM, thanks I am operating on mostly auto pilot at this point. As bad as it still feels sometimes, it is so much better than it was that I am afraid to complain too much And his attachment and most of his other milestones are really coming along well--it just seems to be the self regulation behaviors that are just really behind (sleeping, hunger awareness, sitting still for literally more than 5 sec, impulse control, hitting/kicking, tantruming/crying). To me, all of those seem related to poor quality sleep--it's like an extreme version of a 1yo that hasn't napped well in days and is in full meltdown mode. He goes down around 7 and gets up around 6, he's just up so.many.times in between and is so rediculously restless that even when he is asleep, he is waking me up every 20 minutes sometimes. He will not, can not, be in his own bed for the night. I don't think it's me, this is the 3rd child I have coslept with (although Connor was only for a month) and I never had this problem sleeping with them. I'm glad to know your neuro's plan, that is similar to how I was planning to structure things.

He got .5 ml of liquid tonight at bedtime (7pm) which was .15mg. We gave him a second dose at midnight. He did go to sleep every so slightly faster, and seemed to rest better. He was restless again at the 4 hr mark, dh said moreso than normal but felt like a hall light might have been disturbing him. It's now 1, and I haven't heard anything else from the bedroom. Normally he has been up a few times now, and I've been kicked awake a few more. Fingers crossed. Finished my homework so I guess I should sleep, since I have to be up in less than 5 hours
post #7 of 14
Thread Starter 

Update

So two nights ago, we gave him .05 ml, which was .15 mg at 7 and again at midnight. He seemed to be a bit less restless, according to dh (I slept in the LR, which lets me sleep a little less uninterrupted when it has been really bad) and he took a whole bottle less throughout the night. His breathing was nice and steady throughout, good heavy sleep breathing. He was in a better mood all day the next day, and not a single tantrum while he was home He even sat still during dinner and watched TV! He never sits still through a mealtime, ever. Last night, we doubled the amount to .1 ml, so .33mg at about the same times. Again, more restful sleep, but still fidgety enough to wake me several times, although less than in a typical night (I slept with them last night). When he did wake, he usually settled with no reassurances needed from me, more of the make noise in his sleep rousing like you would expect of a toddler. Another 1/2 bottle less, so down 1 1/2 bottles in 2 nights! (that's about hwo much I have managed to decrease his night bottles in the entire 2 years he has been home!) Again, he woke up happy and no tantrums before school.

My plan is to increase the dose by the same increment again tonight, and see how he does. I suspect that we are right on the cusp of a proper dose for him. This weekend, I am also going to see about moving the midnight dose to 11 and allowing for another dose around 3. He got increasing more fidgetly as the night wore on, and I suspect that the midnight dose is wearing off before it is really time to get up, coinciding with a period of high arousal for him anyway. He starts rousing at around 5, but I can usually put him back to sleep with some work. He needs to be up around 6:30, which is about when he wakes on his own if I get him back to sleep at 5.
post #8 of 14
We use melatonin and have recommended it to multiple moms in our neighborhood. They always call the next day crying with joy that their kids slept 8-9 hours straight.

We use Source Naturals sublingual liquid melatonin. For our 3 year old we use 1/8 of an adult dose. Literally 4-5 drops because too much melatonin can cause nightmares.

Have you ever tried those Breathe Right nose strips? I've never tried them, but have heard great things about them.
post #9 of 14
Quote:
Originally Posted by queencarr View Post
So two nights ago, we gave him .05 ml, which was .15 mg at 7 and again at midnight. He seemed to be a bit less restless, according to dh (I slept in the LR, which lets me sleep a little less uninterrupted when it has been really bad) and he took a whole bottle less throughout the night. His breathing was nice and steady throughout, good heavy sleep breathing. He was in a better mood all day the next day, and not a single tantrum while he was home He even sat still during dinner and watched TV! He never sits still through a mealtime, ever. Last night, we doubled the amount to .1 ml, so .33mg at about the same times. Again, more restful sleep, but still fidgety enough to wake me several times, although less than in a typical night (I slept with them last night). When he did wake, he usually settled with no reassurances needed from me, more of the make noise in his sleep rousing like you would expect of a toddler. Another 1/2 bottle less, so down 1 1/2 bottles in 2 nights! (that's about hwo much I have managed to decrease his night bottles in the entire 2 years he has been home!) Again, he woke up happy and no tantrums before school.

My plan is to increase the dose by the same increment again tonight, and see how he does. I suspect that we are right on the cusp of a proper dose for him. This weekend, I am also going to see about moving the midnight dose to 11 and allowing for another dose around 3. He got increasing more fidgetly as the night wore on, and I suspect that the midnight dose is wearing off before it is really time to get up, coinciding with a period of high arousal for him anyway. He starts rousing at around 5, but I can usually put him back to sleep with some work. He needs to be up around 6:30, which is about when he wakes on his own if I get him back to sleep at 5.
post #10 of 14
Thread Starter 
So, we are up to .3ml 2x night, which is .9mg each dose, for the past 2 nights. He is sleeping really well ,much less restless, AND he woke only 2x last night! And up at about normal time. His mood and behavior is much improved--no meltdown tantrums at all since we started, and only about 2-3 small tantrums that normally would have escaled into big ones. His behavior is improved enough that his teacher at PS commented on it and also mentioned he has been going down for naps easier. He is sitting still to eat for meals, too. And he is actually able to wait a few seconds or so without fussing when I have told him to wait (previously unheard of--he seriously had no patience). Also, curiously, he has been telling us he is tired at night, wanting to go to bed With so many self regulation issues, I think it is huge that he is becoming aware of these sensations, and has figured out that going to sleep makes him feel good/better. I think for now, we will stay at this dose and see how he does. Based on the research articles that I have found, we are still well within dose limits for age/weight. I am so hopeful that we have finally found a way to help him
post #11 of 14
Yay! It's amazing how much difference a bit of sleep can make!
post #12 of 14
Thread Starter 
Sleep is amazing! Not only is he doing better, but I feel almost functional again. 6 hr with only one interruption (I have been waiting til after the first wake up to settle) feels incredible
post #13 of 14
I so feel your pain! I was getting to the point where you are--exhausted, desperate. We started giving my daughter melatonin at bedtime, and the night waking is SO much better. I also started trying to give her more protein at dinner time. I'm betting that part of the problem is that he isn't taking solid food, which you probably can't do much about at this time. I say, go melatonin--it makes an amazing difference!
post #14 of 14
Thread Starter 
Beautyforashes he eats lots of solid food, he just still takes a bottle at night. Long complicated reasons, that basically boil down to a swallowing disorder...he won't drink thickened liquids from a cup.at.all. He can take sips of unthickened water safely, but milk and similar are not really safe unthickened. So he probably doesn't drink enough during the day...the ped and our very conservative dentist both consider the bottles at night the "lesser of two evils" for his health. Sorry if that gave the wrong impression of his age--he is almost 3 1/2y.

And sexysisam, I forgot to respond to your suggestion of the nose strips. We did try them, it was not helpful but was rather funny. His little nose is so flat there was nothing to stick them to to create the tension to hold the nasal passages open If he ever needs glasses, it will be an adventure, as he simply has no nasal bridge.

He is still sleeping so well. He has moved his wake time to about 5/515. Which is when I usually get up, but was my quiet wake up time...But he is usually content to lay in bed and play my phone while I get moving. We are considering trying an additional dose to see if the nights go a little longer, but dh and I keep forgetting to get it ready, and I really want to try a weekend night anyway, in case he sleeps a lot longer. His teachers are continuing to report an improvement in behavior, he is eating better, he is more still when he needs to be (dinner, etc), he just looks and acts like he feels better. I still think there is probably some ADHD that we will deal with more aggressively as he gets to school age, but it looks much more manageable and much less intimidating. The best part of all is he seems happier and is more able to explore his world rather than crashing through it. I am seeing some language gains and better use of verbal rather than hitting type problem solving.
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