This problem has been an issue for two years now, again, after I gave him that seed extract.
He gets a song in his head he doesn't like, and he needs to supplement it with calmer songs to help him go to bed.
Basically, he needs to play songs in his head to fall asleep.
It is every night.
He wants it to go away.
I think it sounds psychotic, and I am very worried.
At the very least, it is OCD, I think.
I went on the PANS sight and he has no other OCD tendencies, and there was a very long list.
The Ped said to listen to them.....not a big deal. He didn't need a radio, so look on the bright side.
I just shake my head.
Any thoughts as to what cam\n be done to remove them. I don't want psych meds. I'm thinking some kind of white noise ap, but I don't want him dependent on things to go to bed.
how tragic
Posted by surprise (Member # 34987) on :
Please research 'melatonin'.
Kirkman brand (NOT Costco Kirkland brand) makes children's supplements, and has a mint chewable melatonin tablet in either 1 mg or 3 mg,
I give it to my child about 15-20 minutes before bed and she sleeps beautifully, falls right asleep and all night.
I think at this point (and I speak from personal experience) instead of being in utter despair your child is 'different' and struggling,
just think of simple ways to help, and acceptance. I could talk about PANS and OCD for hours,
but at this point, maybe just try some easy things to help the symptoms/ health.
Posted by Keebler (Member # 12673) on :
- "sounds psychotic,"
"Basically, he needs to play songs in his head to fall asleep." (end quotes)
So do I. I thought everyone did. If it is soothing to him, fabulous that he has found a way to do that. If it entertains him, great.
It is not psychotic. It's actually something that a lot of people do. It can be the brain's way to start calming down.
He may just need a much larger repertoire so that he can replace the tunes he does not like. I'm very serious about that -- when he learns more songs, he will have better control over this.
Maybe have some fun learning new songs (maybe don't call them "lullabies" but "sleep songs"
Various lullaby CDs would be a great help. I use them a lot, actually. It takes me out of myself, too. The lullabies from other countries, other languages are very nice to set the stage for dreaming.
Other methods such as very, very lose dose melatonin might be helpful, of course but if you try that, start on a Friday night. Not a school night until he's got a couple practice nights in. It can cause grogginess the next day for some. And it may not be for all kids.
I know you are sure he does not have PANDAS, still a doctor who work with those who do could be very helpful, IMO. Seems he does not now have a LLMD ?? -
Posted by Keebler (Member # 12673) on :
- Just yesterday, I spent hours trying to finally figure out the chords to this song. I learned it by listening but want others to be able to sing it (if I EVER get to be with others, again, that is).
I just sent this detail off to a friend who often comes around and we "jam" together - thinking maybe she has my missing CD. This one song is just one of many great ones on that CD.
Dreams Of Harmony VIDEO TRIBUTE to FREYDA -
Posted by Keebler (Member # 12673) on :
- Lyrics - will post when I find my work page -
Posted by Keebler (Member # 12673) on :
- There may be some MUSIC THERAPISTs in your area who would have wonderful suggestions. He might want to start singing or playing an instrument and, if so by day, that can really help with all kind of neuro stuff, even better sleep.
He can learn control over the songs he chooses to drift off.
They know how to choose songs with the best time signature to match the heartbeat . . . the best tunes for sleep really are without lyrics, though (lyrics can keep the brain too engaged).
Also songs in certain keys work better than others, depending upon the person.
HARP music seems to the the most widely suggested.
Tunes without a steady beat, actually, ambient music but not synthesized as that is often so electronic and stimulating in ways not helpful to many with neurological issues.
If there is are percussion instruments listed on the CD flyer's performers' listing, probably not the best for sleep.
Acoustic music (just real instruments, real voices) are best.
Sometimes, synthesized music can work but it can be a bit too "trippy" so screen it first. Brian Eno's "Music for Airports" is held in high esteem for "ambient" music and has some nice passages but I can't bear the entire CD late at night. It does get a little "tweaky" in places/. -
Posted by Lymetoo (Member # 743) on :
It's not psychotic at all to hear music in your mind. Everyone does it.
If that is not true, then I am officially nuts! Posted by Keebler (Member # 12673) on :
- You ask about adding some "white noise" - please don't. It can be very irritating, very. I've tried it. "Pink" noise is actually better but, still, were I to be a child and forced to do this, I would rebel big time, big time.
The audiologists(none who were at all lyme literate) I worked with all thought I should do better with pink noise. I did not. It was sheer torture. Sheer torture.
Instead, good sounds. Talk to a music therapist - not because anything is wrong with him in this regard but because they are musicians, experts who can teach and explore with your son.
This could actually be the start to a fabulous endeavor in music for him. He can sing right now. Singing is always good. I often sing myself "to sleep" in the evening.
When turning off TV and all electronics an hour before bed and too tired to read, singing is just the ticket.
[Well, in honesty, I'm up too late with TV and computer often due to the apt shaking from snoring neighbor - it travels right through my ear plugs (the poor guy, I must add). But the idea to unplug, turn down the lights, and sing does work for me sometimes and is a nice goal - and good for everyone.] -
Posted by lax mom (Member # 38743) on :
I do the same thing. There's a Spongebob episode. I think Spongebob called it an "earworm". Everybody DOES do it.
Posted by lax mom (Member # 38743) on :
I play soothing music for my son before bedtime to calm him down. I just Google youtube meditation music or soft instrumental music. He falls right to sleep. He also has a turtle light that he loves that blinks stars on the ceiling.
Posted by Keebler (Member # 12673) on :
- Oh, no . . . the dreaded "ear worm" songs. See, it is really very normal for this to be irritating to your son. That's natural. He's growing out of that kind of song but just needs some new ones to push the old ones aside (it's nearly impossible to push out, but the brain has room for more).
Some songs are composed in such a way as to make them "ear worms" to kids so the sales go sky high.
Computers have actually "looked" at these and there is a distinct formula for how to make a song an "ear worm". And the formula is finding its way into today's "Pop" music with the singers who are backed up with lots of electronics & flash but not so much natural musical ability.
But back to the kids song that all kids learn (and parents come to hate). At first, they can be fun, energizing songs and it's so cute with little kids as they learn about making sounds into song.
(A bit tongue in cheek, "hear" how Jerry Seinfeld might describe this)
But they have a dark side. A very dark side that can grab hold of the best of us. No one likes the ear worm songs, no one. But it is industry driven to manufacture these.
Commercials, too. I will never forget the Alka Seltzer commercial of my youth. Plop, plop.
Fizz. Fizz. (Just couldn't leave that alone, even after all these years it's still with me every now and then. A Siren's Song.) -
Posted by surprise (Member # 34987) on :
Just wanted to add: There is a difference between 'song stuck in your head' and OCD intrusive thoughts,
which are unrelenting, driving, and consuming to non functioning. Then, if things are not 'set' or 'made just right' 'have to play this particular song' their entire world falls apart/ anger/ rage.
I have had a child up for hours with OCD intrusive thoughts before, and it's incredibly painful and scary.
I am sure you all are aware of this, but wanted to point this out, as the mother of a child with OCD (which is much, much better now.)
A child NEEDS to sleep. Continuing 'bad' experiences about being in bed, the dreaded anticipation, etc. can build, creating a vicious cycle.
melatonin is commonly used in children with neuro issues, and can help facilitate restful peaceful sleep and memories to heal and improve function for the next day.
Posted by GretaM (Member # 40917) on :
2Roads-try not to worry. I think what everyone has said is good.
Are these songs he may have heard or sand during the week sometime?
I quite often have a wee bit of a song playing in my head. And because I don't know the entirety of most songs, it is often a short ditty from the chorus.
Going to bed especially, depends on what I listened to during the day.
Even radio commercial dingles, and those drive me banaanas.
Hugs Posted by 2roads (Member # 4409) on :
I'll say it again....I love you guys.
I wasn't sure what the concencus would say to my dilemma, but I am pleasantly surprised. I feel better already.
Thanks Keebler for your insight on the white noise. I would never force anything on him like this. What's pink noise? Can't say I've ever heard of that. It's sad to hear about the tribute. Grateful for the lullabies but sorry about the artist. You "jam" Keebler....that's so cool. Wouldn't have expected it. No particular reason, just...cool. I think he would enjoy the music you suggested-thanks. I am curious about a Music Therapist. If this town doesn't have one I'll be a monkey's uncle, even though it's small, there's a lot of music here.
I did the Melatonin Surprise, but not that brand. Thanks for the label. One good thing is that he has started to put himself to bed, aside from the prayer he and his father say. He also drifts off now within 15-20 minutes. He doesn't cry about the songs anymore or find himself stuck in an hour of dealing with it. It's 15 -20 minutes and then the songs are done. If I go back on Melatonin I will try what you suggested.
Laxmom, glad to hear your son enjoys the soothing music, and goes to bed. I like the visual idea as well. Need to look into that option. I think he would like that. Spongebob...now you got me singin' it. Ahhhhhhh!
I think these are songs he hears on the radio daily Greta. At one point he turned the car radio off in an effort to get away from it. Now he turns it on, and doesn't fret. I guess the trick then is to know very little lyrics, hunh?..... It reminds me of this radio network, and how they were having people sing words to music being played. basically karaoke (? sp). The one guy came on he started singing " pick out Jed in a lineup, don't carry me to far away"......Of course that was supposed to be big old jet airliner don't carry me to far away. Sign of the times.
What am I gonna do with u Tutu. If ur nuts, then so am I.
to all.
Posted by 2roads (Member # 4409) on :
ps- Thanks Surprise for expanding upon our situation w/r/to OCD tendencies. I felt a lot better reading about the differences. I am sorry for what you have dealt with. It sounds like, though that, things are getting better. I prey so. I also get the outlook of things you shared with me- Being accepting, and working in small health ways for a better tomorrow.
Posted by Keebler (Member # 12673) on :
- yes, there is so much involved with all this and a very wide scale for when any thought or activity runs away with us. I am glad that we are learning more about the reasons, though, and what can help, regardless of what category.
re: "jam" ?
Oh, I use a very loose definition of that word in both regards of the, ummmm, artistry / concentration involved and my endurance of the "session" which is merely minutes.
Still, any degree of music made is a good thing. I mostly lie back and hear what's going on in my friend's life or we settle some of the world's problems were we to be in charge. -
Posted by GretaM (Member # 40917) on :
Big hugs right back to you, 2Roads
Wow! That is awesome news about putting himself to bed and 15-20 mins!
If you have any tricks for falling asleep easier, I am glad to hear any...lately I am tossing and turning.
Posted by 2roads (Member # 4409) on :
Now maybe your just being too modest Keebler- Sounds like a good time either way.
I am happy with it Greta. Something good I focus on. The only thing that seemed to cause this was going to the gym and doing the dry heat sauna. That's my trick...I guess. We've gone about 42 times now at 20 minutes a pop. We are increasing 10 extra minutes total a week.
Funny but watching tv before bed simmers me down. Go figure.
Posted by lax mom (Member # 38743) on :
Btw, now I can't get that spongebob song out of my head
Sooo common.
I always have some thought, worry, song, etc, in my head. I don't think it's possible to have nothing going on in your head unless you were an experienced monk meditating, or someone who dissociates.
Posted by lax mom (Member # 38743) on :
PS. 2roads please don't apologize for posting one time or a billion times. This is your forum too Posted by 2roads (Member # 4409) on :
Thanks lax. I am trying to get my son into private meditation lessons, so it's funny you mention it.
Thanks also for the kind words.
Posted by Keebler (Member # 12673) on :
- Yoga might be better suited for a child or for anyone who has any kind of overstimulation.
It calls for focusing on DOING certain things while also focusing on breath and relaxation.
Meditation forces stillness. I could never do that, even with a professional meditation trainer. I needed something to DO, too. I just cannot possibly do meditation -- but I just come to it a different way.
I prefer Qi Gong but don't know if there are kids' classes in that. Tai Chi might be too advanced for kiddies but they are similar.
I do know there are many classes of yoga designed specifically for children all over the country. And if no class near you, a certified yoga teacher could like help. I'm sure there is a national organization where they list certified instructors -- those teaching children would require special training for there are some differences.
While I know your son is not in the range of autistic, parents of autistic kids will likely know of the kinds of classes and instructors in your area who are extra special and good with kids. -
Posted by Keebler (Member # 12673) on :
- According to Dr. B at the ILADS conference this past autumn, Coconut Oil, 1 TBS every 8 hours will nourish the brain tissue to help calm the neuro-exitability so common with lyme.
I do not know what a child's dose would be. -
Posted by CD57 (Member # 11749) on :
I have had intrusive, OCD thoughts for 7 years with this disease. I am convinced it has to do with inflammation in gut or brain or both. It's incredible soul-sucking and I can't imagine this happening in a child. I'm a big girl and while I have gotten used to them, I remember how I used to rev up my nervous system in overdrive when it happened.
i still don't know what causes them, I think it must be cytokines in the brain or gut.
The melatonin is interesting. This makes me hallucinate and have toxic, flashing images in brain. Hoewever it used to help, and it may be dose dependent.
I would work on brain soothing supplements....right now I am looking into niacin for MTHFR calming, based on what I read on another site and a comment that my doc made once. Coconut oil you probably can't go wrong with!
Posted by CD57 (Member # 11749) on :
BTW -- how do people make themselves swallow coconut oil? It triggers my gag reflex, horrible!
Posted by Keebler (Member # 12673) on :
- If any oil does causes one to gag, I'd sure not force it. Or mix it in food or an small evening snack of quinoa.
There are other oils that are similar in nature. Sea Buckthorn Oil is very good. Hemp seed oil, etc. Amounts would not be the same across the board, though. Extra Virgin Olive Oil (it should be the EVOO, not just any olive oil) also has fabulous benefits and is best with food.
Most fish oil & some other supplement oils comes in capsules (but if possible, it's best to leave those behind. Paying for a lot of that capsule material, the labor, machine time, etc.). I'd rather just gulp, chaise with water or green tea.
Perlmutter is one author who has written about brain supplements to compare. -
Posted by 2roads (Member # 4409) on :
That's a good point keebler. I will talk with the instructor and see if we should do yoga or meditation. Maybe we should start with yoga and work our way up to meditation.
Keebler, do you know what would be a child safe supp to increase oxygenation of the brain?
Posted by Keebler (Member # 12673) on :
- Sing, walk, dance . . . just be a kid. That will get circulation moving and oxygen to the brain. Just move like a kid. Go for activities that just sound like fun, fun, fun. [Being mindful of what might be too much for endurance longevity, of course.]
Laughing, too, is key. Maybe learn how to do comedy? Even for a little kid, this can be a fabulous exercise. Children's Theatre groups could guild that. Or just being silly, silly, silly. It's good for anyone.
Watching silly movies will even help. Running around with friends even better with no agenda or goal. Unstructured time is really important. They will come up with some fun stuff on their own (I hope). If he is having fun, his brain will benefit.
But, it is best "UNPLUGGED" away from computers and TV, away from all electronics, really. -
Posted by Lymetoo (Member # 743) on :
CD57 .. I don't "eat" coconut oil. I put some in my mouth, hold it there a few seconds, then down it with water. If it is rather melty, then down it right away.
I was downing it like a pill, but one time I took in too much and nearly choked! HA! Didn't scare me since I knew it would melt on the way down, but I'm more careful now.
Back when I could eat such things, I would put a tbsp or two in my mouth and then eat a bite or two of an Atkins bar.
Posted by MannaMe (Member # 33330) on :
I know this isn't for Lyme people, but pretzels dipped in coconut oil.... MMMmmmmmmmm!!
Posted by randibear (Member # 11290) on :
Hey I play music in my head and recite my fAvorite songs too. If Im stressed and cant sleep I do this.
Nothing wierd about it. Better than counting serta sheep.
I play all my old favorites.
Posted by surprise (Member # 34987) on :
Re: coconut oil, I put large tablespoon in a hot drink 3x a day, black coffee in a.m. w/ stevia, peppermint hot tea later, it melts, you get used to the taste. It is worth all the benefits.
We cook and bake w/ it everyday, but if you run a bit hypoglycemic like me, adding it 3x a day can make a big difference.
My H has a habit of belting out horrible 80's tunes, which drives me mad when they hang around my head and I start singing them later. But singing, to me, is never bad. It's a sign of happiness :-)
It's the line that crosses into OCD that's a different story altogether, which is what I thought perhaps the original issue might be. So glad it's not.
Posted by 2roads (Member # 4409) on :
Having fun is really necessary Keebler. Laughing and getting unstructured excercise is ideal. Thanks for bringing me back to earth. Sometimes though, that time is not unplugged. It seems that this new generation really requires reminders about that to get out and go. I always used to say I'd rather live life then watch it on TV.
We have a trampoline which scares me, but at the same time, it is great for excercise and lymphatic drainage. It is rated high in safety, well made, with a sturdy net. He really needs to get out on that. He loves to pretend he's a Ninja and have stories on that, but some friends that come over, don't want to bounce all that long, so back in they go. He usually likes to stay out and bounce when he's with someone. Not alone though.
Thanks Randi for your experiences. It helps to know others do the same. I think I'll feel better about it when it's not every night. Even if he can't shut it off, it seems we can't either. But, less frequently will make me feel better.
Do you guys think coconut oil would be good for my 11 year old? i was giving him some last Spring as you prepared it Surprise. I heated a drink (milk ) and add a little at night.
Right now he is taking Gummi Vitamins and mineral, three a day. He's taking two Nordic Natural vegetarean Algae based DHA and EPA capsules. It's more DHA then EPA. Lastly, every other day he takes one Mag glycinate pill which in one week equals an adult dose for one day. So it's 400 mg a week. Hopefully on the lower end just to supp what his diet isn't getting. It's for muscle twitches he has and maybe to help with sleep.
He's been taking lunches to school, but wanted to have the school lunch today. he said they are not allowed to do both. I am trying to wean him into bringing lunch everyday. So, i said to see if he could get a menu, and if he really likes something, he can take school lunch, otherwise he brings from home. I know that doesn't eradicate the issue cause one exposure can set us back, but it's a start.
Just spoke to my husband brother about bed-wetting (other thread). My sons uncle used to wet the bed since birth, and stopped around ages 12 to 13. He doesn't remember a lot, but he remembers washing his own sheets on a pretty regular basis, around age 11. Hard to believe since he had a stay at home Mom. I guess it was a form of punishment. I think learning to wash s a great idea, but I would not have chosen his sheets.
But then the Mom b-dived to NC with the daughter, and left him with my husband and their Dad. So, I'm sure he did a lot of washing not too long after that.
Posted by marypart (Member # 27012) on :
Bedwetting to later ages is extremely genetically determined. In many, many cases it is a deficiency of the hormone released at night (I forgot what it is called) that reduces the amount of urine created while we sleep. There is a medication to help, ask your pediatrician.
I know families that have this in the family. One family, both parents had it and both children. They all stopped suddenly around 12-13 years old. The theory is that for those families, more hormone starts being created later in age. Especially for males, the age the father stopped wetting at night is the same as the age the son stops.
Both of the children in the family I knew wore Depends at night. It ended the wet beds and resolved the problem. They were very quiet about it and none of their friends even knew about it.
Posted by Lymetoo (Member # 743) on :
So if he is eating school lunches, he is not gluten free, right??
There is a HUGE brain/gut connection and with gluten and dairy being such major factors in this, I would look to changing his diet in a major way.
Also.. was wondering if he is taking a vitamin at bedtime? That could be stimulating.
Posted by 2roads (Member # 4409) on :
Thanks Marypart, My son's dad did not wet thebed, but his brother did. I had a few accidents in my elementary years, but not every night. So, i don't know if I can attribute it to genetics. I don't know if it counts that his paternal uncle wet the bed, not his Dad.
Would give him meds though.
I am making lunches Tutu, but not everyday. He took his lunch 4 times this week. I am not gluten free yet either. Still working on that front.
I don't give him a vitamin at bedtime, but every other night I give him 100 mg of Mag glycinate. That's a fourth of the adult daily dose of it per directions. It's from Soloray.
Tutu, I am pm ing you in another area of your expertise.
Thanks
Posted by 2roads (Member # 4409) on :
ps-would NOT give him meds. oops,
Posted by Naomi Anna (Member # 43076) on :
Keebler, thanks for the coconut oil info . i have been taking it and cooking with it, but I didn't know about all the good it does for nourishing the brain!
Posted by Lymetoo (Member # 743) on :
2roads.. your PM box is full .. and I just emptied mine
Posted by 2roads (Member # 4409) on :
Did you get me email though?
I will empty-thanks.
Posted by 2roads (Member # 4409) on :
I'm rethinking. I think you did or it would've said it couldn't be sent...hah
Posted by map1131 (Member # 2022) on :
I have 13 yr old grandson that has horrible skin issues since he was a toddler. It's eczema, small bumps that literally cover his arms and legs.
Many times over the years I've suggesting stuff orally to help him get rid of this???
Well I introduced him to coconut oil. He was in my bathroom and asked me what I had for his dry skin. He told me it's driving me crazy.
I proceeded to tell him how lotions are not always good ingredients and I discovered after a shower that coconut oil does great things for my skin.
He took his shirt off and proceeded to rub it all over him. He legs were so dry it looked like they hurt. He also rubbed it all over his legs and face.
He loved the way it made his skin feel. So I told him, if you will use it I will give you one of my jars. He assured me he would do it daily.
While over there the other evening he showed me the tops of his arm where the bumps were so bad and it's amazing how much it's helped him in just a couple weeks.
I cupped up another batch for him to take to his dad's house for use there. I had told him many folks eat it so it will help from the inside out.
Sure enough he tried it and wasn't really fond of it. Maybe I'll show him how to oil pull it. His mom asked him why would you taste the lotion?
He explained to her coconut oil is food too. I laughed. At his age this eczema issue is eventually going to be embarrassing to him.
Children are so much more aware than adults sometimes. Ask your son which type of music makes him feel good?
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If ur nuts, then so am I. ![[Wink]](wink.gif)
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