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Please explain?

Some children with Periodic Fever Syndromes sleep more with their fevers while

others seem to have disturbed sleep patterns when fevering.

My son ph started fevering early at 5 months old... he never slept through a

night (even without fever) until he was about 4-5 yrs old. I am sure it became

habit by then.

When fevering he would fever extremely high up to 107.5... for at least 4 days

..... he would NOT sleep like most... instead his sleep was disturbed during his

fever event. I would sit up with him at night to comfort him and I slept in his

room during his febrile events... concerned with the fevers, of course and

having to alternate tylenol and Ibubrofen every 3 hrs it was easier for me. I

actually bought a sleeper sofa and added it to his room.

The brain is effected from high fevers .... it is not the actual fever

disorder... but the fever... Just as any child who gets sick and has a high

fever... some become quite lethargic while others become more sensitive and

awake easily...

God Bless

Fran

Fran Bulone RN

Mom to ph 7yr CIAS1 mutation 11/05

Waxhaw NC

/

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Our (3) always has a fitful nights sleep right before an episode

occurs. She cries in her sleep and starts to snore.

mom to (3 )

sleep problems

okay so is new to us, like 2 weeks new. la is 16 months

old and just diagnosed. she is have alot of sleep problems....anyone

know if its related??

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  • 4 weeks later...

I don't know whether this will work for a kid over babyhood (the last

time I tried this), but when my son had trouble settling to sleep and

would get on a crying jag, I'd take him outside for a bunch of fresh

air. Maybe it was the change in scenery plus the fresh air, but it

really worked. Good luck...

ntrop31 wrote:

> I'm right in the middle of an ocd crisis. My son is going through a med

> adjustment (reducing Geodon, increasing Lexapro) and tonite he's having

> a rage because he fears he won't be able to sleep. He's begging for

> sleeping medicine. My husband just took him out for a ride in the car

> to try to calm him down. Does anyone have any suggestions? His

> psychiatrist refuses to give him sleeping medication--we've asked

> several times. He's reducing the Geodon so that he can get off it and

> start Anafranil. But what are we going to do in the mean time if he

> has a rage every night? Thanks for listening. Patty

>

>

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Hi,

My son's psychiatrist suggested that we use Valerian Root for Tommy years ago

when he was xperiencing insomnia due to a side effect of Prozac. I am not a

physician, nor do I know if it is OK to use Valerian with the medication that

your son is currently taking. You might want to run this past your son's Dr.

Joye in Southeastern PA

ntrop31 <ntrop31@...> wrote:

I'm right in the middle of an ocd crisis. My son is going through a

med

adjustment (reducing Geodon, increasing Lexapro) and tonite he's having

a rage because he fears he won't be able to sleep. He's begging for

sleeping medicine. My husband just took him out for a ride in the car

to try to calm him down. Does anyone have any suggestions? His

psychiatrist refuses to give him sleeping medication--we've asked

several times. He's reducing the Geodon so that he can get off it and

start Anafranil. But what are we going to do in the mean time if he

has a rage every night? Thanks for listening. Patty

---------------------------------

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There are also some homeopathic remedies that may or may not interfere with

medications. We use Kiddie Calmer. I haven't used it for sleep, that hasn't

been an issue. but, you might ask your physician.

J

Re: Sleep problems

Hi,

My son's psychiatrist suggested that we use Valerian Root for Tommy years ago

when he was xperiencing insomnia due to a side effect of Prozac. I am not a

physician, nor do I know if it is OK to use Valerian with the medication that

your son is currently taking. You might want to run this past your son's Dr.

Joye in Southeastern PA

ntrop31 <ntrop31@...> wrote:

I'm right in the middle of an ocd crisis. My son is going through a med

adjustment (reducing Geodon, increasing Lexapro) and tonite he's having

a rage because he fears he won't be able to sleep. He's begging for

sleeping medicine. My husband just took him out for a ride in the car

to try to calm him down. Does anyone have any suggestions? His

psychiatrist refuses to give him sleeping medication--we've asked

several times. He's reducing the Geodon so that he can get off it and

start Anafranil. But what are we going to do in the mean time if he

has a rage every night? Thanks for listening. Patty

---------------------------------

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Patty~ How old is your son? Does he have a history of insomnia or is this a

new worry? Is your main concern the insomnia or the rages? My son (12) went

thru many days/nights of rages during med changes. I tried not engaging but he

would follow me around and pick at me until I was angry. He said he " needed " me

to fight with him---very exhausting for everyone in the house. Finally I

learned that if I would just sit down and listen to him and try to offer options

(even if they made no sense) he felt better. Also it helped if I sympathized

with his fear.

I don't know if this will help but I'm praying for you and I certainly

understand what it feels like. Good luck, keep us posted.

Glenda

ntrop31 <ntrop31@...> wrote:

I'm right in the middle of an ocd crisis. My son is going through a

med

adjustment (reducing Geodon, increasing Lexapro) and tonite he's having

a rage because he fears he won't be able to sleep. He's begging for

sleeping medicine. My husband just took him out for a ride in the car

to try to calm him down. Does anyone have any suggestions? His

psychiatrist refuses to give him sleeping medication--we've asked

several times. He's reducing the Geodon so that he can get off it and

start Anafranil. But what are we going to do in the mean time if he

has a rage every night? Thanks for listening. Patty

---------------------------------

Get your email and see which of your friends are online - Right on the new

.com

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that's what I was thinking - something natural - always check first -

my doc knows nothing about it so I go by the health food store or here

but I don't have any personal info re: this -sorry - what about good

old warm milk??? too gross???

good luck

eileen

Quoting dina_n_jones <dina.n.jones@...>:

> Would melatonin be okay with his Dr?

>

>

>

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How old is he? What is the docs suggestion, if he says no to sleep meds?

Things that work with my 5 yo dd are

a warm bath

watching a movie in bed (big one for her, has helped almost all of her sleep

problems, it gets her mind off everything and relaxes her)

listening to relaxing music

breathing techniques

me reading a book outloud to her

visual imagery (another one that works great for her, during heavy OCD times it

helps calm and relax her also)

doing yoga or lots of stretches before bed, or stretching while in bed

giving her something to think about while going to sleep - start making a

christmas list, what she wants to wear for halloween next year, things like that

which I know she wont obsess or worry about

we start with visual imagery to get her into a certain place (collecting shells

on the beach for example) and then I give her an " assignment " - something to

tell me in the morning (such telling me how many shells she collected, or the

colors of the shells, or to describe the prettiest shell she found) this one has

worked really well

when all else fails, I lay with her or have her lay with me in my bed.

Good luck

Sharon

Sleep problems

I'm right in the middle of an ocd crisis. My son is going through a med

adjustment (reducing Geodon, increasing Lexapro) and tonite he's having

a rage because he fears he won't be able to sleep. He's begging for

sleeping medicine. My husband just took him out for a ride in the car

to try to calm him down. Does anyone have any suggestions? His

psychiatrist refuses to give him sleeping medication--we've asked

several times. He's reducing the Geodon so that he can get off it and

start Anafranil. But what are we going to do in the mean time if he

has a rage every night? Thanks for listening. Patty

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we always have the tv on at night. It's not the ideal solution, but it really

helps ds settle his mind enough to sleep. I also like it. Of course, he still

sleeps with us and I don't see that changing anytime soon.

J

Sleep problems

I'm right in the middle of an ocd crisis. My son is going through a med

adjustment (reducing Geodon, increasing Lexapro) and tonite he's having

a rage because he fears he won't be able to sleep. He's begging for

sleeping medicine. My husband just took him out for a ride in the car

to try to calm him down. Does anyone have any suggestions? His

psychiatrist refuses to give him sleeping medication--we've asked

several times. He's reducing the Geodon so that he can get off it and

start Anafranil. But what are we going to do in the mean time if he

has a rage every night? Thanks for listening. Patty

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Glenda,

My son is 14. Insomnia has been a problem off and on I think since he

started meds about 18 months ago (hard to remember exactly when it

started). He really hadn't had a rage in a long time, so I guess it

must have to do with the med change. It's so heart breaking to see

him in such distress begging for sleeping medicine. So I guess I

would have to say both the rages and the insomnia are a concern. When

he returned home from the car ride with my husband last night, he was

calm and went right to bed. I knew once the Geodon kicked in he

would be able to fall asleep. He apologized for his rage. Today,

instead of giving the Geodon a.m. and p.m. we're going to give it all

at bedtime (doc said this would be ok). I hope he has a better night

tonight. I hate med changes! Thanks for your input. I hope you have

a good day (with ocd you never know). Patty

> I'm right in the middle of an ocd crisis. My son is going

through a med

> adjustment (reducing Geodon, increasing Lexapro) and tonite he's

having

> a rage because he fears he won't be able to sleep. He's begging for

> sleeping medicine. My husband just took him out for a ride in the

car

> to try to calm him down. Does anyone have any suggestions? His

> psychiatrist refuses to give him sleeping medication--we've asked

> several times. He's reducing the Geodon so that he can get off it

and

> start Anafranil. But what are we going to do in the mean time if he

> has a rage every night? Thanks for listening. Patty

>

>

>

>

>

>

> ---------------------------------

> Get your email and see which of your friends are online - Right on

the new .com

>

>

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Sharon,

My son is 14. The doc's thinking was that the obsessive thoughts were

causing him to not be able to go to sleep and that the Geodon would

help with the thoughts so he would be able to fall asleep. Well, as

it turned out the Geodon didn't help with the thoughts (the

compulsions seemed to get worse as we increased the Geodon). But the

Geodon does have a sedative effect and that's what helped him get to

sleep. So we're tapering off the Geodon and it's going to be

replaced with Anafranil which is supposed to help with the obsessive

thoughts and also cause sleepiness. I hope it works. Thanks and good

luck to you. Patty

>

> How old is he? What is the docs suggestion, if he says no to sleep

meds?

>

> Things that work with my 5 yo dd are

> a warm bath

> watching a movie in bed (big one for her, has helped almost all of

her sleep problems, it gets her mind off everything and relaxes her)

> listening to relaxing music

> breathing techniques

> me reading a book outloud to her

> visual imagery (another one that works great for her, during heavy

OCD times it helps calm and relax her also)

> doing yoga or lots of stretches before bed, or stretching while in

bed

> giving her something to think about while going to sleep - start

making a christmas list, what she wants to wear for halloween next

year, things like that which I know she wont obsess or worry about

> we start with visual imagery to get her into a certain place

(collecting shells on the beach for example) and then I give her

an " assignment " - something to tell me in the morning (such telling

me how many shells she collected, or the colors of the shells, or to

describe the prettiest shell she found) this one has worked really

well

>

> when all else fails, I lay with her or have her lay with me in my

bed.

>

> Good luck

> Sharon

> Sleep problems

>

>

> I'm right in the middle of an ocd crisis. My son is going through

a med

> adjustment (reducing Geodon, increasing Lexapro) and tonite he's

having

> a rage because he fears he won't be able to sleep. He's begging

for

> sleeping medicine. My husband just took him out for a ride in the

car

> to try to calm him down. Does anyone have any suggestions? His

> psychiatrist refuses to give him sleeping medication--we've asked

> several times. He's reducing the Geodon so that he can get off it

and

> start Anafranil. But what are we going to do in the mean time if

he

> has a rage every night? Thanks for listening. Patty

>

>

>

>

>

>

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Me too. It's a habit I started in college. It makes hubby crazy if

I forget to put it on a timer.

Bonnie

>

> we always have the tv on at night. It's not the ideal solution, but

it really helps ds settle his mind enough to sleep. I also like it.

Of course, he still sleeps with us and I don't see that changing

anytime soon.

> J

> Sleep problems

>

> I'm right in the middle of an ocd crisis. My son is going through

a med

> adjustment (reducing Geodon, increasing Lexapro) and tonite he's

having

> a rage because he fears he won't be able to sleep. He's begging

for

> sleeping medicine. My husband just took him out for a ride in the

car

> to try to calm him down. Does anyone have any suggestions? His

> psychiatrist refuses to give him sleeping medication--we've asked

> several times. He's reducing the Geodon so that he can get off it

and

> start Anafranil. But what are we going to do in the mean time if

he

> has a rage every night? Thanks for listening. Patty

>

>

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I started it when I lived alone. It kept me from hearing sounds and the dog from

barking. I lived in a kind of rough neighborhood, so there was a lot of sounds

at night. It also helps me relax. I have a collection of tv shows that I watch

on a portable player, it is quiet. Bad habit, but it helps ds and me get to

sleep.

J

Sleep problems

>

> I'm right in the middle of an ocd crisis. My son is going through

a med

> adjustment (reducing Geodon, increasing Lexapro) and tonite he's

having

> a rage because he fears he won't be able to sleep. He's begging

for

> sleeping medicine. My husband just took him out for a ride in the

car

> to try to calm him down. Does anyone have any suggestions? His

> psychiatrist refuses to give him sleeping medication--we've asked

> several times. He's reducing the Geodon so that he can get off it

and

> start Anafranil. But what are we going to do in the mean time if

he

> has a rage every night? Thanks for listening. Patty

>

>

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  • 1 year later...

My son Noah is 6 and has had sleep problems since he was born. I have been on the hunt for what seems like for ever to get to the bottom of it and get my poor son a good night of rest. At 3 he had a sleep study done and he had sleep apnea from obstruction and central. So, he got his T and A taken out soon after. Still he would sit up and then flop forward or to the side, he will toss all night long. He doesn't really get up or take a walk or anything like that but just sits and then flops all night long. We too have to go to sleep with him or he will not go to bed. That may be the reason he doesn't go walking off cause he sleeps with us? He could stay up forever if allowed and go non stop. You can see that he is tired but he will fight it off. It used to be a night mare getting him to bed and once he did then he would some times take hours to even fall to sleep, he would just be staring to no where, he will pull one strand of my hair at a time ( soothing to him, not me), or play with his fingers. Used to drive me nuts. Then full day kindergarten started last fall and well, it tired him out and he then started going to bed with ease and would even fall to sleep with in 10 to 20 min. instead of hours. He was tired during his day and would fall to sleep in the car on the way home from school.

We took him to a Neurologist in the fall and got a second sleep study. This time, no central and no obstruction meaning no apnea, He is only getting 19% REM.so now being called insomnia. So, he then had an EEG. and in Dec. that came back abnormal. We have done lots and lots of blood work. Now referring Noah to a GI doctor from the last blood work. not sure why? But, anyway, with the abnormal EEG they are not saying seizures but say, it could be so it is up to us to medicate for this or not. We have not yet. We go back next month to talk with the doctor and I hope to find some answers. I do not care to give my son meds that he may not need. They also think possible pain may be waking him up in the night like restless leg and such? Since Noah cant tell me we have no idea if he is or not. They did some blood work and his ferretin was low but iron was good. I guess some times with low iron it can cause sleep problems. It is very frustrating to me and I just want Noah to get a good nights rest each night. I feel so bad for him. Noah does seem to have high pain tolerance and doesn't complain of pain for anything. At night when I lay with him to get him to sleep I try and see if I can feel him do anything strange or if he is seizing but I always seem to fall to sleep along with him.

since we pulled him out of school in late Nov. to home school him. he has had about three nights like those old days, where he took hours to go to bed. I thought I would lose my mind but thankfully it only happened those few times. I would hate to go back to those days of him not falling to sleep. It was awful. A friend who's ds child the same age, falls to sleep so easy and early, just cant imagine what I go through and says, good thing I stay home, but heck, its hard on me too even if I do stay home.

We have tried melatonin also, both kinds and didn't really work.I do not know if his level is low or not, they never told us that. I heard that Noni juice may help or something like that but have not tired it. If anyone knows of anything I would love some info to help Noah get some sleep. I would say that with Noah not getting all the sleep he needs he is still such a happy boy, full of energy, pretty much in a good mood all the time. We do not have behavior issues with him at all. When in school he did get tired towards the mid to end of the day. He would want to lay down on the floor or put his head down in class. I just kept telling them, he doesn't get sleep so they didn't get upset with him. His therapy sessions are after school hours and he would be tired for them but did good most of the time for them. Now with no school he is better rested for them. He does tire out easy and we have to take our stroller every where with us or we are carrying a 50 pound kid. I sure hope to have an answer soon for Noah and to get him some sleep. I hope that you find answers for your son as well. keep me posted and let me know what you find out and if anything works to get REM for your son. Blessings, Beverly Mom to Noah (6 ds)Start the year off right. Easy ways to stay in shape in the new year.

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Hi ! Welcome!!! We meet again! To post the question on here was just what I was going to suggest. Glad you thought of it. These moms are terrific to help if they can. I hope you get lots of responses and that she finds some answers. Blessings, <xpagal1991@...> wrote: I am the president of our local DS group in Northeast OH/Western PA. One of our members e-mailed me with a question

and I told her I would post here to possibly get her some help. As she is not a group member, I will pass any info. on to her. Please indicate in your reply if she can e-mail you directly and include that address. Thanks fo much.Here is her e-mail: I am looking for anyone who is experiencing sleep problems with their child. These are the things that I am looking for:Difficulties with bedtime routine (reluctance to go to bed, inability to settle without a parent being present, insisting on sleeping with someone), early waking and night walking. Then I am looking for if their child then shows signs of irritability, aggression and hyperactivity during the day. Because of lack of sleep and behavioral problems the child then has trouble concentrating to learn. My son is 7 years old. He has had sleep problems for years. It seems to be getting worse. His sleep is very restless and he

wakes frequently. He is up roaming from bed to bed several times throughout the night. Now I believe he is even sleep walking. He never tires at night. I was told that it might be due to his melatonin level being low. He does get a dose at bedtime to help him fall asleep. However, he never remains asleep. We have done sleep studies and have gotten no answers or help. All they told me was that he did not have REM sleep. I have begun my own research to see what I can do to help . His behaviors are largely effected by his lack of sleep during the day and he is having trouble in school. If anyone has gone through this and has some suggestions I would greatly appreciate the help. I just don't know what else to do or who to turn to for answers. (one and only wife to Fred; mom to Kari, Melody, Faith, Heidi, Isaac, Josiah, , Alana, and ! Yes, they're all ours!) Is.

40:31 "They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not be weary, they shall walk and not faint."

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, Yes, we check on his heart every two years. He just went in Dec. and still has one small hole. He had two at birth but one closed by the time he was two. Still just a wait and see at this point. Cardiologist says, his being tired wouldn't be from the hole but from the lack of sleep. Thanks for asking. BeverlyStart the year off right. Easy ways to stay in shape in the new year.

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In a message dated 1/23/2008 8:41:12 P.M. Central Standard Time, angelahurley1@... writes:

Bev,

My daughter, na (8ds), has the same sleep issues. She also had her tonsils & adenoids removed. We are still searching for answers.

, I hope that you too can find answers soon. keep us posted on what ever you find out that may work. Blessings, BeverlyStart the year off right. Easy ways to stay in shape in the new year.

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Hello,

My son was very similar. Turned out his tonsils and

adenoids were blocking his sleep thus chronic waking.

He resisted sleep we think now because he knew it was

going to be tough. After sleep study it was also

determined that he got about 20 seconds of REM sleep

at night. This is what we did and still do now:

1) Tonsil and Adenoid removal new procedure called

cobolation - much easier on kids, no bleeding,

swelling or blisters. Harder to find docs that do it

but worth it in the end

2) Blackened his room with dark shades and or multiple

sheets over it.

3) White noise - we use radio Static CD as it works

through thunderstorms. That way he is has a focus of

sleep instead of house noise or outside noise or even

other sibs noise.

4)Nighttime routine - Bath, brush, book, Bed. Give

some choices but make sure its for the same goal.

5)When starting this we (husband or I) would stay in

his room on the other side, till he was asleep and put

him back to bed every time with out saying 1 word.

One night was 40 times but got better.

6) Last but the most important!!!! MELATONIN we use

Natrol or anything from the Vitamin Shoppe. We

started low and worked up. Told our nurologist about

it. He said he has heard more and more on it and said

that it was ok to up it to 5-6 mg's if we would like.

I would also suggested the TIME RELEASED! as it give a

solid amount all night long. We tried the regular and

it worked but he would get up once. Now nothing.

When he gets up he is a great kid and has made many

improvments! I would start with 3mgs and if it don't

work move up. Give it a few days, then go. Start it

on a Friday Night to avoid schools.

let me know if you need anything else!

B

--- <xpagal1991@...> wrote:

> I am the president of our local DS group in

> Northeast OH/Western PA.

> One of our members e-mailed me with a question and I

> told her I would

> post here to possibly get her some help. As she is

> not a group

> member, I will pass any info. on to her. Please

> indicate in your

> reply if she can e-mail you directly and include

> that address.

> Thanks fo much.

>

> Here is her e-mail:

>

> I am looking for anyone who is experiencing sleep

> problems with their

> child. These are the things that I am looking for:

>

> Difficulties with bedtime routine (reluctance to go

> to bed,

> inability to settle without a parent being present,

> insisting on

> sleeping with someone), early waking and night

> walking. Then I am

> looking for if their child then shows signs of

> irritability,

> aggression and hyperactivity during the day.

> Because of lack of

> sleep and behavioral problems the child then has

> trouble

> concentrating to learn.

>

> My son is 7 years old. He has had sleep

> problems for

> years. It seems to be getting worse. His sleep is

> very restless and

> he wakes frequently. He is up roaming from bed to

> bed several times

> throughout the night. Now I believe he is even

> sleep walking. He

> never tires at night. I was told that it might be

> due to his

> melatonin level being low. He does get a dose at

> bedtime to help him

> fall asleep. However, he never remains asleep. We

> have done sleep

> studies and have gotten no answers or help. All they

> told me was that

> he did not have REM sleep. I have begun my own

> research to see what

> I can do to help . His behaviors are

> largely effected by

> his lack of sleep during the day and he is having

> trouble in school.

> If anyone has gone through this and has some

> suggestions I would

> greatly appreciate the help. I just don't know what

> else to do or

> who to turn to for answers.

>

>

>

> 1. Anything suggested on this site or opinions

> offered are not intended to be medical or

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Bev,

I was wondering if you have checked his heart?

B

--- bal93@... wrote:

> My son Noah is 6 and has had sleep problems since he

> was born. I have been

> on the hunt for what seems like for ever to get to

> the bottom of it and get my

> poor son a good night of rest. At 3 he had a sleep

> study done and he had

> sleep apnea from obstruction and central. So, he

> got his T and A taken out soon

> after. Still he would sit up and then flop forward

> or to the side, he will

> toss all night long. He doesn't really get up or

> take a walk or anything like

> that but just sits and then flops all night long.

> We too have to go to sleep

> with him or he will not go to bed. That may be the

> reason he doesn't go walking

> off cause he sleeps with us? He could stay up

> forever if allowed and go non

> stop. You can see that he is tired but he will

> fight it off. It used to be a

> night mare getting him to bed and once he did then

> he would some times take

> hours to even fall to sleep, he would just be

> staring to no where, he will

> pull one strand of my hair at a time ( soothing to

> him, not me), or play with

> his fingers. Used to drive me nuts. Then full day

> kindergarten started last

> fall and well, it tired him out and he then started

> going to bed with ease and

> would even fall to sleep with in 10 to 20 min.

> instead of hours. He was tired

> during his day and would fall to sleep in the car

> on the way home from

> school.

>

> We took him to a Neurologist in the fall and got a

> second sleep study. This

> time, no central and no obstruction meaning no

> apnea, He is only getting 19%

> REM.so now being called insomnia. So, he then had an

> EEG. and in Dec. that

> came back abnormal. We have done lots and lots of

> blood work. Now referring Noah

> to a GI doctor from the last blood work. not sure

> why? But, anyway, with the

> abnormal EEG they are not saying seizures but say,

> it could be so it is up

> to us to medicate for this or not. We have not yet.

> We go back next month to

> talk with the doctor and I hope to find some

> answers. I do not care to give my

> son meds that he may not need. They also think

> possible pain may be waking

> him up in the night like restless leg and such?

> Since Noah cant tell me we

> have no idea if he is or not. They did some blood

> work and his ferretin was low

> but iron was good. I guess some times with low iron

> it can cause sleep

> problems. It is very frustrating to me and I just

> want Noah to get a good nights

> rest each night. I feel so bad for him. Noah does

> seem to have high pain

> tolerance and doesn't complain of pain for

> anything. At night when I lay with him

> to get him to sleep I try and see if I can feel him

> do anything strange or if

> he is seizing but I always seem to fall to sleep

> along with him.

>

> since we pulled him out of school in late Nov. to

> home school him. he has

> had about three nights like those old days, where he

> took hours to go to bed. I

> thought I would lose my mind but thankfully it only

> happened those few times.

> I would hate to go back to those days of him not

> falling to sleep. It was

> awful. A friend who's ds child the same age, falls

> to sleep so easy and early,

> just cant imagine what I go through and says, good

> thing I stay home, but

> heck, its hard on me too even if I do stay home.

>

> We have tried melatonin also, both kinds and didn't

> really work.I do not

> know if his level is low or not, they never told us

> that. I heard that Noni

> juice may help or something like that but have not

> tired it. If anyone knows of

> anything I would love some info to help Noah get

> some sleep. I would say that

> with Noah not getting all the sleep he needs he is

> still such a happy boy,

> full of energy, pretty much in a good mood all the

> time. We do not have

> behavior issues with him at all. When in school he

> did get tired towards the mid to

> end of the day. He would want to lay down on the

> floor or put his head down

> in class. I just kept telling them, he doesn't get

> sleep so they didn't get

> upset with him. His therapy sessions are after

> school hours and he would be

> tired for them but did good most of the time for

> them. Now with no school he is

> better rested for them. He does tire out easy and we

> have to take our

> stroller every where with us or we are carrying a 50

> pound kid. I sure hope to have

> an answer soon for Noah and to get him some sleep. I

> hope that you find

> answers for your son as well. keep me posted and let

> me know what you find out

> and if anything works to get REM for your son.

> Blessings, Beverly Mom to Noah

> (6 ds)

>

>

>

> **************Start the year off right. Easy ways

> to stay in shape.

>

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

>

________________________________________________________________________________\

____

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Bev, My daughter, na (8ds), has the same sleep issues. She also had her tonsils & adenoids removed. We are still searching for answers. Behnke <behnkesw@...> wrote: Bev, I was wondering if you have checked his heart? B--- bal93@... wrote:> My son Noah is 6 and has had sleep problems since he> was born. I have been > on the hunt for what seems like for ever to get to> the

bottom of it and get my > poor son a good night of rest. At 3 he had a sleep> study done and he had > sleep apnea from obstruction and central. So, he> got his T and A taken out soon > after. Still he would sit up and then flop forward> or to the side, he will > toss all night long. He doesn't really get up or> take a walk or anything like > that but just sits and then flops all night long.> We too have to go to sleep > with him or he will not go to bed. That may be the> reason he doesn't go walking > off cause he sleeps with us? He could stay up> forever if allowed and go non > stop. You can see that he is tired but he will> fight it off. It used to be a > night mare getting him to bed and once he did then> he would some times take > hours to even fall to sleep, he would just be> staring to no where, he will > pull one strand

of my hair at a time ( soothing to> him, not me), or play with > his fingers. Used to drive me nuts. Then full day> kindergarten started last > fall and well, it tired him out and he then started> going to bed with ease and > would even fall to sleep with in 10 to 20 min.> instead of hours. He was tired > during his day and would fall to sleep in the car> on the way home from > school. > > We took him to a Neurologist in the fall and got a> second sleep study. This > time, no central and no obstruction meaning no> apnea, He is only getting 19% > REM.so now being called insomnia. So, he then had an> EEG. and in Dec. that > came back abnormal. We have done lots and lots of> blood work. Now referring Noah > to a GI doctor from the last blood work. not sure> why? But, anyway, with the > abnormal EEG they are not saying

seizures but say,> it could be so it is up > to us to medicate for this or not. We have not yet.> We go back next month to > talk with the doctor and I hope to find some> answers. I do not care to give my > son meds that he may not need. They also think> possible pain may be waking > him up in the night like restless leg and such?> Since Noah cant tell me we > have no idea if he is or not. They did some blood> work and his ferretin was low > but iron was good. I guess some times with low iron> it can cause sleep > problems. It is very frustrating to me and I just> want Noah to get a good nights > rest each night. I feel so bad for him. Noah does> seem to have high pain > tolerance and doesn't complain of pain for> anything. At night when I lay with him > to get him to sleep I try and see if I can feel him> do anything strange or

if > he is seizing but I always seem to fall to sleep> along with him. > > since we pulled him out of school in late Nov. to> home school him. he has > had about three nights like those old days, where he> took hours to go to bed. I > thought I would lose my mind but thankfully it only> happened those few times. > I would hate to go back to those days of him not> falling to sleep. It was > awful. A friend who's ds child the same age, falls> to sleep so easy and early, > just cant imagine what I go through and says, good> thing I stay home, but > heck, its hard on me too even if I do stay home. > > We have tried melatonin also, both kinds and didn't> really work.I do not > know if his level is low or not, they never told us> that. I heard that Noni > juice may help or something like that but have not> tired it. If

anyone knows of > anything I would love some info to help Noah get> some sleep. I would say that > with Noah not getting all the sleep he needs he is > still such a happy boy, > full of energy, pretty much in a good mood all the> time. We do not have > behavior issues with him at all. When in school he> did get tired towards the mid to > end of the day. He would want to lay down on the> floor or put his head down > in class. I just kept telling them, he doesn't get> sleep so they didn't get > upset with him. His therapy sessions are after> school hours and he would be > tired for them but did good most of the time for> them. Now with no school he is > better rested for them. He does tire out easy and we> have to take our > stroller every where with us or we are carrying a 50> pound kid. I sure hope to have > an answer soon for

Noah and to get him some sleep. I> hope that you find > answers for your son as well. keep me posted and let> me know what you find out > and if anything works to get REM for your son.> Blessings, Beverly Mom to Noah > (6 ds)> > > > **************Start the year off right. Easy ways> to stay in shape. >http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489> __________________________________________________________Never miss a thing. Make your home page. http://www./r/hs

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Feel free to share my email with your friend. Sounds

like the same issues Freddie had and on some levels

continues to have 4 years after T & A surgery.

Just a thought.......Depending on the technique (type

of surgery) the adenoids can grow back. I would

suggest talking to your otolaryngology’s about

continued sleep issues.

nna

Mommy to Freddie 6yrs

Full Inclusion Kindy (Again-But it's a good thing!!!)

--- <xpagal1991@...> wrote:

> I am the president of our local DS group in

> Northeast OH/Western PA.

> One of our members e-mailed me with a question and I

> told her I would

> post here to possibly get her some help. As she is

> not a group

> member, I will pass any info. on to her. Please

> indicate in your

> reply if she can e-mail you directly and include

> that address.

> Thanks fo much.

>

> Here is her e-mail:

>

> I am looking for anyone who is experiencing sleep

> problems with their

> child. These are the things that I am looking for:

>

> Difficulties with bedtime routine (reluctance to go

> to bed,

> inability to settle without a parent being present,

> insisting on

> sleeping with someone), early waking and night

> walking. Then I am

> looking for if their child then shows signs of

> irritability,

> aggression and hyperactivity during the day.

> Because of lack of

> sleep and behavioral problems the child then has

> trouble

> concentrating to learn.

>

> My son is 7 years old. He has had sleep

> problems for

> years. It seems to be getting worse. His sleep is

> very restless and

> he wakes frequently. He is up roaming from bed to

> bed several times

> throughout the night. Now I believe he is even

> sleep walking. He

> never tires at night. I was told that it might be

> due to his

> melatonin level being low. He does get a dose at

> bedtime to help him

> fall asleep. However, he never remains asleep. We

> have done sleep

> studies and have gotten no answers or help. All they

> told me was that

> he did not have REM sleep. I have begun my own

> research to see what

> I can do to help . His behaviors are

> largely effected by

> his lack of sleep during the day and he is having

> trouble in school.

> If anyone has gone through this and has some

> suggestions I would

> greatly appreciate the help. I just don't know what

> else to do or

> who to turn to for answers.

>

>

________________________________________________________________________________\

____

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  • 2 years later...
Guest guest

Dear JoeHave you gone to a sleep lab to determine if you have sleep apnea? Are you drinking caffeine after 3 pm or exercising late? Are you taking any new supplements or medications that may be interfering with your sleep?I take 10 mg of generic Ambien right before dinner (food slows down its absorption a lot). But I hate how Ambien has erased my memory of the past. Regards, Vergelpowerusa dot orgFrom: Joe Cornish <joecornish@...> Sent: Mon, March 15, 2010 11:29:48 AMSubject: Sleep Problems

I've been taking 1 mg clonazepam and 30 mg temazepam for years to help me sleep. I mayhave a tolerance to them now, because they are not working well lately.I would appreciate it if members would share what works well for them for sleeping.Thanks,Joe

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Guest guest

joe---i think you might find medical cannabis helpful. you would want to stick with an indica (as opposed to a sativa), which will help you sleep as well as give your appetite a punch.also, if you're waking up in the middle of the night, there's a 4-hour sleeping pill called sonata you might find helpful. check with your doc. but that's a short-term strategy.you might want to migrate to another sleeping pill. or two medicines, so you don't become completely dependent & acclamated. i actually prefer ambien as a backup, and ativan as a backup anti-anxiety agent.also, warm milk (i forget which amino acid it is in warm milk that does it --- oh yeah, triptophane (sp?), same thing that makes you nap after a big turkey dinner on thanksgiving)and also, if you start

practicing qigong/tai chi now, you can train yourself to fall asleep by focusing on your breathing (dreaming seems to be the important part, and your body does its repairs while you're in REM). sleeplessness is also treatable with acupuncture. namasté ---rkaidswriteorg@...http://aids-write.orghttp://havvacc.wordpress,comhttp://haest.wordpress.comFrom: Joe Cornish <joecornish@...> Sent: Mon, March 15, 2010 11:29:48 AMSubject: Sleep Problems

I've been taking 1 mg clonazepam and 30 mg temazepam for years to help me sleep. I mayhave a tolerance to them now, because they are not working well lately.I would appreciate it if members would share what works well for them for sleeping.Thanks,Joe

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Guest guest

joe---i think you might find medical cannabis helpful. you would want to stick with an indica (as opposed to a sativa), which will help you sleep as well as give your appetite a punch.also, if you're waking up in the middle of the night, there's a 4-hour sleeping pill called sonata you might find helpful. check with your doc. but that's a short-term strategy.you might want to migrate to another sleeping pill. or two medicines, so you don't become completely dependent & acclamated. i actually prefer ambien as a backup, and ativan as a backup anti-anxiety agent.also, warm milk (i forget which amino acid it is in warm milk that does it --- oh yeah, triptophane (sp?), same thing that makes you nap after a big turkey dinner on thanksgiving)and also, if you start

practicing qigong/tai chi now, you can train yourself to fall asleep by focusing on your breathing (dreaming seems to be the important part, and your body does its repairs while you're in REM). sleeplessness is also treatable with acupuncture. namasté ---rkaidswriteorg@...http://aids-write.orghttp://havvacc.wordpress,comhttp://haest.wordpress.comFrom: Joe Cornish <joecornish@...> Sent: Mon, March 15, 2010 11:29:48 AMSubject: Sleep Problems

I've been taking 1 mg clonazepam and 30 mg temazepam for years to help me sleep. I mayhave a tolerance to them now, because they are not working well lately.I would appreciate it if members would share what works well for them for sleeping.Thanks,Joe

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