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Topic : Struggling with Sleep Issues?

Number of Replies: 184
New Messages This Week: 0
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Created on : Tuesday, August 08, 2006, 01:43:09 pm
Author : DrPhilBoard1
Millions of people suffer from sleep issues such as insomnia, sleep apnea, narcolepsy, sleep walking, sleep terrors, or restless leg syndrome. Share your stories and offer advice and support to others facing similar conditions.

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December 12, 2006, 11:14 am CST

persistence

Quote From: darcylove

the IEP we have for our 14 year old son really gives him nothing. We are hoping to get things like preprinted notes and having tests read to him. We also hope we can change his required number of books read each quarter to reading for a set amount of time each day. Quiet activities like reading is difficult for him. And having a test read to him allows him to interact with someone...thus keeping him alert. Also if getting notes allows him to put more focus on what is being said then on writing down notes. Focus is where he struggles the most with currently because often it takes a great deal of focus to stay alert and awake.

 

His provigil has made a signifcant change for him. Without it I am sure he would not be as alert as he is and probably suffering even more at school. He is a very good athlete and we tend to find the more activity he has...the more alert he is.

 

I am not sure how common it is for children to have narcolepsy but we did find it very difficult to find a doctor that works with children with sleep disorders. We did luckily find one.

 

I believe he has suffered with this for most of his life as he has never been a very good sleeper during the night and has always had the ability to fall asleep at the drop of a hat.

 

I will talk to him about about drugs and alcohol and how it effects narcoplepsy. This is new knowledge for me. We are concerned that the provigil medications would not interact with other drugs and alcohol too well. And so those discussions have already taken place. We also talk to him about staying free from those things because he wants to participate in sports in high school (and hopefully beyond).

Keep after the school to give your son the accomodations he needs.  A letter from his doctor might help, as well as print-outs from the internet on Narcolepsy, as well as about children with Narcolepsy.

 

I suffered from it most of my life...falling asleep in class, falling asleep reading, etc.

 

Our kids' IEP's gave them almost nothing until this year.  I went to school for a week with my 13 year old, to see where the problem areas were.  My presence let the school staff know that I am serious about helping my son, and it went a long way toward getting the accomodations he needs.  He has ADHD and Restless Leg Syndrome (a sleep disorder that causes bad sleep).

 

We have the following accomodations:

 

1.  Reduced amount of work, when needed.

2.  Our son must call me when an assignment isn't turned in when due.

3.  He is allowed extra time to turn in assignments...a few days without affecting his grade

4.  Email communication between us and the teachers.

5.  Sitting in the front of the classroom.

6. The teachers redirect him when he is off task.

7.  A set of text books at home (there aren't enough books to go around, so we only have the Science book.

8.  Copies of notes from a student in his class, who takes good notes.

9.  Filling out his day planner, and having it signed by the teachers, to be sure all is written down.

10.  Standardized testing done in the counselor's office, with supervision, but not help.

11.  Use of a tape recorder for written assignments, and transcribing at home.

 

It looks as though you are on the right track with your requests.  It is the law that the school gives you the accomodations that your child needs, no matter how inconvenient it is for the teachers.  Our school has given the excuse that there are 30 kids in the class.  My response was that, while yes, there are 30 kids, but my son is one of them.  There aren't that many on IEP's. 

 

Perhaps a letter from an attorney would be helpful to reiterate the fact that your son must have these accomodations, by law.  Be careful not to alienate the school teachers and staff.  Ask for their help, rather than critisizing their lack of help.  Show up at school frequently, to observe, and to check in with the teachers. 

 

This year, the accomodations are working for our 13 year old.  His grades have gone from D's and F's to solid B's...he's capable of A's, if he could get all of his work in.

 

Sleep disorders in all people, including children, are more common than you would think.  About one-third to one-half of ADD and ADHD cases are actually caused by sleep disorders, and the ADD meds can just make the sleep disorders worse.  Sleep disorders cause inattention, and hyperactivity, as a tired child needs to move around more to stay awake.  There are over 200 different sleep disorders.

 

Parents of children who struggle in school should consider having a sleep study done, in addition to the testing for learning disabilities, plus vision testing by an eye doctor who specializes in vision therapy.  Sleep problems and vision problems that are not caught by the standard eye testing are common problems that can cause difficulty in school.

 

Schools need to be more accomodating for kids having difficulties, especially for those who have been diagnosed with real medical problems that interfere with the ability to get their work done.

 

Good for you, for talking to your son about drugs...drug and alcohol use is a train wreck waiting to happen.

 

Good Luck...Becky

 
December 12, 2006, 12:15 pm CST

your child's iep

Quote From: mustbecrazy

Keep after the school to give your son the accomodations he needs.  A letter from his doctor might help, as well as print-outs from the internet on Narcolepsy, as well as about children with Narcolepsy.

 

I suffered from it most of my life...falling asleep in class, falling asleep reading, etc.

 

Our kids' IEP's gave them almost nothing until this year.  I went to school for a week with my 13 year old, to see where the problem areas were.  My presence let the school staff know that I am serious about helping my son, and it went a long way toward getting the accomodations he needs.  He has ADHD and Restless Leg Syndrome (a sleep disorder that causes bad sleep).

 

We have the following accomodations:

 

1.  Reduced amount of work, when needed.

2.  Our son must call me when an assignment isn't turned in when due.

3.  He is allowed extra time to turn in assignments...a few days without affecting his grade

4.  Email communication between us and the teachers.

5.  Sitting in the front of the classroom.

6. The teachers redirect him when he is off task.

7.  A set of text books at home (there aren't enough books to go around, so we only have the Science book.

8.  Copies of notes from a student in his class, who takes good notes.

9.  Filling out his day planner, and having it signed by the teachers, to be sure all is written down.

10.  Standardized testing done in the counselor's office, with supervision, but not help.

11.  Use of a tape recorder for written assignments, and transcribing at home.

 

It looks as though you are on the right track with your requests.  It is the law that the school gives you the accomodations that your child needs, no matter how inconvenient it is for the teachers.  Our school has given the excuse that there are 30 kids in the class.  My response was that, while yes, there are 30 kids, but my son is one of them.  There aren't that many on IEP's. 

 

Perhaps a letter from an attorney would be helpful to reiterate the fact that your son must have these accomodations, by law.  Be careful not to alienate the school teachers and staff.  Ask for their help, rather than critisizing their lack of help.  Show up at school frequently, to observe, and to check in with the teachers. 

 

This year, the accomodations are working for our 13 year old.  His grades have gone from D's and F's to solid B's...he's capable of A's, if he could get all of his work in.

 

Sleep disorders in all people, including children, are more common than you would think.  About one-third to one-half of ADD and ADHD cases are actually caused by sleep disorders, and the ADD meds can just make the sleep disorders worse.  Sleep disorders cause inattention, and hyperactivity, as a tired child needs to move around more to stay awake.  There are over 200 different sleep disorders.

 

Parents of children who struggle in school should consider having a sleep study done, in addition to the testing for learning disabilities, plus vision testing by an eye doctor who specializes in vision therapy.  Sleep problems and vision problems that are not caught by the standard eye testing are common problems that can cause difficulty in school.

 

Schools need to be more accomodating for kids having difficulties, especially for those who have been diagnosed with real medical problems that interfere with the ability to get their work done.

 

Good for you, for talking to your son about drugs...drug and alcohol use is a train wreck waiting to happen.

 

Good Luck...Becky

sounds just like what we are trying to get.

 

I have a background in eduation and dispite years of college and spending time in a classroom....little did I know about how hard it would be to get my son help. It is the unwritten rule that IEP's sound good but very seldom are parents able to get the help they need for their children. And I found this out as a teacher. Says little for our education system.

 

At first it was believed that our son was ADD and after starting medicaitons and finding they made him worse.....we started doing some testing on sleep disorders. We found in a nap study that he reaches rem quite quickly and fell asleep for all naps in a very short time. From there they did a genetic code blood test and found he carried not one but two genetic links for narcolepsy.

 

From there we went on a search for a doctor that treated children. That was a little over a year ago. When they first started him on Provigil it had  yet been approved for children so we started him on it as a 'case study.' Shortly there after it was approved for children. He is currently taking 500 mg a day. And although we have made great advances in his school work....years of being tired has caused him to not have very good 'executive skills' or 'organizational skills.'

 

This board may be of some help...so i am glad i found it.

 
December 12, 2006, 1:28 pm CST

sleep issues

I have sleep issues too.  Mine are related to having Multiple Personality Disorder.  I have personalities who keep me up at night.  I also have Suscidal Alters who are active some times at night.  And on top of that my mind races at night.  Some times I can control this all by asking all the personalities to go to sleep.  Some times the child alters get up at night and wonder around the house with their stuffed animal.  But since I have gotten some healing for this things are some better.  I must admit,  well.........  like today I am tired and I thought I got a good night sleep.  So I guess  I didn't.  Sleep has not always been easy for me.  I can get some of my best rest in the afternoon.  Night time is hard as that's when I was abused as a kid.  I would love to have a good nights rest.  But I do know with complete healing that will come.
 
December 12, 2006, 4:20 pm CST

sleeping or lack there of

     I am a 36 year old mother of 2 who works full time.  I have a lot a trouble sleeping.  I have had the tests and do have a bad thyroid, chronic fatigue syndrome as well as sleep apnea.  I am taking medication for the thyroid and sleep with a CPAP every night but still feel as exhausted as when I started.  I haven't really been able to take anything to sleep since I find I have a really hard time getting out of bed in the morning for work.  I'm not sure what else I can do to get more rest or at least feel like I don't have to missing my waterbed every day at nap time.

 

Any Suggestions?

 

Lari

 
December 12, 2006, 6:12 pm CST

BE CAREFUL WITH AMBIEN

 I was on Ambien for years and finally decided that I wanted off.  It was terrible with the withdrawals I had.  I guess that happens with a lot of sleep medicines but I could hardly function even during the day.  The government and my doctor both say it is not addictive but IT IS.  Please watch taking these medicines.  I have been off Ambien for about 3 months but to be honest I still miss taking it. 
 
December 14, 2006, 12:37 pm CST

I will

Quote From: thomaslp

if you get an answer to this problem please let me know i tried ambien made me eat in my sleep my dogs would wake me up trying to get what ever i had out of my hands so they could eat it tried lunesta left a metal taste in my mouth could not get enough to drink and still didn't sleep have taken almost every kind of  pain med the only thing that will let me sleep for about 4 hrs is phenergan suppository as far as pain relief i don't think there is such a thing i now take avinza have been on 60mg he wants to try the 90 mg nest if that doesn't work he wants to try the external morphine pump but before we do that he wants me to go to the city have a ct scan and a tissue biopsy i have already had every x-ray there is and 3 mri i am claustrophobic so the have to give me a sedative just to calm me down and of course you have to lie still and i can't do that so they have to stop and start it usually takes 3 hrs  don't know if he afraid he will scare me if he tells me what he is looking for because he not saying to much just wait and see i fractured the top bone on my foot 3 yrs ago and it will not heal i have degenerative bone disease and 2 bulging disk my right hip just goes and down i go just like i wanted to sit i worked 14hrs today just to keep from sitting around doing nothing cause i can't stand to sit around i own my own business and can't afford to sit around people still want to eat oh will lokk how i just went on and wrote a book if you find a way to get sleep please let me know laurie
I will let you know it seems like there is no hope. I am 22 and this shouldnt be happening to me at this age. I the lunesta... That is the most horrible taste i have ever had. I started wrapping the pill in a piece of cheese and made it a ball and swallowed it whole and that really really helped.... I will keep you posted on opinions and hope you will do the same. Thanks for the reply. Brooke
 
December 17, 2006, 11:24 am CST

Struggling with Sleep Issues?

Quote From: jaimie1974

No, you arent lazy!

Have you talked to a Dr. about this issue?

It sounds like a sleep issue, but also it is a life and family issue. You are affecting your childrens lives (negatively) because of this, and financially affecting your family when you get fired from jobs.

You said that your sleep does improve some when you have had plenty of sleep; how many hours of sleep would you call plenty?

I have struggled with sleep issues my whole life. I take klonopin at bedtime every night, and that helps me to get to sleep; I still had problems staying asleep, though. The best thing I ever did for myself was this: hypnotherapy. I had thought about hypnotherapy for a long time before I finally did it. There are many important aspects to getting a good night of sleep. One that has really helped me is to have a consistent bed time. In the past, I couldnt sleep, so I would stay up watching television; and then, that became a habit that I was hanging onto. (not on purpose) Now, I go to bed at 10 p.m. every night and listen to my dvd that was made during my hypnotherapy session. I highly recommend hypnotherapy for anyone having trouble sleeping or problems with fears/anxiety in their lives. Since my hypnotherapy session, I wake feeling refreshed and looking forward to the day!! That is something I have never, ever felt before- but, it is such an excellent feeling, and I wish that everyone could have this feeling, too.

You are definitely not lazy!  I feel exactly the same way.  After struggling with EDS (excessive daytime sleepiness) for 20+ yrs, I was FINALLY diagnosed this past week with Narcolepsy.  It was such a relief to know that it wasn't me being lazy or that how I was feeling was "normal" for me.  I had soooo many drs tell me I needed to exercise more, get more sleep, too much stress in my life, it was because I'm a single mom, etc.  I knew it had to be more than that but was giving up hope of ever finding out what it was.  I don't suffer from the unexpected drop to sleep symptoms like many PWN do but I do have sleep paralysis and hallucinations sometimes when I wake up and struggle to wake up in the am and stay awake during the day.  I also immediately fall asleep when I go to bed at night.  I would HIGHLY suggest an MLST and find out for sure what is going on. 
 
December 20, 2006, 7:55 am CST

Struggling with Sleep Issues?

I have been having sleeping issues

since my friend died.

And then it's worse now that I'm taking

Zoloft for OCD and depression

 

-Theresa

 
December 25, 2006, 4:55 pm CST

I forgot to mention

Quote From: ttksb4

I have suffered with Narcolepsy for 2 years now.  I have been on Provigil that whole time.  Only recently have I noticed that it doesn't seem to be working anymore.  I am the only person in my family with this disorder too so that doesn't help.  No one understands it or seems to really care.  Everyone assumes that I'm just lazy... sometimes I even question that myself.  I am 31 years old... have a 12 year old son & 8 year old daughter... and I just have absolutely no energy.  I am currently on the verge of losing the job which I have had for almost almost 9 years.  Just can't seem to get enough sleep.  Some days are better than others.  I have noticed that if I am under a lot of stress it seems to trigger the sleep episods.  As I'm writing this right now I can barely keep my eyes open.  Just feel like my body is totally drained of all it's energy.  Arms and legs feel like they are getting heavier and heavier.  I hate this feeling!!  I hate being tired all the time!!!  I am just so tired ALL of it at this point.  Just want to be a normal person again. 

I take Provigil for Narcolepsy...see earlier reply.

 

I forgot to mention that my doctor has me take one day off from provigil per week...a day with no Provigil once a week.  This is to help retain the effectiveness of the drug, and even though I am totally useless one day a week...no driving, etc...I am more awake and alert the rest of the week.  Ask your doctor about this.

 

Becky

 
December 25, 2006, 4:59 pm CST

Get a sleep study

Quote From: mustbecrazy

IF YOU ARE HAVING ANY TYPE OF SLEEP PROBLEM, ASK YOUR DOCTOR SPECIFICALLY FOR A REFERRAL TO A SLEEP SPECIALIST...A SLEEP STUDY WILL REVEAL JUST WHAT TYPE OF SLEEP DISORDER YOU MAY HAVE.

 

IF YOUR DOCTOR TRIES TO PUT YOU OFF, OR TELLS YOU THAT "IT COULDN'T BE THAT", INSIST...DEMAND...GET WHAT YOU WANT...I'VE BEEN TO SO MANY DOCTORS WHO ARE JERKS WHO DON'T LISTEN...I REALLY LIKE MY CURRENT DOC...A WOMAN, BY THE WAY...MEN JUST DON'T WANT TO LISTEN TO WOMEN'S "WHINING".

Just repeating a previous message....a sleep study is the only way to diagnose if you have a sleep disorder...there are over 200 sleep disorders known...get a sleep study if you are having problems with daytime sleepiness and/or problems sleeping.

 

Becky

 
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