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Old 11-08-2008, 09:49 PM   #1
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My 15yo diagnosed w/DSPS - I am skeptical - help?


I guess I am seeking advice/support from anyone seasoned in dealing with issues such as this...
My 15 yo son. I took him to a Neurologist/Sleep specialist that diagnosed him as having DSPS (Delayed Sleep Phase Syndrome) - but I am going this Wednesday to another specialist because I don't want to start any sort of treatment w/o a second opinion. This is a really big deal to me and I want to do what is best. I have looked up DSPS information on the web and a lot of it does not quite match up with his sleep problems. I am going to try to explain but I am emotionally overwhelmed right now so I can't organize info very well.

He has an extremely erratic sleep pattern. When I try to force him awake even after 12-14 hours of sleep he sometimes becomes very angry. If I try to talk to him in this state, it is like talking to a caveman. I get grunts and yes or no as a reply if any reply at all. Other times he can't sleep more than 3-4 hours before getting up on his own. He falls asleep in school... often I can't send him to school at all. But then he has weeks at school where he does great and I have teachers telling me he is wonderful. He falls off his bed often in his sleep. He feel asleep so hard that he was unresponsive at school and they called an ambulance to take him to the ER because they thought he had a drug overdose. Well they drug tested him and he was clean. He just snapped out of it eventually and felt fine. The problem has been increasingly worse over 2 years. So for 2 years I have been working with his pediatrician and a psychiatrist. They have suggested every obvious thing. No caffeine, no video games, no heavy meals, melatonin, benedryl, prescription sleep meds, prescription anxiety meds, stimulant medications to keep him up during the day.... NOTHING WORKS! Half those things seemed to make it worse. He also has very bad mood swings... not minute to minute but like he will be happy for a week then angry and unwilling to talk for 4 days. I tracked his sleeping pattern for 28 days in detail on paper recently. He did not go to bed within the same hour more than 3 times in 28 days! He sleeps anywhere from 3 to 20 hours at a time.... and like I said - there is NO waking the boy up if his body doesn't want to wake up. I have dragged him to school half asleep only to have the school call me and say to come pick him up or they are calling the ambulance again. He has gotten so angry at school about being told to stay awake that I was called and told that if I wasn't there in 15 minutes they were calling the police. He has never hurt anyone but he will kick over chairs and call names. Then he gets truancys that I could get fined for or even go to jail I think. Or he could get removed from my care and placed in a children's home because I don't send his butt to school.
Oh - and he had a sleep test done and his sleep onset was 12 minutes and he slept 7 hours with everything looking normal except he experienced no REM sleep at all... not even for 1 second. The doctor said no REM sleep is not a big deal... but I don't know if I am ok with that opinion. Especially w/ him getting so physical during sleep periodically where he hits the walls and falls off the bed. He has hurt himself a few time. I would imagine that stuff is happening during REM sleep - but it only happens to him 3 times a week or so - so maybe he only gets REM sleep 3 times a week? And maybe when he does he physically acts out his dreams? Dr. is acting like this is no big deal... but it is like the worst thing I have ever had to deal with in my opinion! Also the Neurologist suggested that his Anxiety and Aggression has no connection with the DSPS... that it should be treated as two separate issues and I need to see the psychiatrist regarding his behavioral issues... but I feel that it is not inconceivable that the behavioral issues are a symptom of a sleep issue... and that once we can resolve the sleep issue the behavioral issues will get better. And... he has been treated for psychiatric issues since he was 7 years old. It started out he had paranoid delusions and auditory hallucinations (to the point he had to be hospitalized). They gave him risperdal and effexor for that and it helped but he never got a good diagnosis and the meds all quit working once he hit puberty. So he hasn't had those in years. Recently he has only has Buspar for anxiety - which seemed to quit working within the last few months so I just let him quit taking it. Right now I have him completely off all his psyche meds - and I do not see an improvement or worsening of any of his issues. I still been giving him a low dose of stimulant med from time to time if he needs to be awake - but it usually does not wake him up so I don't know why I keep trying. I guess because he told me it helps sometimes. Doc gave him something called Rozerem last week. I gave it to him @ bed-time... he slept 4 hours... woke up tired and cranky and unable to go back to bed for 10 hours and then slept for oh... about 20 (of poor quality sleep he says) hours straight except to eat a snack and pee once in the middle of that. So I don't know about that Rozerem stuff...

I could go on but I understand that probably nobody even wanted that much info. Any advice/suggestions/etc is appreciated.

 
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Old 11-09-2008, 06:19 AM   #2
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

Welcome to the boards, Katy!!

First off, I think it is wise to test/challenge everything you are told even if the best specialists in the world are telling you these things!

Second, I think it's wise to trust your gut instincts and something is telling you that this may not be the correct diagnosis.

Thirdly, although I am not a sleep expert, I have been diagnosed and treated (sucessfully) for sleep disorders, and for a number of reasons I have followed this board regularly...that doesn't not make me an expert or even an amatuer, but I have read about lots of stuff about sleep in the past few years...well actually longer than that because I became obsessed with the subject when I was in school because what I was told about sleep didn't apply to me!! and since that time the "experts" have changed their tune about what they were telling us years ago...but I run on...back to your son's problem.

Your son's problems are not similar to those shared on this board...they are different...the intensity is different...the age of onset is different...and the response to meds is different. Please be aware that I am generalizing here, as there is some connection, but you too, are questioning the diagnosis because something doesn't quite feel "right".

I'm going to stick my neck out really, really far here but these are my thoughts....

Your son's problems started much earlier, at least when he was seven years old. And they've gotten worse. Many, many conditions (and meds for that matter) can cause sleep problems and can cause neurological and psychiatric problems but when no obvious explanation can be found, I think one should at least consider Lyme Disease which is a bacterial infection that can eat away the nerves, muscles, bones, and other tissue in the body causing a myriad of symptoms. Lyme is DIFFICULT to diagnose!! There are over 300 strains of the bacteria and tests often have false positives and false negatives...so the most accurate diagnosis is made by a Lyme Literate Medical Doctor.

Lyme is notorius for causing neurological symtoms...but other symptoms include anxiety , panic attacks, aggression, hearing changes (auditory hallucinations?), vision changes, speech problems, memory problems, vibrations/shakes/tremors/purring, low body temps, stomach problems, muscle and joint problems, yeast infections, etc, etc, etc.

Steroids can make symptoms worse!

I would certainly get one or two "second" opinions on the sleep diagnosis, but if it were me, I would also schedule an appointment with a Lyme Literate Medical Doctor in your area. And no REM sleep IS A BIG DEAL!!!!

Good luck! Your son is very fortunate to have such a giving mother.

Bethsheba

PS You might want to do some more reading on the Lyme boards.

Last edited by bethsheba; 11-09-2008 at 07:05 AM.

 
Old 11-09-2008, 07:02 AM   #3
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

Katy,

Some people (not all), with Lyme find that carbs, gluten, and sugars aggravate their symptoms. Have you noticed any correlation between these "foods" and your son's condition?

Has your son ever been on antibiotics? If so, for how long? If he was on antibiotics, did his symptoms get worse, then better?

Bethsheba

Last edited by bethsheba; 11-09-2008 at 07:09 AM.

 
Old 11-10-2008, 03:57 AM   #4
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

I have a circadian rhythm disorder called Non-24 sleep/wake Syndrome. It basically means I fall asleep and wake up a half hour to an hour later every day because my wacky internal clock is set to a 25-26 hour day.

Teens naturally have a different circadian rhythm than adults. During puberty the biological clock is reset, telling the brain to fall asleep later at night and wake up later in the morning. They also need more sleep, 8-9 hours. If this reset in the sleep–wake cycle is exaggerated for some reason, so much so that it affects a their daily functioning, then they call it DSPS.


Sleeping for twenty hours straight (Hypersomnia is anything over ten hours) with an inability to awaken and/or aggression doesn't sound like DSPS to me. Sounds more like narcolepsy. Especially with the REM problems.

Definitely go for that second, maybe a third, opinion. And like Beth said, trust your gut - you know your child better than those lab coats do.

 
Old 11-10-2008, 07:35 PM   #5
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

Thank you. I have looked into the Lyme Disease thing. My son was an avid camper in his younger years and has spent much time in nature so it is possible. Of course now, he can't go camping so much.

His sleep pattern itself looks more like the non-24 - He bumps it up about 50 minutes per day and then occasionally has the power-sleep thing... I would say every 25 days or so he sleeps a nice 25 hour stretch.

I will bring up several possibilities to the new Doctor, including the Lyme. I printed out a bunch of literature on it. I am sure he will love that.

Thx
Katy

 
Old 11-11-2008, 04:05 AM   #6
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

Katy,

It sounds like Lyme may be a possibility then...do check out those Lyme boards....we recently had someone who's had a myriad of symptoms test negative for Lyme but positive for another tick infection...babeosis (ironically, I "met" that poster on this board due to her sleep problems). The reason that the doctors were able to diagnose babeosis was because they consulted Igenex Lab in Palo Alto CA and Igenex encouraged to test for coinfections in addition to Lyme based on the areas of the country/world this person traveled in. From what I've heard Igenex has the most reliable tests for tick related diseases...but none are foolproof!

I daily peruse the web for info on Lyme....there is alot of contradictory stuff out there. You may want to balance it with the experiences of people on the Lyme boards.

Good luck!!

Last edited by bethsheba; 11-11-2008 at 04:08 AM.

 
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Old 11-12-2008, 09:10 AM   #7
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

HI Katy,

Bethsheba steered me your way. I don't have many of the problems you have mentioned with your son but I do have a lot of "unexplained" neurological symptoms which may or may not be caused by lyme, I intend to be tested.

In relation to sleep, I have a hard time falling asleep, can take up to 4 hours even with help from meds. I have also startd "vibrating"" when falling asleep, that has since stopped since taking prozac(not sure if it's coincidence) and have had one hallucination during this time. Have started seeing a pysiciatrist now to both help me deal with my many on going medical problems and to see if any are pysciatric in nature. Some terms that he brought up for me to research are; reticular activating system, narcolepsy, cataplexy, hypnagogic and hypoapompic hallucinations (or states of mind). I am not sure if any of those would apply to your son's problem.

As I understand REM sleep is very important! I certantly do not know very much about the subject but I would think that in itself would contribute to the behavioral issues. I have heard of people going for an extended stay sleep study. It sounds like his was fairly "normal", like they caught him on a good day. Would it be possible for him to stay for more than one night?

It certanly sounds like you and your son have been through a lot, I wish you the very best and do make sure you follow your gut feelings.

hpatrice

 
Old 11-14-2008, 11:09 PM   #8
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

Thanks for the responses.

I took my boy to another Neurologist on Wed. and he said that while he believed he was having some sort of circadian rhythm disorder, that he wouldn't label it. He suggested the light therapy so I bought a $200 artificial sun for my kid. He seemed a bit better than the first doctor. The very next day my son went to school and was fine until lunch when he told his teacher he felt "funny" and then 30 minutes later he was on the ground passed out in the cafeteria, on the floor. School had to call the EMT again. He was out cold, unresponsive to anything, for over 30 minutes. I got to him ASAP while ambulance was still @ school so I could get him before they took him to the ER again. Last time the ER just charged me $200, gave me some papers saying my son had dementia, and listed some Alzheimer's disease support numbers and told me to follow up with my PCP. Yeah so that was a joke. I got him home and it was like dealing with someone coming out of surgical anesthesia for 2 hours. He kept falling and stumbling. So - I called the new Neurologist and said this happened again so NOW he thinks he is having seizures of some sort so I need to take him for an EEG Monday morning. The school told me they don't want him back there w/o a note from a doctor saying what is wrong with him and what they need to do if it happens again. OK well I been dragging him around to multiple doctors and they all act like "oh this is nothing" "all teens have mood swings" "all teens can't keep a good sleep pattern" "You have to be more strict with bed-time" - sheeesh. And now the school is refusing him... how normal is that? Hopefully the EEG testing shows something that prompts them to do some testing that will give me some answers. Now my son thinks he has a brain tumor! I told him seizures could be anything - but he is stick with brain tumor. Crazy kid.

 
Old 11-16-2008, 07:58 PM   #9
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

kh, I'm sorry I did not read your plea sooner. I just recently became
actively involved in the 'sleep disorders' board because I am dealing
with a sleep issue now. But I have long been interested in REM sleep
largely because it has been such a large part of my long life since I
was a child. So I was appalled and saddened and angered to read of
such a failure on the part of your medical help to read the handwriting
on the wall as regards your son's very serious problem.

You wrote that your son's sleep study showed that he was not getting
any REM sleep and that the sleep 'doctor' said he does not need it.
I hope you misunderstood him rather than that he could be so ill
informed. REM sleep has been repeatedly shown by many experiments
by many researchers to be essential to health and lack of it or other
dysfunction of it leads to very serious consequences, and in depriving
experimental animals of it can lead to their death. The pioneer sleep
researcher William Dement, PhD. describes an experiment he himself
conducted many years ago as follows: Since the onset of REM sleep
takes some time after falling asleep to begin (usually 60 or more
minutes and this period is called 'latency') he had his subjects awakened
30 minutes after they fell asleep and did this thru day and night so that
they totaled plenty of sleep time but not enough to reach REM sleep
at any time because the latency was interrupted. Without exception
after a while they all began to enter REM in less than thirty minutes,
thus making it clear that the timing to REM was shortened by the brain's
need to have REM sleep.
It has been observed that loss of REM sleep leads to several behavioural
and physiological abnormalities both in animals and humans. There is a
serious condition called RBD (REM Behavioural Disorder) which occurs
in males much more often than females (90% in males). Normally in
REM sleep, paralysis of most muscles other than eyelid and lung muscles
and heart takes place. But in RBD, the paralysis is more or less absent
and the sleeper can physically act out his dream. In RBD violent movement
often takes place and can endanger a sleeping partner, with limbs
thrashing about as if in a seizure. It is regarded as a sleep parasomnia
that can lead into neuro-degenerative diseases like Parkinsons. Usually
seen mostly in the elderly it occurs less often in childhood but does to
some extent. Classic symptom: violent movements during sleep. In
some cases, prominent limb and body movement are seen prior to the
full expression of RBD. Often ideopathic (cause unknown) and is often
seen in Narcolepsy patients. Does any of this sound possible??

From what you wrote, my guess is that he involuntarily slips into a
RBD pattern even during the day and that he might not register any
REM during the night because his system does not obey the usual
cyclic day/night normalcy. I would suggest that you find a competent
sleep specialist with neurological credentials rather than just pulmonary
as is often the case. My sleep doc has credentials in neuro-physiology
and neurology for which I am very thankful. I also suggest that you
read the book "The Promise of Sleep" by William Dement. Very down to
earth understandable by one of the top minds in the sleep field and he
briefly describes RBD, and you will learn more than you will ever get
from limited time appointments where they provide minimal information.
Your son's condition is not something to take lightly as I can tell you
already realize and you may need to deepen your own knowledge in
order to cope with today's medical practitioners.

 
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Old 04-09-2010, 01:22 PM   #10
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

We had a foster child fromage 14-18 with almost the exact things you describe. He went through so many tests and dr's.... drugs galore.They finally diagnosed him as being bipolar and medicated accordingly. Since then he has been doing great! He's 20 now and living on his own but we see him often..... just a thought

 
Old 10-25-2011, 03:55 AM   #11
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Re: My 15yo diagnosed w/DSPS - I am skeptical - help?

I hope you have found help for your son. My sleep symptoms began in high school. I could not stay awake in class and I kept myself up with (dating myself) No-Doz. I was on the cusp of addiction. I switched to non-stop gum chewing which caused TMJ problems for me later in life. I continued to fall asleep in classes, though it wasn't always a total sleep. Teachers and classmates put up with it for some reason. I became very participative as activity kept me from falling asleep in college and at work. Unfortunately, the symptoms kept getting worse. I would fall asleep while on the phone. As a teacher, my students would ask me if I was falling asleep while talking to them! I could do nothing about it.

I was always fighting sleep.

In my forties I began to fall asleep at the dinner table. My head would literally drop and my family could not wake me up at all. I could not be moved. I went to a carefully researched sleep doctor. The diagnosis was narcolepsy without cataplexy (loss of muscle control).

When I fall asleep suddenly, though narcoleptics don't always know it is happening, I can sometimes feel it coming on. I only have a few seconds before I'm asleep. And I'm a "borderline" narcoleptic! I take Provigil (Nuvigil does not work for me) to help me stay awake in the daytime.

My sleep is very disruptive. If I do not fall asleep right when I am tired, I do not sleep at all. Literally, I will be up the entire night and nap a few hours the next day. I also have ADD and Fibromyalgia.

Your son could have a form of narcolepsy or other sleep disorder. He could also have a tic borne disease. Have you checked out something called PANDAS? My friend's son has it and it sounds a bit similar to what you are describing. It may be worth looking into if you have not received a definitive diagnosis. She had a lot of trouble finding a doctor that believed in PANDAS. I know there is a lot of information on the Internet.

I hope life has become more peaceful for you. Your posts show you are a strong and loving woman.
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