Hi erin:
Yeah, and I certainly wish I could come up with something that would actually help.  But what the hey, this is a discussion forum, we gotta talk about something, sooooo....

Control of breathing is governed by several factors, pCO2, pO2 and pH.  Using the -HCO3 of 18 and the pCO2 of 34, her pH is about 7.34.  That's probably her major respiratory drive.  And on sleep onset, it probably dips a little more.  That's getting kinda low, enough to generate shortness of breath.

So let's say that the hypopneas are not obstructive in nature, but really central, caused by the waxing and waning of the pH.  There might be a way to stabilize that short of renal dialysis or a 6-pack of bicarb.

Still got the BiPAP machine?  Since these are hypopneas, you can set the bottom number (EPAP) at anything you want (say, 5 cmH2O), that number is needed to overcome apneas, and since there aren't any, it's not an issue.  Then you can crank up the top number (IPAP) to not only overcome respiratory events (let's say 8 cmH2O), but it will also give the effect of a little hyperventilation, or more appropriately, avoid HYPOventilation.

That little burst of negligible BiPAP at the beginning of the study would not be enough to assess the efficacy of this.

You probably asked a million times about the side effects of Lamictal, which include headache and insomnia.  Not that that would be something you could do anything about anyway.
sleepydave

SleepyDave,

We don't have a BIPAP...just a CPAP (ResMed Elite S8) with EPR (max of 3cm below inhale pressure) so it is now set at 7.6 cm on inhale, 4.6cm exhale.  We have an appointment mid-next month (earliest appt available) to evaluate whether the pressure is oxygenating her enough and I'm going to ask about BIPAP then.

You know I've been wondering if it had something to do with her kidney function...that's part of the reason why I wondered about "paroxysmal hypnogenic dyskinesia" because one patient with head injury was treated with an enzyme inhibitor that works on an enzyme present in the renal tubules and red blood cells...a little too coincidental that increasing red blood cells is one of her main issues right now.  It also seems strange that sleep would be our biggest issue right now and not her kidneys.  But her Kidney Docs haven't made any connection and I've asked multiple times.


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Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube

Hi erin:
When ResMed made the EPR function, they fudged on the exhalation part, carrying out that reduced pressure all the way to the next inhalation.  That, essentially, makes it a BiPAP, so she's already on 8/5, or something darn close to it.  Was there any difference when you used the EPR mode, or did you just start out with it at 3 cmH2O?

The acidosis and hyperventilation are real numbers tho, and when you're using BiPAP to assist ventilation, you spread the range out a bit more, so it still might be worth a shot, especially if you run out of other ideas.

You gotta dig up 5-6 more hours of sleep somewhere, why not try to get that CPAP going during naptime?
sleepydave

OK, here's a hypnogenic paroxysmal dystonia1 (boy, I can already tell this is going to be one of our most visited posts)



You don't need to know a lot about EEG (the first 5 channels), just realize that the first few seconds are NREM sleep.  The HPD occurs, and then the EEG pattern resumes, which is again NREM sleep.  It also appears that wake is never reached here, maybe just a brief arousal, this patient was asleep the whole time.

Anyway, the point that we're trying to make here is that if you're talking about a parasomnia, you've got to have sleep in there- certainly before, and probably after and even during the event, whatever it is.  You can have have arousals and partial arousals, but if on EEG you have a state of wake, then the parasomnia idea is out the window.

Now I know you're there, I'm here, and we're not tracking EEG.  But if dd is crying, yelling for 2 or 3 hours in a state of wake, that's not an HPD.  If this event occurs only at sleep onset, every time, but never during any NREM period once sleep is initiated, it seems unlikely to be HPD, I can't find anything that says HPD can be exclusive to sleep onset.

In the above patient, they are employing a "seizure montage", where there are additional EEG channels employed to try to zero in on EEG events during sleep.  Normally, there's only a couple of EEG channels in PSG (C's and O's) so if something's happening in the front of the brain you're probably gonna miss it.

If you really want to chase down that possibility of sleep-related neurlogical events , that's how to do it.

If you want to make a case for one of the other forms of dystonia, that may be a different issue, there's a bunch of them:

Dystonia

Once you leave parasomnias, tho, then you're out of my little world.

But we always keep coming back to the insufficient sleep issue.  No matter what she has, she should still be able to take sleep to the tune of 13 hours a day.  And if not, that is a problem that perpetuates itself.
sleepydave

1.  "Hypnogenic Paroxysmal Dystonia: Epileptic Seizure or a New Syndrome?", Lugaresi and Cirignotta, Sleep, Vol. 4, No. 2, 1981

Thanks SleepyDave,

It helps to see there is no wake time...that it's more like a night terror where you think the child is awake but they are really not.  

I don't think she's awake during the whole 2 hour period that includes the yelling/jerking...I think she's in and out of sleep.  She has periods of quiet within that time period when she's lying peacefully with her eyes closed and very still then the jerking/crying suddently starts up again.  Then she'll have another short restful period before the jerking/crying picks up again.  It just takes 2-3 hours for the jerking/crying to finally stop interrupting her sleep.  This is reflected in her sleep studies...from memory in the first study she started falling asleep around 11ish, started jerking within 10 minutes of resting peacefully and was finally quiet for the night at about 1:50.  I remember thinking it was almost three hours to the nose after she started crying when she finally was quiet for the night so they got a good picture of our struggle.  In the second she started falling asleep around 10ish and was quiet for the night by 11:30pm (this of course does not include the moments after that when I needed to adjust the mask because of leaks).  She fussed the minute the mask was on her face though before she went to sleep so I can't tell you how long after she fell asleep did the jerking/crying start but I remember thinking it was the earliest she had been quiet for the night in a long time and seemed faster than usual (around 1.5 hours) so I thought if the CPAP just does that it's worth it.

What puzzles me too is when she wakes at 5 am because she's yanked her mask off her face and it's blowing air at her she doesn't start the crying and jerking again when she falls back to sleep.  She drifts off easily...any idea why that is?  Is it because she's not fully awake then and maybe in the middle of some cycle (because she's only been asleep for 3 hours) so she doesn't start having problems again?

Thanks again!


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Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube

Hi erin:

Quote:

What puzzles me too is when she wakes at 5 am because she's yanked her mask off her face and it's blowing air at her she doesn't start the crying and jerking again when she falls back to sleep. She drifts off easily...any idea why that is?

Maybe 2 reasons.  First, if the sleep studies are any indication, then she's gotten 3 to maybe 7 hours of fairly good quality sleep, and that would seem to be in keeping with the insufficient sleep/overly-tired argument, now she's got at least a hefty refreshing nap.

Second, if there is an untoward medication effect that is causing the difficulty to initiate sleep (headache, anxiety, whatever, between the two you have every side effect known to man), perhaps some of that is reduced.  And that's a definite perhaps, if the half-life of clonazepam is 30-40 hours, and lamictal is whatever it feels like, but let's say it's 30 hours, and both of these could be significantly prolonged because of the renal failure, it might not be much, but maybe enough to take some of the edge off.
sleepydave

So I'm back...she's still having major problems falling asleep (jerking/crying for 2-3 hours) even after her Sleep Doc switched her to BiPap Autoflex at a pressure of 11 inspiration, 7 expiration.  She was averaging approximately 21.7 hypopneas per hour on 7.6 cm CPAP (with EPR of 3).  She's still swallowing too much air and just to complicate things further she's still teething big time...first two upper front choppers finally came in one after the other less than two months ago and now it looks like she's got an upper first year molar on the way.  I'm convinced sore gums and extra saliva make Cpaps/BiPaps less effective.  She's literally foaming at the mouth when she opens her mouth from all that saliva being blown around.

Anyway, she also now has a runny nose/congestion but what is interesting is that as usual after a few days of really bad sleep (worse than usual, wakes up every hour I'm assuming because the BiPap is fighting the congestion) she crashed for a 3 hour nap.  She only does this when she's completely and extremely exhausted and usually when she's sick.  So my new question is this...what happens when she's completely and extremely exhausted sleep-stage-wise?  She doesn't jerk or cry falling asleep...she just crashes...is she skipping short-wave sleep and going right to deep sleep to catch up?  If so, is there a way to safely mimic this phenomenon to help her fall asleep more easily without harming her?  I figured not because if she is skipping short-wave sleep that's probably not a good long-term solution but is a fix her body creates only temporarily.  Last night she was asleep a little earlier...after just 1.5 hours of trying to fall asleep.

BTW her Neuro doesn't think Lamictal is causing a headache or she'd be a cranky little baby all day and not just when she's falling asleep.  Also despite it's failure to improve her ability to fall asleep the CPAP/BiPAP has been helping her oxygen saturation...Kidney Nurse told me that her labs last month showed that her RBC levels etc have finally started to come down after being on the rise since last May.

Thanks for your input :)


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Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube

Hi erin:
Short-wave sleep?  Hmm, I kinda like that, I'm going to have to start using that.  But let's call it NREM Light Sleep, or Stage 1/2 so the sleep stage police don't arrest us.

I believe the short answer to your question is no.  You can't take poor sleep hygiene, add 2 or 3 more stressors to create a state of exhaustion and get a benefit of any sort.

I think your assessment of the situation makes sense, tho.  One tends to be easily aroused from the light NREM stages, and you have more continuous sleep during the deep stages, or SWS.  Once you get to SWS, you're home-free (at least for a bit).  But don't forget, SWS occurs naturally at the beginning of the night anyway (look back at the CPAP graph, and you'll see a hefty quantity of SWS early in the night once sleep eventually comes), so it's still really a sleep-onset issue rather than trying to engineer sleep stages.

I still believe the major issue is over-tiredness and a few (now a lot) of other contributing factors that disrupt/destroy sleep onset.  And it has now become the sleep ritual.

Hmmm, do you need the patented "Lamictal headache" before one would consider Lamictal to be a potential problem for sleep onset issues.  Would be a heckuva lot easier if she could just tell us.
sleepydave

Glad you like the use of newbie skills (aka ignorance) to create new terms :)

I so wish she could tell us too...especially since right now it feels like I'm blind to the major issue.  

Speaking of being blind, my latest thought is that maybe her circadian rhythms are way off because of her vision issues...Cortically Visually Impaired Individuals are known to see better in dim light and you should see how she perks up at night or in a dimly light room!  

Know of anyone experiencing benefit from using a SAD light box in the morning for possible Delayed Sleep Phase Syndrome (DSPS)?  Before we found out she had Sleep Apnea we tried 1mg Melatonin nightly briefly for 2 weeks but it just made her more crankyand didn't help her fall asleep any easier.  I thought she might need a higher dose but wanted to see what the Sleep Specialists said about her sleep issues first.  I've got a call in with her Sleep Specialist to revisit this issue because obviously if we're going in the direction of a SAD light I want both a prescription and instructions.

I do agree that some of her fussing is being overtired.  That's why I'm trying to think of a way to get her to sleep earlier than 1:30-2am...of course I know I add to the problem by not waking her up at the same time each day because I want her to get as much sleep as possible and don't wake her up until I have to.  Can't bear to wake her up at 8 every day and just give her 6 hours sleep a day instead of a possible 7 or 8! :|


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Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube

Hi erin:

Quote:

...I'm trying to think of a way to get her to sleep earlier than 1:30-2am...of course I know I add to the problem by not waking her up at the same time each day because I want her to get as much sleep as possible and don't wake her up until I have to. Can't bear to wake her up at 8 every day and just give her 6 hours sleep a day instead of a possible 7 or 8...

13 hours.  That's how much sleep she needs.  Thirteen.  Trece.  Treize.  Dreizn.  Tredici.

Relatively speaking, what you've got now is like you going to sleep each night at 1:00 AM (I'm assuming you're a DSPS by now as well) and setting the alarm clock for 4:15 AM and getting up.  Every day.  And since the response of children to over-tiredness is the opposite of adults (hyperactivity vs sleepiness), in order to get the true effect, you'd have to wear an iPod to bed and play some AC/DC full-blast backwards while somebody is yanking on one of your teeth with a pair of Channel Locks.  Through a CPAP mask.

Here's the Practice Parameters for Light Therapy:

Light Therapy

The treatment for DSPS is the opposite of what you think it should be, you push bedtime later each day until you're at the point where you want to be.

More horas.
sleepydave

sleepydave wrote:

I'm assuming you're a DSPS by now as well)  

I know I am...but not sure about our sweet daughter...my husband doesn't think she has DSPS because she tries to sleep throughout the day and she tries to go to sleep earlier but just doesn't get to sleep until 1 or 2.  But I think it's more than coincidental that we try to put her down when she's sleepy at 8 or 9 and she wakes herself up completely and it's not until around 11-12ish when she'll keep trying to fall asleep without waking up totally...I can't help but wonder if it's something at the later time (it may be just exhaustion) that is triggering the need to finally get some sleep.  She definitely doesn't fit DSPS completely because there is really no identifiable pattern to her final sleep onset time. More often than not it's between 1:30am and 2am but she can fall asleep earlier or later.  Like last night for some reason she fell asleep by 12am and some nights she doesn't fall asleep until as late as 4am.  

Thanks for the link...very interesting...never heard of "non 24-hour sleep-wake syndrome" so now I'm wondering if that might actually be the problem given her limited vision.  We know she can see although she is technically legally blind.  Her eyes are structurally fine but her vision is inconsistent and varies at any given moment because her vision depends on what her brain can process at that moment (her visual cortex has patchy areas of damage).  I was told it's like she's looking through swiss cheese.  Dim light and movement helps her see because it distinguishes the foreground from the background.  She isn't phased at all by the bright light flashed in her eyes by our opthalmologist but she will close her eyes when she's outside unless her eyes are shaded by a hat.  

So much to try and figure out with this complicated baby!


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Erin
Mom to 3 children 4 and under!! including a sweet 2 year old who has chronic kidney failure with severe cystic encephalomalacia, cortically blind, mixed cerebral palsy, severe global delays, Sleep Apnea, possible RLS, reflux, G tube