So I'm back...sadly my now 2 year old who was diagnosed with Sleep Apnea at 16 months is still yelling/jerking as she's falling asleep and not getting much better using Bipap (at 12cm inspiration, 8cm expiration).  We just did another sleep study to titrate her Bipap a month ago and increased her pressure just by 1 cm (I finally got the report---apparently she had no apneas at that pressure).  Comparing the results from her CPAP titration study, her sleep efficiency is down from 83.6 to 75.2, her total sleep time went from 481.5 minutes to 428 minutes, her minimum oxygen saturation went up from 80 to 84 percent and her RDI improved from 3.2 to 2.5.  She still has only obstructive hypopneas and had respiratory events with arousals (2 in NREM and 16 in REM---12 hypopneas and 4 central apneas) but no PLMs with arousals.  The biggest change is whereas in previous studies (diagnostic and CPAP titration) she had no PLMs at all...in this study she had lots of PLMs (in stage 2, 3, 4, and REM sleep).  She slept on her side instead of her back this time.  Any thoughts on what this means?


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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:
Welcome back, I had certainly hoped that some progress would have been made by now.  Oh well. what is, is.

How many PLMs is a lot?

And are you sure they're PLMs?  Some people will report out limb movements that are only loosely organized, but are not really PLMs or are simply movements generated by something else.  These should more accurately be reported as LMs.

Even in SWS and REM, huh?  That's unusual (not impossible, just unusual).

How the renal failure doing?

BTW, what kind of EEG hook-up are they using?  In routine NPSG, the EEG looks at the middle of the brain back, it's easier to score sleep that way.  In looking for seizure activity during sleep, you really have to look at the front.  Just curious, it's only a couple more wires, you never know what'll shake out.
sleepydave

sleepydave wrote:

How many PLMs is a lot?

Here's the info in two tables---
PLMS and Sleep Stages
Total Sleep:  All-PLM index = 102.5; All-PLM Total =731
Stage 1: All-PLM index = 0; All-PLM Total =0
Stage 2: All-PLM index = 115.9; All-PLM Total =369
Stage 3: All-PLM index = 120; All-PLM Total =87
Stage 4: All-PLM index = 47.6; All-PLM Total = 75
Stage REM: All-PLM index = 125; All-PLM Total =200

PLM Events w/out arousals
Total Events: Index = 102.5; Total = 731
NREM: Index = 96.0; Total = 531
REM: Index = 125; Total = 200

sleepydave wrote:

How the renal failure doing??

No major changes.  Her creatinine jumped a little but all other electrolytes are in an expected range so her Kidney Docs just increased her fluid intake in case it jumped because she was dry when it was measured.

sleepydave wrote:

BTW, what kind of EEG hook-up are they using?  In routine NPSG, the EEG looks at the middle of the brain back, it's easier to score sleep that way.  In looking for seizure activity during sleep, you really have to look at the front.  Just curious, it's only a couple more wires, you never know what'll shake out.
sleepydave

I'm not 100% sure...I'd have to ask my husband he subbed for me this time...I think it was all over her head though because the glue sure was :).

FYI, a recent hip x-ray suggests she might have bilateral acetabular dysplasia (basically shallow/immature hip sockets...not uncommon for a child with Cerebral Palsy who doesn't bear weight on her legs) so I can't help but wonder if that's part of the crying with jerking (i.e. experiences pain when she kicks her legs). We have an appt with an Orthopedist to discuss her hips further.


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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:
Well, that certainly qualifies as "a lot."

I don't think anyone knows the mechanism behind PLMs, but they can be increased in renal failure.  That's a heckuva increase, tho.

Generally speaking, if PLMs don't cause any arousals, they aren't treated.  And in children, it's often tough to get physicians to prescribe pharmacological treatment of PLMs even if there are quite a few arousals, in spite of the growing body of evidence that shows significant improvement in daytime performance.

The other thing is that people with PLMs often have Restless Leg Syndrome (RLS).

Hmmm, now there's a thought.
sleepydave

sleepydave wrote:

The other thing is that people with PLMs often have Restless Leg Syndrome (RLS).
Hmmm, now there's a thought.
sleepydave

Yup and now you've got me thinking....we were already starting to think that the Klonopin (which she is now completely off of...and was only on .6ml 2x a day of a 1mg/10ml suspension) was actually helping her sleep.  That is, it was not helping her fall asleep but helping her stay asleep when her sleep hours dropped from 7-9 hours per night to 5-7 hours per night (and sometimes as little as 4 hours)...but now I'm thinking maybe it was stopping her from being so restless (she now yells out and needs resettling multiple times a night) when before on her full Klonopin dose (6.5 ml/day of that same suspension) once she was finally deep asleep we didn't hear from her at all.  Not that I'll put her back on that nasty sedating addictive drug 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

Non arousing PLMs still repeatedly stress the affected joints (especially hips & knees) and muscles. My initial doc visit was for muscle and joint pain.  Sounds like her hips don't need added stress. I would ask the doc about that. Maybe arousals aren't the only issue to be considered.


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My pursuit of sleep reminds me of the greased pig chase at the county fair - easy to grasp but impossible to hold on to.

sleepydave wrote:

Hi erin:
Well, that certainly qualifies as "a lot."

I don't think anyone knows the mechanism behind PLMs, but they can be increased in renal failure.  That's a heckuva increase, tho.

Generally speaking, if PLMs don't cause any arousals, they aren't treated.  And in children, it's often tough to get physicians to prescribe pharmacological treatment of PLMs even if there are quite a few arousals, in spite of the growing body of evidence that shows significant improvement in daytime performance.

The other thing is that people with PLMs often have Restless Leg Syndrome (RLS).

Hmmm, now there's a thought.
sleepydave

Just a quick update...brought the 731 PLMs up to her Sleep Specialist and although she doesn't fit the mold for RLS (possibly because her PLMs apparently aren't arousing???) he was willing to give Mirapex a try because 1) she was crying while jerking her legs, 2) RLS can be associated with Renal Failure and 3) they've used Mirapex in children as young as 6 months.  

With the Mirapex....we finally got some relief from the screaming while falling asleep! She stopped yelling for 2 hours straight and instead now only cries for 1/2 hour max.  Our problems now are

1) she still hates her mask and we just can't find one that she'll tolerate and/or won't be able to find ways to break the seal.  So she's still waking up multiple times a night because air is blowing in her face.

2) when she wakes up between 5am and 6am she goes into full yells again and we've started to think her Mirapex has worn off (it's usually given to her at 9:30pm or so).  Her Sleep Specialist mentioned that children tend to metabolize it faster than adults but his Fellow said she was surprised to hear this because they've never had waking followed by yelling upon falling asleep again.  He agreed to try an extra half dose before 5 am (because right now we're technically treating her jerking off-label).  We haven't tried it yet and are hesitant to because with her renal failure we're not sure we might end up giving her too much and make her jerking worse.  Any thoughts on this?

She's so complicated and never fits neatly in any box it's hard to figure out what's the best treatment...but we're SO HAPPY it's not so hard for her to fall asleep at night any more. If only a good pediatric interface existed that will fit her small face/head and not make her feel claustrophobic and tortured!  Right now she tolerates Petite Nasal-Aire (size E) nasal pillows when she's awake but the minute she's tired she fights them like crazy and buries her head in her bed to break the seal!  Little stinker! LOL!


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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

Your mention of PLMs brought the following to mind.  Sometimes restless leg syndrome and PLMS can be associated with certain iron levels, and sometimes it is recommended to take an OTC iron supplement-(especially in kids who arent always prescribed meds).  

As for the CPAP mask, what is it about the mask that is the problem?  I know the nasalaire is one of the smaller masks out there (smaller meaning less bulky), but it does still have a lot of straps to deal with.  When I have used them in the sleep lab, I often will not use all of the straps, but rather I will have patients wear it like an oxygen canula (over the ears and back to the front), and then have one single velcro strap going around the back of the head from ear to ear.  Seems to work pretty well.

tim050001 wrote:

Your mention of PLMs brought the following to mind.  Sometimes restless leg syndrome and PLMS can be associated with certain iron levels, and sometimes it is recommended to take an OTC iron supplement-(especially in kids who arent always prescribed meds).  

When she first started having jerking while falling asleep we checked her iron-levels and they were fine.  That's why I think if it's not some atypical form of RLS or PLMD it may be Dystonia related to her Cerebral Palsy but the fact that it only bothers her when she falls asleep doesn't explain that hypothesis.

tim050001 wrote:

As for the CPAP mask, what is it about the mask that is the problem?  I know the nasalaire is one of the smaller masks out there (smaller meaning less bulky), but it does still have a lot of straps to deal with.  When I have used them in the sleep lab, I often will not use all of the straps, but rather I will have patients wear it like an oxygen canula (over the ears and back to the front), and then have one single velcro strap going around the back of the head from ear to ear.  Seems to work pretty well.

The Nasal-Aire Petite is new and has different (no longer nasal cannula like, more like the Nasal-Aire Freestyle) tubing than the Nasal-Aire I and II
http://www.innomedinc.com/content/petite
The smallest size of the Petite are the only nasal pillows that will actually fit my duaghter's nose.  Problem is the tubing has to go down toward her chest to stay in her nose and she snags it with her arms in her sleep (when she wiggles out of her soft arm restraints - Pedi-Wrap http://www.medi-kid.com/armmenu.htm ).  Also, without being a seamstress I couldn't adjust the cheek strap on the Micro Headgear to be small enough to fit her small face so we been having to use her Adjustable Headgear from her old small SNAPP nasal pillows (which were slightly too big) which I had already velcroed down to fit her small head.  Of course "down-sizing" like this never produces a good fit/unbreakable seal, which I why I keep waiting for some manufacturer to realize there is a market for pediatric headgears (the Kidsta can't be sized small enough for her) and make a better pediatric interface for small kiddos for whom surgery is not an option.


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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

ohhh youre right.  I had fogotten that the new nasalaire cannulas face a different direction than the old ones.

It's been a while...but in case there are others facing similar issues I wanted to provide an update that our Sleep Specialist agreed to let us do a trial of Mirapex and it made a huge difference!  She no longer jerks and cries for 2 hours falling asleep.  

Unfortunately she's still having multiple wakeups a night even on the Bipap...I think because she's fighting it so much.  We put it on after she falls asleep and somehow she shifts the nasal pillows so the air wakes her up then she fights it (no kidding...we've found the whole mask around her neck!).  It seems like if she gets just a few hours sleep it gives her enough energy to fight the mask and then she just catnaps the rest of the night even with it on.  But it is so much better not to hear her suffer in the same way she used to when she is trying to fall asleep!

Erin


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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

[quote="norcalmom"]

sleepydave wrote:

How many PLMs is a lot?

Here's the info in two tables---
PLMS and Sleep Stages
Total Sleep:  All-PLM index = 102.5; All-PLM Total =731
Stage 1: All-PLM index = 0; All-PLM Total =0
Stage 2: All-PLM index = 115.9; All-PLM Total =369
Stage 3: All-PLM index = 120; All-PLM Total =87
Stage 4: All-PLM index = 47.6; All-PLM Total = 75
Stage REM: All-PLM index = 125; All-PLM Total =200

PLM Events w/out arousals
Total Events: Index = 102.5; Total = 731
NREM: Index = 96.0; Total = 531
REM: Index = 125; Total = 200



Just a comment from an adult female with 690 limb movements, PLM index 113.5, PLM arousal index: 0.  I have an artificial right hip and have sciatica and nerve damage going down the left leg.  These two things cause me to move my legs and shift my body during the night.  So the leg movements you reported could be due to existing illness/disease. Good luck in discussing this with the doctor.

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