Tuesday, February 24, 2015

Part 2: Treatment Plan and the Health Risks Associated with Obstructive Sleep Apnea

The sleep study results landed Ellie with the official diagnosis of Obstructive Sleep Apnea with hypoventilation and oxygenation instability.  Isn't that a mouthful? 

Obstructive sleep apnea [OSA] and sleep disordered breathing [SDB] can have a huge impact on health.  Actually, it can be very detrimental to one’s well-being.  I still shutter when I think about what Ellie is at risk for if we do not treat her OSA.

The symptoms above are what we in the health care field refer to as "red flags".  Some of the symptoms may mean nothing at all or may signal a sleep disorder.   Yes, snoring is a sign of OSA, but not everyone who snores has OSA and not everyone who has OSA snores.  That being said, chocking and gasping while sleeping is a neon sign indicative of OSA.

In addition to the signs listed above, kids can present with a few other symptoms (Ellie's are in purple): 
  • anger control issues
  • difficulty swallowing 
  • irritability
  • daytime sleepiness
  • frequent runny nose
  • mental brain fog
  • hyperactivity
  • impulsivity
  • inattentiveness
  • poor school performance
  • memory loss
  • headaches
  • learning difficulties
This pic is from 2 years ago before her T & A.  Notice that she is propping herself up or sitting up to sleep?
These are also signs of sleep apnea in children.

If you have been following this blog for any amount of time, you know that my daughter has severe ADHD  and had shown signs prior to turning 3 years-old.  You also know that when she has poor sleep, it is like ADHD on steroids—as in it is like she never took her Adderall.  Her ability to function at school is pretty much nonexistent.  She has trouble participating in class.  Trouble sitting in circle time, lunch, art, music, therapy.   Trouble concentrating and following directions.  Impaired social interaction as she is “grabby, impulsive, irritable”.  

In fact, studies (several posted in the medical journal Pediatrics between 2009-2013) suggest that there is a blurring of lines between ADHD and OSA. According to the American Sleep Apnea Association, at least 25% of children misdiagnosed with ADHD actually have a sleep disorder, specifically obstructive sleep apnea.  This may be because poor sleep may damage neurons within the prefrontal cortex of the brain.  I have no doubt that Ellie’s sleep apnea and early wakings manifest as ADHD behaviors.  All of that being said, I do believe that she has underlying ADHD just because of our family history.  It makes me wonder though, if we treat her OSA and we treat her ADHD, how well will she do in school?  How will her friendships evolve?  How will our home life change and be improved?

Photo: ADHD Caregiver Day

This goes beyond behavior though.  Obstructive Sleep Apnea MUST be treated.  It CANNOT be ignored.

Untreated OSA and the resulting high levels of inhaled CO2 and poor oxygenation can lead to:

  • Increased heart rate and blood pressure
  • Cardiovascular disease
  • Increased risk for stroke
  • Increased blood pressure
  • Unstable blood glucose and insulin levels, leading to diabetes
  • Memory loss
  • Kidney problems
  • Hormonal imbalance, especially with testosterone

Photo: www.pacificdentalcare.org

All health issues that can eventually lead to poor quality of life as well as death.  Death! Oh goody.  Bear is only 5 years-old, so what will her life be like at 20, 40, 50 if this isn't managed?!

In children, the usual culprits are enlarged tonsils and adenoid obstructing the upper airway.  Nearly 2 years ago, this April, Ellie had a tonsillectomy and adenoidectomy [T&A].  She had a never ending sinus infection that was resistant to antibiotics and nasal sprays and it lasted months.  She also had frequent ear infections that have required a set of ear tubes every 6-9 months.  In those last 2 months leading up to her surgery, she was propping herself up to sleep.  The T and A  essentially cured her.  After surgery, she didn’t have a sinus infection for 11 months.  ELEVEN months!  Ellie’s last set of ear tubes was in April 2013. 

Showing how large tonsils and adenoid can partially obstruct the airway
Photo: KidsHealth

Sadly, all of that has changed.  This past August is when she started up again with the recurrent, frequent sinus infections.  August is also when her sleep issues started.  She had fluid in her ears this past fall and an ear infection around Christmas.  In December, I asked her ENT doc if her adenoid might have grown back. . . I was told it is rare and too soon.  We were advised to wait until the summer and if she was still having sinus issues, we would reassess. 

Oh yes, I did say it. THE ADENOID CAN GROW BACK!  Yes, it isn’t common, but I laugh in the face of low percentages and low risk.  After all, my odds ratio of having a child with Down syndrome was 1/1300.  A 2011 study in Laryngoscope, show the rate of adenoid regrowth requiring a secondary adenoidectomy to be 1.3%.  Another study in the International Journal of Otolaryngology revealed that those with adenoid regrowth tended to be younger at the age of their initial adenoidectomy as well as had a much larger adenoid than the general population.  Ellie was 3.5 years-old at the time of her T&A and I was informed that her adenoid was “very massive with extreme crusting” aka large and nasty. 

When one falls asleep, the muscles relax.
This allows the tongue and soft palate to fall towards the back of the throat.
For some people, this leads to obstruction.
Photo: Mayo Foundation
Ellie’s Treatment Plan :

  1. Follow up with ENT to rule out adenoid regrowth and palate abnormalities.
  2. If there is no adenoid regrowth, begin desensitization for CPAP (more on that later.)
  3. If CPAP is not tolerated, discuss further surgical options dependent upon cause of obstruction a. Palate Surgery for long palate obstruction  or  b. Genioglossus advancement aka base of tongue advancement surgery.  Again, more on this later.

This will totally be Ellie.
Photo: medicalxpress.com

Ellie’s Sleep Doc wanted her seen by ENT the week we got her results (2/9) or last week.  Unfortunately, her ENT is out of town for the rest of this month.  Thankfully, ENT and sleep doc coordinated and made sure the Ellie is seen the first day Dr. Z is back in office.  So on March 3rd, Ellie will have her ENT visit.  Meanwhile, we have that many more days until we get answers and even longer before we can treat her OSA.

Bring on the coffee!

Part 1: Polysomnography, sleep study results, and obstructive sleep apnea

Tonsil and Adenoid Removal (T&A) Recovery Tips

From a few years ago--I want to go back to sleeping!

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Tuesday, February 17, 2015

Polysomnography, Sleep Study Results, Obstructive Sleep Apnea, and other things

Sleep Study Results Revealed and Explained

We have known about Ellie’s sleep study results for about a week now.  There has been a lot of information to process and of course, a lot of researching on my end.  (Hey, I used to order sleep studies, not interpret them!)

Oh where to begin.  For a recap of her sleep issues, visit here.  For more information about the sleep clinic appointment, visit here.

My little sleep deprived movie star.

According to the doctor:

Ellie is a 5 year-old with trisomy 21.  She has evidence of mild pediatric obstructive sleep apnea.  However, the patient has evidence of nocturnal hypoventilation and moderate-to-severe oxygenation instability as a result of her sleep disordered breathing.  She requires intervention for her OSA.

Polysomnography showing apnea with oxygen desaturations and arousals following apnea.
Photo: www.northcountryneurology.com


Ellie sometimes stops breathing while she sleeps aka has apnea. According to her sleep study report, she only had 3 apnea episodes, each lasting approximately 10 or more seconds.  It is obstructive because her physical anatomy (small mid-face, tongue, palate, etc) affects her ability to breath while laying down.  Central apnea would involve a problem with the brain signaling the chest muscles to move and this type of apnea has been ruled out.  Pediatric apnea is defined as a pause in breathing.  In children, the pause can be any length of time while in adults, apnea is defined as pauses in breathing that lasts ≥ 10 seconds.  

Hypoventilation is the reduction of airflow by 50% for two respiratory cycles accompanied by reduction of saturation by 3% or arousal from sleep.  Right. So in layman’s terms, the amount of air that flows into the lungs is 1/2 of what it should be and as such, her oxygen saturations [SpO2] go down. 

Ellie's overnight sleep study.  How can one sleep with all those wires?

Respirations, Carbon Dioxide, Oxygen Saturations: 

Ellie is diagnoses with nocturnal hypoventilation because she takes very few breaths while asleep and those breathes are very shallow aka she has hypopnea.  Each hypopneic episode lasted 20 + seconds. This causes poor inhalation and exhalation as well and a decrease in oxygen saturation.  

Oxygen Saturations:  looking at oxygenation levels during hypoventilation. Say that Ellie’s normal O2 sats are 100% (okay, her sats really do sit at 100%), if she drops to 97%, it is logged as hypoventilation ( or say when she dropped into the 80’s as seen during her sleep study). 

Carbon Dioxide Levels:  Breathing also involves the exchange of oxygen and carbon dioxide [CO2].  As you breath O2 into the lungs, you expel carbon dioxide out through your nose and mouth,  My daughter’s inhaled CO2 levels are very high.  For 81% of the time she is asleep, her CO2 levels are 50-62mmHG.  Normal CO2 is 35-45 mmHg.  Think of it as breathing face down into a pillow . . . for a huge chunk of the night.  

Respirations:  A normal respiratory rate for a 5 year-old is ~ 20 breaths per minute.  While asleep, Ellie’s was at 9-12 breaths per minute.  Too few breathes = hypoventilation = increase CO2 + decreased O2

Photo: www.proacthealthsolutions.com

Quantity vs. Quality and Arousal.

It should be noted that Ellie managed to sleep 7 hours and 48 minutes during her sleep study.  She fell asleep quickly and her arousal index was 15.1 (normal 9-16).  She spent 33.3% in REM sleep which is age-appropriate.  All of this is good, except REM sleep is where everything goes down hill.  Here is how it goes, your brain recognizes that your CO2 levels are rising, this causes an arousal.  With that arousal, you wake up a bit and trigger a bigger inhalation of air and thus increase your oxygenation and bring down the CO2 from the danger zone.  This is why people who have apnea tend to wake up alot through the night or never feel rested during the day.  Even if the quantity of sleep is there, the quality is not. 

Indexes Defined:

Apnea Hypopnea Index [AHI] looks at the number of apneas and hypopneas per hour of sleep.  For Ellie, her AHI was 4/Hr which placed her at mild OSA.  However, during REM, her AHI was >12/Hr which is severe.

SpO2 nadir is a fancy way of saying “the lowest SPO2 recorded”. Ellie’s lowest sat was at 81%.  This is not good, but it didn’t require intervention with supplemental oxygen during the sleep study.

Oxygen Desaturation Index [ODI] looks at the number of times per hour, a person’s oxygen saturations drop by 3% or more.  For Ellie, her ODI was 6.8 during stage 1&2, but then jumps to 9.5 ODI during REM sleep.  This is another reason why she has “oxygenation instability”.

Someone thought that should would take a little rest during dance class.

This blog post is turning into a term paper here so I will sign off now and write another post later on what the plan is for Ellie. 

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Wednesday, February 4, 2015

An End to an Era

I have known for a little while now that when their lease is up, our local Quiznos will shut its doors.  For at least 6 months, they have been the only business in that strip mall and with the owners' other business, Moonie's Burgers in North Austin, taking off, it is a savvy business move for them and their family.

Taken at one of our last visits.

It may seem a little ridiculous that I am dedicating another blog post to a sandwich place.  I mean, yes, there are sandwiches, but it is so much more! We have been visiting Quizno's weekly for nearly FOUR years.  Many things have happened at this Quiznos.  Things that have been of utmost importance to Ellie's development and to my sanity.

We started going there back before Ellie could even hold herself upright independently in a high chair. Goodness, in the beginning she didn't even eat there because she couldn't have anything made in a plant that processed oats.  Instead, we would accompany my friend and her two children there for lunch.  Eventually, things evolved it became a weekly, post-therapy ritual for mother and daughter to dine at Quiznos.

This picture of Ellie has been hanging behind their register
for the past 2 years.

After my daughter's oat allergy resolved, we introduced to her gluten, only she never wanted anything to do with it.  It was at the Q that she first tried a flatbread sandwich, but only ate the flatbread.  This went on for a while and she then would have a cheese flatbread with the cheese and bread separated out.  You couldn't cut the flatbread.  Oh no, because then it is "broken".  The cheese and bread couldn't touch each other either. Everyone at Quizno's knew her food idiosyncrasies and every new employee would learn them pretty quickly.

We can spend big money for therapies and spend a lot of time chauffeuring back and forth to speech and OT, but sometimes it is the day-to-day actives can produce the biggest milestones.

My daughter placed her 1st food order about 2 years ago with prompting.  She signed "sandwich cheese cookie please".  Later, she was able to order cookie verbally .  That's right, the very first time Ellie said "cookie" was at the Q.

The Bear dragging her bright blue penguin to the bus stop,
a Christmas gift from the Quizno's family.

Later, she drank from a straw for the first time ever at Quiznos.  She held the big cup buy herself in her tiny little hands and was able to purse her lips and get proper closer around that red straw.

After paying for our order, I would tell Ellie that we need two straws and count them out.  I have worked on teaching Ellie numbers and counting in general, but I never really knew if she was getting it. Then one day, I told Ellie to get me 2 straws and she brought two straws!  It may not seem like much, but this was huge!

This past summer, when Ellie was on a starvation diet an only consuming a handful of calories a day while losing weight, I would talk her to Quiznos.  She wouldn't eat much during that time, but she did eat.  It was the one motivator that I know would work.  Eventually she started eating again and we were able to introduce chicken to her diet.  Chicken with pesto.

Ellie with the owner's husband who was helping out that day.

The greatest blessing of all, is the Quizno's family. When you visit a small business weekly for 4 years, you start to know the owners and the workers. You also get to know their kids.
Ellie wiggled her way into their hearts and I was able to have enjoyable adult conversation.  I really do love being a SAHM and it truly is a joy, but sometimes it can be rather lonely.  Eating at Quizno's was like a social event and a fun one at that!

Ellie eventually switched from cookies to brownies.

I do not know how I am going to break this to Ellie. Nor if she will understand.  We went to the Q the other day after her therapy not realizing that they cut back their hours for this last week.  They were closed.  I showed Ellie the darkened store and had her try the locked door.  She started to cry.  She started to sob as I buckled her into the car all the while pointing at Quiznos and signing "sandwich".  Then as I pulled out of the parking lot, she lost it.  We pass Quiznos along the way home from horse therapy and I imagine that I will be finding an alternative way home for the first few weeks that they are closed.

Good bye Quizno's and thank you for all you have done for our family.  We will miss you, but I imagine Moonie's Burger will become our new hang out.

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Sunday, January 25, 2015

The Sleep Study.

Last week, Ellie had her overnight sleep study at the children's hospital.  We had this private room with a hospital bed, a rather uncomfortable love seat that can apparently turn into a bed, and a bathroom.  We also had all sort of monitors, wires, electrodes, nasal canula with a sensor on it, and  camera that records the ongoings in the room.  Good thing I didn't pick my nose while I was there for all to see on video!  Just kidding!  One has to have a bit of humor to survive these things.

A sleep study or polysomnography sounds pretty benign, right?  After all it isn't invasive.  There is no scalpel cutting into you. . . yet in order to record brain waves, measure the oxygen levels in the blood, monitor heart rate and breathing, as well as recording eye and leg movements during sleep, there are going to be an awful lot of wires, electrodes, and devices.  Which brings me to--how on earth does patient actually sleep during a sleep study?

Loaded with her iPad, blankie, a fresh pack of Princess flashcards, Eric Carlisle books, a wooden kitchen spoon (I have no explanation for that), and her little baby doll,  MacGyver Bear was ready for anything.

Even though your bambino is the one with all the fancy wires, don't expect to sleep either folks!  First off, the chances that your precious child will fall asleep are 50-50.  If she's awake, you're awake. Plus, by the time they get your child all wired up, it will practically be your bedtime.  If you opt to sleep on the fold out sofa, yeah good luck with that.  I slept with Ellie and it was like sleeping with a bed hogging ninja.  Seriously, Bear, you just had to sleep diagonal in the bed?  Say that you do actually get comfortable, prepare for the lab tech to interrupt the Sand Man every 30 minutes as she attaches more tubes and wire or readjusts ones that or there or my personal favorite, the respiratory therapist comes in to sneak a finger poke.  Right, because a child can sleep through someone pricking her heel with a  needle and then milking that foot like a cow to get enough blood for the blood gas they want to run.

Now that I got that out of the way, here is what actually happened with us.  On the day of the study, Ellie had school, OT, and ST.  That day she decided she wanted a nap.  I kid you not.  She said "mama" and signed "bed"!  After all of these months and girlfriend wants to take a nap on the one day we need her to sleep at night.  This mama bear did not allow it!

We arrived at the hospital at 7pm and she was so tried.  The sleep lab tech didn't get us from registration until 7:45pm.  Over the next hour, Ellie has electrodes placed on her legs and chest and had these belts strapped across her.  As you can imagine, Ellie was not a big fan of this.  She fought in the beginning, even with the iPad, but once I had Ellie imitating everything on her little baby, she tolerated just fine. . . until we got to her head.

There are 15 electrodes that go on the head.  First, you have to actually measure the head and then measure from various points once the first few electrodes are attached.  So essentially, the tech has measuring tape with a red wax pencil to mark the spot on Ellie's scalp.  Then, conducting gel is applied.  Then the electrode placed.  Finally, a piece of fancy tape with some fancy, stinky glue is place over the electrode.  Repeat 14 more times.  It didn't matter that I brought the iPad, little baby, the wooden spoon, blankie or even the brand new package of Color Wonder markers and the brand new package of flashcard, Bear became a rather distraught tornado of destruction.  The lab tech was very good and patient, but when Ellie doesn't want to do something, she has the strength of a gorilla.

When Bear had enough, at this point it was 9pm, we decided to let her fall asleep and then she would try to do the back of her head, facial electrodes, and the nasal canula.  I pretty much rolled my eyes at this.  I mean, come on!  Who could sleep through that?  I was wrong.  Apparently, my daughter can.  I guess that is was happens when you are that tired.

My biggest fear was that she wouldn't sleep and yet she did. . . for hours at a  time!

I learned a few things during this sleep study:

From 9pm-12:30am she did not move.  At all.  She stay in the exact same potion--on her back, hands under her bottom and her legs criss-crossed. Not comfortable looking at all.  How she managed to do that without getting a bed sore is beyond me.

Right at 12:31am, Ellie became extremely restless.  She was pulling up her legs and shaking her head side to side.  It was as though she couldn't get comfortable.  This went on for the rest of the night.  She never really settled back down, but she stayed asleep.  I do not find it coincidental that this started at 12:31am and Ellie's early wakings tend to start between 12:30am-3:00am.

My daughter doesn't love me.  Well maybe not, but she does talk in her sleep.  Periodically, throughout the night, Ellie would utter "dada da dada da".  "Dada".  I see how it is.  I am the mean mommy who holds her down and Andrew is the good parent.  Daddy's girl!

My daughter has manners.  She may not always follow directions and sit still, but she does know her please, sorry, and thank you.  Early in the morning, the male RT came in to poke her heel for a blood gas.  Ellie, still mostly asleep, sat up and said "dada. Thank you. Thank you.  Bye bye".

My husband is awesome.  Andrew managed to escape spending the night in the hospital, but he did chauffeur us back and forth because my back pain skyrocketed and I was too sleep deprived to drive safely.  He showed up at 6am (which is ridiculously early for him) bearing gifts of donuts and coffee!

She is actually quite happy in this picture.  Daddy and a donut with sprinkles.  What is not to like?

Not to worry! The Bear may have looked miserably tired, but about 2 hours later, girlfriend was ready to go in all of her Ellie Bear Fashion Glory.

Elephant sweatshirt with coordinating elephant pajama pants.  Layered with a Hello Kitty hoodie.
The look is completed by a knit pink headband with faux seed pearls and Batman Crocs.
Entourage: play blood pressure cup and tweezers, scrap Hello Kitty flannel fabric
Princess Tiana barbie doll, Andrew's socks, and 1 baby washcloth.

In case your child ever needs a sleep study, here is what I recommend bringing:


  • 2 piece pajamas (no footie or one-piece)
  • socks
  • diapers/wipes
  • toiletries
  • change of clothes for the next day (we actually didn't bother with this)
  • items your child usually sleeps with-lovie, dream lite, comforter, pillow
  • favorite bedtime book
  • iPad or toys for distraction (I brought NEW flashcards and Color Wonder to up the excitement)


  • Xanax. . . again kidding!
  • Pajamas/yoga pants.  A spare set of PJs or shirt.  I always get something nasty on them like blood or in this case snot and electrode glue
  • Hoodie because it is cold
  • Socks, preferably fuzzy
  • Clothes or the next day
  • Toiletries
  • Book for myself--this was my "just in case Bear false asleep and I am not tired" item. 
  • Snacks/water bottle

Tips to remove electrode glue and adhesive:

Ellie looked like Beetlejuice after her sleep study.  Her hair was tangled, matted and every which way with glue that actually resembled plastic being moulded to her scalp.  She had massive patches of adhesive on her legs, chest, and below her left ear.

The tech gave us some adhesive remover wipes which did nothing and then recommended nail polish remover for her hair--say what????  Obviously I took Bear's hair dilemma to Facebook.

Face and body: rubbing alcohol, coconut oil

Hair: coconut oil massaged into the scalp and washed out, spray sunscreen, Dawn dish soap as a shampoo, and peanut butter.

The rubbing alcohol removed most of the residue, but not all of it.  I used a wash clothes with baby shampoo to get the rest of it.  There is still some there, but I figure that will wear off eventually.

I brushed out Ellie's hair after a major washing only to realize so much gunk was still adhered to her head.  I worked in coconut oil as much as I could along with a leave in detangler.  After rinsing to the best of my ability (remember the Chunky Chicken hates having her head touched), I tried to work out the softened chunks of glue from her hair.  Some of it is still there and I am going to pretend that I really care.

So now. . . we wait for the results which takes about 2 weeks.

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