Sleep study with CPAP mask!

[laurasnowbird]

Wow, that was fun. I'm sure you guys know I'm being very sarcastic.

We actually had much better luck this time. This was Ethan's fourth sleep study, and the third at U of M. We got REALLY nice people this time, and they were very kind and patient with him. Far more so than in times past.

We finally got the mask on him, sheesh, I didn't expect it to be that weird looking. He freaked out about it, but we eventually got him to wear it and fall asleep with it on. He would not allow us to hook up the machine while he was awake, so we thought we would hook it up after he was sound asleep. Sounded good on paper. He woke up flailing and terrified each time we tried to turn it on, and we tried three times.

Finally, I said we were just going to have to get him to fall asleep with the pressure on. It took me and both nurses to get it on him and keep him from tearing it off. He managed to rip it off with his feet one time! So we were all holding him down, actually he was laying on top of me, with his back to me, and I had my arms wrapped around his upper body with his arms pinned to his sides. I kept thinking "Is it worth it?" He was soooo scared and upset. I have a great deal of faith in his neurologist though, and knew he wouldn't have subjected us to this if he didn't feel it was in Ethan's best interest. He knows all Ethan's sensory issues.

When he finally fell asleep, he just conked out all at once. I was afraid to move for fear of waking him, so I spent almost three hours with the back of his head in my face and the tube from the unit pushed into my cheekbone. Man, the things we do.

Gotta say though, he slept beautifully with it on. None of the restlessness he usually shows, no folding over to sleep, none of that. And the really great news is that he got into REM sleep and stayed there! In the past, he never really got into REM sleep for any period of time. He kind of woke (or at least I thought he was awake) after three hours, but then settled back down to sleep. The tech told me that even though his eyes were open he was still asleep. At least he was off my face, LOL!

He only got about 8 hours of sleep compared to his usual 10-11, but he was in rare form the next day! I expected him to be tired, but he was so ON that I couldn't get over it.

On the walk back to the car, we passed groups of people coming to work at the university. He passed one group of men, and say "Hey Dudes!" and put his hand up for a high five. The next group he saw was a bunch of women, and he sings out "Good morning ladies!" as clear as day. He was so much more talkative than normal all day. I talked to his aide, and she said he was far more attentive than usual at school.

We don't have our home unit yet, and I'm sure I'll be exhausted for the first couple of weeks trying to get him to wear it all night. But if we get that kind of change due to a good night's sleep, it is so worth it. I remember what a zombie I was when I was nursing the kids. I know how important it is to get enough sleep, and how much grouchier and easily annoyed I am when I'm overtired. I think we just got a firsthand demonstration of how much Ethan's behavior is impacted by lack of good sleep. And he's only considered to have sleep apnea in the mild range!!

I may be singing a different (more exhausted) tune when we get our actual unit, LOL, but I would encourage anyone with concerns about their child's sleeping to pursue it. Ethan never snored, in fact slept to quietly I was always checking to see if he was breathing. Not your typical picture of an apnea sufferer!

[damarasmom]

It sounds like it worked very well for him. I sure hope that getting him to use one at home isn't as difficult as you may think. What a great fix and so nice to hear he was "ON" the next day...just GREAT!

[hannahph]

I am so glad you had a good study.Hannah has been on CPAP for almost two years now and it makes a HUGE difference in her life.Expect some ups and downs as he gets used to it but have faith in time that this is the right thing for him.Let me know if you ever need help with any of this and good luck!

[Chris]

Laura,

Why did you pursue the sleep studies in the first place? What were Ethan's symptoms of poor sleep?

Sarah sleeps about 11 hours a night but is banging against the wall and the sides of her bed all night long. We also find her sleeping folded over at times. She does snore occasionally but not all the time.

Good luck with the CPAP mask!

Chris

[laurasnowbird]

You know, Chris, we decided to do the sleep study mainly because of an article I read about sleep apnea in kids with DS. A study done by the Cincinnati Children's Medical center recommended testing for ALL kids with DS.

We didn't have a high level of concern about Ethan before the study. He rarely if ever snored, and was a VERY quiet sleeper. He did sometimes sleep in the taco position, you know, folded over. He didn't crawl all over the bed, in fact slept pretty much in one position.

We did the study because the article I read indicated that about 60% of kids with DS have sleep apnea. We were quite surprised to learn that he had moderate sleep apnea! Because of the apnea, his tonsils were removed in October 07. He had a follow-up sleep study in I think April of '08, and we didn't see the neurologist about it until August of 08. Ethan's sleep apnea post-surgery was mild, but his neurologist felt it needed to be treated. I trust his neurologist, he treats Ethan like a person, NOT like a person with DS, if you know what I mean.

From the article I mentioned:

"There is concern that an excessive number of arousals may lead to fragmented sleep and sleep deprivation. Excessive sleep arousals and sleep fragmentation have been linked to symptoms usually associated with sleep deprivation such as daytime sleepiness, lack of energy and lack of initiative.

Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome."


There is a lot of potential for harm with sleep apnea. One of the areas of concern is of course oxygen desaturation, and even with moderate sleep apnea, Ethan's oxygen saturation wasn't dropping to the point that it would cause him physical harm. However, many kids are affected on that most basic level.

The major impact on Ethan was the arousals. We never realized that he had issues, because he went to bed, stayed in bed, and slept very well as near as we could tell. He goes to bed about 8:30, and gets up about 7am. Sleeps through the whole night and always has. However, he was experiencing arousals from sleep that were preventing him from getting good quality sleep when his airway would be obstructed. I would have thought that "arousal" would mean that he was fully waking, but it's more complicated than that. He would wake enough to prevent him from attaining the deeper levels of sleep that are associated with cementing the learning you've done during a day. I'm probably explaining it badly, but I can tell you this, we NEVER really thought he had an issue, and I slept in the bed right beside him for all four of his sleep studies (well, under him for half the last one, LOL!). The arousals they refer to are not necessarily arousal in the sense of them waking and getting out of bed, or talking, or whatever. It's more an interruption of a particular level of sleep, and not something you or I could "see". And while it's not visible to us, it has a major impact on the body's ability to enter and maintain the necessary levels of sleep. Am I making any sense at all? LOL!

And another thing....Ethan's first sleep study, done when he was much younger, showed that he had apnea. BUT, the ENT we have locally felt that he would outgrow it. We had no reason to disbelieve that at the time. After reading that study, I felt perhaps we should pursue it more strongly and took him to the university hospital for his testing, and had the results interpreted by a neurologist who had a completely different thought about it than the first ENT. Since a neurologist is far better qualified to make recommendations about the impact of a poor night's sleep, we took the next step of having tonsils and adenoids removed by an ENT at the university hospital. It has definitely been a process.

Hannah's mom, thanks for the offer of help, we may take you up on it. I'm not really excited about all of the "stuff" associated with this, but I AM excited about the difference it seemed to make for Ethan.

[laurasnowbird]

You know, I thought I'd post the article here:

Sleep Apnea Confirmed Common in Children with Down Syndrome
Parents of children with Down syndrome weak to identify signs of sleep apnea

Monday, May 08, 2006

Children with Down syndrome are known to have a greater risk for obstructive sleep apnea. A new study by researchers at Cincinnati Children's Hospital Medical Center shows that few parents of children with Down syndrome are in tune with whether their child has obstructive sleep apnea.

The study appears in the April 17 issue of the Journal of the American Medical Association.

Obstructive sleep apnea syndrome is defined by sleep abnormalities that consist of complete and partial upper airway obstruction during sleep, a reduction in the amount of air entering the lungs with an abnormally high level of carbon dioxide in the blood, and oxygen loss.

Although obstructive sleep apnea is seen in only 0.7 to 2 percent of all children, a previous study based on 53 children and adults with Down syndrome between the ages of four weeks and 51 years old (an average of seven years old), found an incidence of sleep abnormalities as high as 100 percent in some cases. With this very high incidence in children, Sally R. Shott, MD, a pediatric otolaryngologist at Cincinnati Children's and principal investigator of the JAMA study, questioned whether all children with Down syndrome should be objectively evaluated for sleep abnormalities, obstructive sleep apnea, and at what age this evaluation should be done.

"Our results point to the need for objective testing for the presence of obstructive sleep apnea in children as young as three to four years old. Because there is a high incidence of sleep disorders in children with Down syndrome, clinical sleep studies are recommended even if the parents report no sleep problems in their child," Dr. Shott said.

Dr. Shott and her colleagues investigated the incidence of obstructive sleep apnea in 65 children with Down syndrome who were followed in a longitudinal, five-year study from the ages of two to five years old. The children in the study underwent a polysomnogram, or sleep study, between three and four years old. Researchers also examined the ability of parents to identify sleep abnormalities in their child.

They found that in general, parents of children with Down syndrome significantly underestimated the severity of their child's sleep disturbances. Overall, 69 percent of parents reported no sleep problems. Yet, 57 percent of children expressed abnormal sleep patterns. In the children with abnormal sleep study results, only 23 percent correctly predicted a problem. In a previous study, only 32 percent of parents suspected their child had obstructive sleep apnea, despite a 100 percent incidence of abnormal studies.

There is concern that an excessive number of arousals may lead to fragmented sleep and sleep deprivation. Excessive sleep arousals and sleep fragmentation have been linked to symptoms usually associated with sleep deprivation such as daytime sleepiness, lack of energy and lack of initiative.

Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome.

Because children with Down syndrome have an increased risk of sleep abnormalities, in 2001 the American Academy of Pediatrics recommend that primary care physicians question parents about possible sleep disorders when the children are five years old and older. However, no recommendations are made for specific testing. This study recommends objective testing by polysomnography, or sleep study, in all children with Down syndrome.

Cincinnati Children's is a 475-bed institution devoted to bringing the world the joy of healthier kids. Cincinnati Children's is dedicated to transforming the way health care is delivered by providing care that is timely, efficient, effective, family-centered, equitable and safe. It ranks third nationally among all pediatric centers in research grants from the National Institutes of Health. The Cincinnati Children's vision is to be the leader in improving child health.
Contact Information

Amy Caruso, 513-636-5637, [e-mail]

[Googsmom aka Jennifer]

Best wishes for you and Ethan. It's a little hard to get used to but it will happen. Hubby is on a CPAP too. I truely believe Brook will be there soon. She sleeps awful.

[tiffany]

We found out Leah has sleep apnea about a year ago. She was waking up 100 times an hour!!!! Although, I did not know it! She has severe sleep apnea. What tipped us off was her heart. She got pulmonary hypertension from the lack of oxygen. She was on oxygen at night for a year, and it has resolved itself, for now. She gained a ton of weight too. She loves her mask now and even asks for it when she is tired. Hugs to you! I know what you are going through! It will all work out! And just a side note.... Leah has been more verbal since using the c-pap. I guess when you dont sleep well, your brain cant transmit neurons, and speech suffers.

[sd112170]

I have problems with John all of the sudden. He wakes up just enough to fuss in his sleep. It is a problem for both of us. I am such a light sleeper. He has been waking up for about 4 wks now, 2 to 3 times a night. We had a study done when he was 2 mths old. On the APNEA monitor for a while with oxygen. Maybe I should consider another study. With all of that said, how do you get started with the study? Should I call the Ped?

[Googsmom aka Jennifer]

Yup, they ped most of the time needs to write a referal. Has John been seen by a ENT? If so i'd go there first. Brook will have her first ENT appt in Feb. The Dr at the Ds clinic refered her.

[wrblack]

Hmm, maybe Snowbird would like to move to Trenton. Usually I'd wonder why anyone would ever think of moving to Trenton. But mom of girl in our local support group didn't think she would ever use CPAP. Pulmonologist who works in adult sleep lab at local hospital, not one of the hot shot ped specialists at CHOP, worked with little girl. Got the right fitting pediatric mask. And now she's great with it.
We did get a little snow yesterday. And God it's cold enough right about now, warmed up to 11 degrees. But hope the Snowbird won't have to seriously consider moving to Trenton. -- Bob

[laurasnowbird]

Hey, 11 degrees is looking good to me right now.....it's only 7 degrees here with a windchill of 15 below.

Trenton......New Jersey? Hmmmm, would we be neighbors? LOL, that would be fun.

Had a job opportunity years ago in New Jersey. Made a trip out there, looked at homes and schools in Cherry Hill. I wasn't really excited about the potential move, big promotion, but little or no snow from what I was told. That was enough to make it a moot point for me. Sad, but true.

Wonder if that pulmonologist travels?

We actually did OK, the techs told me that there are many kids who never consent to keeping the mask on, let alone adding the air flow to the equation. Ethan did both, and actually slept, so I give him lots of credit! After seeing the amazing results for him, I am soo committed to making this work.

[Jessie]

You told that story so well I felt like I was right there with you in the room!!! Or, maybe I've just seen Brian hold onto Jason that way sooooo many times, it's very easy for me to envision the scene. LOL

I've long suspected that Jason may have sleep apnea, but Brian doesn't think he does because he seems to sleep like a rock. I'm not so convinced of that. One of these days I'll convince dad to let him get tested.

Glad to hear Ethan ended up doing so well.

Jessie

[CC]

Laura ~ Chris too was DX with sleep apnea (sp?), some times I wonder what my boy was NOT DX with KWIM LOL. K, have to LOL or I will COL.

Any who we just said NO to the CPAP (sp?) Honestly I just didn't have the energy to deal with it. Maybe I should re consider Hmmmm

WTG Ethan ;D

PLEASE keep us up on how this all goes for you guys at home, it might make us change our minds

CC ~