Central Sleep Apnea Questions

Hello to all. I have been haunting the boards for a while and have even made a few friends here. I am finally at the point that I need to post.

I have a four year old boy with Central Sleep Apnea. He has had it since birth and has never been put on a CPAP or VPAP due to the fact that he is 100% Central and he is so young. They thought that he would outgrow it and he hasn't. We have been monitoring him with an oximeter for the past year and he just had his yearly sleep study Monday night. I just got a call from the Neurologist today and the apneas were worse this year and now they want to have him go in for an oxygen study to try a low dose of oxygen at night and see how his body tolerates it. He has low oxygen saturation when he has an apnea episode and they do not like that he is still desaturating.

I am curious as to how many of you with Central Sleep Apnea are using oxygen therapy either with a VPAP/CPAP or just oxygen on it's own. Any recommendations would be appreciated. Thank you.

L.
Mother of three angels, one of whom forgets to breathe.

Ussualy a chain type of cpap is used for this that initiates a breath when u stop breathing. Since he is young I have no idea if he qualifies. Since the doctors are taking a different method of approach an s/t machine may not work for him yet
I wish him good luck

Momofthree, my heart goes out to you. A number of people on here use oxygen therapy with their xPAPs and I bet someone will be by shortly.

Linda

What is a 'chain' type of Cpap Starone?

Thank you for your replies,

I am not sure what you are referring to when you said, "chain type of cpap is used for this that initiates a breath when u stop breathing" I have been told that since his apneas are 100% Central that the CPAP will not work. I have heard of VPAP working with the Central Apneas but he is less than 40 lbs right now and they are not intended in use for children of his size. The doctors have always told me that "he should out grow it" and now that he has "officially" proved that he has not out grown it we get to see what they will do next.

The low blood oxygen has been a concern of mine for quite some time and now that they are looking to do a study with him on oxygen I am curious as to what will come of it all.

Again, thank you for your replies. I appreciate it!

L. Mother of three angels, one of whom forgets to breathe!

momofthree, I am so sorry to hear you and your son face this particular problem. Oxygen is an old approach to trying to address central apneas. Essentially by adding some oxygen the doctors attempt to lift his O2 blood saturation (SAO2) to an acceptable level.

You might want to ask his neurologist about the use of an adaptive servo-ventilation (ASV) unit.

Here is a previous topic with some pointers on Central Apneas and ASV units (these are Rested Gal's Links on Central Apnea):

viewtopic.php?p=22702

The following study helps explain how ASV (adaptive Servo-Ventilation) works:

Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... l.pdf+html

But here is the "rub". I do not know if ASV units have been approved for use to control central sleep apnea in children. You might want to print the article and take it to discuss with his neurologist. He might want to refer your son to a specialist and a sleep lab that can titrate him with an ASV unit. But as I note, I do not know if the ASV units have FDA approval for use with children.

My sister has been hospitalized because of his sleeping and breathing disorder and diagnosed as sleep apnea. Now, she is finally at home but she has already an in-home oxygen for her comfortable breathing though it is very tough to have it by your side but she has no choice.

momofthree, sorry I don't have info to answer your questions, but I will pray for your son and your family as you deal with this. I'll this to my bedtime prayers list....that's all I can think of to do. Hang in there momofthree! God Bless You!

4 years old and has csa?man i am so sad about that,he is only starting in this world....

Bump.

This is a very important question and I hope there is lots more discussion into this topic. I happen to know MomofThree and she is an AMAZING mom and she needs all the input we can muster! She has to get up multiple times a night when her child's alarm goes off so that she can get him breathing. She gets very little rest herself and yet she tirelessly advocates for her children and searches endlessly for some kind of answers.

I hope someone here can give her something to go on that will help. Awesome discussion so far! Keep it up!'

Jen

Thank you all for your info again, and a special thanks to Jen... your friendship and encouragement have meant so much to me!

More info for those that are interested:

Central Sleep Apnea since birth
Low blood oxygen when he has apneas (has dropped as low as 52%)
Inter Cranial Pressure
Issues with the detoxification system in his body
High Glycine in his urine
Low Iron
Extremely low Ferritin
Very low Iron Saturation (Has been on Ferrous Sulfate for a year now and Ferritin and Saturation levels are still low)
Dense Granular Deficiency of the Red Blood Cell (also known as a Delta Storage Pool Disease)
Borderline VonWildebrand's Syndrome (a blood clotting disorder - was just retested this week)

Had a blood draw in March which landed him in the hospital overnight due to a "possible vaso vagal" effect that required two hours on oxygen to regain his color and three hours to regain cognitivity. He was kept overnight due to the Central Sleep Apnea history.

The beginning of the year he had a Pediatrician, DO, and a Neurologist. Now since the "vaso vagal effect" he has seen a Cardiologist, an Endocrinologist, a Hematologist, and next week we go to the Geneticist (with no genetic testing coverage).

He is my little angel and such a blessing but we would love to figure out what is going on! I have not slept well in four years due to the fact that I take care of him, worth it, but hard on me. Any info that you have would be appreciated.

Also for those of you who are on oxygen - can you recommend an oxygen concentrator incase they want him on oxygen all night? We currently have the tanks at home for emergency use and do not have a concentrator. Any recommendations would be appreciated.

Thanks to all!

L. Mother of three angels, one of whom forgets to breathe!

Julie wrote:What is a 'chain' type of Cpap Starone?

I mean certain


My phone sometimes auto corrects randomly

momofthree wrote:Hello to all. I have been haunting the boards for a while and have even made a few friends here. I am finally at the point that I need to post.

I have a four year old boy with Central Sleep Apnea. He has had it since birth and has never been put on a CPAP or VPAP due to the fact that he is 100% Central and he is so young. They thought that he would outgrow it and he hasn't. We have been monitoring him with an oximeter for the past year and he just had his yearly sleep study Monday night. I just got a call from the Neurologist today and the apneas were worse this year and now they want to have him go in for an oxygen study to try a low dose of oxygen at night and see how his body tolerates it. He has low oxygen saturation when he has an apnea episode and they do not like that he is still desaturating.

I am curious as to how many of you with Central Sleep Apnea are using oxygen therapy either with a VPAP/CPAP or just oxygen on it's own. Any recommendations would be appreciated. Thank you.

L.
Mother of three angels, one of whom forgets to breathe.

Heya momofthree. I am an RPSGT out of Colorado and I have to tell ya- stick with your Neurologist. For the most part they are right. People do tend to grow out of Central Apnea but unfortunately it is a Neurological problem and there is a whole host of things that can cause it. For the most part it is caused by a disagreement between how much oxygen is in the blood due to the amount of c02 in the blood. From congestive heart failure to neurological disease, the problem could literally be anywhere. The process of acquiring, processing and transporting oxygen in the brain is so complicated that it is going to take a while to figure out exactly who is dropping the ball and how they can correct it. The chances of him growing out of it are still pretty high. Stick with your doctors and keep on top of this. The fact that he has come as far as he has is a really good sign.

JohnBFisher wrote:momofthree, I am so sorry to hear you and your son face this particular problem. Oxygen is an old approach to trying to address central apneas. Essentially by adding some oxygen the doctors attempt to lift his O2 blood saturation (SAO2) to an acceptable level.

You might want to ask his neurologist about the use of an adaptive servo-ventilation (ASV) unit.

Here is a previous topic with some pointers on Central Apneas and ASV units (these are Rested Gal's Links on Central Apnea):

viewtopic.php?p=22702

The following study helps explain how ASV (adaptive Servo-Ventilation) works:

Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... l.pdf+html

But here is the "rub". I do not know if ASV units have been approved for use to control central sleep apnea in children. You might want to print the article and take it to discuss with his neurologist. He might want to refer your son to a specialist and a sleep lab that can titrate him with an ASV unit. But as I note, I do not know if the ASV units have FDA approval for use with children.

Auto Servo Ventilators are crap and cure nothing. They were designed to correct 'Complex Sleep Apnea' which is french for 'Donno howto fix patient'. They are basically auto-titrator bipaps with three pressures instead of two. There is no way they are going to fix a true central that wasn't caused by a doctor overtitrating his patient.

Calist wrote:

...
Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... l.pdf+html
...

Auto Servo Ventilators are crap and cure nothing. They were designed to correct 'Complex Sleep Apnea' which is french for 'Donno howto fix patient'. They are basically auto-titrator bipaps with three pressures instead of two. There is no way they are going to fix a true central that wasn't caused by a doctor overtitrating his patient.

Well, aren't we special? I see you add initials "RPSGT" after your name. Well I'll toss some initials behind my name: Sporadic OPCA, Possible MSA. Clinially proven CSA.

I would HIGHLY recommend you actually READ the article I provided. In particular, I draw your attention to the ASV effectivness diagram, which I provide below. Using carefully calibrated polysomnoraphy, the writers of that article note that ASV is the most effective tool for periodic breathing as well as Central Apneas. This is not opinion. Nor is this the only study. Other studies confirm it. This study was just the first and has a very effective diagram to illustrate the DATA from the study - not the opinion of the researchers.



The entire article outlines the diagram more, but it clearly shows that ASV is FAR more effective at reducing problems than other therapies.

Why do I make a big deal about this? It was the very thought that central apneas are not a big deal that led to some of my current health problems. I had central sleep apnea for YEARS before I found a neurologist who decided to help me address it. The years without effective treatment led to unmanaged (in spite of a boat load of medicine) high blood pressure. Combine that with ibuprofen use to battle the daily headaches and voila! Chronic Kindey Disease (Stage 3) is the DIRECT result of failing to take Central Sleep Apneas seriously.

Please do NOT state such opinions unless you have facts to back them up. There are consequences to our words and actions. Unfortunately, it is not you that will face that consequence.

Now back to our regularly scheduled programs ...