Seeking help/information

[sonofnothing]

Hello CPAP community. I'm not really finding much information on SOAS on the internet http://www.ncbi.nlm.nih.gov/pubmed/23019966 Maybe it's just that uncommon, or rare a condition. Both my cousin's recently departed wife and his daughter were born with this condition, and resulted in tracheostomies during infancy. They seemed to deal with it just fine, and the child, now 6, still has a regular in house nurse to assist with her condition. But, as serious as it is, her mother, 28, was found dead this morning, as a result from falling asleep without hooking up to her breathing machine.

Now, I know I'm pretty ignorant to the whole apnea condition in general, never read up on it much, but I'm seeking answers for McKenna. I found a blog post about tracheostomy, saying it "is 100% successful in curing sleep apnea. (http://www.sleepguide.com/profiles/blog ... vere-sleep) I wholeheartedly disagree with the term and logic, "cure". It is an answer, but it's like a pill, just masking the deadly symptoms. The root of this whole evil is at the neurological level, am I wrong? Is there just not enough money in research for people that will die in their sleep if not connected to a machine that will breathe for them? Are there any chances of manipulating the brain to actually cure this? Marijuana helped Charlotte Figi and Jayden David go from hundreds of seizures a day, to zero, overnight. Cannabinoids within the plant helped rewire their brains. Is this purely a muscular issue in the tongue which cannot be cured neurologically, or is this the brain not firing the synapses which tell the diaphragm muscle to pump the lungs with air?


Sorry for the many questions, and perhaps my ignorance. Any advice, literature, etc would be greatly appreciated.

[chunkyfrog]

Obstructive sleep apnea (OSA) is generally considered a physical problem, due to being caused by throat/jaw structure,
excess soft tissue in the airway , or poor muscle tone in that area, among other causes.
Apnea due to neurological situations is generally referred to as "central apnea", (CSA)
which may be affected by CNS substances, either positively or negatively, more often the latter.
The most common disorder is obstructive apnea, which does NOT have a neurological cause.
Her doctor/sleep study should disclose which kind she has, and she has the vent at night--correct?
Marijuana is not likely to be any help unless central apnea is seizure related, and seizures are reduced by it.

[Julie]

Hi, very sorry to hear of your loss - so sad that it couldn't be prevented.

Your link is about obstructive apnea, which is not the same thing as central (or clear airway) apnea, which is the neurological branch of apnea. Obstructive apnea occurs when people's airway is narrowed either by anatomy (genetics), by pressure from neck obesity or by one's tongue falling backward and blocking the airway. Central apnea is about your brain forgetting to breathe altogether, so obstruction may or may not be relevant - there's something called complex apnea in which there is obstruction, but also a large central factor, and to help you understand more we'd have to know which of the 3 types McKenna was actually diagnosed with. A neurologist would be more likely to deal with central (or complex) apnea, a pulmonologist or other MD trained in sleep medicine might deal with obstructive apnea. Is it possible for you to get hold of results from a sleep study or was one ever done?

As CF has said, traches are not usually done any more except in extreme cases, but Cpap machines are now used. There are different types however, depending on which version of OSA you have.

[chunkyfrog]

Sorry, I had noted (and removed) that a trach is not done that much any more,
but for an infant needing to be on a ventilator, it might have been needed.
What country are you in? This might make a difference in how she was treated at birth.

[sonofnothing]

I will find out exactly the diagnosis, but from my memory, my cousin Eddie has always said that their "brains stop sending signals to breathe at night", thus the trach and the machine which breathes for them. Neither are overweight, and both had the operations when they were infants, as I mentioned.

[sonofnothing]

Were in the USA. The deceased came from a pretty wealthy family in Westchester NY, so I'd like to believe they got the best treatment available. The little one is only 6, and it's troubling imagining this happening toher. Something happened with the mobile version ofof hisite and sitesND e nd

And itsit's reformsttoall eformatting all ofomy my texttext.

WTF?

[Julie]

Can't help with the reformatting, but it seems there were no tests done, unless you're aware of any recent ones. Unfortunately, there is yet no magic answer for central apnea, and no 'cure' even for the obstructive (or complex) kind, only ongoing treatment. New things are being tried every day, but the gold standard is still Cpap. The thing is, I think you'd have to discuss machines, etc. with her doctors because once she has the trach in (as she does) whether or not she's in a position to try other things like Cpap is something only her doctors could answer. Of course trachs can be closed, but then presuming testing shows that she still has central apnea, she'd have to go onto a machine every night to sleep like those of us (not me) who have C(entral)SA, though of course would not need the nurse any longer. The machine looks like a Cpap, but the algorithms, timing, pressure settings are different.

[sonofnothing]

There were tests done, if she was fitted with a trach as an infant, for sure. If she falls asleep in the back seat of the car, she could die. On long trips, they'd hook her up just in case, because we all get sleepy in the car. I just wish there was something else that could be done, on a neurological level. If someone's brain isn't sending the right signals to breathe when one goes to sleep, how can't we yet make that happen?

I gotta admit, your signatures are pretty funny. I've been on hundreds of message boards, and have seen peoples computer stats, garage stats, motor stats, music studio stats, and now I've seen people happily boasting about their CPAP machine and hoses lol. It is darling.

[Julie]

Something is bugging me - apart from whatever testing was done when she was a baby, if she hasn't had more recent (within ?? 5 yrs) testing, then I would definitely suggest she have a new one (even if her doctor says there's no point - many of us have many issues with doctors ), because things have changed quite quickly in the 'community' over even 10 yrs, and what might have seemed - to her doctors then - a dire case of CSA, might today not necessarily look quite so dire with newer testing equipment and newer Cpap equipment. I don't know who told you she could die in the back of a car, but people here with CSA, while they do need their machines overnight, don't necessarily die every time a catnap overtakes them! It does seem a bit dramatic!

If her particular CSA is exceptional, excessive, very severe, etc... maybe things need to go on as they are, but... what if they aren't and don't? I would most definitely look for at least new, second opinions now from neurologists trained in sleep medicine before deciding she's doomed to a life of nurses, etc.

Our sig. lines are there so all can see what we're working with, which helps very much when they want to advise.

[Krelvin]

I gotta admit, your signatures are pretty funny. I've been on hundreds of message boards, and have seen peoples computer stats, garage stats, motor stats, music studio stats, and now I've seen people happily boasting about their CPAP machine and hoses lol. It is darling.

It is a CPAP support forum, that info is needed.

[sonofnothing]

No I understand that, it's just so foreign to me. So does anyone have any links to research by neurologists of any kind? I was hoping there was more push for a cure, not treatment.

[Julie]

There is no cure as of yet... just isn't. However, there are ways to make her life easier and I kinda wish you'd addressed the ideas I mentioned re getting more up to date opinions... OSA/Cpap has moved very quickly technically in the past few years and you should at least look into getting new opinions, results, etc... because the whole nurse thing just seems way too much to live with and many people here have CSA and deal with it using certain machines... no nurses.

[PoolQ]

Hello CPAP community. I'm not really finding much information on SOAS on the internet http://www.ncbi.nlm.nih.gov/pubmed/23019966 Maybe it's just that uncommon, or rare a condition. Both my cousin's recently departed wife and his daughter were born with this condition, and resulted in tracheostomies during infancy. They seemed to deal with it just fine, and the child, now 6, still has a regular in house nurse to assist with her condition. But, as serious as it is, her mother, 28, was found dead this morning, as a result from falling asleep without hooking up to her breathing machine.

Now, I know I'm pretty ignorant to the whole apnea condition in general, never read up on it much, but I'm seeking answers for McKenna. I found a blog post about tracheostomy, saying it "is 100% successful in curing sleep apnea. (http://www.sleepguide.com/profiles/blog ... vere-sleep) I wholeheartedly disagree with the term and logic, "cure". It is an answer, but it's like a pill, just masking the deadly symptoms. The root of this whole evil is at the neurological level, am I wrong? Is there just not enough money in research for people that will die in their sleep if not connected to a machine that will breathe for them? Are there any chances of manipulating the brain to actually cure this? Marijuana helped Charlotte Figi and Jayden David go from hundreds of seizures a day, to zero, overnight. Cannabinoids within the plant helped rewire their brains. Is this purely a muscular issue in the tongue which cannot be cured neurologically, or is this the brain not firing the synapses which tell the diaphragm muscle to pump the lungs with air?


Sorry for the many questions, and perhaps my ignorance. Any advice, literature, etc would be greatly appreciated.

This might be an interesting thread, viewtopic/t106840/CPAP-too-much-to-hand ... stead.html

[yaconsult]

This might be an interesting thread, viewtopic/t106840/CPAP-too-much-to-hand ... stead.html

That is a thread I started about a treatment for obstructive apnea, but our poster is talking about central apnea - where the brain is not sending the signals to the muscles to breathe. I have been on a ventilator and it breathes for you, even if you are in a coma or brain-dead. They are also used for keeping the organs alive in organ donors. It's a completely different use case.

[PoolQ]

It is a device that can be implanted and effect breathing. Right now it is configured for OA, could it be adapted for CA perhaps? Detect the missing breath and trigger the diaphragm. Not something a user could do, but a researcher, perhaps.
He was asking for research for a "cure", there are many "IF's" involved with this, but again perhaps of interest to look into this path. A pacemaker detects a missing pulse from the brain to the heart and triggers the heart muscle, Could this be adapted to detect the missing signal to breathe and have enough energy to trigger the diaphragm to inflate the lungs?

Perhaps it's already in research someplace.