Hello All.
I've been reading through the archives the past week and there is an amazing amount of information here.  It has been very helpful.
I wanted to introduce my son and have a few questions.
Will is 5yrs old and has had problems since he was 3 months old.
We had our most recent sleep study on the 19th of Dec, and the read on it is Severe Hypo ventilation secondary to Neuromuscular disorder, Mild Sleep Apnea (T&A was March of 2005), and possible seizures (Neuro just finished his read on that and we haven't heard for sure).  There are a few(13) Central apneas documented but not mentioned again in the report.  
The recommendation is to do BiPAP.
Ok, no problems there, we knew this was coming and have been trying to get him to cooperate for a sleep study since the summer so we could give this a try.  If anyone is interested I can give more information on Will, he's got everyone stumped and we've been told to not expect a name for what's all wrong with him  and just learn to treat his various symptoms.
So My questions are:
1.  For those doing CPAP/BiPAP how long did it take to get your child used to it? (Will's autistic so we know this could be rough)
2.  Will has a history of both Reflux and aspiration, and from what I've read we may not be able to do BiPAP because of the risks of aspiration, does anyone have any experience with this combination?
3.  We are being told right now it could take 4-8 weeks for approval from the insurance, we are considering trying to pay for the rental ourselves in the mean time, has anyone done this and how bad was it?
4.  Will currently sleeps for maybe 3 hrs at any one time, and his past 4 studies have shown he never gets into stage 3 or 4 sleep and spends at most 10% in REM.  In every ones experiences are we going to see a big difference, mainly in quantity of sleep?  Right now we have 3 people rotating nights with Will and we are all exhausted.
5.  Will is currently on O2 24/7 our sleep Dr seems to think we may be able to drop the O2 the majority of the time if we can keep Will's CO2 down and get him more restful sleep.  Has anyone had a child that was on O2 and then was able to come off because of sleep interventions?

Ok I know that's a lot so I'll stop there for now.  We have a follow up with the Dr on Monday, so we'll get more information then, but wanted to see what everyone thought here too.
Thank you for your time and help,
Sarah
You can see pictures of Will at;

www.caringbridge.org/co/williamrein

Hi Sarah.  I have to first say that I don't have a lot of answers to your questions.  However, my son had the T&A back in October and I still witness apnea episodes.  We just another sleep study a few days ago and are still waiting on results but the ENT suspects central apnea this time.  

What caught my eye was his history of reflux and aspiration.  My Emerson, 17 months old, also suffers from reflux (although silent) and aspiration.  I read on your website that you have to thicken his liquids and we just started doing that as well.  We also switched from Thick-It to Thicken-Up.  What kind do you use now?  Emerson's reflux and aspiration are due to his birth defect called esophageal atresia and tracheoesophageal fistula.  Basically, his esophagus didn't go all the way to his stomach and parts of it attached to his trachea.  We are just fortunate that he can eat by mouth as so many kids born with this birth defect cannot for several years.  Anyways, I'm not sure what the link is between reflux, aspiration, and apnea issues or if there even is one, but it's always nice to find someone else who has a similar situation.  

I hope you find the answers you are looking for and the insurance company hurries up with their approval.  Good luck!

Sara

P.S. - I enjoyed the different links from your website - thanks for sharing!

Sara,
Thanks for you reply.  We are using a product called Hydra-Aid.  It is a gel based thickener made with Xanthum gum.  So far it has been so much nicer than the Thick-It.  If I remember right the Thick-it and Thicken up are both Corn starch based.  So far this has been easier to mix, it has stayed more stable (doesn't settle or get clumpy), and Will seems to liek it better for whatever reason.  It also has 0 calories, which is good for us, because he gained a lot of weight when using Thick-It.
I know a little bit about TEFs for the longest time it was assumed that Will had to have a small one that just wasn't showing up on the tests they did.  After our 5th Bronch and still not seeing anything they decided that even though the swallow study didn't show true aspiration that's what must be happening.  We actually still have one Dr that swears there is a small TEF somewhere that we'll find some day ( he's thinking almost pinpoint kind of size very very small).  We'll see.  It sounds like Emerson is doing very well, you must have a very strong little guy and very good surgeons.  I hope he keeps doing so well.
One thing that stood out from your posts, was the continued Apnea after surgery.  We have been told that sometimes kids who have floppy airways have more problems after a T&A, because the tonsils especially can help hold the airway open even though it is also obstructing some.  Basically the airway flops to the level of the tonsils before surgery so you have a small opening, and then when you take them out that brace isn't there anymore so it flop even further.  We knew that was a risk with Will, but everyone thought it was worth it.  We have seen fewer infections after surgery, so that's good, but the breathing stuff is a little worse.    I am by no way an expert on this but it was the warning and information our Pulmonary Dr gave us before the T&A, of course the ENT completely disagreed.
I'll be looking for your results, i hope they give you the answers you need,
Thank you,
Sarah J

Wow!  I can't believe you are familiar with TEF's!!!  No one ever knows what I'm talking about.  Actually Emerson was born with the bottom part of the esophagus attached to his trachea (fistula) and the top part ended in a blind pouch.  That was repaired at 3 days old.  When he was around 6 months old, he coughed, choked, gagged, cried, and arched with every meal and bottle.  I insisted something was wrong but the nurses always said that was typical with TEF babies.  Finally, a barium swallow study (which I know you're familiar with) showed immediate aspiration, hence, another fistula.  Our surgeon assumed his first one had reattached itself to the trachea and grown back.  However, the bronchoscopy revealed a 2nd fistula up near his clavicle.  He said it was difficult to locate and was smaller than a pin hole.  It had more than likely been there since birth but was too small to detect originally but as he grew, so did the fistula.  So, your one doctor may be right in thinking there is a fistula somewhere in little Will.  Having 2 fistulas like Em did is the rarest form of EA/TEF there is.  The head surgeon at Vanderbilt Children's Hospital has been doing surgeries for 30 years and had never seen a case like his.  

We had no idea he was aspirating these days as he just randomly coughs, but again, that's normal for a child with tracheamalacia or a floppy trachea.  The SP told me if was probably due to him using a sippy cup now as opposed to a bottle.  There's less control over the fluid - but the thickening seems to work well for him and his appetite suddenly increased once we added the thickener.  

I had no idea about the floppy airways and tonsils connection.  No one ever told us that!  I do agree that the infections have decreased since having the T&A and he's no longer constantly congested.  Although it was very rough on all of us, it was worth it in the long run.  

Do you give Will breathing treatments?  We give Em Pulmicort every night and Xopenex as needed when he's got gunk in his chest.  He's on Prevacid 1x a day for the reflux.  Does Will eat by mouth at all or does he have a G-tube?

Sara

Sara,
We do use breathing medications for Will, but he does them by inhaler with a mask and chamber.  He hates/hated Nebs so much that we started the inhalers at about 18 months and doesn't fight anymore.  Will is on Flovent and Atrovent twice a day when healthy and every 6 hrs when sick, if we have to do them more than every 6 hrs we have to take him to his pulmonologist.  Will is in the like 3 % of kids who can not have any Albuterol in any form, so that includes Xopenex.  Very rarely kids with laryngeal/trachealmalacia can bronchospasm with the albuterol family.  The Drs didn't believe us that it made him worse until they did a Xopenx neb in the office and her turned blue dropped his sats and passed out.  Now we are told to list is as an allergy.  Oh well some Drs have to learn the hard way to listen to parents.
I think we are heading towards another Bronch so i may ask them to look again in case we are missing a really small TEF, can't hurt.  We ended up in the hospital for a total of 3 weeks with the T&A, so I know how hard it can be.  Will has a Gtube, and we had been doing night feeds to make up for what he wasn't getting at night, but were pretty sure he's started refluxing again so we've had to stop for awhile, Will eats by mouth but is fairly limited because of allergies.  He also has been choking more lately so he tends to not eat or drink much when he's like that.
I tend to write way too much, sorry if i overwhelm anyone.  It is really nice to find places with people who speak the same language.
Have a great evening,
Sarah J

hi Sarah,

 My son suffers from acute reflux and I bought a bed ( well its really a large shaped piece of foam!) from a us company that makes him sleep on a real slope. It has  helped his reflux and he sleeps much better. Perhaps its worth trying for your little man as you mentioned his reflux was back? Or if not do you prop his cot/bed up at the top. just a thought as I know little things can sometime make a big difference

Hi Sarah.  I've heard of another TEF parent who said albuterol treatments make their child worse also so you're not alone in that boat.  Unfortunately, I'm sure you had to find it out the hard way.  And it's even more frustrating when the doctors dismiss what you have to say about your own child!!  

When you say that he chokes, do you mean he gets food stuck in his esophagus or that it spills over to his airways? Emerson often chokes on foods if they're not cut up small enough or he puts too much in his mouth at once.  The food gets stuck at his repair site in his esophagus and he gets real raspy sounding because the buldge pushes on his floppy trachea.  He either has to work the food up by coughing or he'll try to yawn and make it go down.  When he was smaller and it happened more often, we were constantly turning him upside down and pounding on his back.  It's better now that he knows how to "fix it" himself.  

Good luck with the bronch.  Do you have a date for that yet?  If you want to e-mail me outside of this forum, my e-mail is smoomy@comcast.net.

Talk to you later,
Sara

hello and welcome
i have no real advise for u here im afraid but wanted to say hi and hope u sort things out and find all the info u can

good luck