Pediatric OSA/bronchoscopy

I've been doing a lot of reading today that is kind of worrying me. It seems like all the surgical options are very serious surgeries with very low success rate. It just seems like it's not worth it especially on a child. Why would a doctor recommend this? My husband and I dischssed that we will be calling on Monday to see what the course of action is. If they are looking to find something that can be fixed surgically, we are not interested in consenting for surgery. At the very least we would want a second opinion or some compelling evidence to change our minds. If we were considering surgery, we are thinking of waiting at least a year until we can communicate with him a bit more and understand what he's feeling. I guess at this point, after talking to you all, I'm really concerned that cpap isn't being considered. Yes, it sucks, but if it could help him for certain why not? That's my
Question for the doctors on Monday. Am I wrong in thinking that all the surgical
Options are pretty major?

1) you need to sign up and log in - that way people can send you messages privately.

2) there are a few members with very young kids on cpap on the site. They may prefer to message you privately. Most have been quite successful.

There are a lot more comfort aids then the medical people know about and there is lots of information available from the machine IF THEY DON'T GIVE YOU A BRICK! That is your next fight - getting a good machine with data about AHI and leak rates. They will try to make money off you by giving you a cheap version - the insurance pays the same for a crappy brick and a good data capable machine ( the difference to the seller is $15 in profit). Educate yourself and go into the DME (Durable Medical Equipment) store with your army boots on and loaded for bear.

When treating a child, you may find the conservative approach to be most popular.
Second opinions are golden; especially when treating a child.
Speak to as many REAL experts as you need to. (Local, nearby)
All we can offer is our best wishes and what little experience we may have;
much of which may not be recent.

[*]I'll log in and get an account now. I guess my worry is the only other person here that could give a second opinion is a neurologist. I don't even know if he could help, but I'm going to see about asking. This whole thing is so frustrating!

You don't want a 2nd opinion where you are - but you don't seem to understand that...

I don't really appreciate you treating me like that. What you don't seem to understand is our insurance will not cover a second opinion out of region if there is someone here who can give me one-and they may not even cover that. I have to find out more on Monday. Oh and the doctors we are seeing are not just local "yokels" might I add. I'm trying to get the best care for my son, and I came here for help not to be treated like I'm stupid for trying to figure this out. Not everyone can just travel wherever to get care and pay out of pocket for it. I want what's best, but we also have to be financially realistic.

I'm sorry. I did inquire about that earlier, but didn't see a response... and I guess I'm not used to having to think that way about medical care (up here). It just strikes me as horrendous that you do and I shouldn't have said what I did.

It has taken us a year of er visits and pushing for answers for us to finally be here. Our doctor didn't even want to give us the referral to a sleep doctor, but with some pushing from my husband she finally did. It's very frustrating to feel like we just can't take off and get good care. We are also military, which adds more to the issue because military doctors aren't always the best. Right now there was no military doctor who specializes in this in the area, so they had to send us off post. If we try to get another referral, we may have to go to a military doc maybe at Walter Reed. My husband has a couple friends he's reaching out to for advice because we really can't afford to just take off to whatever doctor and pay for it ourselves I wish we could because I would do it in a heartbeat.

Tmatt,

The types of OSA surgeries ADULTS get are often unsuccessful at "curing" OSA. But children are a different matter. A child with enlarged tonsils, for example, has a good chance of being cured of OSA by removing tonsils, for adults the outcome is less successful because there are often multiple factors. Some of the typical adult surgeries are not things they would do on a child anyway and often don't work on adults. So anything said here about surgery on adults does not apply to your situation, anti-surgery stuff here that does not apply to children. Please take it with a grain of salt.

There ARE options to get additional care and opinions for your son (I'd be happy to tell you more in a pm) but I get that it's overwhelming right now. Sounds like you do trust the ENT and pulmonologist, but you just need a better understanding of their proposed course of action. Keep asking questions to help you make decisions about his care.

Hang in there. Nobody knows better than YOU about your son and his needs. You are doing a fine job. You didn't let them ignore his issues--and you are getting him help.

Janknitz wrote:Nobody knows better than YOU about your son and his needs. You are doing a fine job. You didn't let them ignore his issues--and you are getting him help.

+1

Thank you all! We were ok with the idea of a tonsillectomy or adenoid removal, but I'm not to keen on a major surgery. I do think I just need to know more because everything I head about pediatric OSA and apnea seems to be fixed with tonsils and adenoids being removed. Our ENT and pulmo doc don't think adenoids and tonsils are the issue-I was in the office when they did the scope, and im pretty comfortable with what they're showing me vs what oversized tonsils and adenoids look like. I'm going to log in tonihht and set up my account. I've been waiting to have a moment to sit down at my computer

I'm official!

Tmatt80 wrote:I'm official!

WELCOME!!!!

I am SO tired. This is so frustrating. After sleeping 30 min intervals (he still wakes at least every 2-3 hours and has his whole life....which the doc was shocked he even slept that much) all night, my son woke up at 2:30am. He stayed up til 5am then slept til 6:20am. He did take a nap in the car, but now we are on our third hour of bedtime. It's exhausting. I called to get more info today. Turns out the ENT is out of town for two weeks, and nothing is in our file about this procedure so her nurse really couldn't help me. The pulmo doc receptionist called and said the bronchoscopy can't be scheduled until January 12 which just seems like an eternity away. I told her we were frustrated and annoyed. The pulmo doc is out of town, but they left him a note to call me to explain the procedure more. He had told me to try to get my son sleeping on his side or tummy. He's still having apneas no matter how he sleeps. The receptionist said the doc will probably want him in occupational therapy. This just really upset me. I asked her why we weren't being talked to about a machine. She didn't know but put another note in.
My son's growth is also nothing to brag about which is another concern. Our pediatrician today (the same one who said no way he could have apnea and I demanded a referral) now told me I shouldn't coddle a child with a medical condition like him (interesting how you go from no way he could have it to now he has a medical condition). I asked if his speech delays could
Be related to apnea & she told me absolutely not uhhh! I'm just over this. I'm tired !

Tmatt80 wrote:Our pediatrician today (the same one who said no way he could have apnea and I demanded a referral) now told me I shouldn't coddle a child with a medical condition like him (interesting how you go from no way he could have it to now he has a medical condition). I asked if his speech delays could
Be related to apnea & she told me absolutely not uhhh! I'm just over this.

In every field of human endeavor, there is some incompetence. But, it seems so unfair when you are up against it with your child's health. I am so sorry. Prayers that relief will come soon for you and your child.