Pediatric OSA/bronchoscopy

Hi!
My 14mo was just diagnosed with very severe OSA. ENT has already done a scope in the office with him awake that revealed no significant issues with tonsils or adenoids. He's had no ear infections or strep. The sleep study determined very severe apnea that our sleep doctor and ENT are wanting obviously determine the cause of. They want to schedule a bronchoscopy to look further down I guess? I'm waiting on a call for that to be scheduled. Anyone have any experience with this? He mentioned that if there was a small procedure they could do during the time he was sedated for the exam, they'd do it and the ENT would talk to me more that day. He made an off hand comment that there may be a surgery after that. What other surgery would they do? What could they be looking for?

Tmatt80 wrote:The sleep study determined very severe apnea

Do you have any more information about the study results? AHI? Oxygen levels? RDI?

Tmatt80 wrote:What other surgery would they do?

It sounds like this could not be determined until the doctors know the cause of the sleep apnea. Maybe your child's case has the doctor puzzled.

Tmatt80 wrote:What could they be looking for?

Here is a patient brochure on bronchoscopy - https://www.google.com/url?sa=t&rct=j&q ... oFNtOnNESQ

I doubt you will find any good answers in our forum until your doctor has more information.

So sorry you and your child are experiencing this. The unknown can be terribly frightening. Maybe it turns out to be something fairly simple that is easily corrected. I am praying for this.

Pediatric procedures and results and diagnoses can be quite different from adult ones, so I'd take anything I read about some things with a grain of caution and not assume anything until further notice. Is your son being treated at a major teaching centre (hopefully pediatric) vs e.g. a smaller place with only 1-2 specialists (thinking about asking for other opinions)?

They said his score was a 23, but the thing in his nose kept coming out so the doctor watched the study and said it was even more than that but th others were when the nose thing wasn't working. His blood ox went down into the 50s.
They think it may be a recessed jaw? The ENT seemed a bit puzzled since she was expecting to see huge tonsils and adenoids. I'm hoping its a simple fix. There's only 2 sleep doctors here. There's a neurologist and a pulmonology doctor. Ours is the pulmonology sleep med doctor. I like him a lot, and he seems very compassionate and knowledgable. I'm just wondering what they could be expecting to find.

Of course, I cannot diagnose your son's case. But, I will make some general comments about sleep apnea.

Tmatt80 wrote:They think it may be a recessed jaw?

That is the most common cause of obstructive sleep apnea (OSA). OSA is the predominant variety of sleep apnea. More specifically, the cause of OSA is an underdeveloped jaw resulting from some combination of several problems that modern man is plagued with. An underdeveloped jaw crowds the soft palate and tongue which then become more subject to blocking the airway when muscles relax during sleep.

Underdeveloped jaws make orthodontists rich by causing crowded and crooked teeth. Go to a mirror and count the number of teeth in your mouth. If you count less than 32, your jaw is underdeveloped and did not allow all the teeth to erupt.

I had two wisdom teeth that had to be extracted years ago. The other two wisdom teeth are impacted. So for me, 28 teeth = obstructive sleep apnea.

When a child is old enough for orthodontic appliances, an "apnea-enlightened" orthodontist can do a lot with palate and jaw expanders. Many times enough can be done that the patient avoids OSA - and ends up with 30 or 32 adult teeth.

But the question becomes how is that child treated in the meantime.

Ours is the pulmonology sleep med doctor. I like him a lot, and he seems very compassionate and knowledgable.

That is important, and I am glad to hear it.

The scope they did should have showed whether the upper airway was narrowed because of the recessed jaw. You don't need a bronchoscopy for that. So they must be looking for something else?

I would not wait until the day of the bronchoscopy procedure for them to tell me what the "small procedure" is that they may do during the bronchoscopy. It's your job as the parent to give informed consent, and it can't be "informed" consent unless you understand what it is they propose to do. On the day of the procedure there will be other concerns, you won't have time to think about and research the proposed procedure to give truly informed consent. Sometimes those "small procedures" have lifelong side effects that aren't necessarily better than his current situation. So in your shoes, I would call the doctor for an explanation of the potential "small procedure" well before the actual day of the bronchoscopy.

Does your child have other medical issues? What prompted the sleep study in the first place?

When there is a recessed jaw it's interesting to note if this is a familial trait. If it's not, and there are other symptoms (such as low muscle tone), then you wonder if something else is going on like a genetic condition to cause such significant apnea in a little one. Not to scare you, but if your mom radar is ringing, it's OK to push for a more thorough evaluation of your child, not just ENT.

It is good that this is being caught early.
--Not good that there is something to catch, but your child should benefit
from whatever solutions are chosen for what they find.

Thanks for all the replies. He does have a recessed jaw to some extent. He doesn't have but 8 teeth yet though, so I can't tell. The scope they did at the ENT she said would show a severe recessed jaw. At that point they were just throwing out ideas for what may be the cause since the tonsils and adenoids seemed fine. I'm going to call the ENT I think because he said she would be the one discussing any procedure that would be done. I'm just wondering what they could be looking for? I think there is some concern about some low muscle tone issues since he isn't walking or talking yet, but obviously that could mean something or be fine. The sleep doctor told me to try and keep
Him on his side to sleep. I've been doing that, but he still seems to have apneas on his side. I called him to see what to do. His secretary said he may want to get us in with occupational therapy for that. Ugh!
They did the sleep study because he HS always been SUPER fussy and won't sleep. Some nights he wakes up every 20-30 mins for hours. The longest he will sleep is 2-3 hours if we are lucky. He awakens terrified and upset. Our doc said it was night terrors brought on by stress. I did some reading which showed that as a symptom of apnea. We always thought he had reflux bc he sounded like he would gag in his sleep and then we thought he had gas because he would shriek in his sleep. I took videos to our Ped of him snoring and demanded a referral. She said to take more videos before the appt with sleep med. I did. When he got me in and saw the videos he thought it was severe but ENT had already done a scope that showed no issue with tonsils or adenoids and wanted to see the study results as well. She was the one who told me she wanted to do a bronchoscopy if his apnea was anything more than Mild-which it is :/

I'm surprised with sats that low they didn't put him on CPAP until the bronchoscopy can be done and they have a better idea of what's going on. It's not necessarily easy to deal with CPAP on an baby, but those desats are scary low.

My daughter and I share a genetic disorder that can cause a recessed jaw, narrow, arched palate, narrow airway, low muscle tone, among other things. Sleep apnea is common (I have it, my daughter does not). There are other genetic disorders that can have these symptoms, too. That's why you may want to ask for a genetic consultation given the apnea, possibly low tone, and a bit behind in milestones (although the sleep apnea alone could account for that). The fact that he is otherwise healthy means that if he does turn out to have any kind of such disorder, it is likely very mild.

My daughter's low muscle tone made her on the later side of normal for developmental milestones. She walked at 16 months, and really didn't talk until she was 2. But I will reassure you she is fine--a very good honors student and fully independent. Her expression of the genetic syndrome is very mild.

For her receded jaw and narrow palate she had extensive orthodontia to broaden her palate and bring her lower jaw forward. They were able to do this without extracting any teeth, and without surgery. She has a beautiful, broad smile now and she was scoped to confirm that her airway is wide enough for good air exchange. So these things can be dealt with.

I am a little concerned about it being a low muscle tone issue, but he hasn't had any other growth issues or anything. He did have a tongue tie that caused a lot of issues and went undiagnosed which is also related to a high palate, but the dentist said his palate was ok. The doctor said it was really bad that his saturation dropped that low, but he had mentioned before how hard it is to get cpap on a child because it takes weeks of getting them eased into it so to speak. I'm wondering if since the bronchoscopy will be relatively soon if he wanted to see if there's a surgical fix before starting all that. Also I have been pushing and pushing for earlier appointments. They've worked me in once, got me in on a cancellation for the study, and had to call and give results over the phone because they're so busy.
I finally got him to sleep on his stomach last night, but he was snoring and having the same issues. This leads me to believe maybe it isn't his jaw if it's still happening on his tummy? I don't know. I'm just going crazy speculating.
I got a copy of his medical records today. Every appointment I had told them about sleep. At his 9 month checkup it says he's sleeping 30 minute increments and diagnosis was colic. I just wish so badly that I had known about this sooner. I kept hearing "oh babies don't sleep!" I made an appt for him at 2 months because he wasn't sleeping. That should have been a red flag to someone! Anyways....now I know I guess!
Thanks for all the replies. It's helpful just to chat

I'll say it again because I think the issue is serious and should be dealt with asap. Get him to a teaching hospital with more than 1-2 specialists. Do not let anyone operate and (if it were my child) postpone bronchoscopy or other major invasive procedure til you get opinions from others. To a baby, bronchoscopy is relatively invasive whether or not any cutting is done (tho' biopsies are very often taken at b-scopy) and is usually done looking for e.g. lung cancer, not apnea. You must get more input, and quickly, from pulmonologists, neurologists, cardiothoracic doctors trained in apnea, before letting him undergo anything where you are. Apnea may be just a symptom of other, potentially serious problems that may not be apparent or diagnosable where you are, well meaning as everyone might be.

Tmatt80 wrote: Also I have been pushing and pushing for earlier appointments. They've worked me in once, got me in on a cancellation for the study,

Good for you! You are doing what you can for your child.

Tmatt80 wrote:Every appointment I had told them about sleep. At his 9 month checkup it says he's sleeping 30 minute increments and diagnosis was colic. I just wish so badly that I had known about this sooner. I kept hearing "oh babies don't sleep!" I made an appt for him at 2 months because he wasn't sleeping. That should have been a red flag to someone! Anyways....now I know I guess!

Yes, also in adults, the medical profession has had a blind spot for sleep apnea.

All the best to you and the family,

One thing I have learned as a parent of a child with special needs is that the professional community tends to think of "horses not zebras", and our kids are zebras. Sleep issues, for example, are common, and so are anxious parents, so it takes a lot of pushing for us to get across that something is beyond the norm. My daughter was a "toe walker" and I kept being told it was "normal" until one day it wasn't anymore. She has had to endure years of casting, leg braces, and physical therapy that might have been less if it was caught earlier. I wanted to believe them when they told me it was "normal" so perhaps I didn't push as much as I should (we didn't know about the genetic thing yet).

It disturbs me that your doctor told you it's "too hard" to do CPAP on a baby. I'm sure it IS hard on a little one you can't reason with. But so is that severe apnea. His apnea is so bad that you may put the mask on him and he may finally have a comfortable sleep, perhaps for the first time in his life. Again, it may be really difficult to get him to a point where he will sleep at all with a CPAP mask. But I keep thinking about that developing brain trying to survive on 50% oxygen-worth a try.

Certainly if they don't find anything that instantly "cures" his apnea during the bronchoscope it may be time to be a tiger mom and ROAR until he gets CPAP.

I think Julie's suggestion of a second opinion from a teaching hospital with a pediatric sleep clinic is a good idea we flew all the way across the country for a diagnosis and still regularly drive hours in various directions to see the best specialists for my daughter's needs. This is hard financially, emotionally, and time-wise but it's your child and he's worth it.

My heart goes out to you as you're going to have to do all this with your own sleep deprivation on top of it. Be kind to yourself and trust your mom instincts. You truly do know best.

I do think im going to call ENT and our sleep doctor on Monday. Unfortunately with our insurance, it took a lot of work to get him in with this doctor. There are only two sleep doctors hwre-one pulmonology doctor and one neurology doctor.
I don't think that it's too hard to get it on a baby necessarily, but the way I interpreted it was that it's not just as simple as putting him on a machine because it could take a while to even get him used to the mask. I talked to another mother who said they were on month 4 of just working and getting her comfortable with the mask which seems a bit much, but I have no idea how on earth I could get him to go to sleep with that on. Also he has always nursed to sleep and nursed for comfort in the middle of the night, so that's another hurdle with just getting him on a machine.
The ENT recommended the bronchoscopy and our sleep doctor agreed. Everything im reading about it is sort of confusing, but I also talked to someone who had a bronchoscopy that revealed a cyst blocking her airway, so that was an easy fix of sorts. Id really like to know if it is a muscle tone issue.
I really like this doctor, but obviously it doesn't hurt to get a second opinion. Unfortunately, we only get so many second opinions insurance wise and we have used them up. How would I go about finding another hospital or dealing with insurance?

Sometimes the best doctors are creeps and bastards... so what? You want what's best for your child, not someone 'nice'... it's not important!

Call your insce. co and tell them you want more options... what's available financially?

And do some research... "best pediatric hospital in ... wheverever" and consider what you can afford in terms of travel, if nothing else. Your baby's life may depend on it and just because some local yokel's nice, does not mean they have a clue... you need to be proactive, not just reactive.