Help! Pediatric apnea

[Tmatthews80]

My son had severe sleep apnea, then had his adenoids removed. He has improved a lot, but we are still seeing and hearing what we think is apnea. He had a study in March that showed mild to moderate OSA and central apneas accompanied with hypopneas and periodic leg movements. He sounds like he's choking during sleep sometimes, we see paradoxical breathing, and multiple wakeups (sometimes multiple an hour). He is 20 months. We had another study with a new lab and doctor (we moved) mid-May. We went back to the doctor who told us he is completely cured...no apneas, hypopneas, or limb movements. Basically she told me that I was crazy, but that I could call the lady who scores the studies because the doctor doesn't watch them or score them. I called her today. She was very rude to me and told me she didn't think he ever had apnea at all because he slept beautifully. He did jerk awake in what im certain was an apnea, but of course they weren't recording yet. She said I need to learn that kids just make noises in their sleep. She said they use "state of the art equipment" even though they used FAR fewer sensors than the labs before. The sleep doctor told us to go to a neurologist and an ENT, but ultimately she feels that we have just created "bad habits". He still is a loud breather that tosses and turns ALL night. He throws himself around, wakes up screaming, and I firmly believe stops breathing. Am I just crazy? What do I even do from here? I don't want to subject him to a thousand more tests? We personally think it's definitely related to positions, but we can't figure out the rhyme or reason. I feel so helpless and confused and TIRED!

[Julie]

Is there a reason you haven't found (yesterday!) a new pediatrician? A pediatric pulmonologist? Neurologist? This is not something for a forum of strangers on the net, not something to ponder at leisure, but something that needs to be addressed right away with professionals. If your current MDs aren't 'working' then find others, but you don't speculate with children. He may in fact have a sleep problem, if not apnea (there are lots) and should be seen, whether or not you think it could be apnea.

[Janknitz]

Hold, on, Julie. Cool your jets! The OP is asking for support because the professionals are making her think she's crazy. As a mom of a kid with some physical disabilities, this is not an uncommon occurrence, and he or she doesn't need to be treated badly by us, too!!!

TMatthews, on the other hand, Julie is right in that you need to listen to your parental intuition and find another doctor who will listen to your concerns.

Meanwhile, perhaps it would help to videotape (or whatever they call that these days) a typical night for him so you can show the professionals what you are talking about. It sounds like for whatever reason, there were no occurrences the night of the sleep lab, but that does not mean that every night is always the same. Perhaps with one of those cameras like a "Go Pro" you can capture what has you so concerned.

I can totally sympathize. People with the genetic disorder my daughter and I share have severe leg pain--at night. Some kids wake up screaming in pain. But since it's the middle of the night, nobody drags their kids to the doctor's office at night when the pain occurs to get evaluated. So even though most of us parents have observed this, it's taken us literally DECADES to get medical professionals to recognize the pain is a problem and it's not typical "growing pains".

[Julie]

How on earth is it treating someone badly to advise that they get better medical help for their children? I understand that you've had particular problems and can relate, but most of us haven't, but are still struck by someone speculating about their child's health rather than getting new doctors. I can appreciate though that a young mother could be confused by bad advice, but her feelings right now are not the issue.

[Tmatthews80]

I am in no way trying to get people on the Internet to diagnose my son. Im just saying that the doctors are not being helpful. I can't seem to figure out where the best doctors are. We are waiting to see a neurologist for sure. We see a sleep
Med pulmonologist. I do love our pediatrician who is sending us to all these doctors and supporting us. It's just gotten to the point where we aren't getting any answers. Trust me, we are trying to get help. I was just thinking maybe someone here can help because maybe they have been through something similar or have advice on what else could be the issue.
I have taken a few videos. It's hard now because it doesn't happen reliably as it did before. I think maybe it has to do with how the day was or position or how tired he was.
I guess I am just wondering what else could it be? Im kind of tired of subjecting my poor son to all these sleep studies and scopes and tests when no doctor can agree on what is going on. It just seems so cloudy at this point what is goig on. Adding another doctor would probably be another opinion that I am guessing will contradict the last. If we are still seeing all the same symptoms what could it be? I wonder if he could be more sensitive because of his history so any pause in breathing, even brief, may wake him up. I don't know. Im not a doctor, but the doctors don't seem to be connecting the dots.
We are waiting to go to a neurologist, but our sleep doctor said she wanted him to do a 24 hour EEG which seems crazy to me. I don't really know what I want done. I just want some answers other than you suck at being a parent and let your kid cry it out.

[Julie]

Ok, the neurologist is a great idea, at least if they have any experience with sleep disorders and/or children. There is something called a sleep EEG, rather than a 24 hr one, and that's what I might ask my MD about, but if you're seeing the neuro. soon, they'd be the one to do it... and in fact I might even suggest that (waiting for it) to your own MD who seems to be trying, but maybe not quite in the ballpark.

[chunkyfrog]

The "jerking awake" actually could be a hypnic jerk. They are usually normal, but get that video done.
If something is not right, it cannot be dismissed as "crazy momma syndrome".
And give that li'l booger an extra hug--for me.

[Huh?]

Trust me, we are trying to get help. I was just thinking maybe someone here can help because maybe they have been through something similar or have advice on what else could be the issue.

Don't feel like you need to explain things to Julie. She's just a cranky old coot who sits in her apartment alone all day playing on the internet.

[Tmatthews80]

Our pediatrician is great. He is all about getting to the bottom of it, and he admits that he doesn't really know what to do other than send us to thwse other doctors for answers. i don't really know how much a pediatrician should know about all this tricky stuff.
How would I know the difference between a sleep EEG and a polysomnagram? I know that in previous sleep studies at a different lab, they used many more sensors and did much more monitoring.
Im wondering what an EEG would show? How do I find the best doctors for this stuff instead of going to only the closest place? I would really like to go to an ENT that specializes in malacia because I read back through our records and found that he has all 3 forms of malacia. I want to go somewhere that doctors can collaborate too instead of just being tossed around. The only place I have found was Boston, but im not sure if those are THE best people, and from what they said it would be something with lots of subsequent appointments that would probably require frequent travel to Boston which isn't realistic.


Would a hypic jerk be accompanied with waking up screaming? And happening multiple times an hour? I just was told everything to look for to determine if it was apnea, and it just seems like it's still
Happening. The study in March revealed apnea (central and obstructive and mixed) as well as periodic limb movements and hypopneas. How is he having the same symptoms, yet this sleep study shows none of that??? The one thing that makes me question is that the doc told me that different labs have different qualifications. This is the first study done at this lab, and quite frankly, the lady who interprets the studies was really rude. The sleep doctor just seems like a moron. We went to her because that was all our insurance would cover. We have since switched insurance and really just want to go to a doctor who can help because we aren't getting any answers

[Julie]

An EEG measures brain waves, a PSG is a total sleep study in which an EEG is usually done. But I think you might relax a bit if you at least knew a little about sleep problems - Google the terms you don't understand and get some idea of what they are so you won't be completely at the mercy of the doctors... e.g. Google something called 'night terrors' - sounds awful, but it isn't necessarily terrible, and have you looked up malacia? A lot of it is usually outgrown fairly young.

As far as medicine goes, Boston IS the best place, maybe on the planet, but I think your doctors may have got you all stirred up prematurely, and you probably would do best to wait for the neuro appt because you should get the best answers there. Sometimes doctors like to show off, for each other, without considering that they're scaring the patients silly!

[Tmatthews80]

I think you're prematurely assuming that I haven't researched the hell out of this. Yes, I have researched malacia. I also understand that he is at the age that some of this should be outgrown. Previously, it was discussed that we would do a surgery on his epiglottis, but we declined because we didn't feel comfortable with the doctor. I understand the term ️night terror. I am not uneducated, and we have been dealing with these sleep issues. I did think PSG revealed the same as an EEG which is why I was asking.

[Julie]

Well, great! We have no way of knowing what you have done so far, and many people come here barely knowing how to Google at all, plus your notes sound as if you are rather confused (understandably), but we want to help, so please take it easy too. I know though, if it were my child, I'd be a dervish too wanting to know more.

[Tmatthews80]

I honestly think at this point I have googled too much and been to too many doctors who don't really seem to know. Every doctor just sends us to the next doctor. No one really seems to know what the heck is going on. He has some other medical issues too, so we are CONSTANTLY at an appointment or at some doctor for something. At this point, I need a doctor to take our case and say ok here's what the plan is. I need someone to help
Me connect the dots. Google can only tell me so much, and im drowning trying to figure all this out

[Julie]

When is the neuro appt?

[Tmatthews80]

They can't get us in for 3 months. I am trying to find someone else that can help sooner. I've been calling to see if there are cancellations, and we are on the cancellation list.

I guess I'm just confused as to how they will help. It seems like they'll just want more testing which will just take more time. I guess I am just tired of going through all this so slowly (despite our absolute best efforts to get in asap with every doctor) and watching my child suffer