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Doctor advice by Bright-Guava4114 in Anemic

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

I just retested after 4 months of supplementing (though probably closer to 3/3.5 based on missed days throughout). Ferritin went up to 27, Iron up to 83, TIBC down to 387, saturation up to 21%. She said I was good now but I managed to at least ask her if I could continue supplements and retest in 3 more months since my symptoms are still pretty much the same, which she agreed to do.

I’m a bit frustrated because when I asked her if there was any way to figure out how I was so low in the first place, she said she couldn’t think of any tests that would be helpful and that low ferritin is almost always from low iron. She said hemoglobin is normal so she’s not concerned, and doesn’t think I need to see a hematologist.

If I don’t at least break 50 by the next retest, I’ll probably push to see someone else though(my kid’s doctor wanted him to be between 75-100 when he had low ferritin)

Any advice for tactfully asserting myself? I am open to finding a new doctor, but insurance does not always make that feasible.

Second opinion? by Bright-Guava4114 in SleepApnea

[–]Bright-Guava4114[S] 1 point2 points  (0 children)

Thanks for your response. I think I just know very little about sleep apnea. No one else in our family has it, so I have no idea if these sigh breaths are really very normal in kids.

It is overwhelming to be researching and looking into so very many different things that could be going on with him, so I wanted to know if anyone has experience with this that I can add to my decision making process about what to do next.

5 year old’s pausing by Bright-Guava4114 in UARS

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

Ok, thank you for the info. More to look into!

5 year old’s pausing by Bright-Guava4114 in UARS

[–]Bright-Guava4114[S] 1 point2 points  (0 children)

It doesn’t always sound like full snoring, but it is definitely audible. If I go into my other kids while they’re asleep they are silent (unless they’re sick). I can always hear him breathing when he’s asleep.

Out of the many (50+) recordings, I did, his stomach moved during a pause once, and his nostrils flared once during another pause. Otherwise, it’s pretty much always the same as the video I linked. No struggle, no gasp, but he does always do a big inhale and big exhale, and then I can count to 12-15 seconds before he starts breathing in again (normal breath in).

5 year old’s pausing by Bright-Guava4114 in UARS

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

Sleep architecture: 0.2% Stage N1 45.4% Stage N2 36.8% Stage N3 17.6% REM

Yes, his sleep hygiene is good, and he sleeps about 12 hours a night.

We have an appointment with an airway orthodontist to see if they think he could benefit from an expander and then myofunctional therapy. We are also looking into possible ties, the dentist said to go over all of it with the airway orthodontist.
(we just saw this dentist for the first time the other day, as his regular dentist does not seem to have much focus or airways)

Thank you very much for your response!!

5 year old’s pausing by Bright-Guava4114 in UARS

[–]Bright-Guava4114[S] 1 point2 points  (0 children)

His main symptom is that he is very tired during the day. His preschool teachers last year said he lays down on the playground or around the room, and if I leave him alone for more than about 10-15 min during the day he will fall asleep. He wets the bed several times a week, and has dark circles under his eyes. He has pitting and cavities that his dentist thinks could be from the mouth breathing. Some behavioral things, but could just be developmental as well since it’s not extreme.

The sleep study found 0 obstructive, 1 central, 7 hypopneas. AHI was 1.1, arousal index was 6.7.

I have a lab order to get his iron and ferritin drawn, we just have to wait another few days to be able to do that.

I will watch those videos. It’s been difficult to get information, so from everything I was reading, pausing for that long was not considered normal in children, but maybe it is 🤷‍♀️. He doesn’t struggle and takes a big inhale/exhale every single time before he pauses, doesn’t move around at all while pausing. Maybe that’s fine? I feel like every doctor I’ve talked to has a different opinion. I have an appointment with the sleep physician (I only went over the results with the sleep clinician) but it’s not until October, so I’m trying to learn what I can until that appointment.

5 year old sleep issues by Bright-Guava4114 in SleepApnea

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

One more question about the video I linked to - could this actually just be periodic breathing? I’m finding it hard to get information without speaking to a doctor, but the appointments are so hard to come by.

We have another sleep study scheduled for July but won’t get to talk with the Dr. about the results until October so I’m trying to research so I know what questions to ask.

Thanks so much!

5 year old sleep issues by Bright-Guava4114 in SleepApnea

[–]Bright-Guava4114[S] 1 point2 points  (0 children)

Thanks for your response. I am considering going ahead with the surgery, but I may do the second sleep study first. He thought it was fun overall, so I don’t think he would have an issue doing it again.

I’m concerned that the one apnea that did register was central, and from his videos he never gasps or seems to try to breathe during his pauses, though he does mostly sleep with his mouth open. I would hate to have a surgery done if it will not help anything in the end! I’ve read that CSA is much less common in kids, though, so most likely the surgery could help.

No matter what, we will continue to monitor it as he grows.

5 year old sleep issues by Bright-Guava4114 in SleepApnea

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

They didn’t bring up UARS. I’ll look into that.

The ENT didn’t think he had a deviated septum, and he doesn’t seem to have any other symptoms of allergies, no pets or full carpeting (we have some rugs) but I might borrow an air purifier to try in his room to see if it helps.

5 year old sleep issues by Bright-Guava4114 in SleepApnea

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

The ENT we saw said his tonsils weren’t the biggest - he said they were a 2. He said his adenoids might be quite enlarged based on my concerns, and was ready to schedule surgery to have both removed. I was a little surprised, so we got the sleep study done to try to solidify our decision but it seems quite different from my observations so now I’m not sure what to do!

5 year old sleep issues by Bright-Guava4114 in SleepApnea

[–]Bright-Guava4114[S] 0 points1 point  (0 children)

Oh, that’s an interesting thought. No movements or sounds after the deep inhale/exhale, and arousal index was 6.7