Breathe in, hold for 10-25 seconds...breathe out. Take a breath or two, and hold again. Repeat.
Initially, we were only noticing it every once in a while. One of us would hear the tell-tale squeak of her holding in a breath and slowly letting it seep out and say, "KayTar, breathe." and she would. Now, though, nearly every time I take notice of how she is breathing, it is in this pattern. I don't know if I was only noticing it intermittently at first because it was the school year and we weren't together so much, or if it really has increased in frequency...but it is getting close to 100% of the time, whether she knows I'm around or not. I've asked her about why she breathes like that and she says,
"Breathing all the time makes me too tired, so I just take a break."Sounds reasonable enough, except that it is super weird! I've spot checked her O2 sats for a few days and initially they seemed normal, 97-99, with a few drops to 94 that I thought were misreads, but since then I've seen her sats drop multiple times. She's dropped to 92 and stayed, 93-94, even down to 87 and 88. She seemed totally normal during the desats, so I don't know if all of the low numbers are misreads or what. The oximeter is reading fine on the rest of us (I've checked it against us, especially when it has showed low sats for her) and is pretty consistent and the wave form seems steady during these times, too. She's in the 99-97 zone much of the time, but with spot checks, I don't know how much of the story I'm getting or how much attention to pay to the lower numbers. She does seem fine, honestly, but part of me wonders if periodic low O2 could be contributing to the headaches she started having a few months back.
Her respiratory rate is quite low at times, though, because she spends most of each minute holding her breath in. Once she is asleep, her breathing patterns normalize, so it seems to be consciously controlled. I guess it could be a behavioral thing, but I just can't figure out why she would be choosing to hold her breath all the time if there isn't an underlying reason. I've tried it and it is quite uncomfortable. She doesn't even seem to notice she is doing it, though, unless I mention it. Yesterday I caught her breathing regularly once and asked her about it and she told me she just wasn't that tired, so she didn't need to take a break.
Her heart rate has also shown a bit of a range, the low has been 55-60 at night and up to 145-149 in the morning at rest, but overall most checks are in the normal range of 70-80 when asleep and 110-120 during the day at rest. When active (jogging in place for abut 15 seconds), her heart rate was up to 157. She's always had slightly variable vitals when we've been inpatient on monitors, so it isn't a huge surprise, but with the odd breathing pattern it is worth checking a little. A little strange breathing is one thing, which is why we kind of ignored it initially, but weird breathing because she is too tired to breathe properly that is negatively affecting her O2 sats is a little more concerning. Though, I can't say with certainty that it IS affecting her oxygen levels. This is the hard part of having an undiagnosed kid, there is no way to know what to expect or when to be concerned. When something strange comes up like this, I'm not quite sure who to take it to or what the appropriate course of action is!
The good news is...it doesn't seem to be slowing
her down!
****
Edited to add:
See? Wave form looks good.
Not sure about this one, wave form isn't as clean and the position of her hand may not be ideal.
Thoughts?
her down!
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Edited to add:
Thoughts?
10 comments:
When my asthma is bad I tend to hold my breath- both to try to get more air in, and also because it is so much work getting the air out. What if you checked her peak flow when she is breathing like that? Maybe she needs a hit of her inhaler?
She's a constant source of intrigue, isn't she?
How bizarre! It's definitely good that you're monitoring it and keeping an eye (or ear) on things. But you're definitely right..sure hasn't slowed her down a bit this summer!
An enigma for sure.
Kids do strange things, though, sometimes. One of mine had an eye tic for a few months that we never got to the bottom of. And one day, it just disappeared.
Jill: We've never done peak flow with her, but her lungs sound clear bilaterally and we aren't seeing coughing like she typically exhibits when her asthma flares. But it could be a change in her typical asthma patterns.
Slouchy: It IS hard to know what is simply weird kid stuff and what is a real concern. It is hard to walk that line with her, because she trends toward the atypical in worrisome ways at times.
Our kids who died both did weird things with breathing (that docs didn't get too worked up about when we first pointed it out, though). So when our youngest just started having the same kind of breathing like her sister had - shallow, lots of pauses, and almost you wondered if she was breathing at all - it was a big concern to us. She does it mostly in sleep, but sometimes awake. But it is very intermittent and we cannot figure out a pattern. She seems to be okay, and vitals are as you describe - may drop 5-6 on oximeter (so from 98 to 92, for example). But she really seems okay except the weird breathing. When we were at pulmonology again, she said it could be a dysautonomia thing, and then had her blood gas checked. The blood gas was normal. So maybe you can do that with kaytar to make sure that the breathing pattern isn't affecting oxygen/CO2 levels in the blood over time. It was reassuring to me and a pretty simple test (although the blood test was a finger poke, so lots of pushing to get the sample and was kind of sad). Honestly, I wish that they could just explain to us all what causes "weird" things in our kids - especially if those causes are not life-threatening because it could give us peace of mind. And if it is something to be more concerned about, definitely we need to know to address it the best we can. Sorry. I have a little empathy for the frustration of it all.
First off....new issues suck! There's no way around it. But I will say I hate finger pulse ox checks. Livs are always low even when wave forms seem ok, it has freaked many a doc out but I remind them they have to not use finger ones. We use a mossimo pulse ox with hospital style probes which are much more reliable. The second photo with the 55 pulse seems like not a good read imo. We look at both to make sure the o2 is reading accurately. Have her hand flat and lying on something like the pillow in the first and you do get better reads. Im sorry that this is cropping up though. Hope the doc has some good info.
that video is awesome! look at her go. I remember when she was just learning to walk! what long way she's come.
good luck with this latest mystery...
Could her asthma be bothering her, or taking on a new pattern. I know when I am flaring I often hesitate to breathe, because it's too hard, takes too much energy, causes my to bark/cough/bark/cough, etc.! I usually try to jump on the nebulizer and usually in the SUPER HOT or SUPER COLD weather carry my portable nebulizer with me. I also check my peak flows twice a day everyday and indicate on a scale of 0-5 how my symptoms are on each day. It helps me to see how things are, what meds I take, and what seems to be helping the most. My highest peak flow ever, as an adult was 350 (about 30 minutes after a breathing treatment); Xopenex 1.25. Usually I am 250-300! KayTar is a mystery. My doctor's tell me that too. How's BubTar? Take care!
(delurking)
I have cough variant asthma, and sometimes I'll have these flares where I don't cough, but it's exhausting to breathe. It's been a while since I've needed to keep a close watch on my pulse ox levels, but I could see that being the cause.
Since it seems to be under her control, it could just be a behavioral thing.
But, breathing issues are scary, so I am glad you are watching it.
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