Anyone Else Have a Child with Breathing Issues, but Unknown Cause?

Since it's happening at night, try to think about her routine and see if you can spot a cause. Does she take a bath right before bed? Maybe something in her soap or shampoo is affecting her. My son (who does have asthma but had problems even before his formal diagnosis) has definitely come out of the tub wheezing if we use a different soap, and often if he's showering somewhere away from home where we know other soaps are used.

Do you wash her pajamas or sheets in a different detergent? That could be the culprit. Do you use a certain cleaning product in her room? Is there a chance that there is mold in her room and she's allergic to that?

I was also going to suggest anxiety. It's possible that it's now a psychological reaction - since it happens every night, she expects it to happen and probably worries about it happening. As a result, it happens.

Try having her do deep, relaxing breaths (think yoga but without all the poses) and give her something calm to think about. Hopefully by relaxing, the symptoms will go away.

My daughter had 3 forms of Lyme disease. She was short of breath (just one of her symptoms) but passed numerous breathing/asthma tests. She even passed the Lyme white blood cell/antibody test. However, a red blood cell test showed the Lyme, finally. She was producing no antibodies that would show up on the routine Lyme test, since all the parasites were in her red blood cells. She also couldn't stand certain noises.

The Lyme doctor explained that lungs and inner ears are some of the warmest, moistest parts of our bodies, and the parasites were gathering there in huge numbers. (That's a very simplistic explanation, I know. His medical explanation was much more complex and detailed. But I hope you get the picture.) Lyme treatment relieved the shortness of breath and the sound sensitivity.

My daughter did not have the Lyme rash, by the way. But she definitely proved high positive on 3 forms of Lyme co-infectants (Babesia, Boriella and Bartonella). You might consult a Lyme Literate Medical Doctor. I found ours through www.lymenet.org. We had been through 4 years of horrors before we finally thought of Lyme and consulted him.

Oh, and he did confirm that the parasites are more active during the night, quite the opposite to our schedules. We noticed her symptoms were worse then.

There are 80 differentials for asthma (and each of those have about 50-100 differentials).

Which I know FAR to intimately.

And then there's "atypical asthma" which ISN'T asthma, but bronchiospasms are part of the symptom set.

((Whether or not a kid responds to albuterol off the bat, come to find, is fairly irrelavent. Kids often take 1-2 days on constant nebs to back off from a major asthma attack, and in some cases several weeks to a couple months. Been there, done that. Ugh. But ONCE the spasms and inflammation subside, and they get meds quickly, instead of hours or days later, the albuterol stomps on the bronchiospasms in seconds.))

But back to those differentials.

If this doesn't self resolve (nasty virus, or resistant bacterial infections, can take 2-6 months to totally subside).... Typically in 3 months if its not life threatening:

- Pulmonology
- Allergist
- Cardiology
- Rheumatology
- Neurology

Are the 5 major departments that you'll be getting pulmonary function tests, CTs or MRIs, Echocardiograms, blood panels, allergy panels, RAD testing, CF testing, ET CETERA. Seriously long lost of tests.

All 80 differentials cost about 3.5 - 8.5 million.

So they don't just order them.

Not when 1,000-50,000 will get a diagnosis in nearly all cases.

They'll go in order of most likely to least.

And that process takes 1-2 years.

Its SUPER common for asthma AND asthma-LIKE symptoms to kick up at night. For a whole lotta reasons. From allergies to temp change to position change to lower adrenaline levels, to

All my best,
Wheeee..... Pulmonology/ Medically complex kidMom

PS... Sometimes when talking about my kid, it sounds like he's on deaths door (actually, he is on far too frequent a basis). HOWEVER... With his meds & RT, he's an active athlete/great student/race you to the icecream! Normal kid... Not on supplemental o2 or a respirator. 99% normal life. Just with a lot of meds.

Did the ER and Pedi have her lie down during her exam? Did she have any symptoms then? If not, then it seems unlikely to be a medical problem that is just a medical problem--in other words.. it is associated with something else that goes on at bedtime. Not just lying down.
It could be anxiety. It could be something she is exposed to nightly at that time (soaps, something new in her room, mold in her bedroom or in the bathroom if she takes a bath right before bed, too much steam in the bathroom, etc). It could even be a combination---she is exposed to some trigger that brings on the initial feeling of breathing difficulties and THAT triggers the anxiety which makes it worse.

There are many things that can cause difficulty breathing, and not all difficulty breathing feels the same. It can feel like she can't get enough air in (like breathing through a very narrow straw), it can feel like there is no room to expand her lungs (like when you eat too much and your diaphragm pushes up into your lungs b/c of your stomach being so full), it can feel like her airway is closing, etc. But if she didn't have the issue while lying down at the doctor's office, I would think you could sort of rule out things like heart problems. Because that wouldn't just go away except for at bedtime. Every time she laid down, she would probably notice.

Does she eat just before bedtime? Does this happen if she lays down on the sofa during the afternoon?
Did anything traumatic happen to her just prior to her first beginning to have these episodes?
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After your added info, I would definitely ask for the workups regarding cardiac possibilities. Low O2 levels are not anxiety. I would pursue more testing for sure, and the Lyme (or other tick borne disease) suggestion was a good one.

Has she had a complete blood work up yet? The reason I ask is because I've been amazed at what they can test for and find out.

I agree with Riley about the asthma differentials and responding to albuterol taking days to a couple of months, I've seen it in my family.

I would be concerned that it is an undiagnosed problem with her lungs or heart. I know of someone who was sick, the parents thought she was over it, she had difficulty breathing, low oxygen levels, after tests she was found to have pericarditis, inflammation of the sac around the heart. Her symptoms were a low grade fever, difficulty breathing when she lay down, felt better when she sat up and leaned forward, and extreme fatigue.

I'd take my daughter back, ask for a full work up, even if it means seeing specialists. Ask them if they did a CBC, most times they don't. You want them to check for everything and anything, and if that brings nothing you ask for a referral for a child psychologist to help her deal with her anxiety, whatever the cause. Best wishes!

Time for a specialist. Start with a pediatric pulmonologist. Call your nearest ped. Hospital. Or find one in St. Louis.
Lots of good questions to ask about in your responses.

Try a diary, of sorts, that records her exposures and responses.

Did she by chance, inhale wrong or choke on something before this? It almost sounds like a foreign body causing an obstruction when she lays down. X-Rays are in order. Could be a kind of calapsing of an airway.

All these are out of the box answers. It could be just resistant airways. Time and treatments would win out.

Have you seen an allergist?
There could be a scent or lotion she is using at night that is causing the problem. There could be a food allergy that is causing stomach cramps.

When my son was younger he had that kind of episode one night. When he was laying on his back, he would take sharp breaths. When I held him upright against me, his breathing would be normal. We called 911, they came, said his oxygen was normal. Went to the hospital, they said they couldn't find a reason. Turns out it was a step in his bodies reaction to a food allergy.

Allergies come to mind, in particular, dust mites.. since you say it's when she lays down.... Also.. this is out of the blue... BUT.. with no coughing or wheezing, is there a chance she has a VERY deviated septum .. I imagine the doc may have checked her nose, but then again.... unless they are looking for something like that, sometimes even the obvious is missed..
it might be worth asking about..

good luck