Penny went to see her pulmonologist on Monday. I was supposed to take her but Sunday night at 11:30 pm woke Husband up to confirm he could do it. As part of her visit the doctor had her undergo a chest X-ray. I'd guess this is her 8th chest x-ray.
The doctor and I played phone tag all day on Tuesday about the results. You know it is never good when they actually call you with results. We caught up on Thursday. I really like that we do most of the consult with this doctor by phone - I am calmer at my work desk, able to take notes and ask questions without trying to process by holding a toddler.
Penny's chest x-ray looks the same as when she was in the hospital with pneumonia after she aspirated. There is an "interstitial pattern" that indicates either fluid or some sort of "reordering" of her lungs. This is unusual because obviously there shouldn't have been any fluid.
Possible causes are:
(i) Aspirating while eating. We already did
one barium swallow test that was negative but we are going to do another to rule that out.
(ii) Aspirating while sleeping. If (i) is negative we will do a bronchioscope (sp?) and also put a monitor in her (similar to the
pH probe we did for her reflux) that determines if she has fluid coming up her esophagus and moving into her lungs. While she is under they are going to do an endoscopy - might as well check on her reflux.
(iii) If (i) and (ii) are negative, which he thinks will be, we have a new working theory - "chILD" = Children's Interstitial Lung Disease. That's a misnomer because it isn't a disease - its a group of disorders. Basically it is a catch all for any lung issue that they can't fit anywhere else. It is
very rare. Two symptoms Penny has include: failure to thrive and low O2. Tests will involve a chest catscan which they only do if (i) and (ii) are negative because of the high radiation and risk for cancer in the future as a result of CT scans isn't "non-negligible" and possibly a lung biopsy. Treatment options include steroids and of course continued O2.
But...the real answer is that she has to grow out of it and they are hopeful she will because
she is growing. After all that, including a possible diagnosis, you expected a different result? Husband and I are sorry she has to go through so many tests but we are also confident she will eventually grow out of this too and we appreciate what a great team of doctors she has on her side.
Interestingly, to turn this back to me, there is some evidence that 10-16% of cases are hereditary. I was a preemie with lower lung function I wonder if this means I may be more likely to have adult onset IDL which is supposed to be terrible. And of course I'm going to be vigilant about Spyder (this may push me to use formula for eating monitoring purposes but we'll see).
One other thing to mention is that this is not often diagnosed in infants and often misdiagnosed as asthma in older kids. Don't bother to Google this - it will drive you crazy. And whatever you do DON'T read about adult onset ILD.
Funny part was that Dr. Katz, Penny's gastroenteroligist sent her pulmonologist a note saying (to paraphrase) - "I'm all done with her, she's great on my end, now you have to fix her." But he's been pulled back in for the aspiration items. We Esqs are tough to shake.