Thursday, February 11, 2010

The Cutest Acronyms Usually Spell Trouble

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.

11 comments:

August's mom said...

Thinking of you guys...you're right...there is some stuff you just don't want to google! Sending big hugs your way...

Gretchen said...

Aw, honey, I'm so sorry that you, Penny, Husband, Ned, and your whole family have to go through this. Thinking good thoughts and hoping Penny keeps growing and kicks this disorder (or whatever it ends up being) in its you-know-what very soon!

ElizabethEK said...

Good luck. I will be thinking of you and your family. Penny is growing!! YEAH!

LauraC said...

I wish Dr House could walk into your life and have an a-ha moment that would provide all resolution and everyone would be healthy and happy with a magic pill. What a long long road you have been on. Thinking about you and your family.

Stacey said...

Now you've freaked me out with thinking I'm going to end up with ILD...did you have to mention the whole genetic and premature thing? I am impressed with your attitude and share the belief that Penny will grow out of it and be healthy and just as happy as she is now.

Nancy said...

*hugs* what a thing to have to go through!

Been thinking of you...and will continue to send "GROW!!!" thoughts to Penny :)

Donna said...

This makes me sad and happy at the same time. Sad that Penny has to go through all of this, but happy because it seems to me she might be finally seeing the end of the forest! This is the good aspect that she might actually be able to just grow out of it. Maybe you can pre-empt the CT scan until she does.

jungletwins said...

Can't that gorgeous girl of yours give you a break? Sounds like she's in great hands though, and it's wonderful that she's growing. I'm sure the growing will sort things out, as you already know. For now- hang in there, wonderwoman. Sending good vibes across two oceans (which only increases their power).

Goddess in Progress said...

Ugh, I'm so sorry you all have to go through this, Penny especially. Fingers crossed that this is something she will grow out of SOONER rather than later. Of course, I wish it was something she could just take meds for a week and have it be over. But still...

Leigh said...

I'm amazed at your great attitude! Seriously - you're an inspiration (and all I do is moan about how little sleep we're getting).

Sorry that you guys have to go through this - poor little Penny but hopefully all this is sorted out soon. I think she deserves a break.

Love that picture of Pen and Daddy - cuteness to the nth degree

Heather said...

So sorry that you're going through this. Glad to hear she is doing well though and that you believe she will grow out of this. Hang in there.