BPI families - lung information that may be important

[francine]

Kim I have no idea what each child's redness is nor can I tell you over the internet what it really looks like - NOR do I have a camera that can pick it up for you to see. Just ask your doctor about staying aware of your kid's lungs. There are some other symptoms - like tiring out easily - especially after activity. This doctor said that once Maia's lungs were taking in more O2 that I'd see great changes in her behavior - her stamina - he gait and balance issues, etc. Kind of surprising but I'm going to watch over this with daily peak flow tests.

-francine

[LeeAnne]

Francine, thanks for your reply. I will definitely have this checked by a specialist. Isn't Adena's husband a pediatric pulmonologist? Since he works at Florida Hospital he's probably on our insurance and I've been wanting to get together with them anyway. Anyway, I'm so glad you posted this because now i don't feel paranoid about it.

In the mean time we will be praying for Maia, that she will be filled with the breath of life she so desperately needs and that any future surgeries for her arm will not be compromised.

[Karen Hillyer]

Hi Francine
thanks for thinking of us, he's had his inhaler today
NOT that I feel it makes any difference - but he isn't as croaky in his voice and he says he feels better,
Hah! he's 11 and the sun is shining here today, so he's off playing with his friends at the moment LOL
I'm lucky he is bright enough to know when to come home if he is poorly and he's only across the road so I can keep an eye on him.
I would love to take him to a Paediatric Pulmonolgist, but I am positive we don't have this speciality over here in the UK - that old language barrier again!
Karen

[Andrea]

Francine,

I was wondering if Maia had damage to the C4 nerve? I'm glad that you brought this to the communities attention! I will have to keep a watch on Alexis!

Thanks,

Andrea

[francine]

Lee Anne - yes Dr. Ajayi did his fellowship in pediatric pulmonology I believe. Tell Adena I say hi ok?

Karen - asthma is so on the rise here that these specialists are booming. This doctor's office used to be this one little office and now he's got offices everywhere and a dozen doctors working with him. It's scary to know that so many kids are affected by asthma. Glad to hear that Gavin is doing ok.

Andrea - Maia did not have anything with C4 diagnosed however it was obvious each time she got sick that there was definite lung weakness and now we have the proof. When I asked Dr. Nath about the connection between bpi and legs he said that it was because there is also spinal cord damage at the point where the injury has occured... so maybe there is damage above and below ? That's the only thing I can think of.

Maia woke up SO happy today. Her cheeks are a little less red and I just sense this inner feeling that "I feel a little better now" going on.

And now I have to educate everyone around her to know what to watch for and I'm trying to find a MINI peak flow meter so that she can keep it in her school bag or in a fanny pack over the summer.

I'm just so glad we found all this out.
-francine

[marymom]

Fran, whats the name of the test, is there a specific name of the test that they did for Maia? thanks~m

[francine]

Pulmonary function test - they did it many times - before and after medications.... it was done with a computer program...Maia had to blow the kite up in the air, or blow the pigs house down, or crash through a wall of bricks... she LOVED playing the "games".

I think that the scariest part for me is that Maia does NOT cough or wheeze and that I would never have known that she had this problem had I not questioned her cheeks. I am buying a peak flow meter for the house so we can check her daily.

-francine

[momofnickelman]

Fran, where do you buy a peak flow meter or is it a prescription? Thanks for sharing the information with everyone!

[francine]

I want to say that you shouldn't just go out and buy a peak flow meter.... see the doc, let him have a listen, to a pulmo test if he thinks you should, and THEN get the peak flow test from the doc so that he can teach you how to use it. (it has to be done a specific way in order for it to show valid results)