April 5, 2011

Bummer CF Appointment

The doctor said Azer looked healthy and great. It's just those darn numbers.

He lost a whole pound. But, I suppose we can blame that on how much running we've been doing. Plus, he hasn't been eating but one meal a day. Lunch time is only a snack.

His FEV1 was only 78% today. After the doctor listened to him (his lungs sounded crackly and wheezy), the doc sent us back to do a breathing treatment. I don't remember the name of the medicine Azer inhaled, but it basically was a strong type of Albuterol. We did a second PFT test 10 minutes after that, and his FEV1 was 77%. So, clinically, there was no difference made by the medication.

The doctor said that even though his allergy tests did show he was allergic to Aspergillus and lots of other things, it wasn't high enough to make the doctor think Azer needs allergy shots. So, we are going to try Flovent three times a day, instead of twice a day.

I've always said Azer gets leg pains during exercise. Sometimes it seems like Gatorade helps, most of the time, it doesn't though. Sometimes when we run, Azer has such severe leg pain that he cries. It happened at his last baseball game. He was crying because his legs hurt that bad. Time and time again, I've asked the doctors and pediatricians. Nobody has a clue. The pediatricians wrote it off as grown pains, only because they couldn't say it was anything else. Our doctor said today that it was possible Azer has arthritis. Arthritis. That word freaks me out. The good news is, the doctor said Cystic Fibrosis related arthritis isn't known to cause degeneration of the joints. Ibuprofen is supposed to help a lot. So, I guess I should plan on giving him ibuprofen before any physical activity.

Otherwise, the doctor was very happy with Azer's overall appearance, and he wasn't too concerned about  Azer's noisy sounding lungs and weight loss. I wish I could say the same about myself!


BG said...

Sorry to hear things didn't go as you would have wished. Glad things weren't too bad either. Hope to see you Saturday!!

Seth Soria said...

Sorry that doesn't sound like the most positive appointment ever! Where is his PFT base-line?

Seth Soria said...

I know what you mean, sometimes I think of it as an hourglass losing its sand...
Seth's is mid 90's, but the funny thing is your son seems to have so much more energy and stamina. It's so interesting to me how that works.