We went back to OKC today... Got the rest of the numbers form last weeks Pulmonary Function Test... Thanks to the help of RunSickboyRun, I think I got it this time.... Thanks Ronnie... (but please correct me if I am wrong..)
FVC ( Forced Vital Capacity ) Predicted 1.23 Lane 1.08 Lane's FVC=88%
FEV1 ( Forced Expired Volume in 1 Second ) Predicted 1.08 Lane .83 Lane's FEV1=77%
FEV1/FVC (Combined) Predicted 92 Lane 77 Lane's FEV1/FVC = 84%
Based on this last PFT we qualified to do a trial (must have greater or = to FEV1 75%) for a new drug Denufosol Tetrasodium Inhalation Solution. (which might improve the body's ability to clear secretions out of the lungs. I will discuss this further at a later time, we are first finishing our Enzyme study (and I am curious to get our fecal fat test results). Although Lane was not diagnosed until he was 4, I know he had Pancreatic Insufficiency since birth... Of course I reported it to the doctors on several occasions but I reported it as diarrhea... So I am curious to see his results on both types of enzymes.
I mention the Denufosol trial because we would be able to closely learn more about the PFTs, allowing Lane to have allot of guidance over a years time on how to properly perform these tests. Age 5 is a common age to start PFTs, but by being so young it takes a little time to get the most accurate readings as possible... so it is a good opportunity now for him to learn from the get go.. and he loves shooting that Rocket to the Moon...
The Denufosol Trial sounds like a really neat drug... Is anyone doing this trial???
Also curious to talk with anyone about sinus problems in child, Lane has had allot of what we called sleep apnea, (pre Diagnosis) but basically he is snoring and choking in his sleep, due to blockage. Curious about other young children...
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You're right on with your report of the PFTs! Awesome numbers! Also, remember not to compare those numbers with other older CFers and think that they will only go down from where he is...Here's my nearest comparative: 10/16/87: FVC 87% FEV1 77% I was 7 years old. Here's my PFT at 14: 12/12/94: FVC 108% FEV1 111%. I look forward to Lane kicking my butt in the numbers department. Just keep him active and on his treatments and he will do just that!
ReplyDeleteRonnie
You can see my full PFT history at my blog under "My Cystic Fibrosis"
ronnie's right... i found my son's numbers only got better as he got older. i have always found that the techs that kind of "walk him through it"/cheer him on are able to get better results from him, even now, at 15.
ReplyDeleteso my guy had sinus surgery at 5, and it was the best decision we ever made, i think. it was a huge success and he hasn't had to have another since. he does a saline/tobi rinse daily, which really seems to help. i make the saline solution, and once it cools, i add an ampule of tobi to the bottle.
good luck to you! if you have any questions, let me know. we've been doing this for almost 16 years now. ronnie is right, activity is the key. my guy swims on the hs varsity team and skis. swimming has been particularly good for him.