Question about FEV1 and PFT

[jenniferp]

I really wish I would have got a copy of this test, I had it in my hand and thought it was our copy, then the doc asked to see it and I forgot to get it back, or at least get a copy.
I took my step-son (12) to his CF appointment on Tuesday. They did the PFT test. He has been coughing a lot more than normal lately. Everytime he blew, toward the end he would start coughing.
Last year in August, his score was 113%, now I'm not sure if this is the FEV1 or PFT score??? (wish I had that paper)
At Tuesdays appointment they told me his lung function was down 20% and he scored a 60, but I don't know if this is the FEV1 or PFT score?? I'm just a little confused now.
Also, he has only gained one pound since last year. Weight is 81 lbs
Anyone experience this as a child??? Can this improve?? How long before we should expect these numbers to increase???
I'm just really worried about him.
He has been put on an oral antibiotic, they recommended he not change his TOBI which he does month on month off, and increased his enzymes to six pills with meals as opposed to five he was taking before.
Do you think he should be on IV antibiotics. I do trust the doctors, I'm probably over reacting. Just wanted some of your opinions.

 

[JazzysMom]

I know you are worried, but let me put your mind to ease a bit. We all have trouble times. It doesnt mean its permanent damage. Depending on the area you are living in, the weather change might be affecting him etc. If/when he has continuous decline or lack of improvement that you should really start to worry. This is a red light to stay on top of things, but not a definite indication that things are on a spiral & never ending cycle downward. If you trust the doctor then do so for now. When does he go back for another visit? At that time I would discuss changes in his treatment if there is no improvement. OR if he seems to get worse in other ways before the next visit.

 

[coltsfan715]

Hi there,

I wanted to offer some adivce from my experience with weight gain as a kid. I was in the 80% in height and 50% (if not lower) in weight until I hit 6th grade, barely gaining any weight from year to year. Then in the summer between 6th and 7th grade I gained about 20-30 pounds. I was eating a ton of those nasty protein bar things and drinking a ton of milk shakes (mixed with scandi shake). Then same thing I leveled off and didnt' gain any weight until I hit 9th grade. I was at about 5'6-5'7 and only weighed 100 lbs. Then after 9th grade I had a few months where I packed on weight and went to 125 lbs. The protein bars though nasty seemd to work for me when I was younger. My mom would give me a bar and have me eat it by bribing me with something that I wanted - food wise. The bars though nasty usually weren't big so I could eat them relatively quickly and get to the "good" food I wanted.

I don't know how your clinic does the PFTs and such .. all I know is what I have been told by the people at my clinic as to how the PFT results are done. The % rate matches up with what you should be if you were healthy - so for me I have 40% of the lung function of what a healthy (noCF) female 23-24, 108lbs and 5'6 should have. I may be wrong on that but that is what I was told when I ask about it. The docs in my office don't go by the % though they look at the actual numbers. I go by % cause it is easier to understand and remember. It is possible for those to go up and to level out and fluctuate through the years. It is hard to predict with anybody how their lung function will change over the years unfortunately.

I do hope your son starts doing/feeling better - and if all else call your docs office and see if they can mail you a copy of the test if you want to have it in front of you. You'd probably just have to fax or mail them a signed release.

Lindsey

 

[LouLou]

You should call and ask them to mail a copy to you. The pft # isn't really a figure it's a name of a test. Often people talk about FVC (volume of overall air that comes out in a blow) and FEV1 (volume of air that comes out in 1st second - this measures small airways). hope this helps!

 

[lovingBenandCambree]

I don't want to frighten you or anything, this is definitely not meaning that his tests won't come up, but in our clinic the rule of thumb is that if the numbers (of your PFTS being, the FEV1 or FVC(total volume) is down 10% then it is time for IV meds, and hospitilazation.. EVery clinic is different. I would definitely make sure to go back in 2 weeks or after the Oral meds are out and see how he is doing and go from there. Hope this helps. Good luck! I know it is scary and frustrating.

 

[thelizardqueen]

Before I went in hospital, my FEV1 was 69%. Then when I had been in for a good week and a half, I went for PFTs first thing in the morning, before my physio, before my inhalers, before I had had a chance to cough anything up. My PFTs had gone down to 60%. My doctors weren't too concerned because it could have been the factors I just mentioned. It could also be the machine you are using. If its different then the one you usually use, then that can account for a change in numbers. And like Melissa said, it could be many factors, where you live, allergies, pets, time of day, etc. If you see a continual decline, that is when I would be worried.

 

[CFHockeyMom]

According to our Dr., PFT results on kids are still very inconsistent. They look for overall trends until they have confidence in the childs ability to perform the test correctly visit after visit.

The fact that your son has a cough at the end of the test is probably "something" and oral antibiotics are a step in the right direction. I wouldn't worry too much. Sounds like just a routine CF flare up. Just keep an eye on him.

Our Dr. said it can take as long as 3 weeks post antibiotics to get back to "normal".

 

[NoExcuses]

The latest trend is to be aggressive with antibiotics. At the 1st sign of a problem, get a CFer on IV meds.

That being said, there is so much that goes into the decision to treat with antibiotics. But it sounds like he wasn't doing too well if he was coughing a lot lately and the PFT's are reflecting this.

I'll tell you this - at his age, when I got sick, I bounced back without antibiotics. And I've had PA since I was 1 year old. No clue why, but I always just got better. So I'm not necessarily advocating IV's cuz I dont' know the kid, but it definitely sounds like something is going on.

On the other hand, we all have our bad days - but it sounds like his cough is consistantly bad over time, not just one day.

I had PFT's early May and they went down from 97% to 85%. My doc called it a "plummet." BUt I was just feeling weird that day. A little wheezy and I hadn't taken my Allegra in some days. I wasn't feeling bad though - no increase in cough.

Today I went to get PFT's again and I was back up at 99%.

So again, there are SO MANY factors that go into IV antibiotics. But I woudl take a strong look because IV's = stopping bacteria growth = preserving lung function.

And preserving lung function has to be a top priority for all CFers.

 

[anonymous]

Thank you all so much for your responses.
I also wanted to ask if any of you had ever tried salt water? The doctor said it is a relatively new treatment used in the neb machine. They don't have it at our pharmacie so they are mailing it to us.
Just wondering if it helped.

 

[NoExcuses]

Hypertonic salene has helped me a bunch.

 

[anonymous]

Thanks Amy,
Yes, that's what's it called. My brain is a complete fog lately.
Can't believe I spelled pharmacy wrong.lol
I'm glad to hear it helped you, I hope he has the same response.

 

[catboogie]

113% is probably the FEV (volume) percentage; the 60 is probably his FEV1 -- these are two different numbers. PFT isn't really a score as much as a general name for the tests they take that give them the FEV1 and FVC numbers.

FVC= lung volume
FEV1= amount of air blown out in one second

i always ask the people who do my PFTs to print me out an extra copy. they don't mind!

hope this helps.

laura