Rookie question about FEV1 in children

[2005CFmom]

How do you keep track of this? First I know not to get consumed by the numbers, but I can't ignore them completely and may need to make a fuss if I don't feel my daughter is being treated properly by the doctors. My daughter (8 years) is newly diagnosed and has only had 3 lung function tests. The first 2 came back within normal range (that was all we were told and did not ask for the numbers). At our visit yesterday (we had a different doctor) they came back showing mild lung disease so I started asking about the numbers. He seemed to indicate the test came back about the same as they had been in the past, but he was going to give us copies of all of them before we left (it was our last visit at this clinic because of a change of insurance). Anyway her FEV1 went from 92% to 87% and her FVC went from 94% to 89%. My heart sank down to my feet when I saw the numbers and could not understand why the doctor did not seem concerned. So I kept on comparing all the numbers. It appears that her lung volume numbers actually did increase. Her FVC went from 1.40 to 1.44 and her FEV1 went from 1.28 to 1.31 but because of her weight gain the % went down because her predicted numbers increased.
So how do you keep track of the numbers? Have you experienced this and how does your childs cycle seem to go? It seems so hard since children are still growing and their target keeps increasing. Do you accept a drop in FEV1 percent as long as the lung volume stays the same or increases and just expect that lung function will increase as soon as lung growth catches up with body growth? Anyway, I am going to give it until the next appointment at her new clinic and hopefully the percentages will increase, but if not I think I might try to push for more aggressive treatment.

 

[JazzysMom]

It is overwhelming. The basics are that numbers will vary depending on overall health, tiredness & effort. The big concern when there is a drop in pfts when its accompanied by increased cough, change in amount or color of sputum & weight loss. These are obvious signs that something is brewing. The doctor might not have seemed concerned because everything else is going well & there is that change in predicted numbers. Like you have heard & are trying to remember that you cant get consumed by the numbers only. Many factors should be taken into account. I hope this eases your mind a bit!

 

[Emily65Roses]

Also, that's a small drop. If it were 90% to 80%, I'm sure they'd take more notice. Your child sounds like she's doing very well and that's probably why they didn't jump down her throat the test results. Keep in mind, it gets a lot worse later, so the docs like to hold out on the good meds until you really need them. Like they save them as a reserve for thr really powerful bugs. Since this drop isn't a big deal, they probably see no need to do anything drastic.

 

[2005CFmom]

Thanks for the replies. I've been reading some other posts too and I guess sometimes the PFT #'s don't actually reflect the true function of the lungs. Since she has only had 3 tests I now realize she may have just had a hard time doing the test correctly. Her lungs sounded clear and there has been no change otherwise in her health. So I won't be concerned about this drop, YET!
But I would consider a TRUE 5% drop in PFT's significant. Although even with this 5% drop she has good lung function for a CFer I don't plan on letting her give up 5% of her lung funtion easily. If we gave up 5% every 3 months she would lose 20% every year! We will fight this disease as hard as we can and hopefully she will have a long, happy life.

 

[Emily65Roses]

See, that's the problem. It's hard to tell when it's a true 5% drop or not. My PFTs somedays will be particularly high for me when I feel crappy... or much lower than I expected them to, because I feel pretty good. I don't usually put too much trust in PFTs myself. I go more by how I feel, what my limits are, etc.

 

[anonymous]

I think Luke ( or someone else) should be able to enlighten us on this.

I've been curious about this too - if lung volumes increase and there is a slow drop in other scores (because of parameters changing due to weight/height gain) -- is this a good thing? As I type this, I realize I'm not really sure what the lung volume score indicates.

 

[anonymous]

Some people's PFT percentages can fluctuate quite a bit. My PFTs fluctuated an awful lot when I was younger, from about 95% to 120%, and they didn't have much of a correlation to how well I actually was at the time. It was when they all of a sudden went down to 75-85% that something was done about it.

Also, I sat on the same weight for about five years before putting on 5kg in a relatively short period of time, so my percentages did go down a bit at that point. I've grown a lot taller also which probably affects my scores as well. My current doctor also pointed out that there are a few different ways to calculate the percentages and different clinics or machines can use different methods, so a slight discrepancy may not be something to worry about.

If you can get a sputum culture or blood test (white blood cell count etc), that might give a better indication of whether there is an infection lurking <img src="i/expressions/face-icon-small-smile.gif" border="0">

Emma, 21wcf, Australia
(wuffles, too lazy to login)

 

[EmilysMom]

Melisa and Emily are right. Don't put too much weight on the numbers. You'll make yourself crazy! There have been times over the years when Emily felt lousy and we went to the hospital for her clinic visit with all her stuff packed assuming she was staying because she felt and sounded lousy. Her PFTs were wonderful so they sent her home. There have been other times when she feels fine and her PFTs suck, so the numbers are not always accurate reflections. As Emily said, you have to go more on how you are feeling.
As Sara gets older, she and you will be able to judge better how things are going by how she is feeling and you'll be surprised at how accurate she is with her own predictions. The numbers are important, but don't put too much stock in them and get lost in the percentage of loss or gain.