PFT's are down for no real reason

[amber682]

He My almost 8 YO son's PFT's have been down for the last couple of months, from in the 120's to around 100%. He is not having any symptoms of illness except for an occassional cold, and is not culturing anything new (he cultures PA or steno from time to time). The doctor put him on antibitoics and we went back in 3 weeks, still low. He changed him fro Tobi to Cayston and we went back in 4 weeks, still low. Now he is on levaquin and orapred and we go back this Thursday, if it is still low he will be admitted for a PICC. We are going to stop by ENT first and have them scope his nose, then head over to pulmonary. We have been on sick plan this entire time as well. He currently does albuterol, flovent, pulmozyme, zithro, cayston, prevacid, creon, vitamax, periactin. He does vest, huffs, sometimes we throw in the acapella. He doesn't have any cough or stuffiness or wheezing or anything.

Anyone have a similar experience? I'm a little afraid we won't be able to get that 20% back

 

[ajlindsley]

Hi: Have they done an IgE level to check for ABPA? That is one thing that can cause pfts to lower and not respond to antibiotic treatment. Also, has he had a CT scan or a bronchoscopy? Hope he feels better soon. Amy

 

[amber682]

They have not done an IgE check, I will ask about it on Thursday. He had a CT scan 2 years ago and nothing since, so I already planned on asking about that if the numbers aren't up.

 

[amber682]

if it was ABPA, wouldn't his cultures show aspergillis?

 

[Aboveallislove]

My son is too young to do pft's yet, but I'm just wondering, if he is still at 100% of expected, whether the decline from 120% is a concern? I understand that it is a a large decline but wonder if being above 100% was something that is normal to maintain for anyone?

 

[amber682]

The doctor said that 100% is good, but it's concerning that there was such a big drop, especially without showing any symptoms.

 

[JENNYC]

That's what Abby's dr's always told me, is that the goal is to always get her back to her base line...no matter what that number is. Good luck, I pray that they can find out what is causing the decline.

 

[fly30]

My 8yr olds pfts dropped from about 114 to 100 as well. No real reason as to why? No sickness or infection or bugs. Docs said it could be due to her weight being so low. We have always been o the 5th centile and only just got to the 10th, still very low but better than before. So yes, lower weight or no weight gain between appointments can lower pfts.
Also, we are hardly on any meds.....we do creon, pulmozyme, losec, and periactin and cpt once a day. That is it!

 

[amber682]

fly, I don;t know what losec is, but does your DD do any inhlaed corticosteroids? Maybe she has an asthma component to her CF like my kids do. It might bring her pfts up. My kids' doctor is always pushing for their weight-to-height to be 75%, they say people with better weight have better lung function. My kids tend to hang around 50%

 

[Melissa75]

Love,
Normal is 80-120% because there is variation in organ size and elasticity even at the same height, gender and age. So a downward change IS a negative because it represents an increase in obstruction/restriction relative to previous function. That said, starting higher IS reassuring.
From the math perspective, a 20-point drop from 120% is only a loss of 17% or 1/6 function, whereas a 20-point drop from 80% is a loss of 25% or 1/4 function.
Someone please chime in if I'm off on this...

 

[welshwitch]

Good idea to check his nose! When I was a kid nasal polyps would totally drag me down and affect my respiratory system--I had so much blockage the docs were amazed I was even breathing thru my nose! Hope you can get those #s back up soon.

 

[fly30]

Hi Amber, losec is usually prescribed to patients with reflux. But, in our case her docs give it to her to lower the acidity levels in her stomach so that the enzymes are absorbed better.
no, we don't take any other inhaled meds besides the pulmo. The docs have never thought it may be asthma,, maybe just a bit of allergy but that's it. No real reason to lose lung function, beside being low in weight. Even though they fluctuate the docs here don't seem overly concerned about the changes. Not sure what to think..........I, kinda worried now after the reading the post :/
what does everyone else think?????

 

[amber682]

Fly, I personally would do anything to to fight to get those numbers back up. Maybe you could discuss trying some asthma meds with the pulm and see what they think? Couldn't hurt. I saw a post on here a couple weeks ago where a child's PFTs dropped and came back up even better than before on flovent, I think.

Welshwitch, his nasal passages always appear slightly red and inflamed, so along with the PFT drop they figured they'd refer him to ENT

 

[JENNYC]

Fly...have yall ever tried Hyper-sal? It increases lung function and my daughter does so well on it! Since being on Hyper-sal I would say that was at least a 5% or maybe even 10% increase. Maybe you could ask your doctor if this would be right for your kiddo.

 

[JustaCFmom]

Hope everything is going well. Is your son active?

My son (also 8!) started around 109 on his PFTs, went up to over 120% when he got moving more, and has dropped back to around 107 since he isn't moving as much. I see that activity level can influence these results.

Just a thought. Hope you find the answer.

 

[NoelA]

My youngest is the same age and has done that several times. She starts wetting the bed, her PFT's drop. They have had her on multiple antibiotics, and none help. They tried prednisone and it worked. She had polyps!! Every time she gets them, the same thing happens. She starts bed wetting (not enough 02 at night to wake up) and her PFTs drop sometimes down into the 70's, and she normally runs in the 115s. Now that we know the signs and I have an awesome penlight to see into her nose, we get her into her ENT ASAP. She had sinus surgery last year, but when she gets a cold the polyps come back. I hope you find an answer very soon.

 

[amber682]

So good news. He was not admitted. ENT did a scope and said his nose was great, no polyps and not a lot of mucus. His PFT's were 130! Highest they've ever been. Probably due to the fact that he was on orapred. Plus he's been on the Cayston for a few more weeks since last PFTs. Doc says he expects them to drop back some, but hopefully not lower than 115. He switched his flovent 110 to alvesco 160, and we'll see how it is in 2 months. If it drops too low they are considering hypertonic saline. Thanks for all of the advice guys!

 

[CFSanDiego]

Fly, I personally would do anything to to fight to get those numbers back up. Maybe you could discuss trying some asthma meds with the pulm and see what they think? Couldn't hurt. I saw a post on here a couple weeks ago where a child's PFTs dropped and came back up even better than before on flovent, I think.

Welshwitch, his nasal passages always appear slightly red and inflamed, so along with the PFT drop they figured they'd refer him to ENT

So it was my child on flovent, which took it back up from 88 to 122 fev1. But we took her off and it remained high, so it was a transient thing I guess. Our new problem is pseudomonas. It never ends! Anyway, looks like my post is too late because the problem was resolved. Yippee for you! I am sure you are doing a happy dance