Hyperinflated lungs?

[Justinsmama]

Hi,

I posted several posts this week about some concerns with my 9 year old son. Luckily, the horribly low PFT's was a fluke, the doctor confirmed the problem with the machine. That being said, he was started on anitbiotic and prednisone for increased cough and pain in the lower left abdomin where he has problems. The ped had us do chest x-rays to rule out a pneumonia. The x-ray was clear except it showed hyperinflated lungs. He is not sure what that is from and wants us to see an asthma specialist through our CF clinic. He is on a lot of asthma med's. He is on symbicort 180, (2x) qvair 40 (2x), singuliar, xopenex (2x), hypertonic saline, and pulmozyme as well as an extra xopenex (1-2 times a day). Seems like a lot!!! We are hoping that the steroid will reverse the problem. Does anyone have any experience with this? Any information will help.

 

[Ratatosk]

Years ago this was mentioned when ds was a baby. He'd come home from the NICU with an infection and developed a cough. We were instructed to increase CPT/neb treatments to 4 times a day, plus mini cpt treatments without nebs and he was a put on Tobi and another abx.

 

[Justinsmama]

Why Tobi? Was there some concern about psuedomonas? We have wondered about Justin because he did some much better after a round of cipro for his foot. Does that cause hyperinflation without fever? He is still coughing and says his chest hurts. His PFT's were great after a couple days of oral steroids. Not sure what is going on. Waiting to hear back from the Center but they can't get the x-rays until I overnight them this afternoon.

 

[Ratatosk]

The infection he came home from the NICU with was sensitive to Tobi, although he DID culture nonmucoid pseudomonas about a month later. But mainly the doctor really, really stressed increasing CPT. Have they run any cultures? Hyperinflation is also referred to as air trapping.

 

[Justinsmama]

No, no cultures yet. When we go next week. The ped mentioned possibly a habit cough. Could that cause the hyperinflation? He does not cough while he is sleeping but does cough the first ten minutes he lays down.

 

[Ratatosk]

I'd talk more in depth with either the RT department or a pulmonologist -- is your doctor regular peds or one who has a background in CF? Especially since he's having pain and a cough. As for a habit cough...ds once developed dry cough which I thought was just a habit and it turned out he was culturing steno malt.

 

[Justinsmama]

Our ped worked in a CF clinic for years and is the asthma specialist in the area. He is wonderful. Wants us to see the CF doctor about the possibility of it being from asthma and is also considering untreated infection. His PFT's were completely normal (on day 3 of steroids and antibiotic). Wouldn't you expect if there was a problem that the PFT's would have stayed or been low? The first one's done were a fluke so we don't really know what they were before med's.

 

[Melissa75]

Justinsmama, I hope you've received some answers info from your doctor.

Here is an interesting powerpoint on PFTs that discusses hyperinflation and air trapping, among other things. I've had both come up on PFT reports.

Ugh, I can't get a good link, but I searched this: rv tlc ratio
And part of the web address is faculty.mdc.edu
Here is the key info:
Obstructive Pattern--Hyperinflation
•RV increases with little or no change in VC; TLC increased proportional to RV

(TLC >120% of predicted)
•The RV/TLC ratio also known as RV/TLC% and is expressed as a percentage
In normal, young, healthy adults, the RV/TLC% ranges between 20% and 35%

And a journal article on hyperinflation, explaining dynamic vs. static
http://www.atsjournals.org/doi/full/10.1513/pats.200508-094DO

 

[amber682]

His PFT's were completely normal (on day 3 of steroids and antibiotic). Wouldn't you expect if there was a problem that the PFT's would have stayed or been low? The first one's done were a fluke so we don't really know what they were before med's.

I think you'll know more when they do another PFT after he is off the abx and steroids. His numbers may dip back down. I think you'd expect them to be good when on steroids and antibiotics but if there is still an issue they'll drop again

 

[Justinsmama]

Hi,

We had our appointment on Friday. The discs for both x-rays got lost so the doctor did not get to see them. We got a new asthma plan, no qvair and no atrovent. He now gets singulair, prevacid, xopenex with saline and Pulmozyme and Singulair 160 twice a day. All things he was on, just reducing xopenex after the next week. He is only to use the rescue xopenex once a day after he is stable. I understand the plan but not sure Justin will go along with it (not need more). Plan is only antibiotics with flairs from CF. One oral steroid a year (he has been on 5-6). A little worried that he will get out of control again. He still has a cough with deep breath and when he runs, just not as bad as before. Doctor explained how most CF kids have thick mucus as their main problem. For Justin, this is not his main problem (more thick than normal kid but not as bad as kids that get bad bugs) but he has a very strong inflammation portion. This is what causes most of his problems. She said that during the bad week, his airways were probably really red and inflamed. He was between yellow and red for his asthma plan, now between green and yellow. Starting to calm down we hope.

 

[Rebjane]

Was your follow-up with the CF doctor or a pediatrician? My daughter has a large inflammatory component of CF which is very typical in CF. It is a cycle; infection, inflammation, and lung damage. We are trying to interrupt that cycle to prevent the damage. Hope things go in the right direction! It is great to have a plan but be ready to be flexible? My daughter has needed oral steroids more than I would like and very certainly more than once a year. At least a couple times a year, unfortunately. Our CF doc uses "prednisone Bursts" a fairly high dose for 5 days then stop. So far one time she did need a taper. She is also on Pulmicort nebs twice a day and Nasonex.

 

[Justinsmama]

Hi,

Follow up was with the CF Clinic. Not sure how much infection plays in Justin's cycle because he only cultures staph, h. influ all the time and once strep. May have viral infections on and off. We will be doing the pred bursts instead of the lower dose for longer. Yes, I am flexible to do whatever it takes to make him better. Does your daughter have problems with asthma? We never had a baseline cough a year ago and since, he has had several flairs (most seemed like infection or virus driven and then made worse by "asthma"). He was on an antibiotic and pred in early Nov and then since sometime in December has had an increase in dry cough with deep breath and exercise but also has "spells" about three times a week without a trigger. So hard to know what is what.

 

[MotherofCFBoy11yrs]

I wonder if the staph could be causing your son's symptoms? Staph aureus is definitely not a harmless pathogen for people with CF - a few decades ago it used to be the main cause of death for children with CF.

I know that some centers do not treat it if it's not causing symptoms, but I don't think that's a good idea. The infection destroys tissue and can become very hard to eradicate. If there is inflammation, there is probably an infection.

 

[Rebjane]

My daughter has not been diagnosed with asthma. She did have a bronchoscopy years ago when she was 2 and a half and the CF doc said she had alot of inflammation from her CF. This is when she started her Pulmicort nebs. Lots of things can stimulate her lungs response. A virus or bad cold can make her wheeze; not always though. It can be very unpredictable.

When she exercises, we give her a few puffs from her Albuterol inhaler(like a premedication) to help open her airways to help her run. She did cross country this past fall for school. She would take a puff from her albuterol inhaler before a race. I also would do albuterol and a VEST or flutter treatment before her practices. After the season was done she went in for PFT's and blew the BEST PFT's she has ever blown. She was up 10%. The only change had been the exercise routine.

Course now the season is done but it is worth noting the positive effect of exercize on the lungs. BTW, my daughter did not run fast. She was slow and steady She only missed one race due to illness and finished every race.

I guess it's always good to evaluate what we do for our kids and why. One time my daughter was having a very bad time respiratory wise; I felt like we had really done so much for her and the only thing left was IV's. The CF doc made me go through our whole daily respiratory routine and we switched around the order of things and it helped. I guess I went way off topic but it's good to take a step back and figure out the best way to tweek things. To make it even harder; what works for one person with CF may not work for another.

I do find my daughter does have respiratory symptoms when she is culturing bacteria; unless the counts are VERY low.

 

[jricci]

You may want to ask your doc about your son trying Spireva. It's supposed to help with air trapping (hyperinflation) and really helps with increasing exercise tolerance. It has made a big difference for me. I'm just not sure if it is normally used in children. Hope you find some answers.

 

[Justinsmama]

Thank you so much. I will ask about Spireva. It might be one of the drugs his CF doc said we might try in place of Symbicort. Didn't want to try too many changes at once. I also agree that it could be the staph. It seems that he has a "flair" of some sort about twice every three months. Around the time it could have started to grow back. He is 1 week off the antibiotic and pred and cough was a little more this morning. Not sure if that means anything yet. I will keep a record log of when and how much he is coughing to try to figure it out with the doc's. Thank you so much to everyone, I appreciate your responses.

Rebjane, your daughter sounds a lot like Justin. He dances (pre-professional level for ballet, tap, and jazz - 10-12 hours a week plus nonstop at home) and I think this helps keep his PFT's as good as they are. He always cultures staph and h. influ is on and off so it is hard to tell how much that plays into things. Thank you for your support.