Hello, I am a new member to this site; although I have been a daily reader and follower since my twins were born 8 years ago with cystic fibrosis. 7 weeks ago my son's fev1 dropped from 120 to 65 and has not changed since. He has had 4 normal throat cultures and and a normal bronchoscopy. has has been tested for every virus, fungus,and bacteria the doctors are able to test for. Everything keeps coming back normal. He has been on antibiotics,steroids and anti-fungus since before Thanksgiving. Hes been admitted to 2 different hospitals during this time and both have released him after their treatments failed to show any improvement. The doctors have said there is nothing left to try. I am seeking advice on how to raise his lung function. In 8 1/2 year he has never missed having 2 vest treatments a day and we have recently added doing the Flutter. Thank you for reading and I look forward to any insight that you all may have. I don't know if this helps, but they are dd508.
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HELP - Major drop in fev1
- Thread starter PROUDPAPA
- Start date
MotherofCFBoy11yrs
Member
I'm wondering if another way of obtaining a sample of your son's airway bacteria could be helpful? Throat cultures do not always accurately reflect what is in the airways and in a bronchoscopy only some parts of the lungs are examined.
To obtain a sputum sample my son inhales lots of hypertonic saline (8 - 16 ml) with a mask and then coughs up several times as hard as he can and spits in a jar. Because of the mask the secretions also include bacteria from the upper airways. He uses the eFlow to nebulize the saline, with an older aerosol head for the saline, inhaling saline with new fast aerosol head can be a bit overwhelming. The beauty of this approach is that your son can do this at home, and you can take (or post) the sample to the lab. He has probably had enough of hospitals for now!
You could do this fairly frequently, and maybe also send the sample to another lab as well (not all labs are equal).
My son had a drop of FEV1, not as dramatic as your son's, but very worrying anyway. It was caused by a staph aureus infection which the doctors would not treat. In the end we had to change centres, got it treated (although he still harbours it in one sinus) and his FEV1 returned to 95% where it has always been.
I hope this helps, I can imagine how you feel.
To obtain a sputum sample my son inhales lots of hypertonic saline (8 - 16 ml) with a mask and then coughs up several times as hard as he can and spits in a jar. Because of the mask the secretions also include bacteria from the upper airways. He uses the eFlow to nebulize the saline, with an older aerosol head for the saline, inhaling saline with new fast aerosol head can be a bit overwhelming. The beauty of this approach is that your son can do this at home, and you can take (or post) the sample to the lab. He has probably had enough of hospitals for now!
You could do this fairly frequently, and maybe also send the sample to another lab as well (not all labs are equal).
My son had a drop of FEV1, not as dramatic as your son's, but very worrying anyway. It was caused by a staph aureus infection which the doctors would not treat. In the end we had to change centres, got it treated (although he still harbours it in one sinus) and his FEV1 returned to 95% where it has always been.
I hope this helps, I can imagine how you feel.
MotherofCFBoy11yrs
Member
Just a clarification: when I said the sputum sample could be sent to the lab fairly frequently I really should have said that you could take a few samples and send them to different labs. As a general rule an airway sample should be examined every 4 - 6 weeks (I think many centers do this less frequently which is dangerous).
Presumably they looked for mycobacteria? I know it is suspected when there is an inexplicable drop in FEV1, and that the test may not be part of the regular set of CF lab tests.
Presumably they looked for mycobacteria? I know it is suspected when there is an inexplicable drop in FEV1, and that the test may not be part of the regular set of CF lab tests.
D
Deb
Guest
Be sure to ask them to test for mycobacteria. This is not done on a regular sputum culture. I always have to give 2 samples; one checking for "normal" infections and one checking for AFB. (mycobaterium)
P
Patti Rowland
Guest
Same thing happened to my daughter - not quite as large a drop - and after a clean out in the hospital did nothing (her first one) we were told that is as good as its going to get. Then she went to florida for her first semester of college and the new CF clinic noticed she had never been tested for mycobacteria - something they more routinely check for in the southeast - and BINGO - that was the problem. Its gone now - lung function came back up in 30 days.
M
MomtoprincesswithCF
Guest
My daughters FEV1 dropped also, everything came back as normal...... Until one day she was able to cough up sputum.... They tested for mycobacterium and sure enough tested positive for mycobacterium abcesses : ( she is currently on a long treatment.... Every month she coughs up sputum and I turn it into the hospital lab..... We have to do this until she is negative..... We are going on 7months and she is still not all the way negative! Her FEV1 came back up to normal though after about a month on the treatment : ) she is symptom free just battleing to clear the bacteria out for good!
L
lifeisgood729
Guest
I had an unexplained drop in FEV1 a while back, and all my cultures were coming back normal flora. After we tried everything they could think of, another doctor suggested the possibility that I had an anaerobic bacteria. I guess they can't grow anaerobes in a normal culture, so it doesn't show up. My doc prescribed a course of oral Flagyl, and my problem cleared up quickly.
Another thought: Have they tested for reflux or for allergies? I went through several rounds of IVs that weren't clearing my symptoms. I finally went through a battery of allergy tests, was told to get rid of my dog, and the symptoms cleared up.
Martha
45 w/CF, mom to 3, no CF
Another thought: Have they tested for reflux or for allergies? I went through several rounds of IVs that weren't clearing my symptoms. I finally went through a battery of allergy tests, was told to get rid of my dog, and the symptoms cleared up.
Martha
45 w/CF, mom to 3, no CF
MotherofCFBoy11yrs
Member
Using hypertonic saline to get a sample is called 'induced sputum'. I've seen articles comparing it to other ways of sampling the airways so it must be relatively common.
If your son is not used to hypertonic saline it might be worth while to try the 3% solution first. Normally the solution is 6 -7% but that's pretty salty. (For example Pari sells both 3% and 6%.)
My son uses a mask which is held in place by a rubber band behind the head (again from Pari, as the eFlow) so he can play computer games when nebulizing. He just breaths normally. I let him nebulize it for a while a then ask if he can cough up. If he can't I add some more saline to the eFlow. If he still can't cough up anything after a while I ask him to take a few really deep breaths and try again. We keep going like this until we have a clearly visible sample. It does not have to be very big.
If your son is not used to hypertonic saline it might be worth while to try the 3% solution first. Normally the solution is 6 -7% but that's pretty salty. (For example Pari sells both 3% and 6%.)
My son uses a mask which is held in place by a rubber band behind the head (again from Pari, as the eFlow) so he can play computer games when nebulizing. He just breaths normally. I let him nebulize it for a while a then ask if he can cough up. If he can't I add some more saline to the eFlow. If he still can't cough up anything after a while I ask him to take a few really deep breaths and try again. We keep going like this until we have a clearly visible sample. It does not have to be very big.
Bernie74501
New member
My FEV1 dropped when I was 14 years old. I ended up figuring out that my airways were floppy. If I try as hard as I can on my PFT, ( which you're supposed to) my PFT will drop drastically. If I ease off and don't try as hard it will stay at a steady 70. My airways simply close when I force air out of my lungs as hard as I can. I really don't pay too much attention to the PFT personally, because of my situation. I've been between 70 and 75 with my PFT for 14 years now and haven't been in the hospital for 19 years. If he feels normal and doesn't have shortness of breath and no bacteria. From my experience, I would bet on floppy airways.
I believe they have tested for mycobacteria. We were told that some of the results can take long to come back, but what has come back is normal flora. He seems to feel normal, and even is participating in his indoor soccer. Yesterday he ran 1 mile without stopping. He is breathing more rapidly than he used to though which has me concerned - about 28 to 38 breaths per minute.
When I say they released him I mean from the hospital. They were done with treatments. So we went to another for a second opinion not accepting that this was a new baseline. All records were sent. Our home clinic knew we were seeking a second opinion- they even helped set it up. The other cf clinic started new treatments right away. That's how he ended up admitted at 2 different hospitals. The second cf team felt their were some drugs the first didn't try. The new ones had no impact either.
MotherofCFBoy11yrs
Member
Another thought: did your son try nebulized antibiotics? They reach the surface of the airways and the upper part of the lungs better than IVs.
I'm thinking that maybe you could see if nebulized colistin would improve his FEV1? It is broad spectrum and does not cause resistance - not sure if it is available where you live though.
I'm thinking that maybe you could see if nebulized colistin would improve his FEV1? It is broad spectrum and does not cause resistance - not sure if it is available where you live though.
Another thought: Have they tested for reflux or for allergies? I went through several rounds of IVs that weren't clearing my symptoms. I finally went through a battery of allergy tests, was told to get rid of my dog, and the symptoms cleared up.
Martha
45 w/CF, mom to 3, no CF
This is a good point, if the FEV1 drop is sudden, it could be an allergy.
Has anything changed in your home? New pet? Mould in the bedroom? Change of season?
Also, reflux is another good point of call. You should investigate this.
Silent reflux can cause lung inflammation and reduce FEV1.
No other symptoms like indigestion or heartburn may be evident, just the drop in FEV1.
Maybe ask the doctors to prescribe proton inhibitors?
Worth a shot as they have minimal side effects, unlike say, steroids.
We are in the same house we've been in since he was born. I've never seen mold or smelled it. We do not have any pets. I will peruse the allergy testing. The did prescribe a reflux med that we're supposed to take when he starts high dose ibuprofen - we're just waiting for it to arrive. My insurance requires it to be mailed for some reason. He was on iv colistin(sp?) they talked of putting on that inhaled , but chose inhaled tobi because he was already on that in the hospital . The only reaction I can remember was during thanksgiving we went to Myrtle beach and the chlorine bothered him so we tried to keep him out of the pool as much as possible. I did mention this to all of the doctors. Thanks again for all of the insight.
Has he had IgE levels tested recently? Our daughters is checked annually and they did come back elevated. This indicates that she is having an allergic reaction to something, but we have not noticed any other allergy symptoms. So now we are in the process of further testing.
Her highest FEV1 in recent years has been 116 but had dropped to the high 80's low 90's and we had been struggling to get them back up. I mentioned to the doctor that I felt it was more an inflammation problem than an infection problem so she has done a couple bursts of steroids and he increased the strength of her inhaled steroid (Dulera). Her last FEV1 was 101 so I think we are on the right track.
Does you son take any kind of inhaled steroid (Advair, Dulera...)?
Her highest FEV1 in recent years has been 116 but had dropped to the high 80's low 90's and we had been struggling to get them back up. I mentioned to the doctor that I felt it was more an inflammation problem than an infection problem so she has done a couple bursts of steroids and he increased the strength of her inhaled steroid (Dulera). Her last FEV1 was 101 so I think we are on the right track.
Does you son take any kind of inhaled steroid (Advair, Dulera...)?