lung function has dropped seriously

[mojorisen]

so heres the run down. and I am going to start from a year ago. last December Aidan's lung function was 98 percent. then in march it dropped to 81 percent, so we did round of cipro, and he was batteling a cough and ear infection, then in july it was at 84 percent, and I got yelled at by doctor cause I wasn't giving him his advair twice a day(only cause I thought since it was summer and ALL he does is swim and run miles of energy off, I was told that is a treatment in itself, so I was only do inhalers once a day, lesson learned there) so now its November and I was expecting a great clinic visit. in the past year we had no picc lines, no major exasperations, and only did oral abx once. I was so proud. so good news hes put on 6 pounds in 3 months and grew another inch bringing him to over 4 feet..woo-hoo! I knew he would gain cause school started and they are chained to their desks all day and hes not burning off the calories like he does in the summer. then the results from pft. hes at 83 percent. WHAT!? im doing everything were supposed to do, no more skipping anything. the doctor thinks theres a bacteria in there doing this without showing symptoms other then this lousy percentage. and Aidan doesn't cough anything up yet, so were still swabbing, so we only get what we can from that. so her plan is to do oral abx for 4 weeks, and I mean they are blasting him. 3 leviquin 3 times a day and Bactrim 3 times a day. then we go back to clinic in a month and do pft again. if there is not an improvement she wants to admit him, do a bronchoscopy and iv meds. ugh a week before xmas(U).

so that's where we are. I am just so worried and cant believe this has happened. does anyone have similar experience with their kiddo. Aidan is gona be 8 in 3 weeks. I seriously never thought his lung function would ever be this low at such a young age. im so sad.


Elizabeth
-----------------------------------------------------------------------------
mommy to Aidan 8 w/cf dx @birth

 

[Twistofchaos]

Hi there,

sorry to hear you had such disappointing results even when trying your best.

Not sure what to say or recommend. If he loves to run and swim let him do it as much as possible. Maybe even at the expense of some homework or school because from your story it's not clear to me if he still does so in winter but maybe I read it wrong.

If he does not cough anything up yet maybe a session with a physiotherapist or the doctor explaining him breathing and clearingtechniques such as huffing could be useful. Does he use a nebulizer? Hypertonic saline and Pulmozyme? Even if not strictly necessary yet it does keep things nice and smooth down there and it's a good way to learn how to cough stuff up because then there's actually stuff to cough up. (The medicine itself.) Ofcourse it's also some nice quiet time and a great excuse to play videogames or whatever but maybe one has to be a little older to appreciate that. For me, no one takes away my nebbing time!

The lungfunction doesn't have to be a new setpoint yet at this age and good and bad results do come and go. The month of antibiotics sounds like a good try.

 

[Ratatosk]

How many chest physiotherapy sessions are you doing a day? Despite DS being active, especially during the summer, we've always done 3 treatments a day. We were told a minimum of two. We bump it up if he gets sick to 4 times a day, sometimes even more. Despite that, recent lung scans showed some issues with his right lobe, so in addition to 30 minute vest treatments with bronchodilators 3 times a day, we do mini cpt on that part of his chest.

 

[mojorisen]

weve tried pulmozyne and hypertonic in the past, with horrible side affects. raspy voice, sore throat and ends up with a cough, though I know is expected and good, but it turns into something progressive that we have to treat. he will be having a ct scan. so im really hoping that gives some answers. we do 2 treatments a day. with both inhalers and chest pt either with cup, or pickle, or vest. im really hoping this abx works, but im also not counting on it. I really think hes going to need bronch. to get a better look and trat it that way.

Elizabeth

 

[Jellybaby]

Sorry to hear he's not doing well
If I were u if just go straight in and do the Iv antibiotics now instead of waiting around on orals to work.... I had a bad patch a few months ago and couldn't get myself better with orals so I was admitted for ivs and it got rid of everything...my cough sounds more often clear the chesty now! At least if he went in now he would be out and well in time for Christmas. Probably best to just give him a good clear out? Hope things work out for you

 

[Printer]

Raspy voice & sore throat sounds better than a reduction in lung function. It is not easy but sometimes we need to make the hard choice.

Bill

 

[MomtoprincesswithCF]

My daughter just turned 11 and had been doing great!! About a year ago her numbers started to drop slowly she was at 115% then it went down to 106% then 104% and then 90%...... She had no symptoms she was perfectly healthy acting..... We tried multiple rounds of oral antibiotics.... Till that last big drop to 90%.... They admitted her! She did spit sputum up and sure enough she has a bacteria called mycobacterium abcesses!!! AHHHHHHHHH ! I know it's a hard decision, but I would go ahead and talk to the doctors about going ahead and admitting him. Something has to be making his numbers drop and if it's a bacteria sometimes they can be sneaky and hide with hardly no symptoms but a drop in numbers that's how it happened for us : )

 

[mojorisen]

whats driving me crazy is hes showing NO symptoms, other then the obvious number drop. so this is so different then past experiences when he was a sickly mess. im actually so conflicted on what to do. I know about the MAC, and did talk to his doctor bout it. she gave me some interesting feedback from patients bout it. and her feedback as a doctor. I was glad to get that scoop from her. and I have been worried that it could be that. I asked her if we should just go in and do the bronch now and see if we can get some answers there. and they said no only cause you don't want to do a bronch if we don't have to and what if the oral abx works and we did a bronch for nothing. uggghhh. so frustrating, right. sometimes I really think the doctors just don't get how we as the parents feel on our side. I loathe waiting to "see" if a med is going to work for 3 weeks. I know there has to be something in there doing this. but I really think the doctor is gona shoot me down when I call tomm, and ask to just do a bronch now. she wants to do ct scan and abx and see if she sees something on scan and hope the abx kicks what he has. but what worries me is yes if the abx works and we see his pft's go up in 3 weeks. how do we know in 3 months when we go back for clinic they wont be down again. cause we didn't do a bronch, and there is something in there that needs to be treated with the correct meds?

oh and bill, while I appreciate your feedback from you and everyone. I stated that when he does pulmozyne and hyper. he also get a nasty exhasperation that has resulted in oral abx and one time iv meds. so for now im stearing clear of those two cause of the side affects it gives my son. yes all the time I feel I have to make hard choices, and believe me with holding those two meds is a hard choice. I would rather they helped him then made him worse.

thanks again for everyones help. it really has helped me. so keep it coming!

Elizabeth

 

[Ratatosk]

DS has had lung scans as opposed to regular CT scans in which he inhales a radioactive isotope via a neb and then he's scan. It gets a better picture of the smaller airways. Not invasive like a bronch, so might be an option. If it is MAC, I would push for aggressive treatment asap to help prevent any additional lung damage. Meanwhile, IMO, I'd throw in additional vest/cpt treatments. As mentioned before, our daily routine is 3, 30 minute vest treatments a day and when DS gets sick we bump it up to at least 4, sometimes more along with some targeted, mini cpt treatments.

 

[LittleLab4CF]

The response to desiccated mucus is not always there. I have to be practically drowning to cough spontaneously and I had that issue very young. Making him cough is the difference between decline and boundless energy. I had that too.

Here's hoping you a reversal of fortune, an improvement in breath,

LL

 

[occupyjapan]

As Bill said, I wouldn't exactly consider hoarseness and a sore throat to be "horrible" side effects. How long did you "try" them? New inhaled meds can cause bronchospasms when they're first introduced - especially something as irritating as hypersal - but you will eventually get more used to them. During my first ever round of it, Cayston used to make me gag and make my chest feel like it was imploding even with taking albutoral before. Nowadays, it isn't uncomfortable at all; I don't even "need" to do albutoral (though I still do anyway as part of my routine). Sometimes, things just take some getting used to.

 

[mojorisen]

again, he has other side affects from the hyper and pulmo. he developed a cough, which I considered a good thing, till it turned into a complete flare up that had to be treated with abx. and I am on board with adapting to meds and pushing thru. something we have overcome with many things. but when it turns into side affects that cause him pain and hospital stays, short of me pinning him down and forcing him to take it all the while hes screaming and crying is not in my plan of treatment for him. I will not. I have 9 days left of his oral abx, and I am so hoping it works.

Elizabeth

 

[SMMC]

Pulmozyme and hypertonic saline

I am a 53 year old adult with CF, I was diagnosed in my 30's. I do nebs with Pulmozyme, twice a day and; hypertonic saline two to four times a day. I do cough up lots of junk after doing these nebulizer treatments. I would think that the increase in his cough, raspy voice etc. was partly due to the stuff breaking up in his lungs and being coughed out. It is far better for him to cough it out, than let it just sit in his lungs. If the mucus sits in his lungs, he will develop an infection and; it may be hard to treat. I know using a nebulizer at age 8 is not fun but it will help him stay healthier in the long run. He could read, color, do puzzles, watch a dvd, play video games etc. while using the nebulizer. Sue

whats driving me crazy is hes showing NO symptoms, other then the obvious number drop. so this is so different then past experiences when he was a sickly mess. im actually so conflicted on what to do. I know about the MAC, and did talk to his doctor bout it. she gave me some interesting feedback from patients bout it. and her feedback as a doctor. I was glad to get that scoop from her. and I have been worried that it could be that. I asked her if we should just go in and do the bronch now and see if we can get some answers there. and they said no only cause you don't want to do a bronch if we don't have to and what if the oral abx works and we did a bronch for nothing. uggghhh. so frustrating, right. sometimes I really think the doctors just don't get how we as the parents feel on our side. I loathe waiting to "see" if a med is going to work for 3 weeks. I know there has to be something in there doing this. but I really think the doctor is gona shoot me down when I call tomm, and ask to just do a bronch now. she wants to do ct scan and abx and see if she sees something on scan and hope the abx kicks what he has. but what worries me is yes if the abx works and we see his pft's go up in 3 weeks. how do we know in 3 months when we go back for clinic they wont be down again. cause we didn't do a bronch, and there is something in there that needs to be treated with the correct meds?

oh and bill, while I appreciate your feedback from you and everyone. I stated that when he does pulmozyne and hyper. he also get a nasty exhasperation that has resulted in oral abx and one time iv meds. so for now im stearing clear of those two cause of the side affects it gives my son. yes all the time I feel I have to make hard choices, and believe me with holding those two meds is a hard choice. I would rather they helped him then made him worse.

thanks again for everyones help. it really has helped me. so keep it coming!

Elizabeth

 

[ryry11]

I'm disappointed in people's "advice" right now. Elizabeth, it's so obvious you care a lot about your son, and it seems like you are in close contact with your doctor. If they know you aren't doing Pulmozyme and hypertonic and are okay with that, then that is good. None of us are doctors and none of us are HIS doctor. If he ended up with a flareup from Pulmozyme, that is a problem and I assume you have done what you can to figure out why.
To others- she has said now, multiple times, that it wasn't just a raspy voice and sore throat. He ended up with a flareup. Stop judging her and the decisions her and her doctor made.
My advice: Can he not do any nebulizers? Could he try Tobramyacin, either the Podhaler or through a nebulizer? Cayston? Oral abx might not do the trick.

 

[Printer]

Elizabeth:

I will be 74 in January and I have lived my entire life with CF. Cystic Fibrosis medical treatment is not a democracy, you don't get a vote, much less a veto. Trust me when I tell you that I know something about CF, but I don't have even a small fraction of the knowledge that my CF Doctor possesses.

Your son has had a (FEV1) lung function loss of 15%, in 6 to 12 months (at age 7). This is not just a number. At this rate he could be on the lung transplant list by the time that he is 10. The time has come, for you, to stop playing Doctor and leave it up to the CF Professionals. This alone should tell you to surrender his treatment plan to his CF Doctor. Then follow the plan to the letter.

There was a situation, a few years ago, in Lawrence, Massachusetts. Lawrence Superior Court in Essex County. A young boy had cancer and his Mother withheld his medications "because they made him feel sick". He died. She was arrested and convicted of 2nd degree murder. She is serving 20 years at the Framingham Women's Prison. A Google search will give you the details.

Mariah:

When you finish Law School and become a Health Advocate, I hope you will be more concerned with the patient and his/her care and treatment and less about the Family concerns. This 7 year old needs someone to advocate for him.

Bill