You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Sould we be doing breathing treatments
- Thread starter Mistyjo
- Start date
Doctors are either proactive or reactive, some prescribe the vest, nebs etc despite good lung function as a preventative to keep the lungs as healthy as possible, some treat as needed. I think it also depends on the type of CF (now don't shoot me, some people present asymptomatic because of "milder" mutations) Kids who have classic mutations and presentation I would presume are started on CPT early along with nebs.. Of course, this is all speculation, I would sit down with the doctor and ask what his opinion is as far as treatment goes
Jenn 40 wCF
Jenn 40 wCF
We started DS on CPT and nebs about a week after he was born/diagnosed with CF. His doctor is very proactive. The local CF clinic doesn't prescribe "unless there are symptoms, unless the lungs are affected". I've met several kids who go to the local CF clinic and most of them have productive coughs, have been hospitalized for pneumonia a few times. Seems to be the clinic mentality that they're supposed to cough because that's what people wcf do. Whereas DS' baseline currently at age 9 years old is no cough. IMO, it's better to get into the habit, get your child used to it and keep her lungs healthy.
On a side note a friend of mine's daughter is the same age as DS, but wasn't diagnosed until 18 months. While DS fell asleep during treatments, gave us minimal trouble -- they struggled each and every time. Knock down drag out screaming fits.
On a side note a friend of mine's daughter is the same age as DS, but wasn't diagnosed until 18 months. While DS fell asleep during treatments, gave us minimal trouble -- they struggled each and every time. Knock down drag out screaming fits.
My clinic started me on treatments when I was young, however due to my high level of activity and excellent lung function they told my parents they didn't have to do treatments as long as i stayed healthy and active. I followed that advice until this year just before I turned 31. I now have my first vest and do xopenex nebs twice a day (along with 20 min vest treatment). My PFT's hover around 100%, 120% on really good days.
W
welshwitch
Guest
I also have PFTs over 100, but I only do pulmozyme. I asked my dr. about a vest and she said right now we don't need to go there. I will say though that I do a lot of proactive stuff on my own -- lots of exercise, eating an anti inflammatory diet, and getting enough sleep.
W
welshwitch
Guest
Definitely. That's really the best thing you can do as a CF kid. When I was young I was on soccer teams, baseball teams, and tennis teams non stop and it was great. That said it never hurts to ask your doc about additional treatments, especially if she gets run down or sick.
M
Mommafirst
Guest
CF is so unpredictable. Sadly, her lung function will be good, until its not. That could be at age 30 or age 3, no one knows. And some of the treatments are reasonable and useful for preventative care. . . meaning you have to start them now when they are healthy.
Anyone who told you she "just" cultures staph a is misleading you a bit. Staph can cause lots of issues in some CF patients and none in others. My daughter cultures staph since she was 6 months old and has had several needs for IVs because her staph can really kick some butt some days.
Personally, I'd want to have my kid on some preventative care with airway clearance since so many of the CF lung symptoms are really silent and invisible. . . and you won't know when it starts to kick in until damage is being done.
Anyone who told you she "just" cultures staph a is misleading you a bit. Staph can cause lots of issues in some CF patients and none in others. My daughter cultures staph since she was 6 months old and has had several needs for IVs because her staph can really kick some butt some days.
Personally, I'd want to have my kid on some preventative care with airway clearance since so many of the CF lung symptoms are really silent and invisible. . . and you won't know when it starts to kick in until damage is being done.
saveferris2009
New member
there can be lung damage even if your FEV1 is 100+%.
prevention is always better than treating something after it's occurred.
My FEV1 was over 90% until just a year ago (I'm 30) and i KNOW that all the preventative treatment I did as achild and young adult has given me many more years of life.
prevention is always better than treating something after it's occurred.
My FEV1 was over 90% until just a year ago (I'm 30) and i KNOW that all the preventative treatment I did as achild and young adult has given me many more years of life.
D
DaraR
Guest
I just want to chime in because I also worry about whether or not we are doing enough at this stage in my LOs' lives. Both my kiddos started CPTs at 2 months, but our clinic doesn't start nebs until they are needed or until the child turns 6 yo. We are seen at John's Hopkins and the doctors told me that their is no evidence that prenentative nebs are beneficial in children under 6, so unless they are needed, they don't prescribe them. I think it's more because there aren't enough studies done on children under 6. Anyway, I trust them as I know they are a very good clinic, but so many other clinic seem to start the nebs right away. I really wish there was more of a standard as far as preventative treatments and when they are started. That being said, except for the early hospitalizations involved with their MIs surgeries, my kiddos have been very healthy (knock on wood***). They've never cultured anything, and their baseline coughs are zero. Our CF doctor said he would have no problem starting them on nebs if I wanted to and there were other families at the clinic that do start them early only for preventative measures. I just go back and forth on what I should be doing.
We've done nebs albuterol/atrovent from day one. At three months old DS cultured Pseudo -- no symptoms --- and was put on Tobi. So the bronchiodialators were used to open up the airways to allow the Tobi to get further into the lungs to treat the pseudomonas....
That's really strange on the note from Hopkins. We go to Hopkins as well and have been on preventative treatment since our little one was 10 weeks old. He got his first cold, they prescribed HTS & albuterol and that was that. He's been on it ever since. He's 18 months now and other than a cold around 4 months, he's been healthy.
We now do HTS in the morning & vest treatment, albuterol & vest at night.
We now do HTS in the morning & vest treatment, albuterol & vest at night.
MargaritaChic
New member
Our clinic (the University of Minnesota) prescribes proactive treatments. Our daughter started on CPT at 8 days old and nebs at 1 month old. She got a Vest at 1 year old. Her baseline is no cough and she had her first hospitalization for pnemonia and influenza at age 4 1/2.
We are HUGE advocates for proactive treatments. Waiting until your child has lung issues means that there may already be irreversible damage to their lungs. I am not going to take any chances on having that happen. There is so little that we can control with CF, why not do everything possible to fight it.
Beyond the health benefit too, there is the benefit of routine. If a child starts treatments at a young age they get into the habit of doing it. It is much easier to 'train' a young child to do this than it is when they get older. My child has always done treatments, and until there is a 'cure' she always will.
If your clinic is willing to prescribe, what is stopping you? Have you thought at all about talking to another clinic that has a more proactive approach to see why they think that approach is best? It might help you to see things from both sides.
Good luck!
We are HUGE advocates for proactive treatments. Waiting until your child has lung issues means that there may already be irreversible damage to their lungs. I am not going to take any chances on having that happen. There is so little that we can control with CF, why not do everything possible to fight it.
Beyond the health benefit too, there is the benefit of routine. If a child starts treatments at a young age they get into the habit of doing it. It is much easier to 'train' a young child to do this than it is when they get older. My child has always done treatments, and until there is a 'cure' she always will.
If your clinic is willing to prescribe, what is stopping you? Have you thought at all about talking to another clinic that has a more proactive approach to see why they think that approach is best? It might help you to see things from both sides.
Good luck!
MadMailMan
New member
If you don't feel comfortable with what your doctor is saying or prescribing then go for a second opinion. Doctors are like shoes, sometimes you need to try a couple before you find on that fits. I'm 35 now and my blood has only today been taken to find out what exact mutations I have. I had 9 sweat tests and about 6 blood tests over my life and all conclusions have been that I don't in fact have CF. As a kid and teenager I was very very active. Swimming, rugby, track and field, soccer, water polo and I even represented my country at the junior world wild water kayaking championships in 1992. My FEV1 today is 27% and a O2 concentrator was delivered to me this week. I firmly believe that a lot of my lung deterioration was due to not being treated correctly in my younger years. I don't however blame the doctors that treated me. I have a very unusual variation of CF and I still believe the doctors treated me according to the results of my tests. I'm not trying to scare anybody but maybe I just didn't see the right doctors. Thinks may be very different for me right now if I had.
DD has had CPT since two weeks old...first manually, then with the vest once big enough. I agree with prevention, prevention, prevention. Don't wait until symptoms progress. Who knows how long those symptoms would take to present themselves if more preventative action had been taken? Her xrays after starting Pulmozyme (at 8-9 months old) showed improvement the following year. The only difference during that time frame was starting Pulmozyme - no other treatments or CPT approaches had been applied - including level of activity/exercise. I'll let that fact speak for itself....at least for her. We started 3% HTS last year as well...much less of an irritant than the more common 7-10% - but I did have to push her doctor to start it as she was only three years old at the time....
BTW, she has cultured Staph A since diagnosis...we don't treat it unless she's having problems.
BTW, she has cultured Staph A since diagnosis...we don't treat it unless she's having problems.