CPT & Nebulizers

[anonymous]

How many people perform CPT or use the vest on themselves or their children each day? How often do you nebulize? I'm constantly shocked to hear how doctors don't have people do CPT on a regular basis or only if there's congestion. Or don't start with it right away once a diagnosis is made.

We've been doing CPT with Albuterol & Atrovent 3-4 times a day since DD was 1 week old.

 

[HD]

Ian did Chest PT daily from 6 months to 4 years when he started developing mucus plugs. We do Xopenex on the neg (Albuterol without the zing) then Vest twice a day

 

[anonymous]

My dd uses the vest for 30 minutes each day (more as needed) and uses nebs as needed (no long-term nebs yet). Her lungs are so far unaffected so the vest is more of a preventative measure for her.

 

[anonymous]

My 4 yr old daughter does has manual CPT twice a day.....3 times if she has a cold. We don't do nebs unless she has a cold and then we do albuterol twice a day. The reason her doc said no nebs unless she is sick is b/c the risk of getting bacteria from the nebs is greater than the good it can do unless she is sick. Make sense???

 

[JazzysMom]

The idea of CPT is to minimize the amount of sputum by keeping it "flowing" so we can get it up & out of us which will hopefully reduce chances of infection or the length of it. SO it is a maintenance no matter if you are actually sick or not. Some people (myself included until this year) only did the CPT when they were actually sick, congested & in need of real care. I have learned the hard way that its a lot easier to do a bit every day & probably prevent things from getting too bad then to play hooky on my treatments, but playing catchup later & possibly causing damage along the way. What has been in ??? is the use of tobi, colistin & other "maintenance" antibiotics & other meds because of potential resistance build up. I have found that I can get away with not doing two treatment for a day or two, but cant miss none at all. I need at least one daily.

 

[anonymous]

DS is 2 1/2 and we've been doing BD's (Bronchial Drainage) or manual CPT 3 times a day since DS pretty much since he was born along with albuterol and atrovent. We also do tobi twice a day and pulmozyme once a day (just started that in September).

DS's CF doctor stressed how lung care was oh so very important even if the lungs aren't having problems yet. I remember him saying that other doctors will tell you nutrition is more important, but one can always add calories, you can't regain any lung tissue that is lost. He said the more beatings the better -- at bare minimum twice a day, 4 times would be ideal, but we as parents need to have a life, as does our child.

Our local doctors are more reactive than proactive and questioned our doing CPT and nebs at all. In any event, we figure we'll do whatever we can to keep ds's lungs healthy.

On a side note, I was horrified when DS was first diagnosed and read a post on another site from a parent who injured her arm and just skipped her child's CPT all together 'cuz she had a cast. Heck, I can do one handed CPT when DH is at meetings. Takes a little longer, but it can be done.

Liza

 

[anonymous]

Hi, have you seen the TLC (Total Lung Care) webcast on CFF.org? It is very interesting and discusses why people need different (more, less, different types, etc) types of treatments than others. It also discusses the reason why nutrition is so very important for long-term lung function.

I personally think it is so important to have a good CF doctor that you have confidence and trust in, one that not only knows the latest in CF care but one that also takes the time to get to know the needs of the individual with CF, and that will help each CFer find a good treatment program as an individual - since everyones genetic make-up is so different (CF mutations and all other genetics) rather than just adding the "treatment of the month" without necessity.

JMO!

 

[anonymous]

I realize that nutrition is an important part of CF, too. But when DS was first diagnosed all they wanted to talk about was that dreadful pregestimil formula. DS wouldn't eat it and the CF dieticians and local doctors tried to make us feel that we were horrible parents and jeopardizing our son's health by refusing to give it to him and opting for regular formula. Our CF doctor finally stepped in and said feed the kid what he wants. Defeats the purpose if the kid isn't going to eat it.

Our CF doctor is proactive and doesn't dispute the nutritional importance, but just places higher priority on the lung care. I just shake my head every time the local pulmonologist scolds us for the nebs and bds that the CF clinic in the city prescribes.

Liza

 

[helpusfindacure4cf]

We do our daughters CPT twice a day one morning and one evening and she has her nebuliser on the evening as she is "supposed" to be colonised with pseudamonas (sp)??.

 

[HD]

Oh how I hated progestimil! I breasfed Ian, but at night he had an NG with progestimil. Vile stuff, especcially when regurgitated on your head at 3 am.

 

[blindhearted]

I've done Albuterol and CPT (manual or percussor with posteral (sp?) drainage) or the Vest (got at 19 yrs old) for as long as I remember. I've always done them for 3 - 4 times a day normally. When I am congested every three and a half to four hours while awake. CPT/Vest can take anywhere from 20 - 45 minutes. I also do DNase twice daily and TOBI every other 28 days. However some days I get so busy I only do 2 treatments, but I pay for that later in time when I begin to get sick. But my doctor ask for no less than 3, prefer 4.

 

[anonymous]

I do the Acapella or TheraPEP twice a day, Xopenex and GSH nebs twice a day. Atrovent and Xopenex nebs 4x a day and acapella/therapep 4x a day if sick.