treatments

[anonymous]

HI

It is uncommon for a cf patient to not be doing breathing treatments. WE've been told that the lungs sound perfect and if we needed to do the breathing treatments at any time then do them but if not thats ok. Most of the problems we run into are digestive. I was just wondering you read so much on here about parents doing the treatments and using the vest on the kids that maybe we should be doing them too the doctor says as long as she sound good why give her more meds than she needs

 

[Allisa35]

I can't really give you a definite answer. Symptoms of CF can vary greatly in each individual. I have been doing breathing treatments since I was a child (3-4 years old). I don't recall the doctor ever telling us that I didn't need to take a breathing treatment. I also have the digestive problems. I know there are some CF patients who don't have as many problems with their breathing, but I don't know how that will effect them in the long run if they don't take treatments.

 

[thelizardqueen]

Hmm...I'm not sure how its done now a days (with toddlers), but I didn't start doing or needing breathing treatments till I was 14, mind you Tobra didn't come out till then, so I really have to clue. I would imagine that if your only problem is digestive, then why would you do treatments? Some CFers don't have lung issues, but rather digestive ones.

 

[Jane]

The only thing my kids had when they were young was when Jesse had RSV when he was 1 1/2 and needed some albuterol. The didn't start TOBI nebs until much later (I think Josh was 9). Pulmozyme was later than that.

 

[Nicole]

My son is 2 and was diagnosed at 2 days old. We have been doing CPT/Vest, albuterol, and pulmozyme since he was about 1 week old. He has never had any lung issues, mostly digestive, but we were told to do treatments as a preventative thing.

 

[anonymous]

Aidan was diagnosed at 8 days old and breathing treatments started right then. He is almost 2 and has not had any lung issues but treatments keep problems at bay. It is naive to think that the mucous causing his digestive and sinus issues is not in his lungs. It is, so we treat it proactively before it has a chance to flare up. Prevention is key and can keep lung problems at bay at times.

Megan

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thelizardqueen</b></i>

Hmind you Tobra didn't come out till then.</end quote></div>

Really, Liz? Is that a Canadian thing?

I've been doing TOBRA since 1984.....

 

[thelizardqueen]

I guess it is a Canadian thing, because I remember my doctor making a big stink about trying it when I was 14. My ped doctor was always about trying new things, etc, so I don't see why I wouldn't have tried it sooner if it was available sooner then that.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

HI



It is uncommon for a cf patient to not be doing breathing treatments. WE've been told that the lungs sound perfect and if we needed to do the breathing treatments at any time then do them but if not thats ok. Most of the problems we run into are digestive. I was just wondering you read so much on here about parents doing the treatments and using the vest on the kids that maybe we should be doing them too the doctor says as long as she sound good why give her more meds than she needs</end quote></div>

The latest thinking in CF care, especially for young ones, is prevention.

So if there are no lung symptoms yet, great! Prevention is key. And that involves keeping the airways open and any secretions, however miniscule, mobile. Best way to do this is chest PT ( I would get a Vest).

If your doc says why give her more meds than she needs, throw the question back at the doc. Why doesn't the doc believe in the latest CF thinking of preventative medicine? That would be a bit worrisome for me.

 

[amber682]

My son is 1 and 1/2 and does no breathing treatments unless he's sick or cultures something (like he cultured pseudo once). But I was planning on asking the dr. why not be on pulmozyme all the time as a proactive measure. I figured it should help to not get an infection if the mucus is thinner, or if chest pt works better after using it. But I'm not sure if there's a need for that in someone so young without much lung problems, or if its even proven to help on someone so young, so maybe that's why my son isn't on it all the time. Believe me, I don't want to add another med if I don't have to! Anyways, he's not on breathing treatments unless he's pretty sick, but we do chest pt 2x a day every day, or more if he's sick.

 

[anonymous]

Take a look at the CF Foundation "Horizon of Hope" video on line.

<a target=_blank class=ftalternatingbarlinklarge href="http://presenter.multicastmedia.com/links/CFF/Horizon_of_Hope.htm
">http://presenter.multicastmedi...F/Horizon_of_Hope.htm
</a>
It does a good job of explaining in Chapter 2, 3 and 4 about what is wrong with the cf lung and why cpt/vest treatments are essential (even if it doesn't "appear" that anything is wrong with the lungs).

I am a big advocate of cpt/vest for preventative treatments. Both of my kids started at one month old. They did not have respiratory problems then, just digestive. They have been very healthy lung wise. But they still do two 30 minutes vest treatments a day plus some inhaled meds all for preventative measures. I think these treatments are one of the reasons they haven't had problems. My daughter who just turned five has been on one oral antibotic in the last four years.
I am just thrilled with that. The way I see is that cpt/vest can't hurt, so why not?
Sharon, mom of Sophia, 5 and Jack, almost three both with cf

 

[anonymous]

My son was diagnosed when he was three weeks old, he is now 5 months old. We started treatments about a month ago. We are doing it for preventative reasons, he has not had lung issues yet, just digestive. What we have noticed is that he is coughing more now that we are doing treatments. The reason he is coughing more may be that he had mucus in there that now that we are doing the treatments is being broken up. So, it seems to be helping our son when we were not even aware of any issues.

 

[amber682]

Ok, to the original poster:
Are you talking about breathing treatments, like a nebulizer, or airway clearance, like the vest or chest pt? Airway clearance should be done even if the child is not sick, as a preventative measure. But it seems like breathing treatments (nebs) aren't always necessary on the small kids unless they're sick and needing it. But some children are on nebs preventatively, just not my son. But I did post a thread a while ago asking the same thing. If something like pulmozyme or even a bronchiodialator would make the chest pt more effective and that could help him not to get an infection and cause lung damage, why not all the time? So that's why I'm want to ask the cf doc about pulmozyme at the next visit.

 

[Di]

My son was dx'd at 3 weeks of age, and we have been doing chest
percussion every day since.  He is now 10 months.  The
only time he has had any problems is when he gets a cold, which is
when we increase his physio to twice daily, again it is only a
preventative measure.  He hasn't had any other breathing
treatments apart from that.

 

[Ratatosk]

Our son was diagnosed at 5 days and we've been doing cpt 3-4 times a day with nebs ever since. We were told the bronchiodialators open up the airways to get the stuff we beat out of DS, up and out of him. Our doctor has always stressed proper lung care as our top priority. Nutrition also very important, but keeping the lungs healthy and avoiding damage and loss of lung tissue, lung functino should be first and foremost. CFers are born with normal lungs and with increased infections, sticky mucus --- the cillia get bogged down, lungs get scarred....

 

[folione]

Our son was diagnosed at about 6 weeks and has been doing nebulizer/inhaler treatments ever since. He's 3 now. The minimum daily routine is a single dose of pulmicort & the vest. If he's got a cold or the air is bad from pollution or pollen we add albuterol and do both drugs twice a day. He has always had "all clear" check ups and has had maybe 4 or 5 colds over the past 3 years, none of which progressed into anything ugly. I credit his treatment routine (& good handwashing) for his being far healthier on average than any of his cohorts who do not have CF.

 

[anonymous]

Ok, to the original poster:
Are you talking about breathing treatments, like a nebulizer, or airway clearance, like the vest or chest pt? Airway clearance should be done even if the child is not sick, as a preventative measure. But it seems like breathing treatments (nebs) aren't always necessary on the small kids unless they're sick and needing it. But some children are on nebs preventatively, just not my son. But I did post a thread a while ago asking the same thing. If something like pulmozyme or even a bronchiodialator would make the chest pt more effective and that could help him not to get an infection and cause lung damage, why not all the time? So that's why I'm want to ask the cf doc about pulmozyme at the next visit.

-------------------------
Amber, mom to Vinny (18 mos. w/ cf)

 

[anonymous]

my actual question was about breathing treatments with a nebulizer but i guess i should have asked about the chest percussions also at this time we aren't doing neither we jsut assumed that the doctors always said her lungs sound perfect so she didn't need to be doing anything but from what i am reading alot of it seems to be preventative so should we start he is a year old there is so much to learn about this disease and maybe we were not informed very well and not explained about the preventative measures. If we should be doing the cpt does anyone have any ideas on how to get started at this age and the best wasy to do it

 

[anonymous]

Our now 5 yr old son has been doing 4 breathing treatments a day since birth, we knew he had cf when I was 7 months pregnant. He has more digestive isssues, he has also had several clean-outs. When he has a clean-out or is sick, he does breathing treatments every 4 hours around the clock. I have noticed that some of the cfer's don't do the breathing treatments all the time. I look at it as preventative and I think our cf doctors are very aggressive when it comes to cf. I now would feel like I am hurting my son by not doing the treatments everyday. Out of the 5 years we have only missed one and that bothers me. I guess it is up to your doctor, but I would think that preventative maintenace would be the key.

Take Care
Fourkidsmom

 

[anonymous]

DS is 3 and we do 3 treatments daily. When he was born, before I went back to work it was 4 times a day -- sometimes when he's got a cold or a bug we get up in the middle of the night and do an extra treatment. We've only missed one treatment and that was last winter when we were trying to catch a connecting flight and got stuck in customs. I'd hoped to plug his nebulizer in while we waited for the last flight home, but we ended up running thru the airport and catching the plane just in time.

I have heard that some doctors are mixing in inhalers, too and/or doing without the nebulized bronchiodiolators. Thought it was in reference to U of MN's program.