When did you start daily cpt?

M

Mommafirst

Guest
My daughter is 6 months old and has thus far had no signs of
respiratory issues.  She is also pancreatic sufficient.
 We've only met with the CF team once so far about 6 weeks ago
when she was diagnosed, but we did not meet with a respiratory
therapist.  From what I've read, it seems that some sort of
daily CPT is important to keep the lungs healthy before she gets
sick.  I would guess its also important to get her used to
the process so that she isn't completely resistant to it.
 So I'm wondering at what age most CF kids start the CPT
process, and if I should be concerned that they haven't discussed
this yet.<br>
<br>
I so appreciate all the good insight everyone on this site
provides.  As someone who is sooo new to the CF world, sites
like this one have been such a blessing!!  I want to be the
best advocate for my daughter's care as I can, but most of the time
I feel so ignorant.<br>
<br>
<br>
Thanks in advance,<br>
Heather<br>
Mom to Alyssa (6months w/cf -- w1282X and y1023c)<br>
and Richie (5) and Reese (almost 3) -- both currently being
tested<br>
 
N

NoExcuses

New member
I'm going to refer my mom to this topic, but until then I'll tell you that she did CPT on me since i was diagnosed at 6 months old. My lungs were perfectly fine until I was many many years older. And I'm sure it's because she did CPT.

The goal with CF used to be treat the symptoms.

The goal with CF now is to prevent them before they even happen.

Your 6 month old is a perfect candidate for preventative care!
 
K

karon72

New member
My daughter was diagnosed when she was 14 months old and we started CPT pretty much right away. They might be letting you soak everything in before starting you on the daily treatments. The earlier you start, I think, the more routine it will become for your child. Erin is 4 now & somedays are a battle to do CPT, but she doesn't really know anything different.
 
N

Nicole

New member
My son was diagnosed at 2 days old. We started doing CPT at about 1 week. He has not had any lung issues at this point.
 
L

luke

Guest
I have been doing CPT for as long as I can remember...much earlier than when my lung involvement started. I will bring up that there are studies that show that tiliting children up side down actully shows a decrease in PFT's. I would encourage you to do CPT but concentrate on the upper lobes unless there is a lower infection/cosilidation confirmed by an Xray.


Luke
 
S

sdelorenzo

Guest
Both of my children started cpt right away at one month old. They have had very little problems with their lungs and I am sure that the cpt/vest has really helped. I have learned to request medications and treatments from their doctors. I have had to request prescriptions for pulmozyme, the vest (started around 16 months old)and mucomyst. All preventative. The cf clinic doesn't care for your daughter like you do - you need to be the advocate. If I were you I would call your daughter's cf nurse and tell her that you would like to schedule an appointment with a respiratory therapist so you can see how to start cpt on your daughter asap. You do not need wait around until the doctors think it is time to start cpt. Who knows when that will be. Take a look on line at Horizon of Hope on the CF Foundation website. It goes into good detail about what is wrong with the cf lungs. It should encourage you as it did me why it is so important to keep the lungs clear (cpt) even if they there doesn't seem to be any lung issues. You are doing a great job by getting on line and learning what other doctors/parents do for their kids.
Sharon, mom of Sophia, 5 and Jack, 2 both with cf
 
M

mneville

Guest
Prevention is the key! We started CPT on Aidan (now 23 months) at
11 days old. We did it once a day for about 20 minutes  or as
long as he could tolerate. Aidan got the VEST at about 19 months
old and he now does an hour a day every day. We truly believe
prevention is the key. Keep his lungs healthy for as long as
possible...<br>
<br>
Megan
 
J

JRPandTJP

New member
we didn't start CPT until 2 years old. Our son had severe reflux though and our doctors were very concerned about aggravating that and causing lung damage. He is over that and not on any antacids now.

Not sure if we would have started sooner if he hadn't had reflux. He uses the Smart Vest now every day for 15 minutes. We may be going up to twice daily. He hasn't had any lung issues either.
 
A

amber682

New member
My son was diagnosed with CF at almost 4 mos. old while in the
hospital for a month already with RSV. They started sending in the
RT to do CPT the next day. (But he had also already
been having severe lung issues due to the RSV and they had
been suctioning him out a few times a day, sometimes more)
 
F

folione

New member
We started CPT for our son as soon as he was diagnosed at about 6 weeks. He's 3 now and a recent CT scan and bronchoscopy showed that he is starting to have a very small amount of lung junk even though up to now he has gotten "all clear" reports at every checkup and has never had any big troubles. I take this as an indication that prevention is essential even when the lungs don't seem to be havng trouble. He got a vest about 6 months ago and is much happier using it than being beat about.
 
R

Ratatosk

Administrator
Staff member
They suspected DS had CF shortly after he was born because of Meconium Illeus. They had RT using a percussor and nebs right after his surgery and once he was diagnosed at about 4-5 days, the RTs did CPT 4 times a day. We took over when he was about 1 1/2 weeks old. Our CF doctor in the city told us that CFers are born with normal lungs, but with time, infections, etc. the lungs become affected, so it's important to practice good lung care as early as possible. Two CPT treatments per day minimum --- 3 is what we do. More is better.

Our local clinic -- they tried to discourage us from using nebs and doing CPT because DS's lungs weren't affected yet. And at our Great Strides Wals this past spring there were three new parents who'd read an article on us and one went to the RT department and demanded to be taught CPT, another decided to go to Minneapolis for a second opinion. Funny thing is that the three moms of the newly diagnosed babies are all nurses -- two at the place that has the local CF clinic. There was even a quote in the hospital newsletter from the other new mom that "if her child's lungs become affected, that she was told that there are things they can do to take care of the problem." eeek!
 
A

anonymous

New member
My daughter was diagnosed at 3 mo. and we started CPT then (4 a day). She did have some lung involvment then. After 4 treatments a day for a year, we finally got her lung clear and are currently doing 2 a day (3 if she is sick). In my opinion it is never to early to start, starting while your child is very young, will make it easier as they get older since they will not know any different (it is just part of our day). At times she does not cooperate, but for a two year old I'd say she does pretty good : )

Hope everyone is doing well.
Greg
Dad to Maddie 2 1/2 w/CF
 
N

Nicole

New member
Just wanted to add that Danny had reflux as well and we still did CPT-- just not in any head down positions.
 
M

Mommafirst

Guest
I am soooo glad I posted this!!  I think I've been sitting
here in denial because the pulm made it sound like she was
genetically CF but not clinically CF.  But even if she'll
never get sick (what's the chance of that?)  I'd rather
protect her lungs.  <br>
<br>
Thank you all for your input, I called the CF Nurse today and am
waiting for a call back.  If I don't like their answer I might
consider going to the CF center in Cleveland (instead of here in
Akron) as its only an hour away.  I really liked the whole
team here, so I hope their answer is one I can understand and that
they will work with me.
 
A

amber682

New member
<b>Folione,</b><br>
"... and is much happier using it than being beat
about."<br>
That sentence cracked me up! It's a struggle with my son and that
just made me LOL!<img src="i/expressions/face-icon-small-happy.gif" border="0"><br>
 
G

Giggles

New member
I was diagnosed when I was 2 and my parents did chest PT twice a day until I was able to do it for myself twice a day and now I use the flutter and vest. I have always had some form of it done since diagnosis 2 X day and up to 4 times a day.



Jennifer 34 years old with CF and CFRD
 
K

kayleesgrandma

New member
Heather, not to knock your cf center, but...my cf center team consists of a pulmonologist, respiratory therapists. dietician, socialworker, and an internal medicine dr.--I think that's what he's called. I cannot believe the respiratory thrapist did not meet with you that first day and show you what to do, at least introduce himself. Please start the theraphy as soon as possible, and maybe consider your cf team as you mentioned. Good luck, and you'll learn so much from everyone here , I learned to ask some questions and got the genetic test--they hadn't even suggested it.
 
M

Mommafirst

Guest
Thanks Terri, but our CF team does have all those people.  We
didn't meet with the dietician or the RT at the initial meeting.
   I have since spoken with the dietician several
times on the phone though.  When we went to the initial
meeting, the pulm said that she is genetically CF, but her second
mutuation is very rare and the only known case was only diagnosed
because of CBAVD and was otherwise asymptomatic.   So he
was going to "withhold clinical diagnosis" for awhile.
 I spoke with the CF nurse yesterday and she said she would
have the pulm call me, but she felt very confident that he would be
more than willing to encourage airway clearance immediately and
that he likely would have had us start at her next appointment in
september.<br>
<br>
I really like our CF center, and part of the reason is the extreme
care they take in avoiding cross contamination.  By comparison
to some of the stories I've read on here, our place is excellent in
that regard.<br>
<br>
I appreciate everyone's input, its a new world to figure out and
having this resource is such a blessing.<br>
<br>
Heather<br>
Mom to Alyssa (6months w/cf -- w1282X and y1023c)<br>
and Richie (5) and Reese (almost 3) -- both currently being
tested<br>
<br>
 
A

anonymous

New member
We don't have a vest yet, but for those of you that do an hour on the vest, is it split into two 30 min. sessions, or just an hour total?

Thanks,
Sam
 
You must log in or register to reply here.
Top