Vest pros and cons

[ktsmom]

My 3-year-old was diagnosed 18 days ago because of GI problems.
 Her first throat swab cultured PA (quite a shock, as she had
not exhibited any signs of respiratory symptoms).  We are on
Cipro and Zithromax, inhaled Tobi, Pulmozyne, Ursodiol (blood work
revealed high liver enzyme count), Creon of course, and Prevacid.
 They want to fit her for a vest tomorrow for her CPT.
 <br>
<br>
Thank goodness to all of you because I have been reading your
experiences since our diagnosis and it has given me the knowledge
and strength to realize that we CAN get through this.<br>
<br>
My question is about the vest - it seems most of you are doing the
manual CPT and I wonder why no vest, or what experiences have
people had with the vest?  I read somewhere that the vest
"had no proven value".  I understand the expense,
but my insurance will cover except for a 20% copay.<br>
<br>
Thanks, Dana<br>
Mom to lovely daughters, Katy (CF) and Kyra (will have her
sweat test on Wed; our fingers are crossed)

 

[Ratatosk]

Our CF doctor prefers manual CPT until DS is 4, so next spring... we'll be asking about the vest again. Our local clinic, doesn't encourage it at all 'cuz it's too much $$$. I kinda like doing manual CPT because I get to spend time hanging out with DS. Would be nice to have the vest for convenience sake. In July DH was out of town for a week, so I had to do CPT by myself and doing it one handed -- holding the nebulizer and beating him takes twice as long.

 

[coltsfan715]

I may be wrong on this, but I think manual chest pt is more common in younger CFers. Most younger kids have parent availability to do manual CPT. I know for me (I am 24) I prefer manual CPT (but I use a vest most of the time) as I feel with manual you can focus on certain "problem" areas and try your hardest to clear any mucus from those areas. The vest percusses you all around your chest/ribcage, so the concentration on certain areas is lacking.

Also I know for me, the vest is a blessing in many ways. As I was getting older my CPT was lacking because I had no one to do it. Both my parents worked, I worked, I went to school and our schedules were so conflicting that I did not get the chance to sit down with my mom for any good length of time for her to do CPT on a regular basis. The vest allows me to do CPT without being dependant on another person.

As for effectiveness. It varies. I have had to play with the settings and vary them from what my doctor prescribed because what my doctor wanted was not working for me. I was coughing up very little - to nothing. Since I have changed the settings over time I have found a good setting that helps me to clear a good amount of sputum. So it may take some fine tuning with the settings, but the vest can work and be effective.

Good Luck with getting the vest. Also Welcome to the site.

Lindsey

 

[anonymous]

My son was diagnosed when he was 2 1/2. At our first visit with the CF doc they ordered a vest for us. We have NEVER done CPT by hand.

Take Care,

Lisa, mom to 6 year old w/cf

 

[folione]

My son got a vest at about 3 years old and greatly prefers it to manual CPT; Even though we did manual CPT on him since birth, he never really got used to it. I'm glad we know how to do manual and we still do it whenever we get the chance or even just in passing whenever he sounds like he needs to cough. Aside from the fact that he'll sit for the full treatment with the vest, it also has the advantage of allowing him to do it by himself - a real plus considering the time crunch with nebulizers and meds and normal toddler activities.

There is more than one brand and design of vest on the market - I think a search of this web forum will get you plenty more discussion threads about them. Watch out for that 20% copayment: the price of the vest was a bit more than $16,000 last winter when we got the one for our son.

 

[Alyssa]

If you can afford the 20% get the vest now!!! Here's why:

Even if you still use manual CPT (all the time or part of the time) as your child gets older it will be really nice to have the option to do whichever one you want. It's really a matter of what works for the family and patient. Also, since my daughter was not diagnosed until she was a teenager, I never did manual CPT on her until she already had her "adult size" body -- manual CPT, for me, is very physically demanding -- my arms get tired. (correct me if I'm wrong guys) but it may be easier on a smaller body because you don't have to pound quite as hard or as many different places.

Now at age 18, my daughter always uses her vest, unless there is a particular area she wants me to work on then we will also do manual. But she gets far better consistent CPT out of the machine because she can do it independently. In some situations the manual CPT will always work better, but at least having the vest, you have the option of both.


The vest machine is the expensive part -- as the child grows and gets larger you just get a new size vest -- so I say strike now while the iron is hot by getting the vest and having it in your bag of tricks to use when you need to.
<b>
Yes, the vest is effective</b> (for most people). The way it was explained to us by our CF doc was there was <b>no measurable difference between all airway clearance devices (flutter, acapella, vest, hand held precursor or manual CPT)</b> so it was really a matter of what the patient preferred and what would give them the <b>highest compliance rate</b> -- if you have a child that will sit still with the vest on and watch TV but will not sit still for manual CPT, then it's better to do the vest.

I would get the vest for sure, now while you have insurance coverage that is willing to pay 80% -- many companies fight the purchase (we are currently in the appeal process with our company).

 

[anonymous]

My daughter is 3 1/2 with CF diagnosed before birth through genetic testing. We started chest PT when she was a newborn, around 10 days old or so. We (mostly me) did manual chest pt til my daughter was 2 1/2. She cultured MRSA and started having issues with coughing. Mer pulmonologist prescribed the VEST and our insurance covered it 100%. I highly recommend the VEST. My daughter does her VEST 3 times a day for 20 min at a time(she does it more when she is ill). It has made our family's life easier. For manual CPT, my daughter needed to be lying down(tough for a toddler to stay still). The vest you can sit up, she watching TV, we read to her, she sings, can play wtih dolls/toys(does the with grand-parents). Her friends come and sit next to her while she does the vest and she can play with them as well.

I still do manual CPT at night if she is up coughing, it relaxes her to sleep.

Some people findraise for the vest if their insurance won't cover it.

I see it as a worthwhile investment.

Good luck and feel free to ask more questions.

Rebecca(mom to Sammy 8 no CF and Maggie 3 1/2 with CF and starting nursery school tomorrow!)

 

[anonymous]

Thank you all for the great input.

I had done the math already; $16,000 x 20% = $3,200 which on top of everything else so far just about gets us to our annual max medical out of pocket, which = Free Ride for the rest of the year! Not sure whether to laugh or cry about that one!

However am feeling a little like a spoiled whiner when I think about those that want a vest but can't get one (remembering an earlier post from a mom of twins I believe in Canada).

KTs Mom

 

[anonymous]

KT's Mom,

You might want to speak with your CF clinic's social worker in regards to financial help to help cover costs of CF related meds, equipment etc. Depending on your annual income and whatever state you live in their are programs to ease the financial burden. You just need to ask(never know til you ask)

For example, our state has a program which cover's CF co-pays of meds, CF doc appointments, CF equipment not coverered by insurance, nutrtional supplements etc, CF vitamins. It is however, based on annual income. Something to think about though. Some drug companys also have helping hand programs. I'm sure other's on this site know more but it's very worth looking into.

Rebecca( mom to Sammy 8 no CF and MAggie 3 1/2 with CF)

 

[anonymous]

The social worker at our local CF clinic indicated she was going to be going attending a workshop sponsored by one of the vest companies regarding financial assistance... to help people with copays. We'd heard from the RTs that DS could possibly get the vest if he was big enough by age 1 1/2 or 2, so we set aside $1000 and then a relative set aside another $2000, so they could make sure when the time came, he'd be able to get the vest. We've got it gathering interest right now in his future "health savings account". Liza aka rataosk

 

[amber682]

I'm really wanting a vest for my son, but I asked at last visit and the RT said they usually wait until age 3 (his last cf doc said age 2). But she also said they like to get the kids off of manual cpt as soon as possible. Sort of contradictory, right?
Anyway, I can't imagine having to do cpt on an adult, my arms get so tired doing just the 6 positions we do on Vinny. As far as no proven value goes, I've also read this when doing some research on the topic. (posted by Alyssa)

<div class="FTQUOTE"><begin quote>Yes, the vest is effective (for most people). The way it was explained to us by our CF doc was there was no measurable difference between all airway clearance devices (flutter, acapella, vest, hand held precursor or manual CPT) so it was really a matter of what the patient preferred and what would give them the highest compliance rate </end quote></div>

I also read that the vest is atleast as effective as vigorous manual cpt done by a professional. I'm by no means a pro, and not sure if I do it as vigorous as they would. I feel in my case the vest would be more effective. I also feel Vinny wouldn't fight as bad with the vest, making PT more effective.

 

[anonymous]

My daughter is 3 and has been using the Vest for over a year. She wasn't dx until after her first birthday so we didn't start CPT until she was almost 18 months and would hardly cooperate enough to get a decent 10 minutes of CPT in so the Vest has been great.

The Vest company will offer your insurance a discount if they pay for it up front (rather than montly payments) which would make your co-pay less.

I hope she gets rid of the PA and I also hope Kyra's sweat test is NEGATIVE! Please let us know.

Best Wishes!
Kelli - mom to Sydney 3wcf & Andrew 4 months nocf

 

[tleigh]

as an adult, i use both the vest and my husband does manual cpt.
 growing up my mom would do cpt on me twice a day (but the
vest wasn't available at that time).  i would encourage you to
learn manual cpt.  I find when i am sick or on iv's that the
vest is uncomfortable or is hard for me to tolerate.
 otherwise, i am very thankful for it b/c it allows me to be
independent.

 

[anonymous]

This is ktsmom; I can't get my stupid login to work but I wanted to follow up;

Thanks to everyone for the advice, especially the financial help ideas and also to Kelli for the pay for the vest up front tip, where you get it at a discounted price.

Also - my oldest daughter's sweat test was negative!! I just about collapsed right there in the doc's office with relief. We are only 21 days into Katy's diagnosis so I just keep bracing myself for the next piece of devasting news but looks like that will have to wait for another day!

We still don't have the genetic results in but since her pancreas, lungs, and liver are already affected I'm not even putting much significance on that anymore.

Thanks again to all!

Dana
Mom to Katy (cf) and Kyra (no cf)

 

[anonymous]

Just wanted to say great news on the negative sweat test for your daughter. I remember when my older son was sweat tested and it came back negative, I just cried. The pediatrician on the phone, kept saying this is GOOD news. My tears were of relief.

Rebecca(mom to Sammy 8 no CF and Maggie 3 1/2 CF)

 

[Alyssa]

Dana -- just checking with you about the negative sweat test number --does your other daughter have any symptoms?

I only ask because there are a lot of people (my kids included) that fall into that normal/boarderline area (high 30's - 60's) that have been told they do not have CF, only to find out later (by genetic test) that they do.

Did your doctor tell you the number? If it's in the high 30's you might want to still pursue genetic testing just to make sure.

 

[anonymous]

My son just got the Respirtech vest. Dr. Warwick invented the Hill-rom vest a number of years ago. The Respirtech is his new company with what he thinks is a better vest. My children have both and they agree. Ilike it because it programmable to change frequencies every few seconds to get a better treatment. The hoses also don't pop off. Anyway, one of the reasons why we got it is that it is cheaper - $12,900. We too had to pay for 15% of it. Their web address is <a target=_blank class=ftalternatingbarlinklarge href="http://respirtech.com/.
">http://respirtech.com/.
</a>Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[ktsmom]

Yes Alyssa, he did tell me her number and it was 37.  I have
the same concern you do except she does not exhibit any symptoms at
all and never has (she is 6).  <br>
<br>
She has no GI symptoms and she is actually overweight; she has had
just a few ear and sinus infections in her life.  However, she
does something that my younger daughter does, which is get really
red in the face when she gets hot from playing outside.
 I mean really, really red.  And when my younger daughter
was diagnosed I thought of that trait that they share.  Is it
because she is not sweating efficiently?  Maybe a stupid
question, I just don't know.<br>
<br>
But, since her negative sweat test on Wednesday I am trying to turn
these questions off.  I intend to talk to our CF doc about my
concerns at our next visit, and once we get the genetic results on
my CF'er maybe go ahead and get Kyra's genetics run.  We knew
we would do it at some point so that we would know if she was a
carrier, but we were going to wait until she was older.<br>
<br>
I just can't put energy into trying to prove Kyra has CF when right
now I barely have energy to deal with the first diagnosis.
 But it is certainly at the back of my mind.  I'm going
to read your blog and check out your situation and how you knew
about your own kids.<br>
<br>
thanks,<br>
Dana<br>
Mom to Katy, 3, CF; and Kyra. 6, no CF; and that's my final answer
<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>

 

[amber682]

<div class="FTQUOTE"><begin quote> However, she does something that my younger daughter does, which is get really red in the face when she gets hot from playing outside. I mean really, really red. And when my younger daughter was diagnosed I thought of that trait that they share. Is it because she is not sweating efficiently? Maybe a stupid question, I just don't know.</end quote></div>

A little off-topic, but I just thought I'd let you know there was a thread on this once, maybe if you want you can do a search to pull up the thread. My son with cf gets beat red when he's hot and especially if he's running around outside. His face gets very flushed. But I'm just as bad as he is, and I don't have cf. When I'm nervous or really hot my face gets really red and blotchy. I think it's just because we have very fair skin. My mom has very light skin too, and this happens to her also, but not as bad as with me or my son.

Anyways, I typed in "blotchy" under search, and it was the first thread on the list.

 

[Emily65Roses]

I didn't read the responses, but I thought I'd put this out there real quick:

If you are considering the vest, wait until she's a little older and can decide for herself on it. It's a VERY expensive piece of equipment, and some people flat-out hated it. You should have her try one before you seek to purchase one. I tried one. HATED IT. Not because it was time-consuming, or medical or whatever. I had "real" reasons, not whiny ones. First, it made me nauseous. And this was even before I started throwing up from coughing. If I was using the vest now, I'd be throwing up twice as often as I currently do. Second, it is NOT MADE FOR WOMEN. Once your daughter becomes older and grows breasts, the vest will NOT be her friend. It squished my boobs (and I might add, I have rather small boobs, so it's not like I just couldn't use it because I'm a DDD, I'm only a 34 B), and I refused to use it. Luckily my parents didn't buy one. But keep these things in mind before you spend that kind of money.