Just have a question about the vest. We were told that sometime between one and two years old our son would be able to get a vest. I know that it also depends on weight. Just wondering what time frame everyone else's kids got one and if they like it. Sounds silly but in some wierd way I think I might miss doing manual CPT. It has been a real bonding thing for us. We have been doing it since he was a week old. Its our cuddle time. How strange am I? :)

I am Tommy, a 16 year old with CF. You are not strange at all, my mom said the same thing to me when I got my vest. With the weight limit, I'm not too sure, I got mine when I was about 13-14, but I was in the vest study. My mom's problem with manual CPT is that I am bigger and taller than her now, and it is hard to flip me into all the different positions.

We were told about 2 years by the respiratory therapists. At our local CF clinic the social worker told us there are also some programs to help defray the copay costs. Think our portion of the $16,000 total cost would be about 3-4 thousand. But at our regular CF appointment in the City last month, DS's doctor said age 4. I do know of a three year old that just got a vest and he LOVES it. Actually falls asleep during treatments. DS is so relaxed with his CPT, which we do three times a day that I'm almost afraid to switch to the vest -- but it'll really help give us freedom, so we can leave DS overnight with his grandparents who don't like doing CPT 'cuz they think it hurts him. I also know of a parent who uses both. I think early morning, so their child can get a little bit more sleep, not sure what the reasoning is for it.

We have military insurance, Tricare. I think, but not positive, that they will pay for all of the cost. They are a pain in the rear end to work with but we have been lucky in that we have not had to pay a single bill. My son also falls asleep during his treatments. But like you said, it will free us up a bit more.

We took DS to a new CF clinic last week and the resp therapist said that getting the vest is based on chest measurement. DS is almost there, he's 17 mo., so she said that when we come in for his next visit in Jan she will order the vest for him. Yeah!

Our doctor told me when she is about 3 she'll get the vest. I'll have to ask about the chest measurment at our next visit. I wondered about the weight thing myself.

This is the 3rd CF clinic that we've been to (we're military, move alot) and it seems as though the RT's think that the vest is greatand are all for it, but the drs prefer manual CPT.

Hi dannysmom,

My CFer is a Dan as well, but he's 16 years old. He got his vest around age 13. We are military as well, and yes Tricare paid for it all. The vest is garanteed for life, so if anything goes wrong with it, all you have to do is call the company and they send you replacement stuff. When Dan grew to the next size of vest, they just asked me to measure his chest and they sent out the next bigger size. Now that he's a teenager and so independent, I really like the vest. He can do it completely on his own. In fact in the morning, he normally sleeps through his session.

If you have any more questions feel free to give me a shout.

Deb

The Vest is great for freeing up time, but... My five year old hates it. She says that it hurts her tummy and she can't stand it. Of course she wasn't a fan of manual CPT either, but she likes it better than the vest. She got hers when she was four. She is now five. FYI ...It is not made to be very comfortable when wearing it, that's just my opinion. It also cannot target specific problem areas as well as one can with CPT, or so I have been told on several other lists. Just to let you all know The Vest may not be as magical as it seems for the younger less cooperative children. ;)

SlyGirl28,

We took Danny to CF clinic yesterday and they ordered the vest for him. Therapist told me that they have a 30 day in home trial to see how it works out for you. My question is about Tricare--did they fight you about paying for the vest? Did you have to get any special referral for it or anything?

Anyway, he tried it our for a few minutes in the drs office and he just sat there and didn't know what to think. We'll see how he likes it in his home environment when we get it. My other 2 kids wanted to try it though!

DS doesn't have a vest yet either. His CF doctor prefers CPT until about the age of 4. We figure next clinic appointment we'll bring it up. It'll help free up some time so maybe DS can have overnight trips to grandma and grandpas house.

We do CPT three times a day and right now DS sometimes falls asleep when I do the night cpt or he sleeps through the morning one. I was concerned that with the vest he might not be able to sleep in and extra half hour like he does now, but I've heard from several people that their children have also fallen asleep while using the vest or that a parent will strap the child into the vest at 5:30 in the morning and the kid just sleeps right thru it.

Oh, and I've heard the new vest has a timer, too.

If we had to pay for a portion of the vest I don't know if we'd be pushing for it this early but since our insurance covers it we thought the earlier he gets used to it the better. Also since we are military, we don't live by any family and if my husband deploys, I would be the one doing CPT for 4 months or so. We have two other kids and it seems as if there is never enough time in the day to get everything done. I'm hoping he'll like the vest and we can be freed up a little more. I'm not sure of all the particulars, but it is my understanding that they send a rep out to your home to show you all you need to know about using it. I'll post more when we actually get one.

Caleb is 4 and he got his vest when he was almost 3 yrs old. he usually uses it 2 times a day for 30 mins unless he is sick then we do it more. we didnt have any problems with insurance paying for it, in fact it was mailed to us and got a phone call from hillrom (vest company) and they explained how to use it and i havent heard from them since. its a great thing to have. i too miss the manual pt, but now i can just do both :)... makes it so much easier if i want to get out of the house i just pack it up and go.

Melissa mom to dylan 7 no cf and caleb 4wcf diagnosed at 7 months DF508-G524X

Hello everyone,
This is my first post on here. I have a 12 month old daughter with CF and live in Britain. The vest has only just become available for us here at a huge cost of £11,500. We do not have insurance policies like in the US so would have to fund this ourselves if we considered purchase. I would really appreciate your thoughts on the vest. Do you think it is better than normal chest percussion or not?

Thank you

Luise :wave:

The vest makes it more convenient for parents. Frees up time they spend doing cpt. Currently for us one of us does CPT and the other holds the nebs; however, if one of us is out of town or at a meeting and we have to do it by ourselves, then it takes twice as long. And if DS gets squirrely and acts up, that's also time consuming wrestling him.

For the most part I've heard very favorable reviews. Some people feel the vest really gets stuff up and out that they couldn't before. Others feel it's uncomfortable.

Our CF doctor believes that manual CPT is better on very young children, so we haven't pushed the issue, yet. And I enjoy the time I spend with DS, talking to him while we do CPT. But it'd be nice if DS could have some overnights with his grandparents. MIL knows how to do CPT, but she doesn't do it hard enough.

Hello Ratatosk :wave:
Thank you for your reply and information on the vest. I think you are right, maybe we should wait a while before opting for the vest as our lpwcf is only 12 months old. I agree with you about manual chest percussion being a good bonding time and we will stick with that for now. I was just concerned that if the vest was better then our daughter was missing out on improved treatment and care. We will watch with interest developments in this area!

Cheers,

Luise :)

Still waiting for the vest! I guess it's a long process to get the authorization and all the papers needed for the insurance. Because of the type of insurance we have we were not able to take advantage of the 30 day in home trial period. We have to wait for our insurance to pay before they will deliver it to us.

Another update about the vest....we got a denial letter from our insurance. Basically after alot of calling our insurance, our medical benefits advisor was able to speak to the medical director who denied the authorization. She said that he said that he did not feel that DS needs the vest, because of his age (21 mo) and the fact that there were no labs to state that he needs anything more than manual CPT. (no worsening PFT's) In his opinion, manual CPT is working fine and he felt DS was too young. That got me very upset. If resp. thinks it is a good idea and all his CF drs agree who is this guy to say no? CPT may be going okay but has he ever tried to get a toddler to stay in the desired position? It is beginning to become a battle of wills. Does he know what its like to have a child with extra needs? We have not been able to leave him for even a night beacuse no one else knows how to do CPT. Anyway, so we have to file an appeal and see where that goes but that can take up to another 5 months. Just so frustrating. It is a covered benefit and I don't understand what the difference is if they pay for it now or a few years down the road. If anyone has any good info about why the vest is better than CPT please pass it along.

In our case, our primary CF doctor won't write a prescription until DS is older -- he told us 4. When DS was first diagnosed we were told by the RTs and other doctors that usually it's 2 years and or if they're big enough. I know of a family who got the vest when DD was 19 months old because of lung inflammation issues -- but they go to the U of MN clinic and we go elsewhere.

Our last local clinic appointment the social worker indicated she was going to a workshop about assistance programs for the vest -- to help with copays, etc. And our doctor mentioned he has a friend who runs the insurance department with one of the vest companies, to help patients get benefits.

I would contact your CF clinic -- social worker, etc. and see what they suggest. If they really feel DS needs the vest at this time, then they should be able to point you in the right direction. May take a nicely worded letter from an attorney to explain the benefits of the vest.

Hey there!
We are also active military & have Tricare. My daughter, Erin, is 4 and she got the vest right before she turned 2. We didn't have a problem with Tricare because of the way the doctor worded the request. Erin was colonized with a pseudomonas at the time and she had been hospitalized once before we knew about CF & he used that in his request. Is Danny colonized or has he been colonized with a pseudomona? Hospitalization? The request letter was pretty upsetting, but the docs assured us that is how they have to word it to get them to pay for it at such a young age.

Karon

Danny has never had pseudomona and his only hopitalization was after birth for the meconium illeus and the illeostomy take-down.

There's a lady by the name of Julie who is in the Navy, whose husband has the vest and has CF -- they're on tricare. She left a message at cysticfibrosis to contact her and she might have some advice.

We had a simlar situation with synagis shots and it took an attorney's lette to get approval. Basically went into detail about how as parents we have enough to worry about... Maybe some other people can give you an idea what they wrote in their appeal letters.

I have found that board, thanks. A nurse from Hill-Rom contacted me on Fri about filing an appeal. She thinks that the best was to go is to use DS reflux as an issue. We can't do CPT properly beacuse he can't be head down, etc... She wants his pulmonologist to write a letter, and us to write a letter also. The nurse said that she will be sending me some letters that other parents have used to get approved and if we need to use something from them we can. She said that its very important not to mention anything about convienence. That is an automatic denial. They don't care anything about that. They basically have said that right now it would be considered a "luxury" for him to get a vest. So the issue is not if Tricare will cover it, but rather if Danny medically needs it right now. So I guess we'll go from there and see what happens. Thanks for the help!

I would follow the advice of the Hill Rom nurse...they want the money :) & have probably worked tons of cases. From your post, I remember writing a letter as well.

On another note, does Danny need dietary supplements? Erin uses 2-4 Pediasures a day. We paid out of pocket for a year, but found out that Tricare will pay for it. If you need info, just let me know. It has to be a prescription from you PCM & then they work it from there.

Good luck on the vest issue,
Karon

I filled out and mailed the request for records from DS birth and hospital stay so the nurse at Hill-Rom can look over them and find the report of his upper GI study and anything else she might need. We have until June 7th to get the appeal back to insurance. DS goes to CF clinic on 4/18 so we will talk more with his pulmonogist and RT.

karon72--right now he does not need any supplements but thanks for the heads-up. When he was an infant the drs put him on Vivonex formula and then Pregestimil and Tricare paid for both of those which was nice. Same deal, had to have a RX.

Ratatosk--just curious why you don't go to U of M? We are from Mpls and our old pulmo. kept telling us how wonderful their pediatric CF program is. She kept trying to get us to move back there. Of course, there are no AF bases there, so not an option right now.

When DS was born, he had to be lifeflighted to Minneapolis Children's Hospital, which also has a branch of the U of MN CF Clinic. When the test results came back that DS had CF, the neonatologist in the NICU called a CF doctors to come in and talk to us about CF. One thing he did was have a 17 year old who was being treated with IV's for a staph infection on the CF floor come down and show off -- show us that CF wasn't a death sentence. Things just clicked and we felt more comfortable with that doctor - plus we met a number of staff members from that clinic.

We go to a local non-accredited clinic where we live twice a year. Just to develop a rapport with the local doctors and they'll do his labs and xrays once a year, cultures twice a year and we have the results available in time for his next CF clinic appointment in the cities.

I know some people in Grand Forks who go to U of M, a Fargo lady goes to the accreditted Bismarck Clinic, a lady from Hillsboro goes to a nonaccredited CF clinic at the Mayo Clinic in Rochester and a guy who had a lung transplant at U of M goes there, but locally sees a doctor who has two children of his own wcf.

Is Grand Forks AFB and option -- that's about a 4 1/2 hour drive? My husband's cousin just retired from being a Chief Msgt there. They'd been in Minot years ago and kept asking to be stationed back there or GFK.

Not sure how far Omaha is from Minneapolis -- probably 5-6 hours. I know there are a lot of people who go to Minneapolis from all over the country -- when I looked them up once they had a map showing where all their patients come from.

Neither one of us has any desire to go to Grand Forks or Minot. Because of Danny's CF we have been put into a program called the Exceptional Family Member Program. It basically is so that they can not station my husband somewhere where Danny won't be able to receive the care he needs. Also there are limits on how far away you can be from the treatment center. Basically they can't send us to any bases that are in the middle or nowhere, need to be somewhat close to a large city. Thats a good thing--before we had Danny we had been in some pretty bad places.

I know of someone who is in a similar situation, who is from ND; however, currently they're in vegas and she said the accredited cf clinic is horrible. Don't practice germ protocol (community waiting room), etc. So she flys to a different clinic. But says it's a pain 'cuz she can't find anyone locally to treat her.

Thats why we stopped going to UC Davis, it was horrible! When Danny was born we were in UT and the clinic there was great, they gowned, masked, gloved, everything. Not at UC Davis, they didn't even have a nurse or RT.

By the way Ratatosk--are you Liza?

Liza -- that's me. Ratatosk is the squirrel in the tree of life from old Norse mythology. A bunch of us in college took a history class on it and all we all gave ourselves norse names. We're sooo weird! :)

Hopefully you'll get the vest soon. I've heard it's a wonderul convenience. Fortunately for us, we're able to make regular CPT work 'cuz there's usually someone around to help if one of us is out of town, so we're not too concerned about waiting until DS is a little older. His primary physician recommended age 4 for him. If it becomes an issue we'll push for it.

Nice to "meet" you! I'm Nicole. I have always enjoyed reading your posts, our kids seem to have alot of similarities. Your advice is always helpful too.

I got a call from Hill-Rom today. They are going to ship out the vest anyway. They think that we will have a better appeal case if Danny is already using the vest. We should have it within a week. So then we can try it out and see if he even likes it. Hopefully it will help and we can get it authorized!

Wooo Hooo! How exciting! I've heard Hill-Rom has a separate department to deal just with insurance issues, so I'm sure they know all the ins and outs.

Hopefully your son will LOVE the vest and it'll free up some time for you. I know of a couple of people whose children get so relaxed doing the vest they fall asleep.

Last week we watched Little People videos and Scooby Doo during ds's "beatment". This week we're on a Toy Story 2 and Chicken Little kick. Oh well, it's better than having to watch the purple dinosaur.

L

For some odd reason Danny likes to watch the Brady Bunch during therapy! We have season 1 and 2 on DVD. Go figure!

We received our vest almost 2 weeks ago and Danny really likes it. It has been really nice for us too. :) HE likes that he can play while he is getting his therapy and he likes to hear how his voice sounds. We still do 2 treatments per day 20 min.each. We are still in the process of gathering our info for the appeal. I so hope that they will authorize it!