Vest system

hcs_mom · #1 01-08-2009, 07:30 PM

Hannah's pulmonary doc has recommended the vest airway clearance system. I wondered about this a while back, but just didn't ask...

I am willing to try anything he thinks might improve her overall pulmonary status, including airway clearance. And this wouldn't just be due to RSV, but overall we believe there are clearance issues.

So, for anyone who has tried or is currently using, do you mind offering some answers?

1. How long has/did your child use it?

2. Are you still currently using it? If not, why not?

3. What improvements, if any, have you seen?

4. Was it easy for your child to tolerate? Was there any adjustment?

5. Any other comments, etc.

6. Am I remembering correctly that someone's insurance denied it, but the company (vest manufacturer) took over on the appeals and insurance finally paid for it?

I just sent in her chest measurement this morning. I think the pulmonary nurse said it would take about a week or so to get it.

I know this is a good thing to try. But it finally feels like everyone is admitting there are chronic lung issues that need to be addressed, despite the fact that things appear "mild". When she called yesterday, I really felt like I'd been kicked in the stomach. But again, if it helps, even if it doesn't, I think it's still worth a trial.

Jennie

Ann · #2 01-08-2009, 08:43 PM

Jennie, our situation is completely different for many reasons. Jack has a neuromuscular disease and cannot cough at all, plus he can't "fight" when we put the Vest on him. That said, I think the Vest is a great device and has no doubt played a big part in keeping Jack's lungs clear and him healthy and out of the hospital. Our insurance (United Healthcare) denied it, but my husband's employer was self-funded and, on appeal, they agreed to pay for it. At the time, insurance said there was no documentation that established the Vest was beneficial for kids with MD so they wouldn't cover it. (you know how much they like to say if there is no study and no published journal article, then it's not been proven to be medically necessary.) I think just recently, there has been research and a report published that shows how the Vest helps kids with muscular dystrophy. Hopefully, there is research out there to show how it helps kids with BPD. If there is research out there, the Vest company will know about it.

Jack uses the Vest every day (whether he needs it or not) and he receives his daily Pulmicort treatment at the same time he is getting the Vest treatment.

hcs_mom · #3 01-09-2009, 05:37 AM

Ann,

Thanks a bunch. Hannah does also have bronchiactesis (confirmed by high resolution CT), which is on the list of dx that you need in order for insurance to pay.

I've gotten my hopes up about several different things, and while we've seen modest improvement, there are still enough issues to warrant additional therapies, etc. Your response is just what I'm looking for...real experience.

Jennie

scm · #4 01-09-2009, 09:09 AM

Jennie-

what were your pulmo's thoughts on CPAP for Hannah? Since she continues to have issues with clearance and lung volumes maybe now would be the time to try...

Though Max needs it everynight for his airway issues there has been a noticable improvement in his lungs. He's finally off of O2 even at night and has handled several illnesses with minimal meds and distress.

Is she still in the collar at night? How does she sleep at night normally?

How is she feeling after the RSV??

Jacob's Mom · #5 01-09-2009, 09:38 AM

Quote:

Originally Posted by hcs_mom

Am I remembering correctly that someone's insurance denied it, but the company (vest manufacturer) took over on the appeals and insurance finally paid for it?

That was us. Actually, insurance didn't concede that it was a covered service because there were no studies documenting the benefits for kids with MTM. However, the Vest company assigned to us a nurse case manager who took over the appeals for us.

Jacob used the Vest regulary (every day) for 2-3 years. Now, he just uses it when he is congested, sick, or getting sick and it works very well.

HTH!

Mom2TwinsPlus1 · #6 01-09-2009, 11:15 AM

My Mother uses the vest for bronchiactesis and used to use it daily but now its every few days. I know I am not much help but she said its not bothersome at all the hardest part is sitting still for that long. Maybe a movie or game to distract would be good? My niece tried my mom's on with no issue and thought it was "funny".

My mom got hers several years back, her insurance only covered a portion and she paid $8,000 out of pocket for it, and she said its worth every cent. I think now more insurance cover them, and the price is cheaper

Gretchen(Celia's mom) · #7 01-10-2009, 09:45 AM

I replied to your thread about this over on P2P.

hcs_mom · #8 01-10-2009, 04:29 PM

Quote:

Originally Posted by scm

Jennie-

what were your pulmo's thoughts on CPAP for Hannah? Since she continues to have issues with clearance and lung volumes maybe now would be the time to try...

Though Max needs it everynight for his airway issues there has been a noticable improvement in his lungs. He's finally off of O2 even at night and has handled several illnesses with minimal meds and distress.

Is she still in the collar at night? How does she sleep at night normally?

How is she feeling after the RSV??

We haven't seen the pulmo in clinic. We had a decent stretch there for a while. And yes, she is still sleeping in the c-collar. I really do need to ask about this...

She is still struggling with RSV. I think she is past the worst of it, but she is still on continuous oxygen. This has really knocked her down. So, I'm back to my same questions...Are her lungs really that bad? Should we revisit immune testing? She never got REALLY stridorous or had a lot of retractions so I don't think that tweaking the airway would provide significant improvement. And, her ENT has said he would prefer to hold off on any intervention as he is afraid at some point, the tissue that he works on will end up weaker than before. I really would like to avoid another LTP if possible.

I need to PM you with some questions about CPAP. I really need to accept that these issues are chronic and are not going to resolve. I really think that's why I haven't asked about the CPAP...same reason I didn't ask about the vest before.

Jennie