Re: HOLY HOLY COW!!

[Guest guest]

In a message dated 3/27/2006 9:51:56 PM Central Standard Time,

osdbmom@... writes:

her), she could feasibly DIE before an ambulance could reach her. It

also stated that while the dr could certainly justify the purchase of

portable nebs for all FOUR kinney children, she is only asking for

one, and feels that is reasonable.

I got the denial letter today. I called the ins to see why they denied

it......and they said they didnt have enough proof that she could

unbelievable!!! My mouth just dropped to the floor!!!

[Guest guest]

In a message dated 3/27/2006 7:51:56 PM Pacific Standard Time,

osdbmom@... writes:

THEY WANT A LETTER FROM CONSUMERS POWERS STATING HOW OFTEN OUR POWER

IS LIKELY TO GO OUT IN THE NEXT YR.(NOT kidding, people)

They also want a detailed account of how many minutes Savannah spends

in a vehicle daily....and be able to prove it(how in the heck?)

Its like my part time job, dealing with, and HATING ins people.

Really, I fear for my blood pressure on days like this,I really do.

,

I'm really sorry, I went through something similar getting Bri's portable

Neb. It was ridiculous. Imagine how much an inpatient stay would cost?? Or

just an ER visit??

Hang in there--you're right!!

Sandi

[Guest guest]

Valarie,

I don't know where you saw that someone got a portable neb as I have

been off for a few days, but you can get them through insurance (at

least through Blue Cross). They paid 100% for one for my son and also

one for myself. They are really great. The doctor just had to fax a

letter explaining that it was needed and the company delivered them to

our house an hour after we got home from the doctor's visit. It was

super and workds nicely.

>

> So how DID you get the portable neb? Did you have to become homeless

> to do that? HOw the heck can I prove we might lose power, or might be

> in an area that has no outlet in the event of an emergency?

> Generally, in the mornings, we have up to 10 neb treatments(plus lung

> percussion therapy) to do before 730-----if I could get that darned

> portable we could do some of those in the car. there are a bazillion

> what ifs that should, in my opinion, would indicate an emergency

> situation----being in a car, being in a store(time difference between

> having a portable neb in my purse, vs. running to the car, running

> back in the store, finding an outlet,etc), field trips, going to the

> park, traveling to visit family members that dont live nearby or even

> out of state, getting stuck on the expressway in a traffic jam, on and

> on and on.

> But then, maybe they think my child is not entitled to do those things

> because she has these illnesses? Maybe they think she should have to

> stay home, be involved in no activities, never visit out of town or

> out of state family, or even go to walmart?

> valarie

>

[Guest guest]

Let me first say...I am in the same LOVE/HATE relationship with our

insurance company. We too have " the vest " (lung percussion

device). It is the most amazing blessing! Talk about putting a

stop to developing pneumonia. Agressive nebs and the vest are a God

send.

We too also have a portable Neb. I got ours years ago when a drug

store chain was going out of business. Oddly they salesmen did not

know what it was. So, he found another medical device like a blood

pressure machine or something. Basically he sold it to me for the

same cost. I think I payed less than $50 for it. That was at least

4 years ago. The benefits of it are AMAZING!!! However, I do have

one question for those of you that have them....can you use all meds

in it? I am not sure if it is just the one we have or all portable,

but our pulmo said we can not use Pulmocort, Tobi or " Mucomist " aka.

stinky mist. If it is just our type of machine, have they improved

and are there portable nebs now that you can use all RX in? If so

PLEASE email me at projectparker@... or post here. I

would really like to get one. The one we have you can at least get

a good Xopenex going until you can get home or to a treatment center

etc.

Thanks so much for starting this threadso we can see that we are not

alone in our fights with the INS. companies and find more

information on equiptment to help our kiddos.

Tiff

s Proud Mommy

>

> I feel ya. Last NOv, our pulmo decided that savannah needed a

portable

> nebulizer, and a lung percussion device to help her asthma. Its

> difficult at her small school to always find a plug for the big

> nebulizer, and often times while traveling its hard to stop and

find a

> plug. Her asthma gets so serious so fast, its important to always

have

> a power source.

> Well, it took until Jan to get the LPT device, and that was after

much

> dramatics and multiple phone calls from our nurse on our behalf.

> Still, though, no neb. waited till feb. In the first week of

March, I

> called again. The ins said the med equip store didnt fill out the

> forms properly. The med equip store said the ins was the hold up. I

> called the drs back. They called both and got the same answer. So,

our

> pulmo wrote a letter stating that savannahs asthma is so severe,

the

> delay in recieving this portable neb could increase her mortality

and

> they would be liable. this letter states that in the event of an

> asthma attack and no power source(inhalers dont work that well for

> her), she could feasibly DIE before an ambulance could reach her.

It

> also stated that while the dr could certainly justify the purchase

of

> portable nebs for all FOUR kinney children, she is only asking for

> one, and feels that is reasonable.

>

> I got the denial letter today. I called the ins to see why they

denied

> it......and they said they didnt have enough proof that she could

> possibly be away from a power source.

> THEY WANT A LETTER FROM CONSUMERS POWERS STATING HOW OFTEN OUR

POWER

> IS LIKELY TO GO OUT IN THE NEXT YR.(NOT kidding, people)

> They also want a detailed account of how many minutes Savannah

spends

> in a vehicle daily....and be able to prove it(how in the heck?)

>

> Its like my part time job, dealing with, and HATING ins people.

> Really, I fear for my blood pressure on days like this,I really

do.

> valarie

>

[Guest guest]

OH yeah...

One more thing. If you did not get the portable approved, have you

considered purchasing a power inverter for you vehicle. I know that

is not what you prefer, but it would work until you win your battle

with the insurance comepany.

Keep us posted and let us know if you are a winner!

Tiff

>

> So how DID you get the portable neb? Did you have to become

homeless

> to do that? HOw the heck can I prove we might lose power, or might

be

> in an area that has no outlet in the event of an emergency?

> Generally, in the mornings, we have up to 10 neb treatments(plus

lung

> percussion therapy) to do before 730-----if I could get that darned

> portable we could do some of those in the car. there are a

bazillion

> what ifs that should, in my opinion, would indicate an emergency

> situation----being in a car, being in a store(time difference

between

> having a portable neb in my purse, vs. running to the car, running

> back in the store, finding an outlet,etc), field trips, going to

the

> park, traveling to visit family members that dont live nearby or

even

> out of state, getting stuck on the expressway in a traffic jam, on

and

> on and on.

> But then, maybe they think my child is not entitled to do those

things

> because she has these illnesses? Maybe they think she should have

to

> stay home, be involved in no activities, never visit out of town or

> out of state family, or even go to walmart?

> valarie

>

[Guest guest]

In a message dated 3/28/2006 4:16:11 AM Pacific Standard Time,

osdbmom@... writes:

So how DID you get the portable neb? Did you have to become homeless

to do that? HOw the heck can I prove we might lose power, or might be

in an area that has no outlet in the event of an emergency?

,

I told them that Bri needed the Neb because his Ped was a two hour round

trip away. They couldn't argue with that. But they said they would " only pay

for one! "

Right after they agreed to purchase one for us, Ursula told the group that

you can get an attachment to use with your cigarette lighter that works with

the regular neb. The only drawback with that is that you cannot charge it

ahead of time like you can the portable Neb.

Sandi, Mom to --age 13--CVID

[Guest guest]

I have no earthly idea if this would work. But back when, I bought an

accessory for my breast pump where you put a bunch of batteries in this little

black

box, then plugged the box in to the breast pump and it ran on that. Maybe it

would work in other devices? Sure seems like someone would make an item like a

nebulizer more easily portable.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Hubby being a pilot and understanding various types of engines--- freaks

out if I try to plug things not made to run on the car battery to

the/through lighter. He has valid points, but since I am not a pilot and

don't get the surges and engines and yadda, yaddas...(you can hear when the

engine revs and changes) you can fry appliances and such by hooking them

up to one of the purchased " adapters " -- the car engine is not a

" controlled " power source and has surges and the like, and if it surges

while the thing is plugged in, it can fry it. I've never had trouble with

my cell phone and the boys have never had problems with their gameboy

things-but I am not sure I would take a change with durable medical

equipment. If you have one that has a surge protector? Perhaps.

When he gets back, I will ask him to explain it in terms that actually make

sense. He drives me nuts with this stuff and won't let me use the adapter

for certain items.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

osdbmom

Sent: Wednesday, March 29, 2006 12:55 PM

Subject: HOLY HOLY COW!!

back to the original post of this--a friend last night told me about

something she heard about some INSURANCE COMMISION--she had been

fighting for a prosthetic ear for her son for a YEAR(poor kid), and

once she learned of this magical commision, and spoke those magic

words, " fine, then I guess I will have to call the insurance commision "

he had approval for the ear in two days. What is this magical place,

and how do I find them?

Now to the current thread of this post---back when there was all the

hype about Y2K, we didnt go overboard, but we were a bit careful, as

in having bottled water(i was pregnant at the time and made my dr

promise to drive to my house and wait until the baby came!!LOL bit

hormonal)

but we also were concerned with other things and did buy a THING, dont

know the name of it, but its oh, about the size of a stereo speaker or

a small diaper bag. Its a power source thing, can be run in the car,

and it does hook to the neb with the cig. lighter as a source. Its

probably 15 pounds or so, and especially with the Envoy, which is the

only vehicle all 6 of us fit in, its difficult to plug it in the front

lighter, then pass it back to the kid needing it, and then they kinda

have to hold it up, or one of us has to climb back there to do it,and

its worse if its brennan needing it, cuz he is in the waaaay back in

the carseat. So, do I have an emergency back up thing? yes. Is it

plausible to drag the nebulizer and the hook up thing thru stores and

play areas and fun parks and zoos? I guess. But, I still have to drive

Savannah up a treatment at school most days, and it would be sooo nice

to just leave one there. It would be awesome to have something that

would just fit in my purse or the kids coat, and be able to pull it

out and use it with out it weighing a ton. and dang it, I WANT IT.I

WANT IT I WANT IT.

so there, wah.wah.wah.

valarie

_____

[Guest guest]

In a message dated 3/29/2006 10:17:24 AM Pacific Standard Time,

catholicmomof3@... writes:

you can fry appliances and such by hooking them

up to one of the purchased " adapters " -- the car engine is not a

" controlled " power source and has surges and the like, and if it surges

while the thing is plugged in, it can fry it.

I am told by my friend who is a mechanical engineer that it's okay if you use

the correct wattage for the adaptor/appliace--they must match. My new car

has two 120Vs--love that!

Sandi

[Guest guest]

Yeah-that is true. We have old cars. LOL That's why he makes sure to use

the specific adapter for the specific " appliance "

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

sassykay59@...

Sent: Wednesday, March 29, 2006 7:28 PM

Subject: Re: HOLY HOLY COW!!

In a message dated 3/29/2006 10:17:24 AM Pacific Standard Time,

catholicmomof3@... writes:

you can fry appliances and such by hooking them

up to one of the purchased " adapters " -- the car engine is not a

" controlled " power source and has surges and the like, and if it surges

while the thing is plugged in, it can fry it.

I am told by my friend who is a mechanical engineer that it's okay if you

use

the correct wattage for the adaptor/appliace--they must match. My new car

has two 120Vs--love that!

Sandi

_____