Re: IVIG question

[Guest guest]

Hi ,

What about a " Beckett " waiver/program or a children's special needs

program? I know that the Beckett waiver does not qualify or disqualify

based on income, but rather on how much medical care the child needs & what

it takes to be able to care for the child in his/her own home environment.

It does involve a fair amount of paperwork, but is relatively easy to

qualify for, at least it was years ago when Wade was on it. We lived in

Georgia then & he had not even been diagnosed with PID. He qualified based

on his asthma & recurrent infections. This is a state program & is often

called by a different name , but if you search under " Beckett Waiver " ,

I think you'll find a place to start. Some/most states also have a " special

children's health insurance " supplemental program, which is also based on

medical qualifiers, not financial. Dale also just emailed a list of places

to get help for various isseues & I believe there were one or two

organizations on that list that would help with subsidizing medication

costs....check the archives. If you can't find it, let me know & I'll fax it

to you, as I printed it for future reference.

Hope your friend finds something that will help him & his daughter!

Hugs to Autumn, Tabitha & Duncan!

Beth, Mom to Wade,15, CVID,Asthma,GERD,JRA,ADD,Chronic Sinusitis,IVIG

& FINALLY home recovering from Aseptic Meningitis

>From: " sandra8376 " <sandraray@...>

>Reply-

>

>Subject: IVIG Question

>Date: Fri, 26 Apr 2002 04:27:08 -0000

>

>HI! After spending the whole day scanning & killing viruses at work,

>my computer contractor & I were discussing his daughter. Turns out

>yesterday she had her first infusion of IVIG! I knew she had serious

>asthma, allergies, etc., but not PID.

>

>Anyway, turns out his insurance is refusing coverage. . .can they do

>that? He's a small business owner & can't really afford the cost of

>treatments every 3-4 weeks. We all know how expensive it is.

>

>Is there any safety net program out there that will help him pay the

>cost of the treatments? I'm passing along info about this list, but

>don't know if he'll join. . .he's a single parent also. Being a

>business owner, he doesn't qualify for CHIP or even the state

>sponsored programs. Anyone have any other options? Any

>pharmaceutical companies (Baxter?) that will help offset the cost?

>

>Thanks!

>

> Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def.,

>asthma, chronic sinusitis, and allergies), and Duncan (11 months)

>

_________________________________________________________________

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[Guest guest]

I do not know why he would not qualify for Chips unless he makes too much

money. I have been told here that I just need to show reduced income for one

month and I can get on for a year. BARBIE

[Guest guest]

, I would first tell him to shop around for another way to get them

infused. Our infusion only costs about $1850.00 for 15gms per 3weeks. We have

it infused at the doctors office. I have heard some people are paying as much

as $7000.00. We are fortunate to only pay a $5.00 copay because it is done in

the Drs. office. Secondly, I would have him call the Insurance commissioners

office to find out what his rights are in your state to appeal the decision

of his plan. Depending on his insurance plan there may be a way to appeal

their decision if it is ordered through the physician and is considered

medically necessary. He has a limited time to do so but many times they will

approve it if they can prove that it is less expensive than the alternatives

of serious medical consequences. (Meningitis, sepsis etc.).

Medical can be catostrophic as we all know. We cannot leave WA state because

we have no preexisting clauses allowed here and with Lucas and s and

my medical issues we might as well just work to pay for our medical bills. As

an afterthought you might see if you have a SHIBA office connected to your

Office of the Insurance Commissioner. It is Statewide Health Insurance

Benifit Advocates. They go to bat to help you get insurance Co.pay bills when

they are suppose to. I think it is Federal. BARBIE

[Guest guest]

He makes too much. . .way too much. But still, it's unfair for insurance to

deny coverage, imo. . .it costs $4,000 for him to private pay the infusions.

The dr ordered 6 months worth to see if they would help. Is this normal? I

thought that once treatment was started, it didn't stop for quite some time?

Help me here. . .since we don't do IVIG, I have no basis here for

comparison. Teach me to hit delete when I shouldn't!

Ray, mother to Tabitha (age 6), Autumn, age 4 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan (11 months)

> I do not know why he would not qualify for Chips unless he makes too much

> money. I have been told here that I just need to show reduced income for

one

> month and I can get on for a year. BARBIE

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

, I'm sorry has been sick again. It's seems especially hard

to take when they have been well for awhile. We DO get our hopes up and

then they come crashing down. But, yes, there will always be infections

that get ahead of our kids, and there are several reasons why that may

happen.

#1 IVIG only replaces IgG - so if your daughter is CVID, that means

she's missing at least one other Ig - either A or M or D or E. Katy is

missing all the rest, so she's wide open to a lot of things. And she

may be weaker in other related systems like the complement system or

T-cell function than other kids.

#2 For any person who has had 1 pneumonia, they carry a greater risk of

catching it again just because the lungs become weakened. For a person

who has had multiple pneumonias -- that increased risk is multiplied.

So, if has had a lot of pneumonias then she may be more " prone " to

pneumonias than the general population. But, the longer she can go

between pneumonias -- the greater the chance of healing the lungs and

making them strong enough to withstand attacks.

#3 One of the goals of IVIG is to stop this vicious cycle of

pneumonias. In a survey done in 1999 by IDF, they found that pneumonias

dropped from 51% before diagnosis to 27% afterward. So, the use of IVIG

cut pneumonias in half.

#4 If you've only been on IVIG for 18 months, there's still room for

improvement in her overall health. Katy continued to improve for

approximately 3 years before she sorta' plateaued at her present level.

#5 Also, and this is just my theory -- but IVIG contains other people's

antibodies, right? -- and the production time means that the delay is

almost a year. That means that the current round of viruses that are

going around school and church and work are NOT included in today's dose

of IVIG. I believe that that's why you sometimes encounter a rash of

viruses back to back - because the IVIG did not contain those

antibodies. Also, if her body could make antibodies -- then she would

only catch a particular virus once -- but she can't -- so she has the

wonderful capability of catching the same viruses repeatedly.

So hang in there. IVIG is not a cure-all, it won't cover IgA or IgM or

IgD related stuff, but it should mean that overall she stays healthier.

But, that's why all of us say " we're waiting for the other shoe to

fall " . Even when our kids are well, we're still watching, waiting,

knowing that just around the corner is another biggie. After a few

months you relax and wham! it hits you and scares the daylights out of

you. IVIG for CVID will never be that complete of protection.

Learning to live embracing life and all that it holds is the key. I

walk with my hand in God's for a very good reason -- nothing surprises

Him! And I know He'll guide me through the ups and downs.

God bless each one of you today as you parent.

In His service,

Dale

tanya28claridge wrote:

>Am expecting too much from her treatment because she had such a good

>summer last year? I guess we thought, naively, that IVIG had all the

>answers..and for a few months it really did....or was it a seasonal

>thing? She had her dose of IVIG increased in September, and that

>will be reviewed in April...but at the moment I feel like we are on

>a downward spiral......

>

>Any thoughts from those with more experience with IVIG really

>appreciated!!

>

>

[Guest guest]

Becky,

I was given IVIG treatment for the better part of a year for CIDP, which I was

later told I didn't have by a different doctor. I have CMT 2. The first month

I had 5 days back to back IVIG treatment and it seemed to help. The following

two months they cut back to one....and the following two months to 3 days back

to back. Later it was upped again to 4 days with larger amounts because the one

and 3 days didn't seem to help. That didn't seem to help either. Except for

the IV needle stuck in, it's painless and there are no side effects or anything.

Hope this helps and hope your husband is successful with his treatment.

Carl

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