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Re: Temme

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Hi Sandi,

We are using Acular once a day and Patenol twice per day. Sometimes his

eyes are better than others. Sometimes the drops seem to help, then sometimes I

forget to put drops in, and his eyes are fine all day. I don't get it.

Temme

Temme

Hi ,

What eye drops work for your son? Have your tried Acular?

Sandi, 's Mom

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  • 4 weeks later...
Guest guest

Sandi,

It takes forever to get SSI and even though you and I know that most of

the kids here medically qualify, the powers that are in charge of SSI

think much differently. I applied for Kody, it took almost a whole year

before we had our answer, and he was turned down. Immune deficiencies

are not on their " list " , and although his epilepsy is, they turned him

down on both because " medications can control his problems so that he

can live a normal life " . Yeah, right. I could have appealed the

decision, but that would have meant I had to hire a lawyer, not to

mention pay the lawyer, and it would take a very long time, and most

likely get turned down again. We did get children's special health care

services supplemental insurance through our medicaid office, so we do

not have anymore co-pays or have to pay anything our primary insurance

doesn't cover. That was easy to get, and well worth it!

Diane, Mom to Kody

> Hi ,

> I don't know what your financial situation is, but it might be worth

>

> inquiring about SSI for Hunter. You will receive extra income, and

> additionally, he will have insurance through the state (then you

> wouldn't be

> left with part of the bill). But you must meet certain income

> requirements

> (or should I say restrictions) to qualify. Medically, most of the

> children

> in this group qualify. This could potentially even help you to cut

> back on

> your hours, if that's what you need to do??? Just a thought.

> Sandi, 's Mom

>

>

>

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Diane,

Thanks for the information. Did they take your income into consideration

for the supplemental insurance? I will give them a call, it's worth a try.

Does the bill for the IVIG sound like the cost around the country? I often

wonder how families pay for it when the child needs it every 2-3 weeks.

Financially, we would be a sinking ship!!!

Temme

Re: Temme

Sandi,

It takes forever to get SSI and even though you and I know that most of

the kids here medically qualify, the powers that are in charge of SSI

think much differently. I applied for Kody, it took almost a whole year

before we had our answer, and he was turned down. Immune deficiencies

are not on their " list " , and although his epilepsy is, they turned him

down on both because " medications can control his problems so that he

can live a normal life " . Yeah, right. I could have appealed the

decision, but that would have meant I had to hire a lawyer, not to

mention pay the lawyer, and it would take a very long time, and most

likely get turned down again. We did get children's special health care

services supplemental insurance through our medicaid office, so we do

not have anymore co-pays or have to pay anything our primary insurance

doesn't cover. That was easy to get, and well worth it!

Diane, Mom to Kody

> Hi ,

> I don't know what your financial situation is, but it might be worth

>

> inquiring about SSI for Hunter. You will receive extra income, and

> additionally, he will have insurance through the state (then you

> wouldn't be

> left with part of the bill). But you must meet certain income

> requirements

> (or should I say restrictions) to qualify. Medically, most of the

> children

> in this group qualify. This could potentially even help you to cut

> back on

> your hours, if that's what you need to do??? Just a thought.

> Sandi, 's Mom

>

>

>

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Guest guest

Diane,

Do you think a program like this would cover Autumn's out-of-pocket

expenses? She does not get IVIG, but still has the IgG deficiency &

selective antibody deficiency to deal with. Just curious. I want to see if

we'd qualify before I start going through hoops to qualify. I'm sure Texas

has a similar program & I've got a friend who can look it up for me who

works for the Texas Department of Health.

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

chronic sinusitis, and allergies), and Duncan (10 months)

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Guest guest

,

Yes, they do consider your income to an extent. You may have a fee per

month if your income exceeds their limit. However, the limit was high as

compared to most, I want to say $60,000 but I could be wrong. And the

cost per month was low, like $5. When you fill out the paper work, make

sure you list every doctor that your child sees or will see in the near

future. List all the diagnosis, as only those conditions will be

covered. Here is a hint!!!! Your regular pediatrician is not usually on

the supplemental insurance....only the specialists are. However, in

Kody's case, his pediatrician is the one we see the most, I don't call

the immunologist when Kody gets an infection, I call our ped. So, our

case worker, made special arrangements to have my pediatrician listed on

the insurance. So as long as we are there as a result of one of Kody's

diagnosed conditions, we don't pay any copays or anything. Keep in mind

that new diagnosis can be added later very easily you just have to call

your case worker. And the Children's Special Health Care Services

(CSHCS) insurance will pay mileledge if you have to travel more than 100

miles for care, they will pay towards hotel, and food costs if you go to

out of town care as well. And if one of your other children have to see

a specialist of any kind, a simple phone call to your case worker adds

them to it too! The only catch is, you have to have another insurance as

your primary insurance. But, hey, it has been so worth it, and the best

thing I could have done for us financially!!! Even our copays were huge

monthly before CSHCS. Without insurance our costs run very high, Kody

gets his IVIG every 3 weeks so some months it works out to being there

twice. His run $1700, and his perscriptions alone run $300. That doesn't

include doctors visits, averaging once a week, another $400 a month.

Yeah, we'd be living in our car if we didn't have insurance! Not really,

but we would have to mooch off my parents!! Oh and the CSHCS insurance

will go retroactive if you have past medical bills. In our case, I

applied in August, recieved the insurance by the end of the month, and

it paid Kody's bills all the way back to January. Good luck, it is worth

it!

Diane, Mom to Kody

>

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Guest guest

In a message dated 3/28/02 9:52:25 AM Pacific Standard Time,

schmidtzoo@... writes:

> the Children's Special Health Care Services

> (CSHCS) insurance

Is this the same as California Childrens services? Is there a web page to

find out more.

Thanks for any info

le

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Guest guest

I am not sure, it is through Michigan's Department of Social Services. I

do know that each state has a program like it, although what they chose

to call it may be different. I'd just call your county's social services

department and ask for information on supplemental insurance for a child

with special health care needs.

Diane

daniellepenne@... wrote:

> In a message dated 3/28/02 9:52:25 AM Pacific Standard Time,

> schmidtzoo@... writes:

>

>

> > the Children's Special Health Care Services

> > (CSHCS) insurance

>

> Is this the same as California Childrens services? Is there a web

> page to

> find out more.

> Thanks for any info

> le

>

>

>

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