Re: CVID, puberty, and constant low-grade illness and co-pay woes

[Guest guest]

These are both questions I can answer:) It sounds like its time to up the Ig

dose, what your describing tells me she's not getting enough, the constant

exhaustion and infections are a sure way to know when its time to up the dose.

The pharmacy should be asking for height/weight monthly to ensure she's getting

the correct dose. For insurance on the CVID front you want to get the

Becket waiver, its medicaid but will look only at her income and not yours. You

will have to jump though some hoops and possibly bang a few heads but its worth

it. We have several families on the list who have the waiver who can offer

advice on getting it.

10 CVID

________________________________

From: plant4birds <gardenlass@...>

Sent: Mon, December 13, 2010 6:15:04 AM

Subject: CVID, puberty, and constant low-grade illness and co-pay woes

Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with CVID)and

Ian (17, total IgA deficiency). I usually just respond to people outside of the

group when I feel I can offer something in response to their queries. But now

we are facing two problems:

First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

Betty

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

These are both questions I can answer:) It sounds like its time to up the Ig

dose, what your describing tells me she's not getting enough, the constant

exhaustion and infections are a sure way to know when its time to up the dose.

The pharmacy should be asking for height/weight monthly to ensure she's getting

the correct dose. For insurance on the CVID front you want to get the

Becket waiver, its medicaid but will look only at her income and not yours. You

will have to jump though some hoops and possibly bang a few heads but its worth

it. We have several families on the list who have the waiver who can offer

advice on getting it.

10 CVID

________________________________

From: plant4birds <gardenlass@...>

Sent: Mon, December 13, 2010 6:15:04 AM

Subject: CVID, puberty, and constant low-grade illness and co-pay woes

Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with CVID)and

Ian (17, total IgA deficiency). I usually just respond to people outside of the

group when I feel I can offer something in response to their queries. But now

we are facing two problems:

First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

Betty

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

My 3 kids with CVID and asthma get SSI with Medicaid. They were initially denied

but we fought it with a legal rep, it took a few years but we won, plus three

years of backpay.

I hope you get things figured out soon. I know it is frustrating.

valarie

mom to 3 w/cvid

>

> Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with

CVID)and Ian (17, total IgA deficiency). I usually just respond to people

outside of the group when I feel I can offer something in response to their

queries. But now we are facing two problems:

>

> First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

>

> My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

>

> Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

>

> I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

>

> Betty

>

[Guest guest]

My 3 kids with CVID and asthma get SSI with Medicaid. They were initially denied

but we fought it with a legal rep, it took a few years but we won, plus three

years of backpay.

I hope you get things figured out soon. I know it is frustrating.

valarie

mom to 3 w/cvid

>

> Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with

CVID)and Ian (17, total IgA deficiency). I usually just respond to people

outside of the group when I feel I can offer something in response to their

queries. But now we are facing two problems:

>

> First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

>

> My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

>

> Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

>

> I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

>

> Betty

>

[Guest guest]

Just a couple of thoughts that might be helpful for you.

You can contact NPAF or National Patient Advocacy Foundation. They may be able

to help with copays for your family.

Also you might apply to SS to see if you any of you may be eligible for SS. It

will be 2 years before you get on Medicare but may be worth a lower premium for

you or maybe your son. Or DSHS to see if you can get medicaid secondary to pick

up copays. Each state has different rules and whether thy have " spend downs "

that give you a certain amount per month that is considered to be too much for

your family. I had to do this several years ago when we had 3 of us very sick. I

paid my insurance premiums but the copays were killing us.

You can also called IDF and ask if there are any assistance programs out there.

My son is Bipolar and also has CVID. He is now on SS and it does help to cover

some of the extra costs. In our state it makes him eligible for Medcaid for his

insurance. My son is almost 15 but it has been a difficult year for him also .

REALLY tired and depressed etc. I would encourage you to get her levels to see

if she has adequate Sub Q since her symptoms sound like she may be low. My son's

levels are OK but we know if he is below 900 he is oing to get sick his best

levels are at about 1100 and then he feels pretty good and also stays well. Feel

free to contact me again if you have any further questions.

BARBIE

________________________________

From: plant4birds <gardenlass@...>

Sent: Mon, December 13, 2010 6:15:04 AM

Subject: CVID, puberty, and constant low-grade illness and co-pay woes

Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with CVID)and

Ian (17, total IgA deficiency). I usually just respond to people outside of the

group when I feel I can offer something in response to their queries. But now

we are facing two problems:

First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

Betty

[Guest guest]

Sadly it depends on the state. We were told in OK that if his bills were

over $40k per year and was not eligible to be institutionalized that the

Beckett Waiver does not apply. They had NO help for kids over $40K per year.

Here in WA state things are going away rapidly due to MASSIVE budget cuts and

many programs are no longer available. It is a tough time out their for

Healthcare for chronically ill kids. It is worth looking into but it is hard to

know what to do.

BARBIE

________________________________

From: <bluetaelon@...>

Cc: gardenlass@...

Sent: Mon, December 13, 2010 6:33:14 AM

Subject: Re: CVID, puberty, and constant low-grade illness and co-pay

woes

These are both questions I can answer:) It sounds like its time to up the Ig

dose, what your describing tells me she's not getting enough, the constant

exhaustion and infections are a sure way to know when its time to up the dose.

The pharmacy should be asking for height/weight monthly to ensure she's getting

the correct dose. For insurance on the CVID front you want to get the

Becket waiver, its medicaid but will look only at her income and not yours. You

will have to jump though some hoops and possibly bang a few heads but its worth

it. We have several families on the list who have the waiver who can offer

advice on getting it.

10 CVID

________________________________

From: plant4birds <gardenlass@...>

Sent: Mon, December 13, 2010 6:15:04 AM

Subject: CVID, puberty, and constant low-grade illness and co-pay woes

Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with CVID)and

Ian (17, total IgA deficiency). I usually just respond to people outside of the

group when I feel I can offer something in response to their queries. But now

we are facing two problems:

First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

Betty

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Sadly it depends on the state. We were told in OK that if his bills were

over $40k per year and was not eligible to be institutionalized that the

Beckett Waiver does not apply. They had NO help for kids over $40K per year.

Here in WA state things are going away rapidly due to MASSIVE budget cuts and

many programs are no longer available. It is a tough time out their for

Healthcare for chronically ill kids. It is worth looking into but it is hard to

know what to do.

BARBIE

________________________________

From: <bluetaelon@...>

Cc: gardenlass@...

Sent: Mon, December 13, 2010 6:33:14 AM

Subject: Re: CVID, puberty, and constant low-grade illness and co-pay

woes

These are both questions I can answer:) It sounds like its time to up the Ig

dose, what your describing tells me she's not getting enough, the constant

exhaustion and infections are a sure way to know when its time to up the dose.

The pharmacy should be asking for height/weight monthly to ensure she's getting

the correct dose. For insurance on the CVID front you want to get the

Becket waiver, its medicaid but will look only at her income and not yours. You

will have to jump though some hoops and possibly bang a few heads but its worth

it. We have several families on the list who have the waiver who can offer

advice on getting it.

10 CVID

________________________________

From: plant4birds <gardenlass@...>

Sent: Mon, December 13, 2010 6:15:04 AM

Subject: CVID, puberty, and constant low-grade illness and co-pay woes

Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with CVID)and

Ian (17, total IgA deficiency). I usually just respond to people outside of the

group when I feel I can offer something in response to their queries. But now

we are facing two problems:

First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open

to hearing others experiences or explanations. It is breaking my heart to see

my bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when

she feels poorly, sleeps such long hours, and has trouble concentrating. I'd be

so grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of

you know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

Betty

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

[Guest guest]

Growth spurts can affect PID teens alittle harder than usual. Check a current

level of her IgG to know if her dose is sufficient. Opinions vary but Macey

does best with a level over 1000.

Also chronic illness can inflame and aggravate a system to cause the symptoms

you describe. A low dose anti-inflammatory (as long as tummy and liver are ok)

could help. Labs could help you know if it is an acute or chronic problem.

Ursula mom to Macey (15, CVID) and wife to Les (CVID)

On Dec 13, 2010, at 9:15 AM, " plant4birds " <gardenlass@...> wrote:

> Hi, this is Betty(total IgA deficiency), Mom to Laurel (almost 14 with

CVID)and Ian (17, total IgA deficiency). I usually just respond to people

outside of the group when I feel I can offer something in response to their

queries. But now we are facing two problems:

>

> First, Laurel seems to have constant illness. She runs a fever of between 99

and 100 or 100.5 regularly, is exhausted at all times - even upon waking in the

morning, and complains of headache and body pain. She had aspects of this

problem last winter but now it is much more pronounced. She has so little energy

that even her favorite activities like drawing, sewing, jewelry making, etc.

seem to take too much energy for her. She is sleeping about 12 to 14 hours a

night, although the quality is often poor due to congestion, headache, fever, or

leg pains. She gets SubQ vivaglobin weekly, is on a maintenance antibiotic, and

takes a strong/long course of antibiotic when she has a diagnosed infection.

>

> My question is: Has anybody else seen anything like this in a teen with CVID?

I often wonder if the growing and hormonal changes of puberty are just throwing

her delicate system even more out of balance. If that's not it, I'm very open to

hearing others experiences or explanations. It is breaking my heart to see my

bubbly, energetic girl become frustrated by being too tired to accomplish

anything. It is also very hard to get school work done (we home school) when she

feels poorly, sleeps such long hours, and has trouble concentrating. I'd be so

grateful to hear from anybody else with a similar experience. I just have a

sense of her being much more ill than most CVID kids - or at least ill much more

often - and wonder if we need to look at anything else in our next immuno. visit

on Dec. 27th.

>

> Finally (thanks, dear friends for putting up with my mile long post) we are

drowning in prescription co-pays. My husband is a teacher and the school

district changed the co-pays on our prescription plan without notifying us over

the summer. The result: our co-pays are higher than our mortgage. Do any of you

know groups, federal or state plans, anything that could help????? I have

multiple sclerosis and IgA deficiency, IAn has Asperger's and IgA deficiency,

and Laurel has CVID. We take about 19 medications between us. I've never been

unable to afford our medications before, for which I feel very fortunate, and

I'm researching like mad to find places that will help. Are any of your kids

getting social security disability? Should I pursue that avenue? Again, any

ideas will be appreciated greatly.

>

> I can't tell you how happy I am that this group exists. Thanks to all of you

for making our family feel less alone in our immune-challenged path through

life. Happy, healthy holidays to each of you.

>

> Betty

>

>