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Re: CHILD WITH CVID

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Charlotte,

My daughter Autumn is IgG deficient and I can certainly appreciate

your struggles. We too have faced the questions from family members

about whether or not she's taking too much medicine. Autumn is 3 and

not a day goes by that we don't take at least 5 medications. That's

a lot for such a young child. They tell me she's not a good

candidate for IVIG so we are waiting. We did maintenance antibiotics

during the winter months & just recently took her off them. Maybe

this summer we can drop some of her other meds and see how well she

does. At her last test, her IgG level was 417, just barely normal.

Still, we will retest in June to see how things are going.

I noticed you mentioned Cook's Children's Hospital. Where are you

from? We are in Midland, Texas and we've often discussed taking her

to Cook's in Ft. Worth.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01--and we're still waiting!!!

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dear sandra,

we live in burleson,tx 15 miles south of ft. worth cook childrens

hospital is in ft. worth texas we see dr murphy there. he is an infectious

disease dr and he is great. coltons last igg was 324 and were probably gonna

start ivig in 2 months he is on zyrtec for allergies, and bactrim is the

antibiotic were using now. theyve done a work up on colton and he only

responds to a few antibiotics. when he had strep pnemo at 6 months we found

out hes allergic to clindyamycin which was the only antibiotic that killed

his infection totally so we went too rocephin. if you need any telephone

numbers of the hospital let me know they have a ronald mcdonald house for

people out of town to so just let me know its nice knowing someone else is

going through the same thing and your close by hope every thing goes ok for

you all. charlotte

charlotteswebpad@... mother of brandon 15, jordan 11, colton 2 {cvid igg

defecient sinus infections, allergies, arthritis, excema}

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dear sandra,

we live in burleson,tx 15 miles south of ft. worth cook childrens

hospital is in ft. worth texas we see dr murphy there. he is an infectious

disease dr and he is great. coltons last igg was 324 and were probably gonna

start ivig in 2 months he is on zyrtec for allergies, and bactrim is the

antibiotic were using now. theyve done a work up on colton and he only

responds to a few antibiotics. when he had strep pnemo at 6 months we found

out hes allergic to clindyamycin which was the only antibiotic that killed

his infection totally so we went too rocephin. if you need any telephone

numbers of the hospital let me know they have a ronald mcdonald house for

people out of town to so just let me know its nice knowing someone else is

going through the same thing and your close by hope every thing goes ok for

you all. charlotte

charlotteswebpad@... mother of brandon 15, jordan 11, colton 2 {cvid igg

defecient sinus infections, allergies, arthritis, excema}

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In a message dated 5/5/2001 7:38:14 PM Central Daylight Time,

sandraray@... writes:

> Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

> asthma, chronic sinusitis, and allergies), and Duncan Avery due

> 5/17/01--and getting more stubborn by the day!

>

> ,

Did I miss something here? (Yes, I'm an AOL person. I sent a post that took

two days to get to the group!) Last I heard you were on your way... What's

going on with baby Duncan--False Labor??

Hope all goes well....and soon!

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I don't think I'd call it false labor--more like stopping &

starting. I'm making some progress, but it's soooo slow! I go to

the dr in the morning, so keep your fingers crossed!

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and alleriges), and Duncan Avery due

5/17/01

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I don't think I'd call it false labor--more like stopping &

starting. I'm making some progress, but it's soooo slow! I go to

the dr in the morning, so keep your fingers crossed!

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and alleriges), and Duncan Avery due

5/17/01

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Charlotte,

My aunt's name is Darla . She works in the deli at the Wal-

Mart. Not her choice, really. Her husband died almost 5 years ago

and left her enough in insurance $ to last her through retirement.

Her daughter & significant other thought she needed a job to get out

& meet new people. She hates the work, but she's so responsible she

keeps going to work every day.

I read in a previous post that you would have to go to Houston for

IVIG. How come? There are so many good hospitals in the Dallas/Ft.

Worth area, surely there is a closer hospital. You'd think Cook's

being the children's hospital that they are would be able to do IVIG

with PID kids.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01

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Charlotte,

My aunt's name is Darla . She works in the deli at the Wal-

Mart. Not her choice, really. Her husband died almost 5 years ago

and left her enough in insurance $ to last her through retirement.

Her daughter & significant other thought she needed a job to get out

& meet new people. She hates the work, but she's so responsible she

keeps going to work every day.

I read in a previous post that you would have to go to Houston for

IVIG. How come? There are so many good hospitals in the Dallas/Ft.

Worth area, surely there is a closer hospital. You'd think Cook's

being the children's hospital that they are would be able to do IVIG

with PID kids.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01

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Charlotte,

My aunt's name is Darla . She works in the deli at the Wal-

Mart. Not her choice, really. Her husband died almost 5 years ago

and left her enough in insurance $ to last her through retirement.

Her daughter & significant other thought she needed a job to get out

& meet new people. She hates the work, but she's so responsible she

keeps going to work every day.

I read in a previous post that you would have to go to Houston for

IVIG. How come? There are so many good hospitals in the Dallas/Ft.

Worth area, surely there is a closer hospital. You'd think Cook's

being the children's hospital that they are would be able to do IVIG

with PID kids.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01

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Charlotte,

Tabitha's cough is sounding better today. I decided that tomorrow

we'll try to reduce breathing treatments to every 6 hours. Autumn is

doing remarkably well right now. She's just taking her regular

meds. If she keeps this up, I'll make an appointment in June to see

what meds we can reduce and do some retesting of the immune system.

Our ped takes the last 2 weeks of May off every year for vacation, so

I'm trying to plan around his schedule.

My husband and I are talking about having Tabitha's allergies tested

if she continues to get sick with her asthma through the summer.

She's never been tested; we just know she's got allergies. It would

be helpful to know what she's allergic to so we would know what to

avoid. I don't think any of her allergies are food related. I,

myself, have allergies to dust & grass. I wouldn't be

surprised if there were a few others. Unfortunately, both of my kids

inherited my allergy tendencies.

I hope you can at least do IVIG in Dallas (if it comes to that).

Dallas is so much closer than Houston. I would dread that drive

every 3-4 weeks. I've got family in both places, but still wouldn't

want to make the trip on a regular basis.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01

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Charlotte,

Tabitha's cough is sounding better today. I decided that tomorrow

we'll try to reduce breathing treatments to every 6 hours. Autumn is

doing remarkably well right now. She's just taking her regular

meds. If she keeps this up, I'll make an appointment in June to see

what meds we can reduce and do some retesting of the immune system.

Our ped takes the last 2 weeks of May off every year for vacation, so

I'm trying to plan around his schedule.

My husband and I are talking about having Tabitha's allergies tested

if she continues to get sick with her asthma through the summer.

She's never been tested; we just know she's got allergies. It would

be helpful to know what she's allergic to so we would know what to

avoid. I don't think any of her allergies are food related. I,

myself, have allergies to dust & grass. I wouldn't be

surprised if there were a few others. Unfortunately, both of my kids

inherited my allergy tendencies.

I hope you can at least do IVIG in Dallas (if it comes to that).

Dallas is so much closer than Houston. I would dread that drive

every 3-4 weeks. I've got family in both places, but still wouldn't

want to make the trip on a regular basis.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def.,

asthma, chronic sinusitis, and allergies), and Duncan Avery due

5/17/01

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