Re: ROLL CALL!!! Let's see how many members respond!

[Guest guest]

In a message dated 11/9/2009 3:17:06 P.M. Pacific Standard Time,

dfladhammer@... writes:

Name

General Location/state/General Location/state/

Pid Pumpkin:? What does that mean..My son has CVID

Age:9

Grade:2

School Status: Homeschooled

SIblings & Ages: twin brother

Diagnosis: CIVID....Mitochondrial disease

How Long Since Diagnosis: 2 years

Treatment: IVIG at UCLA every 3 weeks

Additional Health Concerns: Mito, Autism

Best Website for dealing with all this PI stuff: Lots of sites:)

Best resource you've found: always surfing the web for more info

Best PI Tip: Always email your Doctors:)

Tell us a little about yourself/your child, or anything! My 9 year old has

CVID and Mito, he is now home schooled again thru the hospital homeschool

program, Not an easy time! Waiting to see if we need to do IVIG every 2

weeks (hope not) and Zach will be starting antibiotics again for 2 months as

he is battling infections again....

[Guest guest]

In a message dated 11/9/2009 3:17:06 P.M. Pacific Standard Time,

dfladhammer@... writes:

Name

General Location/state/General Location/state/

Pid Pumpkin:? What does that mean..My son has CVID

Age:9

Grade:2

School Status: Homeschooled

SIblings & Ages: twin brother

Diagnosis: CIVID....Mitochondrial disease

How Long Since Diagnosis: 2 years

Treatment: IVIG at UCLA every 3 weeks

Additional Health Concerns: Mito, Autism

Best Website for dealing with all this PI stuff: Lots of sites:)

Best resource you've found: always surfing the web for more info

Best PI Tip: Always email your Doctors:)

Tell us a little about yourself/your child, or anything! My 9 year old has

CVID and Mito, he is now home schooled again thru the hospital homeschool

program, Not an easy time! Waiting to see if we need to do IVIG every 2

weeks (hope not) and Zach will be starting antibiotics again for 2 months as

he is battling infections again....

[Guest guest]

________________________________

From: crionafam <dfladhammer@...>

Sent: Mon, November 9, 2009 5:14:58 PM

Subject: ROLL CALL!!! Let's see how many members respond!

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name TRACY PAVLU

General Location/state/ city: NEW BRAUNFELS, TX (CLOSE TO SAN ANTONIO)

Pid Pumpkin: TWINS- CARTER & PAYTON

Age: 6

Grade: KINDER

School Status: PUBLIC SCHOOL(LOVING IT AND DOING AWESOME)

SIblings & Ages: NONE

Diagnosis: PID

How Long Since Diagnosis: 1 YEAR

Treatment: " TEST, WATCH, SEE, REPEAT " BEEN CLOSE TO IVIG ABOUT 3 TIMES IN LAST

YEAR--HOPING TO HOLD OFF AS LONG AS POSSIBLE (NOT CONVINCED BENEFITS OUTWEIGH

RISKS AT PRESENT TIME).

Additional Health Concerns: ASTHMA

Best PI Tip: DO WHAT'S BEST FOR YOU & YOUR CHILD! LEARN TO LIVE WITH YOUR

DIAGNOSIS, NOT SUFFER FROM IT!

Tell us a little about yourself/your child, or anything! I'M A PUBLIC SCHOOL

TEACHER & KEEP MY KIDS AS ACTIVE AS POSSIBLE. SON PLAYS CLUB SOCCER & BASEBALL.

DAUGHTER IS ON COMPETITIVE CHEER SQUAD, GYMNASTICS & INVOLVED IN PAGEANTS. WE

TRY TO NOT LET OUR DIAGNOSIS CONTROL OUR LIVES--WE SPEND OUR SCHOOL VACATIONS

TRAVELING AS MUCH AS POSSIBLE! WE EDUCATE AS MANY PEOPLE AS WE CAN--FRIENDS AND

FAMILY KNOW WE ARE " GERM FREAKS, " AND LOVE US ANYWAY!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

________________________________

From: crionafam <dfladhammer@...>

Sent: Mon, November 9, 2009 5:14:58 PM

Subject: ROLL CALL!!! Let's see how many members respond!

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name TRACY PAVLU

General Location/state/ city: NEW BRAUNFELS, TX (CLOSE TO SAN ANTONIO)

Pid Pumpkin: TWINS- CARTER & PAYTON

Age: 6

Grade: KINDER

School Status: PUBLIC SCHOOL(LOVING IT AND DOING AWESOME)

SIblings & Ages: NONE

Diagnosis: PID

How Long Since Diagnosis: 1 YEAR

Treatment: " TEST, WATCH, SEE, REPEAT " BEEN CLOSE TO IVIG ABOUT 3 TIMES IN LAST

YEAR--HOPING TO HOLD OFF AS LONG AS POSSIBLE (NOT CONVINCED BENEFITS OUTWEIGH

RISKS AT PRESENT TIME).

Additional Health Concerns: ASTHMA

Best PI Tip: DO WHAT'S BEST FOR YOU & YOUR CHILD! LEARN TO LIVE WITH YOUR

DIAGNOSIS, NOT SUFFER FROM IT!

Tell us a little about yourself/your child, or anything! I'M A PUBLIC SCHOOL

TEACHER & KEEP MY KIDS AS ACTIVE AS POSSIBLE. SON PLAYS CLUB SOCCER & BASEBALL.

DAUGHTER IS ON COMPETITIVE CHEER SQUAD, GYMNASTICS & INVOLVED IN PAGEANTS. WE

TRY TO NOT LET OUR DIAGNOSIS CONTROL OUR LIVES--WE SPEND OUR SCHOOL VACATIONS

TRAVELING AS MUCH AS POSSIBLE! WE EDUCATE AS MANY PEOPLE AS WE CAN--FRIENDS AND

FAMILY KNOW WE ARE " GERM FREAKS, " AND LOVE US ANYWAY!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Name: le Mina

General Location/state/ city:Santa Clara, CA (Bay Area)

Pid Pumpkin: Tristen

Age:4 1/2

Grade: Preschool

School Status: Goes to preschool 3 days a week for 4 hours a day. next year

will go to full day kinder at our public school, hopefully.

SIblings & Ages:Kaitlyn 7 1/2

Diagnosis:CVID

How Long Since Diagnosis:Diagnosed a little over a year ago

Treatment: 13 ml vivaglobin weekly subq

Additional Health Concerns:Peanut allergy/environmental allergies and asthma

Best Website for dealing with all this PI stuff:Actually this group is the

most helpful

Best resource you've found:

Best PI Tip: Try to let your PID kid have as much of a " normal " life as

possible. Even though I'm careful about keeping Tristen healthy, I let her play

with friends, go to school, be involved with activities. I want her to just be

a 4 year old. She was so sick for 3 1/2 years of her life, that now I want her

to just be a kid.

Tell us a little about yourself/your child, or anything! I'm a SAHM and a

nursing studen. I play ice hockey and indoor soccer in my " spare " time.

________________________________

From: crionafam <dfladhammer@...>

Sent: Mon, November 9, 2009 3:14:58 PM

Subject: ROLL CALL!!! Let's see how many members respond!

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything

is going! I knew we did this once before, and realized when I looked back it was

in 2006!!! (If you think about it, try to reply to this message, so it all stays

in one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/ city:

Pid Pumpkin:

Age:

Grade:

School Status:

SIblings & Ages:

Diagnosis:

How Long Since Diagnosis:

Treatment:

Additional Health Concerns:

Best Website for dealing with all this PI stuff:

Best resource you've found:

Best PI Tip:

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Name Melody Pohla

General Location/state/city: Houston, TX suburbs

Pid Pumpkin: , ,

Age: is 7 on Wed, is 4.5, and is 20 mos

Grade: is in 1st grade and attends preschool

School Status: Both older boys go to school

SIblings & Ages: see above

Diagnosis: unknown secondary immunodeficiency due to Mitochondrial disease,

complex 1 deficiency

How Long Since Diagnosis: was 20 mos when we first recognized he

had a problem with his immune system. was around 12 mos and

has been followed since birth. They have been dx with Mito since

was 5, was 2.5 and was dx at birth.

Treatment: is on IVIG every 4 weeks and gets it inpatient at the

hospital and and are being watched closely at the moment.

Additional Health Concerns: Mitochondrial disease, GI issues, neuropathy,

migraines…you name it.

Best Website for dealing with all this PI stuff: we frequent several…

Best resource you've found: parents who have BTDT seem to have more

practical knowledge than some drs we have seen. It helps to have a

collection of people to go to when you have questions and need advice,

suggestions on what to ask, or what has worked for others.

Best PI Tip: Purell and handwashing!!! Be persistent!!!

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Name Melody Pohla

General Location/state/city: Houston, TX suburbs

Pid Pumpkin: , ,

Age: is 7 on Wed, is 4.5, and is 20 mos

Grade: is in 1st grade and attends preschool

School Status: Both older boys go to school

SIblings & Ages: see above

Diagnosis: unknown secondary immunodeficiency due to Mitochondrial disease,

complex 1 deficiency

How Long Since Diagnosis: was 20 mos when we first recognized he

had a problem with his immune system. was around 12 mos and

has been followed since birth. They have been dx with Mito since

was 5, was 2.5 and was dx at birth.

Treatment: is on IVIG every 4 weeks and gets it inpatient at the

hospital and and are being watched closely at the moment.

Additional Health Concerns: Mitochondrial disease, GI issues, neuropathy,

migraines…you name it.

Best Website for dealing with all this PI stuff: we frequent several…

Best resource you've found: parents who have BTDT seem to have more

practical knowledge than some drs we have seen. It helps to have a

collection of people to go to when you have questions and need advice,

suggestions on what to ask, or what has worked for others.

Best PI Tip: Purell and handwashing!!! Be persistent!!!

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: crionafam <dfladhammer@...>

Subject: ROLL CALL!!! Let's see how many members respond!

Date: Monday, November 9, 2009, 6:14 PM

 

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything is

going! I knew we did this once before, and realized when I looked back it was in

2006!!! (If you think about it, try to reply to this message, so it all stays in

one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/ city:   SOUTH CAROLINA/Greenwood

Pid Pumpkin:  Blake

Age:   17 1/2

Grade:  11th Homebound...has NOT attended school since 2nd grade

School Status: Medical/Hospital Homebound

SIblings & Ages:  NA

Diagnosis: Severe Combined Immunodeficiency with Complete T-Cell Dysfunction,

How Long Since Diagnosis: DX'ed at age 3

Treatment:  Did IVIG for 8 yrs. switched to Sub-Q 2 yrs ago

Additional Health Concerns: Autism, Severe Asthma, GERD, RARE Blood Clotting

disorder Brittle Bone disease

Best Website for dealing with all this PI stuff:  IDF & Jeffery Modell

Best resource you've found:

Best PI Tip: Remeber YOU are your cild's ONLY advocate....YOU are who matters

most to your " special " one!!!

Tell us a little about yourself/your child, or anything!

Blaek LOVES to read...very obcessed with books paper & drawing his won world

maps.  Blake hates being sick & will tell you in a sec. when something is

coming (sinus infections, low bolld and all that stuff....) he can tell you the

sizes of the IV just by you (nurse) telling him the color that is being used!!!!

Blaek is a very, very smart person & very intersting to listen to once you can

getpast teh fact taht he OVER talks & will only discuss what he is intersted in.

I as his mom, love PHOTOGRAPHY....if you have a face book page you can see all

my works on the FB...julie marie stephens.  I love to can & process my own

fresh foods & make fresh jellies and jams as well as preserves in my own

kitchen....I LOVE to Cook!!!

Blake does have a web site...

http://www.caringbridge.org/visit/thetalesofblake

come Visit & see just WHY I call him:

" The Greatest Adventure of MY Lifetime!!!!

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

 

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: crionafam <dfladhammer@...>

Subject: ROLL CALL!!! Let's see how many members respond!

Date: Monday, November 9, 2009, 6:14 PM

 

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything is

going! I knew we did this once before, and realized when I looked back it was in

2006!!! (If you think about it, try to reply to this message, so it all stays in

one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/ city:   SOUTH CAROLINA/Greenwood

Pid Pumpkin:  Blake

Age:   17 1/2

Grade:  11th Homebound...has NOT attended school since 2nd grade

School Status: Medical/Hospital Homebound

SIblings & Ages:  NA

Diagnosis: Severe Combined Immunodeficiency with Complete T-Cell Dysfunction,

How Long Since Diagnosis: DX'ed at age 3

Treatment:  Did IVIG for 8 yrs. switched to Sub-Q 2 yrs ago

Additional Health Concerns: Autism, Severe Asthma, GERD, RARE Blood Clotting

disorder Brittle Bone disease

Best Website for dealing with all this PI stuff:  IDF & Jeffery Modell

Best resource you've found:

Best PI Tip: Remeber YOU are your cild's ONLY advocate....YOU are who matters

most to your " special " one!!!

Tell us a little about yourself/your child, or anything!

Blaek LOVES to read...very obcessed with books paper & drawing his won world

maps.  Blake hates being sick & will tell you in a sec. when something is

coming (sinus infections, low bolld and all that stuff....) he can tell you the

sizes of the IV just by you (nurse) telling him the color that is being used!!!!

Blaek is a very, very smart person & very intersting to listen to once you can

getpast teh fact taht he OVER talks & will only discuss what he is intersted in.

I as his mom, love PHOTOGRAPHY....if you have a face book page you can see all

my works on the FB...julie marie stephens.  I love to can & process my own

fresh foods & make fresh jellies and jams as well as preserves in my own

kitchen....I LOVE to Cook!!!

Blake does have a web site...

http://www.caringbridge.org/visit/thetalesofblake

come Visit & see just WHY I call him:

" The Greatest Adventure of MY Lifetime!!!!

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

 

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Name: Kim MacEachern

General Location/state/city: Canada (Pickering Ontario)

Pid Pumpkin:

Age: 7

Grade: 2

School Status: public school and loves it

SIblings & Ages: (12) and (9)

Diagnosis: Hyper IgE aka Job Syndrome

How Long Since Diagnosis: diagnosed with unknown PID 2004, genetically

confirmed Hyper IgE Nov 2008

Treatment: IVIG every 4 weeks at hospital, daily Septra, steroids for skin, and

generally fighting infections as they come up

Additional Health Concerns: long term we are looking at scoliosis, tumors, and

more pneumonias in 's future

Best Website for dealing with all this PI stuff: IDF - what a life saver for

making sense out of all this

Best resource you've found: Emedicine.com - I can research then tell the

doctors what is going on

Best PI Tip: No bubble for - we let him play soccer, go to public

school, ski, toboggan, be a kid - and that makes the doctors at Sick Kids

nervous, but he is living his best life and having fun doing it. Sure he gets

sick sometimes, but we deal with that too.

[Guest guest]

Name: Kim MacEachern

General Location/state/city: Canada (Pickering Ontario)

Pid Pumpkin:

Age: 7

Grade: 2

School Status: public school and loves it

SIblings & Ages: (12) and (9)

Diagnosis: Hyper IgE aka Job Syndrome

How Long Since Diagnosis: diagnosed with unknown PID 2004, genetically

confirmed Hyper IgE Nov 2008

Treatment: IVIG every 4 weeks at hospital, daily Septra, steroids for skin, and

generally fighting infections as they come up

Additional Health Concerns: long term we are looking at scoliosis, tumors, and

more pneumonias in 's future

Best Website for dealing with all this PI stuff: IDF - what a life saver for

making sense out of all this

Best resource you've found: Emedicine.com - I can research then tell the

doctors what is going on

Best PI Tip: No bubble for - we let him play soccer, go to public

school, ski, toboggan, be a kid - and that makes the doctors at Sick Kids

nervous, but he is living his best life and having fun doing it. Sure he gets

sick sometimes, but we deal with that too.

[Guest guest]

Name:

General Location/state/ city:Columbia, MO

Pid Pumpkin:Tate

Age:11

Grade:6

School Status:Public Middle School

SIblings & Ages:Tanner, 14

Diagnosis:CVID

How Long Since Diagnosis:April 2009

Treatment:40cc subcutaneous Vivaglobin weekly

Additional Health Concerns:Bee sting allergy. asthma

Best Website for dealing with all this PI stuff:here and IDF

Best resource you've found:IDF and other parents with PID kids

Best PI Tip:Ice AND EMLA on subcut. sticks makes them really easy

Tell us a little about yourself/your child, or anything! I rarely post anywhere.

I feel as though we are still busy trying to learn as much as we can and absorb

it all. Thanks for all of the good suggestions everyone posts.

From: crionafam <dfladhammer@...>

Subject: ROLL CALL!!! Let's see how many members respond!

Date: Monday, November 9, 2009, 11:14 PM

 

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything is

going! I knew we did this once before, and realized when I looked back it was in

2006!!! (If you think about it, try to reply to this message, so it all stays in

one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/ city:

Pid Pumpkin:

Age:

Grade:

School Status:

SIblings & Ages:

Diagnosis:

How Long Since Diagnosis:

Treatment:

Additional Health Concerns:

Best Website for dealing with all this PI stuff:

Best resource you've found:

Best PI Tip:

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Name:  Roach 

General Location/state/ city: Grimes, IA-near DesMoines

Pid Pumpkin:  Hannah Roach

Age:  2

Grade:

School Status:

SIblings & Ages: Chelsea, 12  e, 9  Emma 7

Diagnosis: Genetically Confirmed Hyper Ige Syndrome, AKA Job's Syndrome

How Long Since Diagnosis:  December of 2007

Treatment: Steroid creams for skin, and Keflex 3 times daily

Additional Health Concerns: currently she just has some food allergies, which is

preventing her from getting the H1N1 vaccination.  Otherwise, right now she is

doing excellent.

Best Website for dealing with all this PI stuff:  IDF

Best resource you've found: Emedicine.  It has the best of the very few

articles that are out there regarding this syndrome

Best PI Tip:  PRAYER!!!

Tell us a little about yourself/your child, or anything.  I am thankful right

now, that Hannah is doing so well, and I know that only comes from God.  He

gave her to me and the Bible says that He knit us in our mother's womb.  So, He

knows how  her little body works.  I have to fully rely on Him for wisdom in

how to treat her, but also just that He will take care of her.  She is a very

fun and happy little girl.  We just take things a little at a time.  The thing

about this syndrome, is that not a lot of people even truly know how it works or

what to do for it, or how it truly will manifest itself.  So, is all we can do,

is just be happy about the good health she has now, and deal with the hard stuff

when and if it comes.

Psalm 145:5  I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: crionafam <dfladhammer@...>

Subject: ROLL CALL!!! Let's see how many members respond!

Date: Monday, November 9, 2009, 5:14 PM

 

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything is

going! I knew we did this once before, and realized when I looked back it was in

2006!!! (If you think about it, try to reply to this message, so it all stays in

one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/ city:

Pid Pumpkin:

Age:

Grade:

School Status:

SIblings & Ages:

Diagnosis:

How Long Since Diagnosis:

Treatment:

Additional Health Concerns:

Best Website for dealing with all this PI stuff:

Best resource you've found:

Best PI Tip:

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Name:  Roach 

General Location/state/ city: Grimes, IA-near DesMoines

Pid Pumpkin:  Hannah Roach

Age:  2

Grade:

School Status:

SIblings & Ages: Chelsea, 12  e, 9  Emma 7

Diagnosis: Genetically Confirmed Hyper Ige Syndrome, AKA Job's Syndrome

How Long Since Diagnosis:  December of 2007

Treatment: Steroid creams for skin, and Keflex 3 times daily

Additional Health Concerns: currently she just has some food allergies, which is

preventing her from getting the H1N1 vaccination.  Otherwise, right now she is

doing excellent.

Best Website for dealing with all this PI stuff:  IDF

Best resource you've found: Emedicine.  It has the best of the very few

articles that are out there regarding this syndrome

Best PI Tip:  PRAYER!!!

Tell us a little about yourself/your child, or anything.  I am thankful right

now, that Hannah is doing so well, and I know that only comes from God.  He

gave her to me and the Bible says that He knit us in our mother's womb.  So, He

knows how  her little body works.  I have to fully rely on Him for wisdom in

how to treat her, but also just that He will take care of her.  She is a very

fun and happy little girl.  We just take things a little at a time.  The thing

about this syndrome, is that not a lot of people even truly know how it works or

what to do for it, or how it truly will manifest itself.  So, is all we can do,

is just be happy about the good health she has now, and deal with the hard stuff

when and if it comes.

Psalm 145:5  I will meditate on your majestic, glorious splendor and your

wonderful miracles.

From: crionafam <dfladhammer@...>

Subject: ROLL CALL!!! Let's see how many members respond!

Date: Monday, November 9, 2009, 5:14 PM

 

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything is

going! I knew we did this once before, and realized when I looked back it was in

2006!!! (If you think about it, try to reply to this message, so it all stays in

one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/ city:

Pid Pumpkin:

Age:

Grade:

School Status:

SIblings & Ages:

Diagnosis:

How Long Since Diagnosis:

Treatment:

Additional Health Concerns:

Best Website for dealing with all this PI stuff:

Best resource you've found:

Best PI Tip:

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

[Guest guest]

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're

comfortable with):

Name

General Location/state/city: Carmel, IN

Pid Pumpkin: , 7 and Meredith, almost 5

Grade: 1st grade for , PreK for Meredith

School Status: homeschool

SIblings & Ages: , 10 and Madison, 3 months

Diagnosis: hypogammaglobulinemia and pneumococcal antibody deficiency, some

T cell issues and low NK cells

How Long Since Diagnosis: 4.5 years for , a little more than 2 for

Meredith

Treatment: IVIG every 4 weeks at home

Additional Health Concerns: their immune issues are due to mitochondrial

myopathy (which the baby also has so will be following her immune status

closely) and also have central hypoventilation syndrome (on BIPAP at night

and Meredith is on oxygen), GI issues, low muscle tone, liver issues,

asthma, etc

Best resource you've found: other moms

Best PI Tip: hand sanitizer is our friend! We generally get out and about

but with mito, a new baby (with mito), and H1N1, we are pretty much in

isolation these days until everyone is vaccinated. We are allowed to go to

PT and OT (small clinic with only one other kid when we're there) and doctor

appts (no waiting in waiting rooms, though). This is NOT our norm, though.

Tell us a little about yourself/your child, or anything! My girls love

ballet and all 3 were in gymnastics. I enjoy a few quiet moments to myself

which is often hard to come by!

[Guest guest]

On Mon, Nov 9, 2009 at 6:14 PM, crionafam <dfladhammer@...> wrote:

>

>

> Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how

> everything is going! I knew we did this once before, and realized when I

> looked back it was in 2006!!! (If you think about it, try to reply to this

> message, so it all stays in one thread, and we can look back on it if we

> need it)

>

> Let's CONNECT!!! Cut and Paste below! (answer with whatever you're

> comfortable with):

>

> Name: Sue Clayton

> General Location/state/city: Long Island, NY

> Pid Pumpkin:

> Age: 15

> Grade: 10

> School Status: Home Schooled

> SIblings & Ages: 12

> Diagnosis: CVID

> How Long Since Diagnosis: 5 years

> Treatment: IVIG for 2 years, none for last 3 years

> Additional Health Concerns: asthma

> Best Website for dealing with all this PI stuff: PIDF

> Best resource you've found: Right now -- just on this website

> Best PI Tip: was taken off IVIG when we moved cross country. Ended up

> doing fine. Refused to go back on (teens!) and has done very well and is

> just being monitored right now.

>

> Tell us a little about yourself/your child, or anything! After being sick

> his whole life, 3 years of IVIG seemed to boost his immune system enough

> that he is okay, combined with the decision to home school and not to be

> exposed to sick kids all day. Right now he is in college (just one course)

> and we may have to reevaluate. However he lives a very active life --

> currently taking the lifeguard course and is doing well. did not like

> the weekly sub-q infusions and would like to do monthly infusions in the

> hospital, if he has to go back to them. I feel it would be a choice between

> him and his doctor, as he is now almost 16.

>

> This may be a good way to connect with others in your area, or your

> childs age range

>

>

>

[Guest guest]

On Mon, Nov 9, 2009 at 6:14 PM, crionafam <dfladhammer@...> wrote:

>

>

> Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how

> everything is going! I knew we did this once before, and realized when I

> looked back it was in 2006!!! (If you think about it, try to reply to this

> message, so it all stays in one thread, and we can look back on it if we

> need it)

>

> Let's CONNECT!!! Cut and Paste below! (answer with whatever you're

> comfortable with):

>

> Name: Sue Clayton

> General Location/state/city: Long Island, NY

> Pid Pumpkin:

> Age: 15

> Grade: 10

> School Status: Home Schooled

> SIblings & Ages: 12

> Diagnosis: CVID

> How Long Since Diagnosis: 5 years

> Treatment: IVIG for 2 years, none for last 3 years

> Additional Health Concerns: asthma

> Best Website for dealing with all this PI stuff: PIDF

> Best resource you've found: Right now -- just on this website

> Best PI Tip: was taken off IVIG when we moved cross country. Ended up

> doing fine. Refused to go back on (teens!) and has done very well and is

> just being monitored right now.

>

> Tell us a little about yourself/your child, or anything! After being sick

> his whole life, 3 years of IVIG seemed to boost his immune system enough

> that he is okay, combined with the decision to home school and not to be

> exposed to sick kids all day. Right now he is in college (just one course)

> and we may have to reevaluate. However he lives a very active life --

> currently taking the lifeguard course and is doing well. did not like

> the weekly sub-q infusions and would like to do monthly infusions in the

> hospital, if he has to go back to them. I feel it would be a choice between

> him and his doctor, as he is now almost 16.

>

> This may be a good way to connect with others in your area, or your

> childs age range

>

>

>

[Guest guest]

Name:

General Location/state/ city: Palm Harbor, FL

Pid Pumpkin:Ashlynn

Age:4 yrs

Grade:VPK

School Status:Small preschool

SIblings & Ages:Camryn 11yrs

Diagnosis:PIDD, GERD, FTT, Swachman-Diamond Syndrome

How Long Since Diagnosis:ALl this started when she was a baby, we have been

given different diagnosises at different times.

Treatment:She takes prevacid for reflux, IVIG for 5 months, then switched to

SCIG last October. It's been 1 year since starting the SCIG. She gets 10cc

weekly.

Additional Health Concerns:She gets sick all the time and takes a long time to

recoup

Best Website for dealing with all this PI stuff: support groups and IDF

Best resource you've found:the website

Best PI Tip:clean, clean, clean

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

---- Sievert <sievertlaura@...> wrote:

> Name:

> General Location/state/ city:Columbia, MO

> Pid Pumpkin:Tate

> Age:11

> Grade:6

> School Status:Public Middle School

> SIblings & Ages:Tanner, 14

> Diagnosis:CVID

> How Long Since Diagnosis:April 2009

> Treatment:40cc subcutaneous Vivaglobin weekly

> Additional Health Concerns:Bee sting allergy. asthma

> Best Website for dealing with all this PI stuff:here and IDF

> Best resource you've found:IDF and other parents with PID kids

> Best PI Tip:Ice AND EMLA on subcut. sticks makes them really easy

>

> Tell us a little about yourself/your child, or anything! I rarely post

anywhere. I feel as though we are still busy trying to learn as much as we can

and absorb it all. Thanks for all of the good suggestions everyone posts.

>

>

>

>

>

> From: crionafam <dfladhammer@...>

> Subject: ROLL CALL!!! Let's see how many members respond!

>

> Date: Monday, November 9, 2009, 11:14 PM

>

>

>  

>

>

>

> Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything

is going! I knew we did this once before, and realized when I looked back it was

in 2006!!! (If you think about it, try to reply to this message, so it all stays

in one thread, and we can look back on it if we need it)

>

> Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

>

> Name

> General Location/state/ city:

> Pid Pumpkin:

> Age:

> Grade:

> School Status:

> SIblings & Ages:

> Diagnosis:

> How Long Since Diagnosis:

> Treatment:

> Additional Health Concerns:

> Best Website for dealing with all this PI stuff:

> Best resource you've found:

> Best PI Tip:

>

> Tell us a little about yourself/your child, or anything!

>

> This may be a good way to connect with others in your area, or your

> childs age range

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name: Kim Bungay

General Location/state/city: , New Jersey

Pid Pumpkin:

Age: 13

Grade: 8

School Status: In public middle school

SIblings & Ages: Brother 15 and sister 10

Diagnosis: CVID

How Long Since Diagnosis: 8+ years

Treatment: IVIG Gammagard every 3-4 weeks, Augmentin 400 MG 2xs a day

Additional Health Concerns: Migraines, sporadic stomach issues, ADD

Best Website for dealing with all this PI stuff: This group, IDF and JM

Foundation

Best resource you've found: All of the above

Best PI Tip: Try your best to let your son or daughter to be normal. My first

Dr. told me my job was to make life normal for my son. (Although I know some of

you have bigger issues than I do...) IVIG is part of his life, he has had

friends over while getting his IVIG at home, we are open about it and it works

for us and we try not to make it a big deal. We are careful about exposure to

illness and we always take precautions. I have a good relationship with our

immunologist and if we have any questions or concerns about his health we can,

and do, call.

Tell us a little about yourself/your child, or anything! is very active

and has been playing football for the last 4 years and is looking forward to

playing in highschool next year.

ROLL CALL!!! Let's see how many members respond!

Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything

is going! I knew we did this once before, and realized when I looked back it was

in 2006!!! (If you think about it, try to reply to this message, so it all stays

in one thread, and we can look back on it if we need it)

Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

Name

General Location/state/city:

Pid Pumpkin:

Age:

Grade:

School Status:

SIblings & Ages:

Diagnosis:

How Long Since Diagnosis:

Treatment:

Additional Health Concerns:

Best Website for dealing with all this PI stuff:

Best resource you've found:

Best PI Tip:

Tell us a little about yourself/your child, or anything!

This may be a good way to connect with others in your area, or your

childs age range

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

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.425 / Virus Database: 270.14.56/2491 - Release Date: 11/09/09

07:39:00

[Guest guest]

Name: Klipp

General Location/state/city: Suburbs of Houston Texas

Pid Pumpkin:

Age:6

Grade:1st grade in private Montessori School

School Status:Doing good...Loves geography and math

SIblings & Ages:Only Child

Diagnosis:CVID for now --in the process of testing me as a carrier of XLA

How Long Since Diagnosis:diagnosed with selective IGA at 18 months diagnosed

with CVID last year but still testing.....

Treatment: Vivaglobin Sub-Q 16ml per week

Additional Health Concerns: Chronic sinus infections-RAD-allergic rhinitis

Best Website for dealing with all this PI stuff: Primaryimmune.org and here

Best PI Tip: Let them be kids and always have purelle close

Tell us a little about yourself/your child, or anything! I have an amazing boy.

He has endured so much in his 6 years and has taught me so much. I applaude all

the parents with a PI child it is a long loney road but the reward is so great!

This may be a good way to connect with others in your area, or your

childs age range

>

> From: dfladhammer@...

> Date: Mon, 9 Nov 2009 23:14:58 +0000

> Subject: ROLL CALL!!! Let's see how many members respond!

>

> Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how everything

is going! I knew we did this once before, and realized when I looked back it was

in 2006!!! (If you think about it, try to reply to this message, so it all stays

in one thread, and we can look back on it if we need it)

>

> Let's CONNECT!!! Cut and Paste below! (answer with whatever you're comfortable

with):

>

> Name

> General Location/state/city:

> Pid Pumpkin:

> Age:

> Grade:

> School Status:

> SIblings & Ages:

> Diagnosis:

> How Long Since Diagnosis:

> Treatment:

> Additional Health Concerns:

> Best Website for dealing with all this PI stuff:

> Best resource you've found:

> Best PI Tip:

>

> Tell us a little about yourself/your child, or anything!

>

> This may be a good way to connect with others in your area, or your

> childs age range

>

>

>

>

>

>

> ------------------------------------

>

> 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]

>

>

> Name: Piper

> General Location/state/city: Scurry, TX (outside of Dallas)

> Pid Pumpkin: Mia

> Age: 9

> Grade: 4th grade

> School Status: Going to public school as much as possible

> SIblings & Ages: - 18

> Diagnosis: CVID - Asthma

> How Long Since Diagnosis: 7 years

> Treatment: Vivaglobin 1 x weekly

> Additional Health Concerns: Recurring strep infections

> Best Website for dealing with all this PI stuff:

> Best resource you've found: This group keeps me pretty informed

> Best PI Tip: Let your PID child live life to the fullest and as normal as

possible!

>

> Tell us a little about yourself/your child, or anything: My daughter is my

rock, she never gives up, keeps me going no matter what. She asked me the other

night what I would do if I had a day to myself without having to tend to family,

animals, doctors, work and had a $1 million dollars, I said I would spend it

with my family and try to find a cure to make her life even better!

>

> This may be a good way to connect with others in your area, or your

> childs age range

>

[Guest guest]

>

>

> * Name:*

> * General Location/state/city:* Riverside, California (southern)

> * Pid Pumpkin:*

> * Age:* 13

> * Grade:* 8

> * School Status:* Full time and loving it. He goes to a small (300

> students) private Montessori school. The middle school campus (grades 7-9)

> has about 70 kids.

> *Siblings & Ages:* Tyler, 17

> * Diagnosis:* *Hypogammaglobulinemia* - low overall IgG and IgG subclass 1

> * How Long Since Diagnosis:* 1 year November 26

> * Treatment:* Privigin, 40g every 28 days via IV, antivirals and

> antibiotics prophylactically

> * Additional Health Concerns:* mild autism, also diagnosed with autoimmune

> NOS about 8 years ago, but all autoimmune issues, such as joint

> pain/swelling have resolved with IVIG.

> * Best Website for dealing with all this PI stuff:* IDF without a doubt!

> * Best resource you've found:* This listserv and its archives have been

> the BEST resource!

> * Best PI Tip: *Make sure you surround yourself and your child with

> doctors and specialists who respect your opinion, answer your questions, and

> communicate well with each other.

>

> Tell us a little about yourself/your child, or anything! I work in the

> field of special education, representing families and children with special

> needs- mostly 504's and IEP's. is much less resistant to having an IV

> each month because it makes him feel better! He is an fantastic kid who

> loves the outdoors, computers and creating video games.

>

[Guest guest]

Name Janes

General Location/state/ city: Texarkana, AR

Pid Pumpkin:

Age: 4.5 years

Grade: Pre-K

School Status: Homeschool

SIblings & Ages: Camille, 6 years (1st grade - also homeschooled)

Diagnosis: CVID

How Long Since Diagnosis: 3 months

Treatment: 13 ml Vivaglobin weekly, sub-q

Additional Health Concerns: GERD, chronic constipation, some environmental

allergies, food intolerances, possible food allergies

Best Website for dealing with all this PI stuff: several

Best resource you've found: this group

Best PI Tip: Do what you can to prevent infections, but go out there and enjoy

life!

Tell us a little about yourself/your child, or anything! I was a public school

teacher before I married my husband. I now stay home with my children. We

homeschool and love it! I do some writing (have had a few things published) and

enjoy reading and Bible study immensely. My children are involved in our local

homeschool group, dance, and church activities, including choir and AWANA.

This may be a good way to connect with others in your area, or your

childs age range

>

> Are you reading? Posting? Sitting Back? CHECK IN!! Let us know how

everything is going! I knew we did this once before, and realized when I looked

back it was in 2006!!! (If you think about it, try to reply to this message, so

it all stays in one thread, and we can look back on it if we need it)

>

> Let's CONNECT!!! Cut and Paste below! (answer with whatever you're

comfortable with):

>

> Name

> General Location/state/city:

> Pid Pumpkin:

> Age:

> Grade:

> School Status:

> SIblings & Ages:

> Diagnosis:

> How Long Since Diagnosis:

> Treatment:

> Additional Health Concerns:

> Best Website for dealing with all this PI stuff:

> Best resource you've found:

> Best PI Tip:

>

> Tell us a little about yourself/your child, or anything!

>

> This may be a good way to connect with others in your area, or your

> childs age range

>

[Guest guest]

>

> Let's CONNECT!!! Cut and Paste below! (answer with whatever you're

comfortable with):

>

> Name a B

> General Location/state/city: Western New York

> Pid Pumpkin: (8) and (12) and (4)

> Age:

> Grade: M is in 3rd and L is in 7th

> School Status: homeschooled due to medical conditions and having a ball!

> SIblings & Ages: (14)

> Diagnosis: Unspecified Immune Deficiency secondary to Mitochondrial Disease

> How Long Since Diagnosis: 10 months

> Treatment: bi-weekly IMIG

> Additional Health Concerns: Mito, seizures, Eosinophilic Enteropathy, g-tubes,

asthma, heart conditions, hypoglycemia, a real mixed bag

> Best Website for dealing with all this PI stuff: Have found a lot of good info

here, on IDF's site, on parent-2-parent, UMDF's website

> Best resource you've found: The dollar store for bribery after shots

> Best PI Tip: Wash hands every chance you get!! Use purell in between. Take the

first appt of the day at the docs so everything is clean and uncontaminated.

>

> Tell us a little about yourself/your child, or anything! The kids try to live

as normal a life as possible. They love horses, reading, the library, soccer,

PT, violin, piano, cello, and having fun together. Life is not about waiting for

the storm to pass, it's about learning to dance in the rain!

>

[Guest guest]

Sorry, mine is a little longer . . I got carried away.

We have three people with CVID in our family.

> Name

Mark

> General Location/state/city:

Cleveland Ohio area

> Pid Pumpkins:

Jordan and Sari

> Age:

Jordan 20 and Sari 18

> Grade:

Jordan - College soph, Sari is doing a Gap year between High School Graduation

and College

> School Status:

Jordan - advance paramedic major, Sari accepted into Univ of Pennsylvania

nursing school for fall 2010

> Siblings & Ages:

only the two

> Diagnosis:

CVID -- three of us

> How Long Since Diagnosis:

Jordan 6 years and Sari 4 years

> Treatment:

I get 80 grams of Gamunex, Jordan 50 grams Gamunex every 4 weeks (we infuse at

the same time every month) and Sari nothing (her choice)

> Additional Health Concerns:

Jordan has Epilepsy and Diabetes, Sari had GI issues

> Best Website for dealing with all this PI stuff:

primaryimmune.org

> Best resource you've found:

IDF - - website, national conference and family workshops

> Best PI Tip:

kids know more than we give them credit for . . . to the greatest extent

possible give then control over their lives; let them make choices. Some may not

be what we would choose for them but if we keep them in a cocoon although it

might make us feel more comfortable, we are not doing them any favors.

Eventually they will be on their own.

> Tell us a little about yourself/your child, or anything! Since you ask

I was diagnosed with CVID in 1981 (age 34)and have been infusing at home for the

past 25 years. I was featured on the Gamunex promotional DVD last year and had

the opportunity to address the 250 people who manufacture Gamunex in the

Talecris factory in North Carolina. I've been married for 25 years to the same

woman. I run a small investment banking consulting firm, (my second career). My

wife has a regular job a director of development for a private day school so we

can have medical benefits.

Jordan, age 20, was student government president of his college last year. He

ran for city council in our suburb this year and got 603 votes, not bad for a 20

year old first time out. He attend boarding schools in the East for junior high

and high school.

He is very active in everything, from being a Red cross disaster relief

volunteer (the call at 2 AM that a family has be burnt out of their home and

someone needs to arrange immediate accommodations for them; clothes and a roof

over their head).

He spent the past two winter breaks in New Orleans on a Habitat for Humanity

Project. He spent the past two spring breaks in Israel on community service

projects. He was head for route safety for the 60 mile breast cancer walk in

Cleveland last year and on and on.

Sari, age 18, graduated form an all girls prep school last spring. Although she

has her college acceptance, she decided to do a year of community service and is

currently a participant in City Year,a part of Americorp, in Boston. She will

spend 1700 hours over the next 10 months volunteering is an inner city Boston

elementary school do in pullouts for math and reading, mentoring, and running

after school and vacation programs. She is living in her first apartment with 4

other city year volunteers (and they think they may have an additional roommate;

it's small, gray, four legged and has a long tail. They named it Willy and are

desperately trying to capture it.)

Sari has CVID and for some unknown reason (not that we are complaining) stays

pretty healthy. She is not currently on IViG; her choice against medical advice.

She has GI issues that developed on a school trip to China two years ago. She

ended up in a rural hospital where she was the first American they had ever

seen. She spent a week at NH last year but we still can't figure out exactly

what is going on.

We are very lucky . .they are both great kids. I think being a parent with CVID

has made it much easier to help my wife raise our kids . . . . all of their good

qualities come form her . . . . not me.

> This may be a good way to connect with others in your area, or your

> childs age range

>