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

[Guest guest]

My name is nancy.

I have 3 kids. 16 yr boy, 11 yr boy & a 10 yr girl. My 10 yr old girl has

I.R.A.K. - 4 deficency. PIDD. Her t- cells and b-cells don't work. She has had

36 pnemonia's and many more than that reportory infections. We live in fl. We

travel to St. Pete to all childrens hospital for her. We are actually looking to

move closer to there soon!!

  Byrd

Philippians 1:2

Grace and peace to you from God our Father and the Lord Jesus Christ!

________________________________________________________________________________\

___________________

________________________________

From: MarkL <lev@...>

Sent: Wed, November 11, 2009 9:42:22 AM

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

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

>

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

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 name is nancy.

I have 3 kids. 16 yr boy, 11 yr boy & a 10 yr girl. My 10 yr old girl has

I.R.A.K. - 4 deficency. PIDD. Her t- cells and b-cells don't work. She has had

36 pnemonia's and many more than that reportory infections. We live in fl. We

travel to St. Pete to all childrens hospital for her. We are actually looking to

move closer to there soon!!

  Byrd

Philippians 1:2

Grace and peace to you from God our Father and the Lord Jesus Christ!

________________________________________________________________________________\

___________________

________________________________

From: MarkL <lev@...>

Sent: Wed, November 11, 2009 9:42:22 AM

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

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

>

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

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 Pam Moran

General Location/state/city: Alabama

Pid Pumpkin:

Age: 8

Grade: 2

School Status: Regular

SIblings & Ages: Logan 4

Diagnosis: Selective IGA Deficiency , Asthma

How Long Since Diagnosis: 7 years

Treatment: As needed

Additional Health Concerns:

Best Website for dealing with all this PI stuff:

Best resource you've found: This group

Best PI Tip:

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:

General Location/state/city: Lafayette, IN

Pid Pumpkin: Conner 15, Hayden 15, Evan 15 and Kelsey 13 - and me and (my

husband)

Age: see above

Grade: 9th and 8th

School Status: all kids currently attending school full time!

SIblings & Ages: see above

Diagnosis: Conner - NEMO and complement deficiency, Hayden - complement

deficiency, Evan - complement deficiency and low NK function, Kelsey - NEMO

carrier, complement deficiency, low NK function. (my husband also has a

complement deficiency and I am a NEMO carrier)

How Long Since Diagnosis: 5-6 years for PID; 3 years ago for NEMO

Treatment: Conner - bone marrow transplant, other kids - none at this time

Additional Health Concerns: Kelsey deals with a lot of joint pain and I have

probable Lupus dx

Best Website for dealing with all this PI stuff:

Best resource you've found: This group and Dr. Bleesing (genius!)

Best PI Tip: ***get a second (or third or fourth) opinion!***

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

I'm very thankful to Ursula for starting this group and for all of the families

who participate. So many of you were instrumental in encouraging me to keep

pushing for answers and to find the right immunologist to get an accurate

diagnosis before it was too late.

www.caringbridge.org/visit/smithkids

[Guest guest]

I've been reading some of your posts and what amazes me is how many of our

kiddos have asthma conditions, feeding issues/disorders, GI distrubances, and

some possible mitochondrial/metobolic disorders...It amzes me how in some form

or fashion all of these pieces fit into the larger puzzle. It all has to be

connected at some level, somehow.

Thanks!

Name Kymberlie Tyson

> General Location/state/ city:Birmingham, AL

> Pid Pumpkin: Cambrie

> Age:2

> Grade:-

> School Status:can't attend school at this time

> SIblings & Ages:Ella Grace, 4 yrs

> Diagnosis:PID, hypogammaglobulimemia, TCell Deficiency, NK Deficiency, GTube,

GI disturbances, Chronic Diarrhea/Constipation, asthma, GERD, Chronic

infections, ?mitochondrial disease, autonomic neuropathy, hypotonia, failure to

thrive, dumping syndrome

> How Long Since Diagnosis:since Birth

> Treatment:IVIG since 9 months

> Additional Health Concerns:, adenoidectomy, tonsillectomy, sinus surgery,

muscle biopsy, gtube, nissen fundoplication, multiple medications.

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

> Best resource you've found:Immunologist

> Best PI Tip:Wash your hands and Enjoy life!

>

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

>

> >

> > 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]

I've been reading some of your posts and what amazes me is how many of our

kiddos have asthma conditions, feeding issues/disorders, GI distrubances, and

some possible mitochondrial/metobolic disorders...It amzes me how in some form

or fashion all of these pieces fit into the larger puzzle. It all has to be

connected at some level, somehow.

Thanks!

Name Kymberlie Tyson

> General Location/state/ city:Birmingham, AL

> Pid Pumpkin: Cambrie

> Age:2

> Grade:-

> School Status:can't attend school at this time

> SIblings & Ages:Ella Grace, 4 yrs

> Diagnosis:PID, hypogammaglobulimemia, TCell Deficiency, NK Deficiency, GTube,

GI disturbances, Chronic Diarrhea/Constipation, asthma, GERD, Chronic

infections, ?mitochondrial disease, autonomic neuropathy, hypotonia, failure to

thrive, dumping syndrome

> How Long Since Diagnosis:since Birth

> Treatment:IVIG since 9 months

> Additional Health Concerns:, adenoidectomy, tonsillectomy, sinus surgery,

muscle biopsy, gtube, nissen fundoplication, multiple medications.

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

> Best resource you've found:Immunologist

> Best PI Tip:Wash your hands and Enjoy life!

>

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

>

> >

> > 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]

I was wondering this too - what's the connection between mito/metabolic

disorders and immune dysfunction?  It's something I probably should consider

for my son but I don't get the link.  If someone could expand on this, I'd very

much appreciate it!

________________________________

From: kymberlie <kymberlietyson@...>

Sent: Tue, November 17, 2009 12:26:10 AM

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

 

I've been reading some of your posts and what amazes me is how many of our

kiddos have asthma conditions, feeding issues/disorders, GI distrubances, and

some possible mitochondrial/ metobolic disorders... It amzes me how in some form

or fashion all of these pieces fit into the larger puzzle. It all has to be

connected at some level, somehow.

Thanks!

Name Kymberlie Tyson

> General Location/state/ city:Birmingham, AL

> Pid Pumpkin: Cambrie

> Age:2

> Grade:-

> School Status:can't attend school at this time

> SIblings & Ages:Ella Grace, 4 yrs

> Diagnosis:PID, hypogammaglobulimem ia, TCell Deficiency, NK Deficiency, GTube,

GI disturbances, Chronic Diarrhea/Constipati on, asthma, GERD, Chronic

infections, ?mitochondrial disease, autonomic neuropathy, hypotonia, failure to

thrive, dumping syndrome

> How Long Since Diagnosis:since Birth

> Treatment:IVIG since 9 months

> Additional Health Concerns:, adenoidectomy, tonsillectomy, sinus surgery,

muscle biopsy, gtube, nissen fundoplication, multiple medications.

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

> Best resource you've found:Immunologist

> Best PI Tip:Wash your hands and Enjoy life!

>

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

>

> >

> > 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]

I was wondering this too - what's the connection between mito/metabolic

disorders and immune dysfunction?  It's something I probably should consider

for my son but I don't get the link.  If someone could expand on this, I'd very

much appreciate it!

________________________________

From: kymberlie <kymberlietyson@...>

Sent: Tue, November 17, 2009 12:26:10 AM

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

 

I've been reading some of your posts and what amazes me is how many of our

kiddos have asthma conditions, feeding issues/disorders, GI distrubances, and

some possible mitochondrial/ metobolic disorders... It amzes me how in some form

or fashion all of these pieces fit into the larger puzzle. It all has to be

connected at some level, somehow.

Thanks!

Name Kymberlie Tyson

> General Location/state/ city:Birmingham, AL

> Pid Pumpkin: Cambrie

> Age:2

> Grade:-

> School Status:can't attend school at this time

> SIblings & Ages:Ella Grace, 4 yrs

> Diagnosis:PID, hypogammaglobulimem ia, TCell Deficiency, NK Deficiency, GTube,

GI disturbances, Chronic Diarrhea/Constipati on, asthma, GERD, Chronic

infections, ?mitochondrial disease, autonomic neuropathy, hypotonia, failure to

thrive, dumping syndrome

> How Long Since Diagnosis:since Birth

> Treatment:IVIG since 9 months

> Additional Health Concerns:, adenoidectomy, tonsillectomy, sinus surgery,

muscle biopsy, gtube, nissen fundoplication, multiple medications.

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

> Best resource you've found:Immunologist

> Best PI Tip:Wash your hands and Enjoy life!

>

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

>

> >

> > 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]

I will try to explain it as our immunologist has explained it to me and see if

it makes sense.

With Mito, there is just an overall energy deficiency. There is a breakdown

somewhere in the cycle your body uses to break down the food you eat and turn it

into energy. So, you start out the day with half the energy or less than

everyone else who does not deal with this. Your body will allocate that energy

to critical body functions first…heart, brain, lungs, liver. Then, the rest

of the energy is parceled out as it is needed…GI tract for digestion when

eating, immune system when sick and fighting a germ, muscles when active.

Because the GI tract has the most mitochondria per square inch of all the organ

systems, it is often affected by Mito because there just is not enough energy to

break down the food and move it through. That is why a lot of Mito kids have GI

issues…gastroparesis, pseudo-obstruction, feeding intolerance, need for a

feeding tube, malabsorption, malnutrition, etc.

When someone with Mito gets sick, it is a HUGE energy draw to the system and can

often put someone into metabolic crisis with lack of energy to fight off germs

and keep the other body functions running sufficiently at the same time. This

is why kids with Mito get sick often and cannot fight off germs as easily as

other kids. It also requires a great deal of energy for the immune system to

function properly. So, functions like production of immunoglobulins often fall

short since there is not enough energy in the body to produce what you need.

So, Mito kids often have low Ig levels like mine do because it is the best their

body can do. They also have difficulty retaining vax titers as well due to the

energy required to process that vax into antibodies and “remember†it. This

is why kids with Mito often do not respond to vaxes at all or their bodies

“forget†the vaxes over time and it looks like they lost the response they

initially had. My middle son used to have decent initial titer levels that he

would lose over time and gradually that worsened until he no longer responds to

his vaxes at all. It was just too much of an energy draw for his body to

respond to and remember the vaccines he had received. Because he was sick ALL

the time last winter (he was on abx for 100 days, had the flu, cocksackie, a GI

bug that landed him inpatient, and other stuff) everything struggled due to the

huge energy draw fighting illness was causing to his body. Now that he is on

IVIG and is not fighting illness all the time, his overall health is SO much

better and he has had a growth spurt that made his endo thrilled! My older son

has shown improvement in his overall health recently (now that we have a lot of

things under control that were not before) and we have noticed a slow

improvement in his overall Ig levels along with that and a small improvement in

his vaccine “memoryâ€. He is remembering the vaxes for longer periods of time

now than he was able to before so we are not needing to revax as often as we

were before.

As for the technical stuff, our immuno is doing a study on all her Mito patients

from the Mito clinic at our hospital. She compares labs from all the Mito

patients and is noticing similarities in the bloodwork from all those patients

who have struggled with immunodeficiency. She and our Mito neuro presented this

at the last UMDF symposium over the summer and peaked a lot of interest. She is

also working with Dr DiMauro from Columbia Univ. as well. I do not know all the

details, but more is being discovered as it is studied more closely.

With Mito, it is all about support. Anything we can do to support these kids

helps reduce the stress and energy draw on their body tremendously. My older

son changed from g to j feeds and started overnight O2 and has been healthier

and stronger than he has in years. My middle son started IVIG and has not been

sick since before the first infusion (even with family members ill in the same

house) and his health has overall been better than it has in years. Giving them

the support in an area they were struggling has done wonders for them.

Not sure if that helps or not, but that is what I understand from discussing

this with our immuno since we have seen her.

Melody, mom t 3 little boys with Mito (complex 1) and immunodeficiency secondary

to the Mito

From: [mailto: ] On Behalf Of

Sent: Tuesday, November 17, 2009 8:19 AM

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

I was wondering this too - what's the connection between mito/metabolic

disorders and immune dysfunction? It's something I probably should consider for

my son but I don't get the link. If someone could expand on this, I'd very much

appreciate it!

________________________________

From: kymberlie <kymberlietyson@... <mailto:kymberlietyson%40> >

<mailto:%40>

Sent: Tue, November 17, 2009 12:26:10 AM

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

I've been reading some of your posts and what amazes me is how many of our

kiddos have asthma conditions, feeding issues/disorders, GI distrubances, and

some possible mitochondrial/ metobolic disorders... It amzes me how in some form

or fashion all of these pieces fit into the larger puzzle. It all has to be

connected at some level, somehow.

Thanks!

Name Kymberlie Tyson

> General Location/state/ city:Birmingham, AL

> Pid Pumpkin: Cambrie

> Age:2

> Grade:-

> School Status:can't attend school at this time

> SIblings & Ages:Ella Grace, 4 yrs

> Diagnosis:PID, hypogammaglobulimem ia, TCell Deficiency, NK Deficiency, GTube,

GI disturbances, Chronic Diarrhea/Constipati on, asthma, GERD, Chronic

infections, ?mitochondrial disease, autonomic neuropathy, hypotonia, failure to

thrive, dumping syndrome

> How Long Since Diagnosis:since Birth

> Treatment:IVIG since 9 months

> Additional Health Concerns:, adenoidectomy, tonsillectomy, sinus surgery,

muscle biopsy, gtube, nissen fundoplication, multiple medications.

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

> Best resource you've found:Immunologist

> Best PI Tip:Wash your hands and Enjoy life!

>

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

>

> >

> > 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]

In basic terms. The immune system is ALL over our bodies. The skin, mucus

membranes in the nose, sinuses, lungs and gut. They are all the first line of

defense or points of entry for infections. When something is chronically

fighting infection then it will become inflamed and weakened. My son's allergies

and autoimmune issues have also improved with Gamma Globulin probably partly due

with there being less stress on his overall system or a better equilibrium. Thus

the wide range or variations in problems that we are all seeing. The immune

system is VAST and VERY complex. Each deficiency for each person is very

individualized and dynamic therefore the variations in deficits and

dysfunctions. It is exciting to see all science is learning about immune

deficiencies and I am hopeful for many new break throughs in the future.

BARBIE

________________________________

From: kymberlie <kymberlietyson@...>

Sent: Mon, November 16, 2009 11:26:10 PM

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

I've been reading some of your posts and what amazes me is how many of our

kiddos have asthma conditions, feeding issues/disorders, GI distrubances, and

some possible mitochondrial/ metobolic disorders... It amzes me how in some form

or fashion all of these pieces fit into the larger puzzle. It all has to be

connected at some level, somehow.

Thanks!

Name Kymberlie Tyson

> General Location/state/ city:Birmingham, AL

> Pid Pumpkin: Cambrie

> Age:2

> Grade:-

> School Status:can't attend school at this time

> SIblings & Ages:Ella Grace, 4 yrs

> Diagnosis:PID, hypogammaglobulimem ia, TCell Deficiency, NK Deficiency, GTube,

GI disturbances, Chronic Diarrhea/Constipati on, asthma, GERD, Chronic

infections, ?mitochondrial disease, autonomic neuropathy, hypotonia, failure to

thrive, dumping syndrome

> How Long Since Diagnosis:since Birth

> Treatment:IVIG since 9 months

> Additional Health Concerns:, adenoidectomy, tonsillectomy, sinus surgery,

muscle biopsy, gtube, nissen fundoplication, multiple medications.

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

> Best resource you've found:Immunologist

> Best PI Tip:Wash your hands and Enjoy life!

>

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

>

> >

> > 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: Jenn Racek

General Location/state/city: Dallas

Pid Pumpkin: Cassidy

Age: 5

Grade: Kindergarden

School Status: Public

SIblings & Ages: None

Diagnosis: CVID

How Long Since Diagnosis: 1 year

Treatment: IVIG every 3 weeks

Additional Health Concerns: Cystic Fibrosis

Best resource you've found: This group

Best PI Tip: The cool Baxter therapy bear, Iggy V. My daughter loves it and it's

great play therapy.

Jenn

Mom to Cassidy, 5yrs w/CF, CVID, G-tube and Port

>

> 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: Stettner

> General Location/state/city: Hillsborough, CA (bay area)

> Pid Pumpkin: Jordan Stettner

> Age: 2

> Grade: preschool

> School Status: school 3 days a week when healthy

> SIblings & Ages: 6

> Diagnosis: Hypogammaglobulineamia

> How Long Since Diagnosis: 6 months

> Treatment: antibiotics

> Additional Health Concerns: celiacs

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

> Best resource you've found: Our Pediatrician (holistic pedi) and this group

> Best PI Tip: Last weekend I was supposed to take a girls trip to Tahoe and

ended up in the ER the night before with Jordan having severe croup. I debated

and debated on going. I felt terrible leaving my husband to deal with it. My

mom finally said to me " When you have a kid that is sick all the time, you need

to take a break or you too will get run down and not be able to take good care

of him " So I went! It was the best advice. He was still sick when I got home,

but I was so refreshed and way more compassionate.

>

> 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

> >

> > 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: Kristy

> General Location/state/city: Austin TX

> Pid Pumpkin: Lucas

> Age: 13 months

> Grade: N/A

> School Status: Daycare

> SIblings & Ages: None

> Diagnosis: Still testing but, he isn't producing any antibodies

> How Long Since Diagnosis: 8 months

> Treatment: His Immune doctor is talking abot doing IVIG every 3 weeks

> Additional Health Concerns: He has on going Upper Resp. Infections

> Best resource you've found: This group

> Best PI Tip: Haven't gotten any yet.

> > >

> > 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

> >

>