Hi from Dale

[Guest guest]

from Dale, Mom to Katy, CVID, married

I learned a long time ago that there were different products for a

reason. IDF will be the first to agree with that and have published

papers regarding the differences.

My first encounter was when Katy first started IVIG -- she was using a

product -- we'll call " Brand A " . After 3 months of terrible side

effects, her nurse (bless her) suggested we try a different product

" Brand B " to see if that would help. It did. I was incensed that my

daughter had been given " an inferior product " until I found out that

several of my friends were saying the exact opposite. Their kids

were reacting to Brand B - and doing well with Brand A.

Studies have shown that it is NOT the product itself -- it is how our

very individualized bodies react to the product.

Now, it is imperative that the manufacturers and/or FDA be informed of

ALL side effects. It is imperative that they know what the side effects

are and decide if there is a problem that needs to be addressed -

especially if the side effects are permanent or life-threatening. But,

it does not necessarily mean that the product is 'bad'.

It does mean that you may need to look at a different product.

So, relax ladies. It's great that some of you can use Viva -- and it's

sad that some of you can't. The major point is that if you have a

reaction to any product -- we need to determine the best and most

effective way to report it. If the manufacturers are not being

responsive, we need to take it to the next level. If you don't know who

to report it to -- ask this group. They seem to be pretty

knowledgeable. But as advocates for our kids -- we must make sure our

voices are heard

In His service,

dale

[Guest guest]

awww crud Dale. why ya wanna go and do that? Lurk for heavens sake. I'm so

happy for your son in law. What a blessing. I hope that Katy continues to do

well. please reconsider.

Ursula

[Guest guest]

Dale, I'm also one who has benefitted from you being on the list

so many years. I believe I joined over 9 years ago and loved all

along. She is a few years older than my son and was an inspiration

for us. I have always loved your posts. Thank you so much for all

the time you have given to our group. Thank you for the update on

, and I'm so happy for your son in law. My son went to a university

in January that is very far from home. It was hard setting up the IVIG

but it worked out, and he has done very well there. He is home this

summer, and is looking forward to returning in August.

We couldn't be more blessed. Wanted to give you that quick update.

I don't post very often, but still enjoy this group a lot. It would be great

if you could pop back in from time to time to give us an update on your

family. We will really miss you.

Jan

[Guest guest]

For Dale

I've been overwhelmed and lurking for a few months but saw your post and wanted

to express my sincere thanks to you through the years. Dani is almost 8 years

old and doing well with sub-q. I'm not sure that I would have been able to do

this procedure without your help and Katy's trailblazing. I " ve learned so much

from you, Dale. Your absence will be noticed and a significant loss to this

group.

I had a baby a couple months ago. He is gorgeous and round. 8 lbs at birth and

delivered " naturally " . By the second month, he developed a GI infection and was

in the hospital overnight for diarrhea/dehydration. We're in a holding pattern

until the vaccinations are complete. (Hoping for the best and bracing for the

worst.) I've been absolutely swamped...

Sending thanks and appreciation. Blessings to your family.

mom to Dani, 7, CVID+

________________________________

From: Dale Weatherford <daleweath@...>

Sent: Tuesday, July 7, 2009 7:21:09 PM

Subject: Hi from Dale

Dear Group,

I have been a member of PEDPID since it was started by Ursula many, many

years ago. At that time I was able to attend all the training sessions

with IDF and was very much " up to date " . But several things have

changed. Katy has grown up - she's 25 now and married and lives in

Florida -- I live in California. And since I took over the care of my

mother, I have been unable to attend the training sessions and

conferences and therefore, I'm afraid that the information that I have

is out of date and I would not want to mislead or hurt anyone.

Therefore, I have come to the conclusion that it's time for me to retire

from the group.

I wanted to give an update to all of you who " watched " Katy grow up.

I'll try to make it in a way that you new-comers can relate.

Katy was diagnosed at age 13. She became ill at 11 and was passed

around to many, many doctors before diagnosis. I was accused of making

her mentally sick and she was accused of everything under the sun before

we finally had a diagnosis. I encourage those of you who are in the

pre-diagnosis stage to hang in there -- it's rough. But things are

changing for the better -- and it's groups like this that are empowering

parents to stand up for their kids and talk back to their doctors -- to

keep searching for answers as to why their kids are sick and to keep

fighting for the truth.

Ursula invited me to join this group after I began posting to the IPOPI

site about our problems with an infusion center that was trying to

" kill " Katy by running her IVIG near 100 at her initial IVIG.

Belonging to this group has helped me to have a group of women (and a

few good men through the years) with whom I could compare notes and come

to realize what was normal and what was not.

I remember panicking every time some little infection came up. I would

rush her to the ER -- certain that she would die before I could get her

there. Later, I would feel like an idiot. Those are hard years -- the

first 1 or 2 after diagnosis -- but it was this group that helped me to

calm down and realize that infections were going to come and go and that

we would survive -- mostly! It was through this group that I learned

how important rate of infusion and hydration was.

Then I remember the stage where IVIG just became normal. We learned to

deal with the fatigue issues and constant sinusitis. With God's help we

learned to make a good life and Katy began to return to healthy

activities. She started taking college classes (I was a home educator

long before she became ill). She managed to graduate with her peers and

moved away to live in the dorm at college. It was during those years

that she cut the CD for Bayer's Gamimune - the forerunner of Gamunex and

felt like a princess and movie star! She began to really take on the

role of advocate and ally to other kids with CVID.

During those years at college, she began researching this new technique

called Sub-Q and while on her own at college, made the transition! I

was so proud of her. She attended the IDF training sessions with me and

her intention was to become an IDF peer support just as soon as she

finished college.

But love intervened. She eloped, broke her parent's hearts, dropped out

of college her senior year and moved to Florida. Many of you journeyed

with us through that really hard time.

It was at that time that she quit her IgG replacement therapy due to not

having medical insurance. All we could do was to pray for God's

protection and provision.

For 4 years now, she has done without IgG replacement. We still don't

know if God has totally healed her or whether this is just a temporary

remission -- but she has done remarkably well health wise. She still

doesn't have health insurance but hasn't had a single infection that

required medical intervention since she stopped. She has a lot of

stomach upsets and colds, but they eventually clear and she is mostly

healthy and able to hold down a full-time job. She's still only 5'2 "

and struggles to keep 100 pounds on her, but she's strong and doing well.

I don't want to give false hope to people -- because I don't know

whether Katy is " healed " - since she hasn't had any blood work. A

doctor that I talked with a couple of years ago said that until her Ig

levels are tested and she is re-vaccinated and her titers tested, then

we couldn't claim that she was healed -- simply that she was clinically

doing well.

I wanted to update everyone on her before retiring. While we very much

disapproved of her decision to marry without our input, God has blessed

her with a wonderful young man who loves her. He has recently accepted

the Lord Jesus as his Savior and they are in the beginning stages of

putting their life on His solid foundation. We are in a good

relationship with both of them.

So thank you to all you " old timers " who prayed for Katy and journeyed

with me through this incredible journey. It has been my privilege to be

a part of this community and to count you as friends.

May God bless you each one. Thank You Ursula for putting up with us and

making this site a success.

I can be reached at daleweathgmail (DOT) com.

The Bible study that I began writing during Katy's illness (geared to

women under stress) can be found online at Biblestudy.xidus. net

In His service,

dale

[Guest guest]

Great to hear from you, ! I've been wondering where you have been -

I guess busy with a new baby! We are expecting a baby (#4) later this month

and I am already concerned about what the future holds for her, especially

since and Meredith were diagnosed with mitochondrial disease last

month. Only time will tell with both of ours!

Good luck!

Mom to , 6 - PI secondary to mito

Meredith, 4 - PI secondary to mito

, 9 - busy ballerina

And Baby Madison coming on or before July 31!

From: [mailto: ] On Behalf Of

Schulman

Sent: Wednesday, July 08, 2009 1:18 PM

Subject: Re: Hi from Dale

For Dale

I've been overwhelmed and lurking for a few months but saw your post and

wanted to express my sincere thanks to you through the years. Dani is almost

8 years old and doing well with sub-q. I'm not sure that I would have been

able to do this procedure without your help and Katy's trailblazing. I " ve

learned so much from you, Dale. Your absence will be noticed and a

significant loss to this group.

I had a baby a couple months ago. He is gorgeous and round. 8 lbs at birth

and delivered " naturally " . By the second month, he developed a GI infection

and was in the hospital overnight for diarrhea/dehydration. We're in a

holding pattern until the vaccinations are complete. (Hoping for the best

and bracing for the worst.) I've been absolutely swamped...

Sending thanks and appreciation. Blessings to your family.

mom to Dani, 7, CVID+

________________________________

From: Dale Weatherford <daleweath@... <mailto:daleweath%40gmail.com> >

<mailto:%40>

Sent: Tuesday, July 7, 2009 7:21:09 PM

Subject: Hi from Dale

Dear Group,

I have been a member of PEDPID since it was started by Ursula many, many

years ago. At that time I was able to attend all the training sessions

with IDF and was very much " up to date " . But several things have

changed. Katy has grown up - she's 25 now and married and lives in

Florida -- I live in California. And since I took over the care of my

mother, I have been unable to attend the training sessions and

conferences and therefore, I'm afraid that the information that I have

is out of date and I would not want to mislead or hurt anyone.

Therefore, I have come to the conclusion that it's time for me to retire

from the group.

I wanted to give an update to all of you who " watched " Katy grow up.

I'll try to make it in a way that you new-comers can relate.

Katy was diagnosed at age 13. She became ill at 11 and was passed

around to many, many doctors before diagnosis. I was accused of making

her mentally sick and she was accused of everything under the sun before

we finally had a diagnosis. I encourage those of you who are in the

pre-diagnosis stage to hang in there -- it's rough. But things are

changing for the better -- and it's groups like this that are empowering

parents to stand up for their kids and talk back to their doctors -- to

keep searching for answers as to why their kids are sick and to keep

fighting for the truth.

Ursula invited me to join this group after I began posting to the IPOPI

site about our problems with an infusion center that was trying to

" kill " Katy by running her IVIG near 100 at her initial IVIG.

Belonging to this group has helped me to have a group of women (and a

few good men through the years) with whom I could compare notes and come

to realize what was normal and what was not.

I remember panicking every time some little infection came up. I would

rush her to the ER -- certain that she would die before I could get her

there. Later, I would feel like an idiot. Those are hard years -- the

first 1 or 2 after diagnosis -- but it was this group that helped me to

calm down and realize that infections were going to come and go and that

we would survive -- mostly! It was through this group that I learned

how important rate of infusion and hydration was.

Then I remember the stage where IVIG just became normal. We learned to

deal with the fatigue issues and constant sinusitis. With God's help we

learned to make a good life and Katy began to return to healthy

activities. She started taking college classes (I was a home educator

long before she became ill). She managed to graduate with her peers and

moved away to live in the dorm at college. It was during those years

that she cut the CD for Bayer's Gamimune - the forerunner of Gamunex and

felt like a princess and movie star! She began to really take on the

role of advocate and ally to other kids with CVID.

During those years at college, she began researching this new technique

called Sub-Q and while on her own at college, made the transition! I

was so proud of her. She attended the IDF training sessions with me and

her intention was to become an IDF peer support just as soon as she

finished college.

But love intervened. She eloped, broke her parent's hearts, dropped out

of college her senior year and moved to Florida. Many of you journeyed

with us through that really hard time.

It was at that time that she quit her IgG replacement therapy due to not

having medical insurance. All we could do was to pray for God's

protection and provision.

For 4 years now, she has done without IgG replacement. We still don't

know if God has totally healed her or whether this is just a temporary

remission -- but she has done remarkably well health wise. She still

doesn't have health insurance but hasn't had a single infection that

required medical intervention since she stopped. She has a lot of

stomach upsets and colds, but they eventually clear and she is mostly

healthy and able to hold down a full-time job. She's still only 5'2 "

and struggles to keep 100 pounds on her, but she's strong and doing well.

I don't want to give false hope to people -- because I don't know

whether Katy is " healed " - since she hasn't had any blood work. A

doctor that I talked with a couple of years ago said that until her Ig

levels are tested and she is re-vaccinated and her titers tested, then

we couldn't claim that she was healed -- simply that she was clinically

doing well.

I wanted to update everyone on her before retiring. While we very much

disapproved of her decision to marry without our input, God has blessed

her with a wonderful young man who loves her. He has recently accepted

the Lord Jesus as his Savior and they are in the beginning stages of

putting their life on His solid foundation. We are in a good

relationship with both of them.

So thank you to all you " old timers " who prayed for Katy and journeyed

with me through this incredible journey. It has been my privilege to be

a part of this community and to count you as friends.

May God bless you each one. Thank You Ursula for putting up with us and

making this site a success.

I can be reached at daleweathgmail (DOT) com.

The Bible study that I began writing during Katy's illness (geared to

women under stress) can be found online at Biblestudy.xidus. net

In His service,

dale

[Guest guest]

Great to hear from you, ! I've been wondering where you have been -

I guess busy with a new baby! We are expecting a baby (#4) later this month

and I am already concerned about what the future holds for her, especially

since and Meredith were diagnosed with mitochondrial disease last

month. Only time will tell with both of ours!

Good luck!

Mom to , 6 - PI secondary to mito

Meredith, 4 - PI secondary to mito

, 9 - busy ballerina

And Baby Madison coming on or before July 31!

From: [mailto: ] On Behalf Of

Schulman

Sent: Wednesday, July 08, 2009 1:18 PM

Subject: Re: Hi from Dale

For Dale

I've been overwhelmed and lurking for a few months but saw your post and

wanted to express my sincere thanks to you through the years. Dani is almost

8 years old and doing well with sub-q. I'm not sure that I would have been

able to do this procedure without your help and Katy's trailblazing. I " ve

learned so much from you, Dale. Your absence will be noticed and a

significant loss to this group.

I had a baby a couple months ago. He is gorgeous and round. 8 lbs at birth

and delivered " naturally " . By the second month, he developed a GI infection

and was in the hospital overnight for diarrhea/dehydration. We're in a

holding pattern until the vaccinations are complete. (Hoping for the best

and bracing for the worst.) I've been absolutely swamped...

Sending thanks and appreciation. Blessings to your family.

mom to Dani, 7, CVID+

________________________________

From: Dale Weatherford <daleweath@... <mailto:daleweath%40gmail.com> >

<mailto:%40>

Sent: Tuesday, July 7, 2009 7:21:09 PM

Subject: Hi from Dale

Dear Group,

I have been a member of PEDPID since it was started by Ursula many, many

years ago. At that time I was able to attend all the training sessions

with IDF and was very much " up to date " . But several things have

changed. Katy has grown up - she's 25 now and married and lives in

Florida -- I live in California. And since I took over the care of my

mother, I have been unable to attend the training sessions and

conferences and therefore, I'm afraid that the information that I have

is out of date and I would not want to mislead or hurt anyone.

Therefore, I have come to the conclusion that it's time for me to retire

from the group.

I wanted to give an update to all of you who " watched " Katy grow up.

I'll try to make it in a way that you new-comers can relate.

Katy was diagnosed at age 13. She became ill at 11 and was passed

around to many, many doctors before diagnosis. I was accused of making

her mentally sick and she was accused of everything under the sun before

we finally had a diagnosis. I encourage those of you who are in the

pre-diagnosis stage to hang in there -- it's rough. But things are

changing for the better -- and it's groups like this that are empowering

parents to stand up for their kids and talk back to their doctors -- to

keep searching for answers as to why their kids are sick and to keep

fighting for the truth.

Ursula invited me to join this group after I began posting to the IPOPI

site about our problems with an infusion center that was trying to

" kill " Katy by running her IVIG near 100 at her initial IVIG.

Belonging to this group has helped me to have a group of women (and a

few good men through the years) with whom I could compare notes and come

to realize what was normal and what was not.

I remember panicking every time some little infection came up. I would

rush her to the ER -- certain that she would die before I could get her

there. Later, I would feel like an idiot. Those are hard years -- the

first 1 or 2 after diagnosis -- but it was this group that helped me to

calm down and realize that infections were going to come and go and that

we would survive -- mostly! It was through this group that I learned

how important rate of infusion and hydration was.

Then I remember the stage where IVIG just became normal. We learned to

deal with the fatigue issues and constant sinusitis. With God's help we

learned to make a good life and Katy began to return to healthy

activities. She started taking college classes (I was a home educator

long before she became ill). She managed to graduate with her peers and

moved away to live in the dorm at college. It was during those years

that she cut the CD for Bayer's Gamimune - the forerunner of Gamunex and

felt like a princess and movie star! She began to really take on the

role of advocate and ally to other kids with CVID.

During those years at college, she began researching this new technique

called Sub-Q and while on her own at college, made the transition! I

was so proud of her. She attended the IDF training sessions with me and

her intention was to become an IDF peer support just as soon as she

finished college.

But love intervened. She eloped, broke her parent's hearts, dropped out

of college her senior year and moved to Florida. Many of you journeyed

with us through that really hard time.

It was at that time that she quit her IgG replacement therapy due to not

having medical insurance. All we could do was to pray for God's

protection and provision.

For 4 years now, she has done without IgG replacement. We still don't

know if God has totally healed her or whether this is just a temporary

remission -- but she has done remarkably well health wise. She still

doesn't have health insurance but hasn't had a single infection that

required medical intervention since she stopped. She has a lot of

stomach upsets and colds, but they eventually clear and she is mostly

healthy and able to hold down a full-time job. She's still only 5'2 "

and struggles to keep 100 pounds on her, but she's strong and doing well.

I don't want to give false hope to people -- because I don't know

whether Katy is " healed " - since she hasn't had any blood work. A

doctor that I talked with a couple of years ago said that until her Ig

levels are tested and she is re-vaccinated and her titers tested, then

we couldn't claim that she was healed -- simply that she was clinically

doing well.

I wanted to update everyone on her before retiring. While we very much

disapproved of her decision to marry without our input, God has blessed

her with a wonderful young man who loves her. He has recently accepted

the Lord Jesus as his Savior and they are in the beginning stages of

putting their life on His solid foundation. We are in a good

relationship with both of them.

So thank you to all you " old timers " who prayed for Katy and journeyed

with me through this incredible journey. It has been my privilege to be

a part of this community and to count you as friends.

May God bless you each one. Thank You Ursula for putting up with us and

making this site a success.

I can be reached at daleweathgmail (DOT) com.

The Bible study that I began writing during Katy's illness (geared to

women under stress) can be found online at Biblestudy.xidus. net

In His service,

dale

[Guest guest]

Dear Ursula,

I want to make sure you understand that I am not " leaving because I'm

mad. " I just don't feel that I can make a significant contribution to

the group -- I haven't had little ones in my home in years and can't

relate to most of the questions. And as I stated before, my information

is old and outdated. I would rather exit than become a " has been! "

I have resigned from IDF for the same reasons - I don't feel that I have

a significant contribution to make. And I don't want to be a lurker --

I'll either be active or not.

So, thanks for a wonderful site that helped me so much. Someday, I may

feel differently and I'll contact you -- but for now, I just don't feel

that I have anything to contribute to the group. It's been my privilege

and joy to participate and encourage others. Thank you for your kind

words.

In His service,

dale

[Guest guest]

Dear Ursula,

I want to make sure you understand that I am not " leaving because I'm

mad. " I just don't feel that I can make a significant contribution to

the group -- I haven't had little ones in my home in years and can't

relate to most of the questions. And as I stated before, my information

is old and outdated. I would rather exit than become a " has been! "

I have resigned from IDF for the same reasons - I don't feel that I have

a significant contribution to make. And I don't want to be a lurker --

I'll either be active or not.

So, thanks for a wonderful site that helped me so much. Someday, I may

feel differently and I'll contact you -- but for now, I just don't feel

that I have anything to contribute to the group. It's been my privilege

and joy to participate and encourage others. Thank you for your kind

words.

In His service,

dale

[Guest guest]

Dale,

I have been mostly a lurker for the past 9 years, with occasional posts now and

then. During these years I kind of feel like I know many of you...just from

reading daily posts. I wish the best to you and your family. I know you have

helped so many people...including me from time to time. Life with a PID kid

goes in stages...the beginning is terrifying...then you get comfortable and

accepting of what cards you have been dealt and have learned to adjust. Now for

you, your baby is all grown up. Thank you for all your kind and helpful words,

which have helped many of us over the years adjust to our " new normal " . Thanks

again! Best of luck to you...

Kim, (Mom to 13-CVID)

Re: Hi from Dale

Dear Ursula,

I want to make sure you understand that I am not " leaving because I'm

mad. " I just don't feel that I can make a significant contribution to

the group -- I haven't had little ones in my home in years and can't

relate to most of the questions. And as I stated before, my information

is old and outdated. I would rather exit than become a " has been! "

I have resigned from IDF for the same reasons - I don't feel that I have

a significant contribution to make. And I don't want to be a lurker --

I'll either be active or not.

So, thanks for a wonderful site that helped me so much. Someday, I may

feel differently and I'll contact you -- but for now, I just don't feel

that I have anything to contribute to the group. It's been my privilege

and joy to participate and encourage others. Thank you for your kind

words.

In His service,

dale

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