Hi from Dale

[Guest guest]

Dale,

Congratulations on Katy's health. I will say a prayer that she

continues to do well and that she has outgrown " it " . That would be

so wonderful, because we all know what a long road it has been (and

many of us, still to go!). Cody was diagnosed when he was 10 months

old and he is 15 years old now. I pray he has the same outcome when

he reaches full puberty. Good luck and many prayers to you and your

family.

Judy Kennerly

>

> from Dale,

>

> Hi to all. I'm hesitant to post this -- and excited at the same

time.

>

> I've talked with Katy several times recently (for those that don't

know

> -- she eloped in August and declared her independence). At first

she

> was terrified and determined to not show it because she couldn't

afford

> her Sub-Q. She had her last dose in August. So, I prayed for her

> health safety.

>

> In November she told me she was fine - hadn't been sick at all and

she'd

> decided that she was well and didn't need Sub-Q anymore. I

thought --

> yes, there's still enough IgG from the last infusion floating

around.

> So I kept praying for her health safety.

>

> In early December she said that she was going to pierce her ears

for

> Christmas. She's pierced 3 places so far and all have rotted out

with

> infection. Not a pretty site -- so like every good mother, I said,

> " it's your body. " (Note -- she is over 21!) She doesn't want my

input

> -- so I don't give it. Besides what could I say except 'How can

you be

> so stupid? "

>

> She called last weekend and said, " I've proved it. " She had gotten

her

> ears pierced over Christmas weekend and they had already healed

properly

> -- no oozing, no redness, no swelling. They had just healed up

> perfectly. Also, the lady she works with had gotten that virus

with

> heacache, sore throat and vomiting that was going around over

Christmas

> and had been off work for a week. Katy came down with it over New

> Year's and only missed 3 days of work. It was clearing and she

called

> to tell me the great news.

>

> So.... I write to tell all of you -- there's hope. Some kids do I

> outgrow it.

> I'm also writing to say -- what do you think? Could what we've

prayed

> for, for so long really be happening? She can't afford to see a

> doctor, let alone an immunologist. Do I dare believe this without

blood

> work? " O ye of little faith. "

>

> So.... if this is an encouragement to anyone -- then I'm glad.

I'll

> keep you all posted as to how the year goes without Sub-Q and I

think

> I'll reserve my celebrating until August of 2006!

>

> For the new people -- Katy became ill at age 11. Was finally

diagnosed

> at age 13. Here were her numbers in August 1997 and the " normal "

levels

> I was given.

>

> IgG 381 normal 694-1618

> IgA 11 normal 68-378

> IgM 18 normal 60-263

>

> In 2000 her

> IgG went up to 827 on IVIG and we decided she needed an increase in

dosage.

> Her IgA went down to 9

> and her IgM was down to 13.

>

> We were also told that she had slight readings on IgD and IgE --

but too

> low to report.

>

> She was so sick from age 11 until about 6 months ago. Then she

quit

> Sub-Q out of necessity to pursue her dreams -- and Wow!

>

> Anyway,

>

> Hope this encourages all -- but know that I'm still reserving

judgment

> for a while! I don't want to give false hope -- but I don't want

to

> miss an opportunity to share good news! We all need that!

>

> In His service,

> Dale

>

[Guest guest]

" I'm also writing to say -- what do you think? "

Hi, Dale.

I think that you are an amazing parent to be able to give your daughter a

chance to take ownership over her own health. You gave her health and love

which enabled her to developed into a strong young woman and have a fierce sense

of hope.

Arabian Proverb

He who has health has hope; and he who has hope has everything.

Still, you are her best advocate and she may need you to spot her for some

time to come. Please let us know how Katy is doing.

Sending good wishes and hopes,

(mom to 4 year old struggling with " it " but doing well with IgG

therapy)

Dale Weatherford <dale@...> wrote:

from Dale,

Hi to all. I'm hesitant to post this -- and excited at the same time.

I've talked with Katy several times recently (for those that don't know

-- she eloped in August and declared her independence). At first she

was terrified and determined to not show it because she couldn't afford

her Sub-Q. She had her last dose in August. So, I prayed for her

health safety.

In November she told me she was fine - hadn't been sick at all and she'd

decided that she was well and didn't need Sub-Q anymore. I thought --

yes, there's still enough IgG from the last infusion floating around.

So I kept praying for her health safety.

In early December she said that she was going to pierce her ears for

Christmas. She's pierced 3 places so far and all have rotted out with

infection. Not a pretty site -- so like every good mother, I said,

" it's your body. " (Note -- she is over 21!) She doesn't want my input

-- so I don't give it. Besides what could I say except 'How can you be

so stupid? "

She called last weekend and said, " I've proved it. " She had gotten her

ears pierced over Christmas weekend and they had already healed properly

-- no oozing, no redness, no swelling. They had just healed up

perfectly. Also, the lady she works with had gotten that virus with

heacache, sore throat and vomiting that was going around over Christmas

and had been off work for a week. Katy came down with it over New

Year's and only missed 3 days of work. It was clearing and she called

to tell me the great news.

So.... I write to tell all of you -- there's hope. Some kids do I

outgrow it.

I'm also writing to say -- what do you think? Could what we've prayed

for, for so long really be happening? She can't afford to see a

doctor, let alone an immunologist. Do I dare believe this without blood

work? " O ye of little faith. "

So.... if this is an encouragement to anyone -- then I'm glad. I'll

keep you all posted as to how the year goes without Sub-Q and I think

I'll reserve my celebrating until August of 2006!

For the new people -- Katy became ill at age 11. Was finally diagnosed

at age 13. Here were her numbers in August 1997 and the " normal " levels

I was given.

IgG 381 normal 694-1618

IgA 11 normal 68-378

IgM 18 normal 60-263

In 2000 her

IgG went up to 827 on IVIG and we decided she needed an increase in dosage.

Her IgA went down to 9

and her IgM was down to 13.

We were also told that she had slight readings on IgD and IgE -- but too

low to report.

She was so sick from age 11 until about 6 months ago. Then she quit

Sub-Q out of necessity to pursue her dreams -- and Wow!

Anyway,

Hope this encourages all -- but know that I'm still reserving judgment

for a while! I don't want to give false hope -- but I don't want to

miss an opportunity to share good news! We all need that!

In His service,

Dale

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]

Dale,

I'm glad that things are going well for Katy right now...I think I would

be as you are, worried and concerned but hopeful...

Know that we are keeping her in our prayers and miracles do happen....

Thank you for all of your support and guidance to all of us here as we

begin this journey...

Mom to , selective antibody deficiency, hypogammaglobinemia and NK

cell defect?????unsure of what it all means...Started subq on Dec 28th

and already seeing a great improvement in his quality of life!

Hi from Dale

from Dale,

Hi to all. I'm hesitant to post this -- and excited at the same time.

I've talked with Katy several times recently (for those that don't know

-- she eloped in August and declared her independence). At first she

was terrified and determined to not show it because she couldn't afford

her Sub-Q. She had her last dose in August. So, I prayed for her

health safety.

In November she told me she was fine - hadn't been sick at all and she'd

decided that she was well and didn't need Sub-Q anymore. I thought --

yes, there's still enough IgG from the last infusion floating around.

So I kept praying for her health safety.

In early December she said that she was going to pierce her ears for

Christmas. She's pierced 3 places so far and all have rotted out with

infection. Not a pretty site -- so like every good mother, I said,

" it's your body. " (Note -- she is over 21!) She doesn't want my input

-- so I don't give it. Besides what could I say except 'How can you be

so stupid? "

She called last weekend and said, " I've proved it. " She had gotten her

ears pierced over Christmas weekend and they had already healed properly

-- no oozing, no redness, no swelling. They had just healed up

perfectly. Also, the lady she works with had gotten that virus with

heacache, sore throat and vomiting that was going around over Christmas

and had been off work for a week. Katy came down with it over New

Year's and only missed 3 days of work. It was clearing and she called

to tell me the great news.

So.... I write to tell all of you -- there's hope. Some kids do I

outgrow it.

I'm also writing to say -- what do you think? Could what we've prayed

for, for so long really be happening? She can't afford to see a

doctor, let alone an immunologist. Do I dare believe this without blood

work? " O ye of little faith. "

So.... if this is an encouragement to anyone -- then I'm glad. I'll

keep you all posted as to how the year goes without Sub-Q and I think

I'll reserve my celebrating until August of 2006!

For the new people -- Katy became ill at age 11. Was finally diagnosed

at age 13. Here were her numbers in August 1997 and the " normal " levels

I was given.

IgG 381 normal 694-1618

IgA 11 normal 68-378

IgM 18 normal 60-263

In 2000 her

IgG went up to 827 on IVIG and we decided she needed an increase in

dosage. Her IgA went down to 9 and her IgM was down to 13.

We were also told that she had slight readings on IgD and IgE -- but too

low to report.

She was so sick from age 11 until about 6 months ago. Then she quit

Sub-Q out of necessity to pursue her dreams -- and Wow!

Anyway,

Hope this encourages all -- but know that I'm still reserving judgment

for a while! I don't want to give false hope -- but I don't want to

miss an opportunity to share good news! We all need that!

In His service,

Dale

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]

In a message dated 2/24/2006 4:16:55 PM Pacific Standard Time, dale@...

writes:

Katy was in the acute stage for about 4 years -- 2 before diagnosis and

2 afterward. Her first year on IVIG, we continued to monitor, but after

that point, we realized that her infections were becoming further and

further apart and could be treated with 1 or 2 rounds of antibiotics

without complications. So, we lifted the restrictions (actually -- she

did long before I did!)

Dale--

Good point, many of us have gone through stages. I was hyper-vigilant

when Bri was getting strep every two or three weeks (right before starting

IVIG).

New toothbrushes with every new infection, clean pillowcase every day, etc,

etc.

Now that he's been on IVIG for a little over a year and we've seen drastic

improvements in his health, I am letting him just be a teenage boy (YIKES)!!

Of course, there is one thing left that he is not allowed to do...drink out of

the fountain at school. He takes a water bottle with him every day.

Sandi, Mom to --age 13--CVID

[Guest guest]

-This is my first posting. I hope you are okay after your weekend. I

got your name from the XLA group as someone who might be able to help

me go in the right direction. I have 2 sons with XLA. Both actually

do pretty well as long as they get the monthly infusion of IVIG. My

oldest will graduate from college soon and I am a nervous wreck about

insurance and how as an adult he will be able to keep getting his

medicine. We applied for SSI and he was denied because he is not

disabled, as hard as I tried to get across that without the meds he

would be disabled it did no good. Do you have any suggestions? I'm

thinking a lawyer may help....just not sure what to do. If you have any

advice please let me know. I'll do anything.

& , matt22 nick17 XLA south carolina

tdk@...- In , Dale Weatherford <dale@...>

wrote:

>

> Hey gang, I'm going to be away from my desk until late Sunday night

or

> Monday -- so take good care of each other. If you want to pray for

me,

> this will be my first attempt to attend a full weekend " conference "

> since my diagnosis of heart failure and I'm a little nervous. Hope

to

> bring you a good report of IDF activities when I return.

>

> In His service,

> dale

>

[Guest guest]

We applied for SSI and he was denied because he is not

> disabled, as hard as I tried to get across that without the meds he

> would be disabled it did no good. Do you have any suggestions?

, the best organization I've found for these kinds of questions is

ACCESS (Advocating for Chronic Conditions, Entitlements and Social

Services). Their number is 888-700-7010. I know that they have

lawyers who will fight for you to help you win, if they believe you are

entitled to it!!!!

They are actually working with IDF and Social Security to get the

revisions made in the definition of PID. They are VERY knowledgable

and helped me a lot when my daughter was affected by my husband's layoff.

Best wishes -- here's hoping he lands a fabulous job with incredible

health benefits and all goes well.

I would also recommend talking with Serrie at IDF -- she has an

insurance background and is trying to come up to speed on what is

available for our young people who are transitioning off parent's

insurance. It's a MAJOR problem. She may have some good suggestions.

That number is 1-800-296-4433.

Welcome to the group -- it's a really hard age to parent -- so best wishes!

In His service,

dale

[Guest guest]

I promised you a report regarding IDF. I'm just a volunteer. Not a

spokesperson for IDF.

I've been volunteering with them for 7 years and I want you to know that

I came away from the conference with more enthusiasm and hope for the

future of this organization than I have in years.

Yes, the office seems to be in shambles as they are still trying to

figure out who does what. They have had a total office turn-over --

only one person remaining who was there a year ago (that's my

interpretation and may not be correct). They are redefining positions

and goals and procedures. But, that could really be for the patient's

advantage once they get it all figured out. So, at this point I can't

tell you who to call for what -- because I don't know. But, if you have

a question -- call and ask and you may get routed around the world, but

hopefully, you will get your questions answered. They are working on it.

But the best news and most enthusiastic thing I see for the future is

that Kathy Antilla is coming on board as a full-time employee. Kathy

started the Minnesota chapter of IDF and knows all about patient needs.

I believe she's going to be invaluable in the office to help them be

more patient sensitive. Her family was the topic of the Mystery

Diagnosis serious entitled " Isaac's Nightmare. " She's walked in our

shoes!

So... I came away with enthusiasm and pride in the organization and it's

commitment to serve patients. They are working on their " organizing "

and I expect great things from them in the near future.

IDF has done so much for our patient population to date. Just in the 7

years I've been a part of IDF, great, great strides have been made in

educating doctors, educating congress, FDA, CDC, patient education,

research, etc. I'm proud to be a volunteer with them and wish them the

very best for the coming year!

In His service,

dale

[Guest guest]

Welcome back, Dale! I am happy to hear you had a good time and that

your body held up for you. I am sure you are not as " old ladyish "

as you claim -- health issues aside. LOL You are such an asset to

this group. It's good to have you back.

-Rogena (Mom to 4 boys, including Cole -Partial IgA Def, GERD,

possible Celiac)

>

> Yes, I made it home all in one piece -- I'll take tomorrow easy.

But,

> I'm pretty pleased so far with my survival. It's really hard for

this

> old lady to go and attend classes and lectures for 3 days in a row

> without keeling over!!!!

>

> I promise to give you a report tomorrow, but I want everyone on

the list

> to know that I am very pleased with the changes I'm seeing at IDF

and am

> personally looking forward to great improvements with the

organization.

>

> Thanks to all of you who prayed me through this one. It was

strenuous,

> but very worthwhile.

>

> In His service,

> dale

>

[Guest guest]

Tell Dale that we will miss her and that I am praying for both her and her

parents.

Thanks for passing along the message

Fisher

Dale Weatherford <dale@...> wrote:

Dale asked me to write to let you all know that she is

out of town and out of contact until end of May. She's

taking care of her parents.

Weatherford

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