Dale

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

le, I've been swamped, too. So welcome back and eventually I'll

take care of contacting -- I promise!

Katy got home a few minutes ago and said the Gamunex went fine. She

feels rotten -- but always does after IVIG. And she says it was no

worse than usual. She's in her room sewing -- so that's better than I

remember -- she used to sleep all day.

In His service,

Dale

le wrote:

>Dale,

>Please have e mal again if he tried or can e mail him if you

tell him where to send it.

>

>

>

[Guest guest]

In a message dated 7/7/2004 7:43:11 PM Eastern Daylight Time, dale@...

writes:

Katy got home a few minutes ago and said the Gamunex went fine.

Dale, that is GREAT news!!!!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Dear le,

After I attended the SubQ discussion group maybe 3 years ago -- I've

been so excited about Sub-Q and think it would be perfect for anyone

over 12 to do. I don't like the idea of Mom doing it at home to a

little one for fear the little one would " hate " Mom. But, once they are

old enough to do it themselves -- I think it would be fabulously

freeing. When you listen to these ladies talk about doing it themselves

and how little it slows them down and not having any " down " time to do

it. They just plug it in and go -- some infuse while they jog, some

while they practice piano, some say they just go on with life -- buying

groceries, eating out, etc. One lady infuses at her office while she

works. Doing gymnastics wouldn't be a good idea because of the pump--

but, watching a basketball game would be okay! I was really impressed.

-- But Katy won't buy it. She says she'll certainly try it before she

would a port but she'll do IVIG until they can't find veins. So, tell

I'm proud of him for giving it a try -- and proud of his Mom for

letting him! I REALLY do think it will be wonderful in about a year

from now. But it takes awhile to get through the initial stages and

increasing the amount to be infused, etc, and that's a hassle at the

beginning.

>Hows Katy doing on GammunX ?

>

She did fine last month at Stanford -- and today's #2 at home. So,

totally uneventful -- BUT, I don't think she had as big of a " let down "

after the 3rd week. I'll have to ask her about that. Instead of being

down for a whole week, she's only been dragging a couple of days. May

just be coincidence -- but looks better to me.

>Do you have the dates for National Convention??

>

June 23-25, 2005 --- are you on the IDF mailing list?? They sent out

save the date cards and you should have gotten it. Call them if you

didn't because you need to be getting their newsletters, etc.

>I hope you are taking care of yourself

>

>

I'm trying. It's hard with Katy home. I jump into the " mother " role.

We're trying various medications. The first one didn't do anything.

Then I started one on Monday that makes me feel great -- as long as I

stayed flat in bed -- when I raised my head -- I have no blood pressure.

She warned us that that might happen and said it will either pass in 3

days or to come back in. This is day 2 and it's better than yesterday,

so I'm hopeful!!!!!

Let me know about the SubQ.

Oh, I tried to contact and my mail bounced as if his was full --

maybe they are on vacation, too. I'll see if I can find his mother's

address somewhere -- I know I have it somewhere!!!!!

In His service,

Dale

>le

>

>

>

[Guest guest]

I have to say that I think it depends on how long the child has been on IVIG

and had any type of medical treatment. Unfortunately this condition tends

to mature kids alot faster than they should have to. Macey is 9 and has

done very well with handling the initial anxiety (lasted all of 2

treatments). She now helps me to set up the packages on the table (I won't

let her open them or connect anything though for fear of touching an

uncovered end of tubing). She puts the tegaderm on after I emla her sites

and she takes the tape and needles off at the end. Which I promptly Sharps.

Ursula Holleman

mom to (11 yrs old) and Macey (9 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

Re: Dale

> Dear le,

>

> After I attended the SubQ discussion group maybe 3 years ago -- I've

> been so excited about Sub-Q and think it would be perfect for anyone

> over 12 to do. I don't like the idea of Mom doing it at home to a

> little one for fear the little one would " hate " Mom. But, once they are

> old enough to do it themselves -- I think it would be fabulously

> freeing.

> In His service,

> Dale

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Ursula Holleman wrote:

I have to say that I think it depends on how long the child has been on IVIG

and had any type of medical treatment. Unfortunately this condition tends

to mature kids alot faster than they should have to. Macey is 9 and has

done very well with handling the initial anxiety (lasted all of 2

treatments). She now helps me to set up the packages on the table (I won't

let her open them or connect anything though for fear of touching an

uncovered end of tubing). She puts the tegaderm on after I emla her sites

and she takes the tape and needles off at the end. Which I promptly Sharps.

I repeat my apologies for sending a private letter to le to the

group. She had expressed concern about doing it herself and I am merely

stating that since is old enough to handle it all himself --there

should be no fear on her part. I do not go into detail about the fear

or whether it is valid, real or imagined since her son is over the age

of 12. But I do acknowledge that it is a very real fear on the part of a

lot of mothers. I would have clarified myself further had I intended

the message to be read and then discussed by a larger audience -- so

since I have made that mistake I will try to clarify it here.

SubQ is used extensively in Europe even with newborns. There seems to

be no adverse response to the maternal bond when moms administer subQ or

any other medical procedure. Mothers have historically administered

glucose shots, done asthma treatments, etc. with no adverse response to

the materal relationship. However, the fact that Moms have that fear

is a real one that I refuse to deny.

My apologies once again. I am not saying that I say one thing is

private and another publicly on the board. I'm saying that I thought

that I was talking only to le and is obviously beyond the

point of worrying about maternal bonding problems!

If I can answer any other questions about my mistake -- I'll be happy to

respond.

In His service,

Dale

[Guest guest]

Hi Folks,

le here. I am sorry about the mix up. I want everyone to know is

excited about Sub Q. We learned more about it at the IDF Oregon Family retreat.

They had a young girl demonstrate. Once saw that it was not what he

thought (huge needle) He wanted to ask his immunologist if he could try it.

I must admit it was different than what I had invisioned. I was also hesitant

due to it being a weekly thing verses every three weeks.......ok selfish mom

here!........But hearing all the benefits and talking to this young girl

outweighs my hesitations!

Thanks to IDF volunteeres like Dale we were able to get information to our

immunologist on the protocol. Our Dr was very open to it and told if thats

what he wants he thinks its great..........It would give a more " normal

life " would not interfer with school.........He told to give him a couple

of weeks as he looks into the protocol and then he would call us. So we are

waiting for the call.

I will let you know when we find out more.

Thanks Dale for all you help

le

[Guest guest]

In a message dated 8/14/2004 10:43:13 AM Eastern Daylight Time,

ercokat@... writes:

I saw your name in the IDP newsletter! Your famous!

I saw Brittany's DR.'s name and picture in there. (LOL)

I have to tell you all about Brittany's IVIG last week. It was her fourth

time. I spoke with the Dr. before her infusion about her brand of IVIG he has

her

on, Carimune containing high IGA and her having no IGA. He said it was a myth

about it hurting her. That only a very small percentage of people have a

reaction to it. He said a lot of his patients have no IGA and are in the same

one

as her and are doing fine. He also said it is almost always the infusion rate

and the meds that they use to premedicate and after if needed. They slowed her

rate down and gave her extra meds. She did better this time but I think it

needs slowed down even more next time. She did get a bad migraine which they

medicated her for. They gave her meds for it during and after to take home. For

3

days her headache lasted. So I want it slowed more next time.

I am however confused on the IVIG brands that should be used on a IGA

deficient person! I have just heard different from everyone else than my DR.

Anyone

want to comment on this??

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Hi Janet, I just saw your post. the only 2 brands of IVIG that should be used on

an IgA def person are Polygam and Gammaguard. they are the only two with the

lowest IgA content, all the others have quite a bit. The IDF has a newsletter

called Clinical Focus, it has a chart of all the available IVIG products and the

breakdown of what is in what etc. You can get a copy from the IDF and give it to

Brittany's Dr. When just had( I know IgA is bad enough) IgA def, and we

were going to start IVIG those are the only two we would accept for her. she is

on Polygam now, even though she now has CVID. I hope this helps.

mom to - CVID, asthma, gerd

Re: Dale

In a message dated 8/14/2004 10:43:13 AM Eastern Daylight Time,

ercokat@...<mailto:ercokat@...> writes:

I saw your name in the IDP newsletter! Your famous!

I saw Brittany's DR.'s name and picture in there. (LOL)

I have to tell you all about Brittany's IVIG last week. It was her fourth

time. I spoke with the Dr. before her infusion about her brand of IVIG he has

her

on, Carimune containing high IGA and her having no IGA. He said it was a myth

about it hurting her. That only a very small percentage of people have a

reaction to it. He said a lot of his patients have no IGA and are in the same

one

as her and are doing fine. He also said it is almost always the infusion rate

and the meds that they use to premedicate and after if needed. They slowed her

rate down and gave her extra meds. She did better this time but I think it

needs slowed down even more next time. She did get a bad migraine which they

medicated her for. They gave her meds for it during and after to take home.

For 3

days her headache lasted. So I want it slowed more next time.

I am however confused on the IVIG brands that should be used on a IGA

deficient person! I have just heard different from everyone else than my DR.

Anyone

want to comment on this??

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Where on the website is the video? If my phone line can handle the download,

I'd like to see it.

God bless,

Wenoka

Dale

I was looking at the Bayer website and guess what I saw? A video with you

and your beautiful daughter Katy. I just want you to know it brought tears to

my eyes to watch and hear your story! Thank you for the hope you have given

me.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Thank you, Janet. I'll forward your note to Katy -- she wants so much

to encourage others -- especially those Brittany's age. She's decided

to go into art therapy in order to help chronically ill children cope

with all the junk!

In His service,

Dale

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Wenoka and Janet -- I would like to know where to find it also. I have

the video, but I didn't know it was available on-line.

(I'd love for my extended family to see it and maybe they would

understand Katy a little better!)

In His service,

dale

Wenoka & wrote:

>Where on the website is the video? If my phone line can handle the download,

I'd like to see it.

>

>

>

[Guest guest]

I am new to this site and have not posted yet but I watched the

video online also. Here is the link:

http://www.gamunex.com/patient-video.cfm

I thought it was very informative and encouraging for those of us

new to this and searching for a dx. I will post another thread with

my introduction.

Kristi

Mom to Lawson - 29 months

Lawson's Website: www.caringbridge.org/tn/lawson

>

> >Where on the website is the video? If my phone line can handle

the download, I'd like to see it.

> >

> >

> >

[Guest guest]

_Patient - Patient Video_ (http://www.gamunex.com/Patient-Video.cfm) Here

is is!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/28/2004 1:44:49 PM Eastern Daylight Time,

dale@... writes:

She's decided

to go into art therapy in order to help chronically ill children cope

with all the junk!

That is great!

Janet, mom to Brittany, CVID, age 13

[Guest guest]

In a message dated 10/28/2004 10:36:58 PM Eastern Daylight Time,

zanggang@... writes:

, I actually found my own family!.

Janet, Nice looking family you have. What a nice surprise for you huh? Is he

on Gammamune or Gammunex now?

Janet, mom to Brittany, CVID, age 13

[Guest guest]

I talked to DR H today and he said Gammamune is the same as Gammunex. I know

from looking on their site and calling them on the phone that, this isn't

exactly so.

I called the IDF and talked with , and she said she wondered why he

ordered it that way also. But, she felt comfortable letting Brittany start on

it. She said she had been on it for 10 years and she switched and did fine.

Now, she also said everyone is different as we all know. So ,she said sleep on

it and makeup my mind in the morning.

Now, If I can relax and sleep that would be good!

Please keep us in your Prayers.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

Dale, We just watched part of the video tonight. Katy sure is a beautiful

young woman. I can see how proud you are of her. It's wonderful that she now

wants to be a role model for others. Thanks for sharing with all of us.

Quoting " BBsmart2@... " <BBsmart2@...>:

>

>

>

>

>

> _Patient - Patient  Video_ (http://www.gamunex.com/Patient-Video.cfm)  Here

>

> is is! 

>

>

>

> Janet, mom to Brittany, CVID, age  13

>

>

>

>

>

>

>

>

[Guest guest]

Hi All,

In searching for Dale's video, I actually found my own family!. Same

website only under patient stories not patient videos.

(http://www.gamunex.com/Patient-Stories.cfm).

I didn't even know it was there. is the little guy in our picture.

Janet, mom to , age 7, XLA

>From: lmschatz@...

>Reply-

> " " < >

>Subject: Re: Dale

>Date: Thu, 28 Oct 2004 20:39:26 -0500

>

>

>Dale, We just watched part of the video tonight. Katy sure is a beautiful

>young woman. I can see how proud you are of her. It's wonderful that she

>now

>wants to be a role model for others. Thanks for sharing with all of us.

>

>

>

>

>Quoting " BBsmart2@... " <BBsmart2@...>:

>

> >

> >

> >

> >

> >

> > _Patient - Patient  Video_ (http://www.gamunex.com/Patient-Video.cfm) 

>Here

> >

> > is is! 

> >

> >

> >

> > Janet, mom to Brittany, CVID, age  13

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks Janet!

Yes, all of the PID stuff was quite a surprise to us. You never know what

is in store for you with your own children but sometimes the adopted ones

come with surprises also. We've been on Gammune since we started almost 2

years ago but we moved last month and the new doctor switched us over to

Gammunex. seems to be doing fine with it.

Janet, mom to age 7, XLA

>From: BBsmart2@...

>Reply-

>

>Subject: Re: Dale

>Date: Thu, 28 Oct 2004 22:59:29 EDT

>

>

>

>In a message dated 10/28/2004 10:36:58 PM Eastern Daylight Time,

>zanggang@... writes:

>

>, I actually found my own family!.

>

>

>Janet, Nice looking family you have. What a nice surprise for you huh? Is

>he

>on Gammamune or Gammunex now?

>

>Janet, mom to Brittany, CVID, age 13

>

>

>

>

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Kristi, I just looked at Lawson's website -- another baby I'd love to

squeeze! You guys have the cutest babies!!!! Please write when you

have time and let us know what stage of diagnosis you are in. ( I

didn't take the time to read your journal history -- sorry). Let us

know how we can help.

In His service,

Dale

kwells2kids wrote:

>I am new to this site and have not posted yet but I watched the

>video online also. Here is the link:

>

>

>

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Janet, I'll be praying for you and Brittany tomorrow. Hope it all goes

well.

In His service,

Dale

[Guest guest]

In a message dated 2/15/2005 4:39:45 PM Eastern Standard Time,

dale@... writes:

I know, I know -- I should call her back --

but why?

I'm going to drive down and visit Katy on Thursday. She's really

enjoying her classes this semester and is getting to do lots of art

stuff. She sounds happier than she's been in a while.

Let her call you. If it's something important she will call soon. Go visit

Katy and have a great time with her. Glad to hear she is happy. Tell her hello

from us and give her a hug. =)

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

In a message dated 2/15/2005 4:39:45 PM Eastern Standard Time,

dale@... writes:

I know, I know -- I should call her back --

but why?

I'm going to drive down and visit Katy on Thursday. She's really

enjoying her classes this semester and is getting to do lots of art

stuff. She sounds happier than she's been in a while.

Let her call you. If it's something important she will call soon. Go visit

Katy and have a great time with her. Glad to hear she is happy. Tell her hello

from us and give her a hug. =)

Janet, Mom to Brittany, CVID, age 14

[Guest guest]

No! I'm getting ancy. But going off the heart medication has

certainly improved my function. Go figure! Seems the medication I was

on was decreasing my thyroid so that my TSH was more than double normal

-- so what I was feeling was not heart so much as low thyroid. That has

bounced back to a nice healthy level again once I stopped taking the

medication. So, I have no idea what to expect from the MRI results --

she said she'd call me by the end of the week -- but for her that may

mean " next week " .

I HATE waiting -- but am feeling enough better that I really don't want

to know if it's bad news! I know, I know -- I should call her back --

but why?

I'm going to drive down and visit Katy on Thursday. She's really

enjoying her classes this semester and is getting to do lots of art

stuff. She sounds happier than she's been in a while.

In His service,

dale

Wenoka & wrote:

>Hey. Have you got the results from the MRI yet???

>

>

[Guest guest]

No! I'm getting ancy. But going off the heart medication has

certainly improved my function. Go figure! Seems the medication I was

on was decreasing my thyroid so that my TSH was more than double normal

-- so what I was feeling was not heart so much as low thyroid. That has

bounced back to a nice healthy level again once I stopped taking the

medication. So, I have no idea what to expect from the MRI results --

she said she'd call me by the end of the week -- but for her that may

mean " next week " .

I HATE waiting -- but am feeling enough better that I really don't want

to know if it's bad news! I know, I know -- I should call her back --

but why?

I'm going to drive down and visit Katy on Thursday. She's really

enjoying her classes this semester and is getting to do lots of art

stuff. She sounds happier than she's been in a while.

In His service,

dale

Wenoka & wrote:

>Hey. Have you got the results from the MRI yet???

>

>