Introduction

February 21, 1999

Thank you for introducing me to your web site for PID. Although, I did have

trouble going to your personal home page. I have to get my husband to take a

look (he is the computer whiz). It kept telling me there was an error in the

message. I really am not sure how that is.

My daughter Cassandra (Cassie) was diagnosed with IGG immunodefficiency about

two years ago. She kept getting sinusitis and pneumonia. We put her on

countless rounds of antibiotics and in an out of the hospital for testing.

She would do well while on the medicine, but as soon as we stopped she would

relapse with the same infection but sometimes even worse. Her pediatrician

recommended an immunologist. We saw him and after doing an immune response to

vaccinations we found out she was sick. We started her on IVIG and she has

been doing it since. He does have hope that maybe one day her immune response

will pick up, but we do not know when. He has tested it again since then, but

no luck. She is small for her age. She is about 25 pounds. But she is a

trooper. We go every 3 weeks to the hospital for the infusion, and we have

found that the EMLA disc help a little with the pain of the needle stick. We

have discussed a catheter because sometimes it is 4 or 5 times before they get

the vein. But, her doctor is weary of putting one in. She was not able to

attend school this year because of the risk of infection. We are hoping next

year she will start in a Pre Kinder class at our church. I would love to talk

with you and others about experiences that you have had to go through with

your daughter and others in your family (especially siblings). I do hope to

hear from you soon. If you do not mind me asking, where are you from? I live

in Corpus Christi, TX. It is in south TX. right by the Gulf of Mexico so it

is always warm here. I am a school teacher and we really enjoy the outdoors.

Again, thanks for all you have done. Talk to you soon.

Belinda Rose

Mother of Allyssa, 7 years and Cassie, 4 years

February 21, 1999

I am not sure if you are getting my e mail. I am having trouble sending it to

you. It seems to keep coming back to me. I will wait a few days to see if I

hear from you. Thank you.

Belinda

February 21, 1999

Hi,

My name is Gail and I live in Bartow, Florida. I am a mother of a 6

year old with common variable (probably) and a daughter to a mother with

common variable. My daughter was diagnosed finally at age 3 1/2. She was ill

constantly and had several bloodstream infections. After much testing it was

found that she had a poor immune system memory. We produce antibodies on a

limited scale and then lose them shortly thereafter. Since starting IViG I

have the most wonderfully normal life. Kinsey is in gymnastics, brownies,

tennis and art classes. She attends a small private school and has a younger

brother who is 5 years old. Her infections are minimal and easily

controllable. Kinsey's brother Garret had a slow developing immune system and

now appears normal. Because Kinsey has done so well I have been able to

become active with the Immune Deficiency Foundation and I am a representative

for Florida. This would not have been possible without IViG. Being a part of

this organization has been a wonderful opportunity for me - I have learned so

much! I am sure for every moment I have helped I have benefited 10 times

over.

My mother who is now 76 was diagnosed after my daughter. She was sick my

entire life with recurrent pneumonia, sinusitis, ear infection (18 sets of

tubes) and kidney infections. She even had a part of her lung removed because

of severe lung disease and scarring. Never once did they look at her immune

system. It wasn't till I stumbled across the information from the IDF that I

asked my pediatrician to test my daughter and subsequently had my mother

tested. My mother has improved with IViG - but would have done better if she

had been diagnosed earlier.

I hope to hear from others and if I can be of any help. Please let me know.

I know how difficult it is to have a child with PID and I also know that you

can live a normal life with some minor adjustments. : )

Wishing you warmth, sunshine and good health

Gail

February 22, 1999

Hi everyone! I'm Dale.

After reading your letters I'm so grateful to God that my daughter waited so

long to begin CVID. Most of you are dealing with very young children, that's

got to be gruelling! I guess my contribution will be from the teenaged angle

since Katy is 14. She's been diagnosed for 2 years and has had IVIG for

the past year. We had 2 years of medical hell trying to figure out what was

going on. But, because she was diagnosed early in the disease, she has a

good chance of having a pretty normal life.

We do IVIG every 28 days with a home health care nurse. We homeschool -- but

chose that route long before she got sick (during her Kindergarten year).

Her major complaints are a constant chronic headache that is often severe.

We're working with a neurologist and using Elavil to try to relieve these. No

success yet. Because of the headaches she is unable to read extensively --

so you-know-who reads all of her school work aloud. We were unable to do

school work for almost 3 years because of her fatigue, headaches, and

digestive problems. But the fatigue has greatly improved during this year of

IVIG. The digestive problems have greatly improved, but continue to be a

problem. We're working on that, too. But school is back in place --

although limited to 3 hours per day. It seems she has about equal well days

and sick days now. We think the sick days are mainly viruses -- they come in

the form of stomach flus or head colds. They mess up her life and frustrate

her plans.

I notice that some of your letters identify your child and yourself all in one

breath. Such as, " we got our IG levels up " . That's been a big adjustment

for me as Katy has entered the teen years. Early on we worked as one body

trying to get our problems solved. Now she makes it quite clear that this is

not my disease -- it is hers. Letting her make choices, watching her cope

with frustrations and disappointments, watching her deal with pain, all of

these things are terribly draining. Sometimes I yearn for her to be little

again so that I can take the brunt of the worry and frustration. It's tough

parenting - period! I couldn't do it without the Lord's guidance.

We also have a 16 year old son. He's 1/2 time at the local junior college and

1/2 time finishing up highschool at home. His love for Katy has been

awesome. Sometimes when she is so frustrated at being sick -- he'll go into

her room and take her a pillow. Handing her the pillow, he says, " beat me up.

You need it. " She'll sit there and pound him with the pillow until she's

exhausted enough to sleep. They are quite a pair. I'm not ready to think

about what it will be like around here when he leaves for college.

I've got to get busy. May the Lord richly bless you today with arm strength.

I remember how very tired I would get when Katy wanted to be in my lap all day

long and my arms and back were killing me. He supplies our needs.

In His service,

Dale

February 22, 1999

Dawn,

Just wanted to let you know that I will be thinking about you, and the

rest of your family. I don't really know what else to say - I just wanted you

to know that you are in our prayers. Keep us posted on how you are doing.

Gail

February 25, 1999

I'm Ginger......and my son Adam is 3. He has IgA and IgG deficiency. He has

been getting IVIG for over 2 years now.....and it helps tons. He takes

antibiotics every day. He gets nebulizer treatments twice or more a day. He

gets Triaminic daily and Nasalcrom daily. He's doing really well. The last

time he was sick was the night before Christmas Eve (104.6 temp). The best

thing is that the illnesses don't come very often anymore. We do spend alot

of time afraid of the next time though. I've been noticing that Adam's stools

are always very light--like clay colored. Has anyone else noticed anything

like this?

February 25, 1999

From (CVID)

Now, I told Ursula I wasn't going to post... just lurk (already spending too

much time on the computer and not reading my schoolwork!), but of course I have

no self-discipline.

I really don't belong here, since I'm the patient (don't have kids... and won't

for a while!), but thought I'd hang out and see what I could pick up and maybe

what I could help with...

I won't go through my history, but I'm 25, have had CVID for about 5 years and

other health issues most of my life, and am in medical school. If you want to

read the whole gory story, it's at:

http://medicine.wustl.edu/~williamk/Health/History1/history1.html

The rest of the website is under contruction, but you're pretty safe if you

stick with the health section. I don't have any links Ursula doesn't already

have on her PedPID page, but at least the history's there and I don't have to

re-type it!

Dale - good to see you again - I think we corresponded after you posted on the

IPOPI forum a while ago. Good to know the IVIG has worked out via homecare and

Katy's more comfortable. And Jenn - good to see you, too... I think

you're the same person I " met " from the IPOPI youth page, right?... not too many

other paramedic e-mail addresses out there!

I don't think I know the other people - Ursula, is there an archive to go back

and see what other people wrote, or could you maybe forward other intro messages

to the group again, so newer people can catch up? Just wondering... if

not, I'm sure I'll catch on at some point!

Well, off to bed.... I've got a massive sinus/lung infection and I'm still

waiting for the antibiotics to kick in. I'm going to California this weekend

and want to be healthy (actually, Dale, I'm going to San , my boyfriend

lives there... sounds like you're in that neck of the woods. Do you have any

recommendations on an immunologist or good internist I could use (or maybe ones

to avoid?!) when I'm there for the summer? I'll be working at Stanford's

Packard Children's Hospital for about 10 weeks this summer, and don't know a

soul other than , and since he's healthier than a horse, he's no help on

the medical front - other than support, that is!).

Take care, all...

February 25, 1999

>

(CVID)

Ackkk... One more thing. About clay-colored stools... that's usually caused by

a liver problem (though some meds like things with magnesium in them can do the

same thing). Your body gets rid of bile salts and bilirubin in your

stool, and if you have a problem with either breaking down bilirubin or not

producing bile salts (or, as Ursula said, the food going through the small bowel

too quickly to be in contact with bile), it can give light-colored stools.

But in the absence of jaundice or elevated liver enzymes, I doubt it's terribly

serious. May be something to ask the doc about, though, because there may be

other reasons I don't know about....

Hope that helps!

February 25, 1999