Re: Serious Questions

February 3, 2005

In a message dated 2/3/2005 6:36:06 AM Pacific Standard Time,

tripletsand1@... writes:

I guess part of my problem is that I don't really know the answers!

Hi ,

While you are waiting to see a Therapist, you might just be honest and say

that you don't have all of the answers. But you will find out all that you

can for Conner.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

February 3, 2005

In a message dated 2/3/2005 6:36:06 AM Pacific Standard Time,

tripletsand1@... writes:

I guess part of my problem is that I don't really know the answers!

Hi ,

While you are waiting to see a Therapist, you might just be honest and say

that you don't have all of the answers. But you will find out all that you

can for Conner.

Sandi, Mom to , age 11. Polysaccharide deficiency, IgG1 subclass

deficiency, Tetrology of Fallot, Pulmonary valve transplant (2003), Mitral valve

stenosis, chronic ear, nose and throat infections--including strep, COPD,

asthma,

severe allergies (including meds), Carnitine deficiency, GERD, suspected

Velocardiofacial syndrome.

February 3, 2005

In a message dated 2/3/2005 3:32:39 PM Eastern Standard Time,

uahollem1@... writes:

I believe I've known 3 families with CVID

who have lost a child in the last 10 years.

That is very scary!

Janet, Mom to Brittany, CVID, age 14

February 3, 2005

In a message dated 2/3/2005 3:32:39 PM Eastern Standard Time,

uahollem1@... writes:

I believe I've known 3 families with CVID

who have lost a child in the last 10 years.

That is very scary!

Janet, Mom to Brittany, CVID, age 14

February 3, 2005

What tends to be fatal for milder PID are opportunistic infections. Even

with IVIG the system can be so overwhelmed that it succumbs. Lymphoma rate

I believe is somewhere around 25%. I thought I remembered that quote from a

previous IDF regional meeting. Having a t-cell component with the CVID

tends to worsen the prognosis. I believe I've known 3 families with CVID

who have lost a child in the last 10 years.

Ursula Holleman

mom to (12 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

IDF Patient/Family Handbook

http://www.primaryimmune.org/pubs/book_pats/book_pats.htm

/

February 4, 2005

In a message dated 2/3/2005 8:36:20 AM Central Standard Time,

tripletsand1@... writes:

> So, do kids today still die from CVID if they are getting treatment

:

You may not have missed any opportunities to discuss this with your doc

(since your son was right there) -- the doc may have answered your question as

poorly as ours did!

When was diagnosed at age one, she had multiple deficits. Lots of stuff

wrong. So I asked what the life expectancy was, if it was normal or

decreased, etc.

Her answer: " She'll live until she dies. " Period. End of answer. I pressed

her for more information, seeing as this was my CHILD we were talking about and

her glib little answer just didn't DO it for me.

What she meant was, she could die from an infection, or not die from any of

her infections. She could life a long life. She could get hit by a truck.

(Jeez, doc, why didn't you just say " I don't know. " and leave it at that.)

The only piece of real info she gave me was that IVIG replacement therapy was

invented in the '50s and the guy who was the first recipient was at that time

still alive. I took that as encouraging because you have to wonder how " pure "

those first treatments were, ya know? I'm picturing dust and bugs and rubber

boots and license plates being ground up in the serum.

So according to our first doc (who I'll tell you was a horrible woman!), they

just don't know what will happen, because somebody could catch a deadly

infection and somebody else may not. Somebody else may never have another

infection

again but get run over by a bus. With unpredictable infections and the

mysterious immune system, I think nobody really knows. We just have to keep

advocating and keep on our toes and pray alot.

I personally don't enjoy that feeling of being out of control, not being able

to control our fate. So I've handled it by reading up on immunology as much

as I can, doing research, having tools on hand to try to circumvent infections

getting out of control (books on descriptions of infectious diseases, an

otoscope, a stethoscope, an " ear check " ear fluid detector [jury is still out on

that one] and being very vigilant about the course of every illness).

lives a pretty normal life, socially... she goes to school and has

friends over. But I take the extra precaution of not allowing sick friends over,

staying away from sickies in public as much as possible, and avoiding Chuck E.

Cheese and similar places during cold and flu season.

I figure we're doing as much as we humanly can. The rest is up to God. I

pray, I thank him for the blessings we've already received and I put the rest in

his hands. That allows me to sleep at night!!

So far we don't talk about any of this with . She thinks her level of

infection is normal daily life. We've discussed that she gets sick more easy

than other kids and that some of her " soldiers " are missing in her immune army.

But she's never wondered about death or anything that serious. She knows if she

doesn't take her medicines or get any shots she needs or hides an illness

from me that she could get sicker and sicker and sicker.... and we've left it at

that. She knows infections can be dangerous, but thankfully I've never had to

address the issue of " could I die " . Yikes.

I have a book called " How to Say it to Your Kids " . There is a passage on

children with chronic illness. I'll type it out and put it in a separate post.

It's mostly common sense but a nice reinforcement for what we're all probably

doing anyway.

(mom to , age 6, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 2, more dairy intolerant but very healthy!)

February 4, 2005

So far we haven't had to answer these questions with Kody, we have with his

sisters, but so far he isn't asking about dying. Although, he has talked

about dying a lot, in general but hasn't specifically asked if he were going to

yet. But he's asked a lot of questions about his " sickness " as he calls it. He

has seen " A Day in the Life " by IDF, which has helped him (I show it to him

still from time to time because his level of understanding what he is seeing

is maturing). He doesn't talk much about being his immune problems so I

didn't think he was thinking of it much until yesterday. He brought home some

art

work, and the assignment was for Luther King day, a little cut out of

a person holding a banner that says " I have a dream... " and then on the body

of the person they were to write their dream down. Kody's dream phonetically

spelled out of course was " I want the doctor to make a new medicine " because

he told me he wanted to feel better (and he says one that doesn't poke!). I

guess it's always an ongoing conversation to have with our kids, but in my

conversations I always try to keep it positive, and not focus at all on the

dying part of the whole thing. I just keep saying that he has his medicines to

keep him well, period. I guess as they get older they would worry about it

more, seems natural that they would at least think about it.

Diane, Mom to Kody, age 9, Di syndrome, CVID, learning disabled,

asthma, general anxiety disorder, sensory integration disorder, animal lover

and

protector, Yughio expert and chef extraordinaire. Also Mom to Arika, age 17,

senioritis. Kaila, age 13, allergies/asthma, queen of worry warts and

perfectionists. Sami, age 10, allergies/asthma, dyslexic, official family cheer

team

captain. Wife to , a loving wonderful dad and hyperactive workaholic.

Check out our website at: www.geocities.com/schmidtzoo/SNAK

February 6, 2005

from Dale, Mom to Katy, CVID, age 21

, I'm so sorry that I wasn't available whenever you posted this.

It's something that is a recurring discussion among our kids. Let me

preface what I'm going to say by saying that everyone on this list does

not have the same diagnosis, the same child, the same complications.

A child who is basically healthy and only missing part of his IgG's is

going to have a totally different outlook than a child with low numbers

across the board and has t-cell involvement. This group welcomes all

the PID's and is not just limited to CVID. Different diagnoses have

different mortality rates and different cancer rates.

I can authoritatively state that your child will not die of a primary

immune deficiency. But that's like the surgeon saying the patient

didn't die from surgery -- he died in the recovery room. What our

children will die from -- or at least all those that I've heard of --

and I haven't heard of many that didn't have major other complications

-- will be germs that get out of control and cause organ failure --

things like sepsis or lung damage or liver damage, etc. Many, many,

many kids with PID will live to be full-grown adults and enter their old

age. It is so encouraging to me to go to the conferences and see the

adult population with PIDs. It's cool and very reassuring -- they are

lawyers and doctors and mothers and dads and construction workers and

indian chiefs! They have to take care of more medical stuff than most

people -- but most are healthy enough to pursue their dreams. Some of

you on this list have children who are very, very ill and spend most of

their time in and out of hospitals -- their prognosis is going to be

totally different from someone like my daughter Katy who is always sick

-- but it's never serious -- she's never been hospitalized. It takes

longer for her to get over infections -- but her body eventually fights

things off with lots of antibiotic and extra rest and fluids, etc. She

called the other night and wanted to know if she could apply to study

art in Italy next summer. We said, " sure, go for it! " Why not? She

may get sick, but she'll have the time of her life. Would I be as

eager for her to go to an undeveloped country where she couldn't get

safe water? No way!!! There will always be complications -- but

everyone's life is like that -- I really like the IDF's book - My Immune

System designed with lots of pictures for kids. It makes it very matter

of fact - some people need glasses -- some people need IVIG. It's that

basic.

It's so vitally important to answer 10 year old's questions

matter-of-factly. That can't be done until you've answered your own

questions. How you answer your child will be based on what you believe

yourself. One of the resources that I highly recommend is a group

called Focus on the Family. They are a Christian organization that

focuses on the family! They have trained counselors and psychologists

that will talk with you about your questions on child rearing. They

are one of the first people I talked to while Katy was struggling with

pre-diagnosis stuff. Their service is free and they can be reached at

1-800-232-6459. They will talk with you about your personal questions

as well as your questions for Connor. I found them to be very helpful

and supportive of the role I was trying to play for Katy.

As a believer in God's Word and a follower of Jesus Christ, I felt very

comfortable talking with Katy about death. What I wasn't comfortable

talking with her about was how to get on with her life and not focus on

her illness. I had questions dealing with chores and rules and

homework, etc. Later I called them when she began showing signs of

being angry at God for her illness. I didn't know the right words to

use to help her at her level of understanding. They were very helpful

to me and to many others who have called them for support.

With Katy we told her exactly what her doctor told her " No doctor or any

person on earth can tell you or anyone else how long they have until

they die. What's important is how you live until then. " We emphasized

to Katy (at age 13) that she may get very sick and die but there would

be plenty of warning -- she should not just get deathly ill and die

without someone knowing that she was sick. In other words -- we

explained that more than likely if she were to die from this condition

-- then she would get gradually sicker and sicker and sicker and have to

go to the hospital and she would know and we would know that it was time

to prepare ourselves for her death. We promised that we wouldn't lie to

her. I think her greatest fear was going to bed and never waking up

-- sudden death. Once she knew that she would have warning, she felt

comfortable with the idea. We also told her that when she got sick, we

and the doctors would do everything within our power to make her better.

We warned her that she would be sick a lot more than other people --

and might even have to go to the hospital sometimes -- that didn't mean

she was dying -- but it did indicate that it was more serious than just

a cold. (We didn't want her to decide she was dying if she had to be

hospitalized). One of the other things that helped her was to realize

that more than likely -- her chances for dying young were more related

to her roller-blading and gymnastics or learning to drive a car than

from this disease.

I don't know the statistics for cancer for all the different PIDs -- and

it does vary. And I can't remember the statistic for CVID -- but I do

remember that it was only 2% higher than the general population. If the

generally population's chance of cancer is 10% then CVID is 12%. Or if

it's 20% (and that seems high to me) CVID is 22%. Sorry I can't find

my notes right now.

Hope that helps with some of your questions. -- if I missed any -- ask

again. And please know that I am available to answer any personal

questions that you might have about what the Bible says about death and

dying and the promise of Heaven. Let me know if I can help further.

I'm at dale@...

In His service,

Dale

S wrote:

>I wanted to see if anyone has any advice. My son Conner (age 10) has been

>asking a lot of questions about his immune disorder. For instance, after

>his infusion last week he asked me if anyone has ever died from what he has.

> My other kids have also been asking me if Conner could die. We have had

>some serious discussions about Heaven and why God allows children to die.

>It's been very difficult to say the least! I really struggle with what to

>say to the kids. Several of our docs are helping us look for a counselor

>who has experience working with kids with chronic illnesses, but in the

>meantime I need to figure out what to say to them.

>

>I guess part of my problem is that I don't really know the answers! I don't

>ask these questions to the specialists because Conner is normally right

>there. So, do kids today still die from CVID if they are getting treatment?

> What is the incidence of cancer (lymphoma/leukemia) among kids with CVID?

> Don't feel the need to sugar-coat this stuff, I really want to know what

>we're facing. Feel free to email me privately if you wish:

>kristinsmith@...

>

February 7, 2005

In a message dated 2/7/2005 1:54:03 AM Eastern Standard Time, dale@...

writes:

Katy who is always sick

-- but it's never serious -- she's never been hospitalized. It takes

longer for her to get over infections -- but her body eventually fights

things off with lots of antibiotic and extra rest and fluids, etc. She

called the other night and wanted to know if she could apply to study

art in Italy next summer. We said, " sure, go for it! " Why not? She

may get sick, but she'll have the time of her life.

Dale Katy never been hospitalized? Wow, I never knew that. I guess I just

assumed being how sick she was when she was younger.

I think it's great about Katy wanting to go to Italy to study art! Tell her

I'll go with her (I always wanted to go to Italy, and still do) My mom is

Italian, BTW.

Janet, Mom to Brittany, CVID, age 14

February 7, 2005

In a message dated 2/7/2005 2:35:59 PM Eastern Standard Time, dale@...

writes:

After a lot of debate between Surgeon and Cardiologist, I

finally contacted my primary and asked her to referee. She took one

look at me and said I was having a bad side effect from the heart

medication. I went off the medication on Wednesday and by Thursday my

head was clear enough I could actually think. I came out of my fog and

started getting on with my life. It's like the difference between night

and day. I see my cardiologist today and have the MRI tomorrow -- but

I'm not expecting that it will show anything worthy of heart surgery.

I still don't feel great physically -- but I'm not brain dead!!!!

It's a good thing you asked your primary doc. What a diference a med can

make. Glad to hear you are feeling better. Please let us know the MRI results.

Janet, Mom to Brittany, CVID, age 14

February 7, 2005