Hi new members

[Guest guest]

I wanted to say hi to all the new members and welcome you. We've got a

great group of parents here with a wide range of PID's (Primary Immune

Deficiency). My daughter is Macey and she's 9 and has CVID, my husband is

Les, he's also got CVID and then we have who is going to be 12 next

month and just putting up with us all.

Macey was diagnosed at 2 1/2 and has been on IVIG pretty much since (with

one break off to retest her antibody function). She started out doing IVIG

for the first 7 years and has recently switched to a subcutaneous method.

It's going great and this weekend will be the first time we do it on the

road (going to a wedding in another city and staying in a hotel).

PID diagnosis is not the easiest to pin down, might and might not be

lifelong and sure is its own beast of burden. My thoughts on are that at

any point anyone can get better. Some docs think that it might be transient

if the child is under 5 yrs old. Supposedly that's when the body's immune

system " fully matures " . Then some docs also think that it might start

functioning around puberty. Something about the hormones being released

" jump-starting " the immune system. But I believe we have some PID families

that start dealing with PID at puberty so it might wreck it too. Since my

husband has CVID and we're pretty sure his mom has it (but she won't be

tested) then we're kindof resigned to the fact that Macey might have this

for the rest of her life. But I won't let any doctor tell her that and I

sure won't take it to heart.

There is a wealth of knowledge in the group archives so go there

and look at the subject lines and read up.

I want to remind new and old about one or two things.

1. Please sign all posts. It helps to read better, plus include your

childs name and any PID possible or confirmed diagnosis.

2. If you're heading in a new direction with a reply to a post then change

the subject line. It makes it easier to read the digest and the archives.

Plus it makes the " search " function in the archives worthwhile.

Love from Georgia,

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

IDF Patient/Family Handbook

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

/

[Guest guest]

Ursula,

It is perfectly fine to sign anyway you want to. We all have ways of coping

with the issues we deal with and if it helps to not sign there name and

condition all the time it makes perfect sense and good for you!!

Pam

[Guest guest]

In a message dated 10/1/2004 8:40:01 PM Eastern Daylight Time,

SNAKpackmomma@... writes:

Our children are certainly

not their diagnosis, I view the siggy more along the lines of an

introduction,

kind of a " this is who we are " thing. I don't like writing it down all the

time either, I use the signature set up on my email (I'm sure yours has one

too) that automatically puts the siggy on the bottom of my emails. I have

different siggy's set up, one for groups such as this one, and then one for

family and friends etc. It's easy to do.

I also view it this way. And I use the auto siggy. Hope this helps you.

Janet, mom to Brittany, CVID, age 13

[Guest guest]

I kind of like that people put the diagnosis on the signature

because, being new, it lets me know if that person's child has the

same diagnosis as mine and if I have questions or specific to my or

my child's experience with treatment, etc., I know who in the group

might have suggestions or information for me with regard to that

particular immunodeficiency.

Of course we know our kids aren't defined by their disease, that is

part of what everyone here, I would think, struggles with -- to have

their kids get help so they can live life as much like other kids as

possible, and be a kid and be seen as a human being instead of just

another number on a medical insurance sheet or a list of lab results,

etc. And of course if people don't want to give their child's name

and age and diagnosis that is their choice, and for many reasons,

some of which (for me at least) have nothing to do with whether the

child is ill or not. This is an internet group and although everyone

here you never know who's gathering or reading information, I would

hate my child's business to be " out there " for a sick person to

perhaps take advantage of, which is why I don't put up photos, names

or too many specifics online about my child. It is parental

discretion and I respect it, even when I don't agree or fully

understand, I feel have to respect people's choices about their kids

and their families. That is what I'd like people to do for me. (Of

course if it is really a clear situation where a kid is being hurt or

endangered that might be different but in my personal opinion a few

medical terms on a signature line qualifies.)

At the same time, I am not going to push someone to START or to STOP

putting those designators on their signature lines just 'cause I do,

or don't, choose to do things that way. I have had too many

situations already where people question my love for my child, my

parenting, etc. vis a vis my child's illness and so I am not going to

tell (or imply towards) anyone that it is ethical or unethical,

correct or incorrect, good approach or bad approach to put their

child's diagnosis or other information on their posts. My ethics

aren't the only or necessarily the best ethics out there, they are

just mine, so I don't like to make others feel they might have to

defend decisions that they make about how they get the suppport they

need to be there for their children. I am here to get and to give

support and information not pass judgment on whether parents are

thinking in " proper " or " improper " contexts about their child(ren)'s

illness(es). I often sarcastically comment that no one listens to me

at the doctor's office when I mention what works for my child because

I am not a doctor. Well I am not a psychiatrist either and I feel I

go into some dangerous waters when I try to analyze other people's

motives or decisions (especially people I don't know except from some

words on a screen), or when I confuse giving support and sharing my

experience and resources with playing doctor to someone else's kid

with giving unlicensed medical advice to someone on a child I have

never even had a 5 minute face-to-face chat with.

I hope no one is offended by what I've posted. I think the question

about the signature lines was a good question and I'm new here and

that is just my 2 cents. I also know that as people go through their

different experiences, opinions and viewpoints change, so perhaps a

year from now I will have a whole different 2 cents on this question.

/Dayann