Two down, one to go

April 6, 2006

Little Maggie's cake got iced yesterday. I got a call from Maggies

(my 3 yo) Dr. Maggie has normal IG levels....sort of...her IgG2 is

hyper Ig....more than double the high end of normal. According to

the immuno, this is a very rare condition associated with CVID. For

the last several months, they have been searching for a valid

clinical reason to start her IVIG besides just the physial issues

and the low B Cells and low lymphocytes. Last blood draw, the drew

for antibody titers to all of her normal childhood vaccines. The

doc caled yesterday and she has ZERO antibodies to any of her

vaccines...polio, DPT etc...like she was never even vaccinated.

Just for the norm....the end of it was " this is a very rare problem

in CVID " . But suddenly, the picture was clear and they have now

found a clear cut reason why she should have IVIG and she starts

with her sister next week. It is so funny....I found myself

struggling again with child number two and making a decision to

subject her to this...she is such a little hardhead and nothing

phases her...but with yesterdays news, I am now at peace....or as at

peace as one could be about this. The Dr. Finally ended the

conversation with " In lite of what we now know about your children

in addition to the findings on your testing, I have no problem

starting you on IVIG too with the girls...just let me know. "

WOW!!! Finally!!!! I have been reading some very technical

scientific documents on all this stuff and I cannot understand how

they can ever really see the whole picture because of all the

genetic contributions to this disorder and the many different

pathways genetics and DNA/RNA play out in this. I am going to wait

to start IVIG until the girls' next round so that I can get the

final ruond of results back on my blood tests...the T Cell

differentition and thymus tests. I think it is important to know

this stuff boefore we start since they cannot test again once I

start. I see a few other parents here of families where more than

one of their children are being diagnosed/treated for CVID. Just

curious, did you all have a problem when you had to start adding

children to the IVIG list? Our immuno has submitted all 3 of us to

the manufacturer of Vivaglobin to have us started on it. That would

be sooooo nice. I don't know how we can handle all 3 of us....mom

inclusive on IVIG with benadryl buzz going. I guess they have to

submit us to the manufacturer as it just got approved by the FDA and

they have to accept us and then they go to our insurance carrier to

do the neccesary beaurocratic junk to get it all approved. It can

take some time, but sound like a wonderful product.

Terri

April 6, 2006

Good news..well.. you know what I mean. Never want anyone to have the need

for IVIG, but want them to get it if they need it-- We started both boys

on IVIG at the same time without a peep from our insurance. You could do

the girls infusions on one day and yours on another day.. Or take the

Benadryl after you have them hooked up---

Keep us posted on how things go for you.

~Pattie Curran~

Piedmont Triad, NC

Elbridge Gerry--signer of the Declaration of Independence, Govenor of

Massachusetts and Vice President of the United States under

Madison....

Ever wonder where the term gerrymandering comes from? While serving as

governor of Massachusetts from 1810 to 1812, Elbridge Gerry helped enact a

law dividing the Bay State into political districts favorable to his own

party. This resulted in some odd shaped districts. One district looked like

a salamander, someone said. Someone else joked that it looked more like a

" gerrymander, " making a play on the governor's name. To this day, the

practice of drawing boundary lines to favor a political party or group is

called gerrymandering.

_____

From: [mailto: ] On Behalf Of

cerdaclan

Sent: Thursday, April 06, 2006 11:31 AM

Subject: Two down, one to go