RE: Re: 6 year old daughter new to IVIG and SCIG

[Guest guest]

Hello ,It should take about 12-18 months to get a full support out of the

Gamma although it seems to vary based on age, diagnosis etc. You will see

significant improvements in the first year and then gradual continued

improvement. My son gets about the same # of viruses as most people and he has

been on Gamma for over 13 years now. We still treat more vigourously with

antibiotics if he does not seem to get over something but again it is fewer and

farer in between with less severity. Barbie

From: kksilk526@...

Date: Tue, 31 Jan 2012 17:26:52 +0000

Subject: Re: 6 year old daughter new to IVIG and SCIG

Thanks so much for all of this information. I am trying to gather as much

as I can at this point. The beginnings are always the hardest with a new

diagnosis. Her symptoms have always been there, but the treatments and weekly

needles are of course new. So many questions, gotta catch myself up I do

appreciate the ideas for the support sites, numbing cream and the igi bear.

Just ordered one for my daughter and one for her brother so he can play along.

He's 9.

I do have a few other questions if anyone could help me. Maddy has currently

gone an entire month with no antibiotics which is a first since since she was 3

months old. IVIG and SCIG are doing something good already. She's only had 3

IVIG's and one SCIG so far. However, she is just getting little viruses which

she has never, ever had a virus without turning into a major infection, so this

is good. They are lasting about 4-7 days and are very mild. I am wondering if

this is how it's going to be, just little virus frequently vs. major infections,

or as she is on the SCIG longer should this too get better.

I know I've read if the kids are still getting sick often when they've been on

treatment for awhile they could increase the dose. Just wondering what I should

expext as the new norm. for her. Maddy did make the pneumonia titers but they

dropped quickly and the ones that were in range were shown to not be functioning

according to the avidity testing. I was wondering if later when her labs are

tested will her avidity change with being given other peoples antibiodies vs.

just the IGG numbers increasing.

I really appreciate the time it takes to read and respond to my questions. I

hope to get a better handle on this soon.

>

> Hi ,

> Â

> Â Â Â Â I have a granddaughter who has CVID, I ordered her a FREE kit with a

bear named Igi, and all the pretend IVIG equipment like she uses, a cute

journal, which you can write in or help her to write her feelings, and anything

she would like, my granddaughter is 9, but around a 5 year olds mental status,

she has other special needs also, she loves having Baxter to sit with her while

she gets her infusion, my daughter and son in law make her IVIG treatment a

special time for her, she gets to pick out a movie to watch while she has her

infusion, it kinda makes it go a little smoother for her, also, does your little

ones IVIG kit come with a numbing cream to apply a half hour before she gets her

infusion?, Joanna's does, my daughter puts it on each of her thighs and

covers it with a piece of bandage tape and after the half hour is up Joanna's

thighs, are numb in the spot she has the needles put in, just thought that may

help, her is the address

> to order the Igi the bear IVIG kit if you would like to get one for her, it

is totally free, hope this helps

http://www.immunedisease.com/help-and-support/baxter-resources/therapeutic-play-\

kit.html God bless

>

> Chereese N Rowland

>

>

> ________________________________

> From: karen <kksilk526@...>

>

> Sent: Friday, January 27, 2012 2:16 PM,

> Subject: 6 year old daughter new to IVIG and SCIG

>

>

> Â

> Hi everyone,

> I have a daughter who just turned 6 and has finally showed the proper criteria

with her pneumonia titers to diagnose CVID. My daughter has been chronically ill

with bacterial/viral/staph and strep infections since she was 3 months old.

Every winter we are in the hospital 1-2 times a month and lived on prednisone

because the infections were so severe in the way the impacted her lungs. With

all that being said, she began IVIG in November and after 3 treatments 28 days

apart she had her first SCIG yesterday. This was our choice because we are

hoping it will be eaiser on her to be at home and have me doing the needles

instead of a stranger. She has been experiencing a tough time with all the

needles and really needs to have some control I think. (She also has an

autoinflammatory disease where she gets needles at home 2 x weekly by me as

well). I am looking for any guidance to make this eaiser on her and any

information that I can look forward to in regards

> to how SCIG and IVIG has helped other peoples children. I am hoping for the

benefits of the all the needles to outweigh all the infections Thanks!

>

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