Re: question about IVIG and toddlers

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Kathleen, a lot of the kids get Benadryl and that makes most (but not

all) kids sleep -- but for the most part, Katy just does regular

activities. She doesn't have to be quiet -- just can't pull out the

tubing. For a two year old, it's going to be " fun " trying to keep him

attached! I imagine at Boston Children's they know how to keep little

ones occupied! Katy usually watched movies or played on her computer.

One afternoon she was wanting to make cookies -- so she made cookies

with her tubing all attached. One afternoon, she and her nurse helped

me dip chocolate candies all afternoon. We got chocolate all over that

tubing!!!! And when she was restless, she and the nurse would go out

in the backyard. They couldn't figure out how to enable her to actually

swing on the swing set because the tubing was too short -- but, hey, she

did regular things. That was when she was attached to the pole and

pump. Now, in the dorm, her nurse brings a small, portable pump that

Katy can walk about with much easier. Don't know what they will use at

Children's. Katy doesn't feel bad at all during the infusion (once

they found her speed and right product). She starts to feel flu-like

about the end of the infusion or a little while afterward and usually

takes a nap -- but if she's got somewhere fun to go -- she goes anyway.

It really doesn't stop her. Now, she was a lot older and they may

treat little ones differently -- but for Katy, she just did regular

stuff.

I liked the suggestion someone gave to be sure and pack a lunch for

yourself. I didn't do that the first time -- and I wasn't about to

leave Katy alone! Obviously I didn't " starve to death " , but it was a

loooooong day. Pack for Mom, too!!!! Also, don't forget to throw in

your favorite book or cross-word puzzles, or whatever you like to do in

case he falls asleep.

Hope that helps,

In His service,

Dale

[Guest guest]

I'm not sure when your appointment is. I hope this is not too late.

Kate is 2 and gets IVIG every three weeks at UCLA. We bring -

Coloring books

Crayons

Etch a Sketch (sp?)

Play dough

3 DVD's

Her Snow White Figurines

Her IVIG only blanket (given to her by the nurse there)

Pink (Her Teddy Bear/lovie)

They have toys there, and a coloring/play area she can go to.

We have the child life person come to her room and she brings new

toys/interesting things.

Other things we have brought in the past -

Sticker books

Regular books to read

Music to listen to

Our digital camera so we can take pictures for her to look at.

It's very do-able. Oh, I always bring food and snacks for me and the

kids. She likes things she can " do myself. "

Good luck.

Dayna

[Guest guest]

-thanks and not too late the IVIG is oct 29th... I put all this on

my to take list,thanks for this info, in times of stress, you forget

the basics at times.. kathleen

-- In , " fladfam " <fladfam@c...> wrote:

> I'm not sure when your appointment is. I hope this is not too

late.

>

> Kate is 2 and gets IVIG every three weeks at UCLA. We bring -

> Coloring books

> Crayons

> Etch a Sketch (sp?)

> Play dough

> 3 DVD's

> Her Snow White Figurines

> Her IVIG only blanket (given to her by the nurse there)

> Pink (Her Teddy Bear/lovie)

>

>

> They have toys there, and a coloring/play area she can go to.

>

> We have the child life person come to her room and she brings new

> toys/interesting things.

>

> Other things we have brought in the past -

> Sticker books

> Regular books to read

> Music to listen to

> Our digital camera so we can take pictures for her to look at.

>

>

> It's very do-able. Oh, I always bring food and snacks for me and

the

> kids. She likes things she can " do myself. "

>

>

> Good luck.

> Dayna