Question

February 18, 2003

Hi Ursula~~

Dale told me to check and see if the brand Lacey gets comes in both a 5% and

10% solution. I asked our doctor and he said it comes only in a 5% solution.

Do you know what brand Macey gets? They gave me the actual flap from the box

they used so that I'd have the lot number. On that it says Immune Globulin

Intravenous (Human) Gammar P.I.V., but the hospital pharmacy sticker says

GammaGard. Meanwhile, I think I'll do some searching to see if I can find any

info on the net. Thank you for your help~~

Belinda

Lacey's mom, (15, CdLS, IgG deficiency)

Pittsburg, CA

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

February 19, 2003

Sometimes anxiety can make a person breath faster and take more shallow

breaths. If it is something like that, the solution may be as simple as

watching her breathe to make sure that she is taking even, deep, slow breaths.

Also, you mentioned the ears in another post, had chronic ear

infections prior to starting IVIG at 17 months, if he were not on

antibiotics, he had an ear infection, but after the first few treatments

they stopped. I don't think he's had more than 1 ear infection in the last

3 1/2 years or so. We still have an occational go round with the sinuses

(which, thankfully, have cleared up with just one week of Biaxin). He had

his treatment today and the immuno's nurse checked him out and said he

looked great.

I just wanted to give you some encouragement about the ear infections by

letting you know that 's stopped dead in their tracks once he was on

IVIG. Hopefully your daughter will have the same response. It may take 6

months or more to see a difference in the frequency of illnesses, but I

suspect that you will see a difference.

Hope there is a simple answer to the " weird feeling " and headache.

God bless,

Wenoka

At 01:02 PM 02/17/2003 -0500, you wrote:

>

>To all,

>

>I have a question. Last night when we were in ER and was receiving

her IV fluids, she complained that she was getting that " weird feeling when

I take a breath, and a headache " .. I was baffled because I didn't think

straight fluids could make you feel this way. Has anyone ever had

reactions like this to straight IV fluids.

>I didn't say this to , because I did not want to diminish what she

was feeling, however I thought it may be an emotional reaction to

remembering how the IVIG felt. I asked the nurse and she said it wouldn't

hurt to slow it down, but didn't know if the IV could cause that or not.

2nd question, Do most of your children get treated with antibiotic even if

they confirm the infection is not bacterial? s white blood cell

count was 6000, which they told me was very good , even for a healthy

adult. Are PID kids White blood Cell counts usually not within normal

range? I asked the doctor the significance of the White Blood Cell level,

and he explained that if it is viral , you will not see an elevated WBC.

They did not treat her with antibiotics as a follow up measure. I was a

bit surprised.

>Just trying to digest this as I learn and sort it all out. Any help would

be appreciated.

>

>Thanks again

>Sharon

>s 11 igg def

>

February 24, 2003

Sharon, so sorry to hear was in Er. is there quite often

for IV Fluids. He gets dehydrated real fast with viral infections...

its the fever that wipes him out. Once in a while he says he gets

a " weird " feeling when having fluids. He usually has a headache

from being dehydrated so I don't know anything about that. When we

tell the nurse that he feels " weird " - (he can't descride the

feeling - it just feels werid - different than normal is what he

says) she slows the drip down and that usually helps. I asked the

doctor what might cause this weird feeling and he says it proably has

something to do with being dehydrated. To much to fast kinda thing.

Hope this helps. How is doing Now?

Karin, mother of IgA Def.

-- In , " Sharon Grubb " <SGrubb@s...> wrote:

>

> To all,

>

> I have a question. Last night when we were in ER and was

receiving her IV fluids, she complained that she was getting

that " weird feeling when I take a breath, and a headache " .. I was

baffled because I didn't think straight fluids could make you feel

this way. Has anyone ever had reactions like this to straight IV

fluids.

> I didn't say this to , because I did not want to diminish

what she was feeling, however I thought it may be an emotional

reaction to remembering how the IVIG felt. I asked the nurse and she

said it wouldn't hurt to slow it down, but didn't know if the IV

could cause that or not. 2nd question, Do most of your children get

treated with antibiotic even if they confirm the infection is not

bacterial? s white blood cell count was 6000, which they

told me was very good , even for a healthy adult. Are PID kids White

blood Cell counts usually not within normal range? I asked the

doctor the significance of the White Blood Cell level, and he

explained that if it is viral , you will not see an elevated WBC.

They did not treat her with antibiotics as a follow up measure. I

was a bit surprised.

> Just trying to digest this as I learn and sort it all out. Any

help would be appreciated.

>

> Thanks again

> Sharon

> s 11 igg def

>

February 24, 2003