RE: Increasing problems with IVIG

[Guest guest]

What product are you using and what infusion rate are they running and what

concentration is the solution???

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3

Increasing problems with IVIG

Zachary received his IVIG yesterday, and it was the worst time he

has ever had with it. I'm getting quite concerned because each time

he receives it,the side effects are increasing, and the rate of

infusion has been dropping.

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

One question I have is whether the vomiting is a reaction to the IVIG or

is it a result of the trauma of the " stick " . It sounds like they

believed it to be IVIG related since they stopped the IV. And you

indicate that there are a lot of side effects going on.

So, if I read you right, there are two separate issues going on here --

one is problem with access the other is tolerability of IVIG. Getting a

port will NOT stop the side effects or reactions to IVIG. I would

certainly hope that your immunologist is looking into changing products

-- if he doesn't have a list of available products -- ask him to contact

IDF or you can contact IDF for him. They have a wonderful brochure on

all the products and how they differ from each other. I don't know

which product you are using -- I'm not saying it is a BAD product. I'm

saying that everyone tolerates different products better than others.

So, I'm wondering if he's sensitive to your particular product. IDF's

number is 1-800-296-4433 or your doctor may want a consult with a

Consulting Immunologist and that number is 1-877-666-0866 (that's a free

service for your doctor to call and talk to an Immunologist with the

latest research.)

Secondly, I think your immunologist should certainly be looking into

SubQ (SCIG) subcutaneous administration of IgG. It addresses BOTH of

your problems -- reations and access. However, SubQ is not right for

everyone either -- you have to have some body fat to make it feasible.

That brings us to ports. A port is an infection site and is certainly

not something you take lightly -- but, for some kids it solves the

trauma of IVIG. In your case -- it will only solve the access and do

nothing about the reactions. What if you get a port and the side

effects continue to worsen?

It's always traumatic to the family (especially the Mom) who has to

adjust to IV's -- but it sounds like there are some very real issues

that need to be addressed. I'm glad you have a meeting with the

immunologist. Hopefully they will be able to answer some of your

questions. Hope this will help you make your list of questions!

Finally, I'm sorry. It's really hard watching them hurt. Katy had such

a hard time the first 3 IV's. They ran it too fast and she cried and

screamed the whole time. She was 13 years old, but they wouldn't listen

to her and just called her a baby. When we finally moved to home

health care they slowed it down and it was so much better -- but the

headaches afterward were still unbearable. After 6 months the nurse

asked us to consider changing products. We talked to the doctor and he

thought all products were just alike. He then ordered the product

that she used for 5 years. She's just changed to their newer product.

But what a difference that made -- we got the speed straightened out,

and then the product and now IV's are just an access problem that is

usually okay. What I'm saying is that is takes time. It's traumatic

while the process is going on -- but you will eventually find what is

best for little Zachary.

I can't remember how many IV's he's had so far -- but you may actually

still be in that stage where the IVIG makes him sick BECAUSE it is

working. Until he gets a steady supply in his blood stream that keeps

the bacteria out, there are reactions to the IVIG just because it goes

to work fighting the bacteria. That takes usually between 3 to 9 months

depending on how sick they are before starting IVIG.

Hope some of this helps.

In His service,

Dale

mgt66 wrote:

>Zachary received his IVIG yesterday, and it was the worst time he

>has ever had with it. I'm getting quite concerned because each time

>he receives it,the side effects are increasing, and the rate of

>infusion has been dropping.

>

[Guest guest]

Zachary (5-7-99) weighs 34 pounds and gets infused with Gamimune, 6mg,

and the highest we can run it right now is 30cc a hour.

Increasing problems with IVIG

Zachary received his IVIG yesterday, and it was the worst time he

has ever had with it. I'm getting quite concerned because each time

he receives it,the side effects are increasing, and the rate of

infusion has been dropping.

This forum is open to parents and caregivers of children diagnosed with

a Primary Immune Deficiency. Opinions or medical advice stated here are

the sole responsibility of the poster and should not be taken as

professional advice.

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