RE: IVIG input needed

[Guest guest]

IM Ig hasn't been used for PID treatment in years. Is this doctor up to date on

Ig deficiency treatment. I would go with what the immunologist has to say and

hopefully get to stick with IVIG. I'm sorry to hear that he has to start.

Possibly you could get one infusion in next week and that would buy you about 4

weeks until the next one is due and should take you past your due date.

Ursula - Macey's mom (8,CVID)

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

Dayna, I'm pretty sure we've discussed this before, but let me remind

you and every one in the group -- if a doctor recommends an IM

(intra-muscular) shot of IgG -- RUN!!!!! He hasn't read anything

about immunology in the past 15 years. For almost 30 years IM shots of

IgG were the only treatment. They are excruciatingly painful and still

did not raise the IgG to protective levels. It is an archaic and

unacceptable treatment for PID. IM shots of IgG are still used for

normal people (ha) who need extra protection for a specific exposure.

But are no longer used - and shouldn't be -- for PID. Please DO NOT

ALLOW anyone to give your child an IM shot of gammaglobulin. The

preferred way to receive IgG now is the IV. Although in Europe and

beginning in the US is the subcutaneous administration of IgG that is

looking very promising. However, I don't recommend that to young

children as they don't have enough fat to absorb it painlessly like

adults or teenagers.

I would recommend that you call IDF's main number and ask that

literature be sent to your pediatrician so we can get him up to speed.

He should receive the Physician's Primer as well as the Patient and

Family Handbook. Both would be beneficial to him. That number is:

1-800-296-4433.

Make sure that each one of you have received your copies, also. You

need the Patient and Family Handbook, the booklet for children " Our

Immune System " , and you need a couple of the Physician's Primers to have

available whenever you have to visit an ER or new doctor. All of the

literaute is free and is mailed to you free of charge.

Part of our job as Mom's is to bring the doctors of America up to speed

on PID -- so, educate, educate, educate!!!!!

Best wishes to Charlie as he takes this step. It can be a terrible

ordeal for a while, and then it just becomes habit and something that

helps him feel better.

I was in a discussion group to talk about Subcutaneous IgG and smiled

when I heard an older lady say that she would not consider subQ because

IVIG day was her special day. She always bought a pint of her favorite

ice cream, put her feet up and had either a favorite book or a favorite

video and thoroughly enjoyed her one day a month treat. The nurse came

to her house and she never got out of her pajamas. That was her special

day and she wasn't about to give it up. So..... just know that IVIG

day can be made to be okay.

There's a lot to be said about mother's attitude -- if you see IVIG as

being life-saving medicine for which you are extremely grateful then

Charlie is going to grow up with that knowledge. If you treat IVIG as a

terrible thing that is happening to him, he will grow up with that

attitude. (either way, he'll believe that for at least a few years in

the teenage period!)

God bless you as you prepare for this new adventure. Because Charlie

has IgA, you don't have to worry about him rejecting the IVIG, but the

doctor will want to start the IVIG very slowly to check for any

reactions. He may or may not want to pre-medicate with Benadryl or

Tylenol -- some do, some don't. You'll want to ask about that. You

may want to tell him that some people have trouble getting the nurses to

infuse it slow enough at the beginning, so you'd like his protocol in

writing, please. If he is not familiar with that protocol, you can

call the company that manufacturers the brand that he chooses. If he

needs information on brands and their differences, he can contact IDF

main number, or he can talk with an Immunologist through the Consulting

Immunologist Program. That is available only to your doctor, but is

free of charge. That number is: 977-666-0866.

Hope that helps.

In His service,

Dale

Fladhammer wrote:

> immuno will want to see him first, so I want to go in with a list of

questions/concerns about IVIG. Can anyone help me out here?

>

>

>

[Guest guest]

Hi, Dayna,

I'm glad to hear that they are going to try a different treatment for

Charlie. We had our first IVIG not quite two years ago. The first place

doing the treatment was not good at managing the care. It took a while, but

we left that local group for a better doctor and for more than a year,

Rebekah has been infused every 21 days with few side effects.

When you talk to the immunologist, ask about side effects and reactions,

infusion rates, and premedication. We learned about the importance of all

of these things only after there was a problem. And let me assure you, you

don't want to be learning about these things at 2 AM!

Rebekah had a lot of problems adjusting to IVIG, more than it seems most

people do. So, I won't alarm you with our stories. Just ask questions and

if your son seems uncomfortable during the treatment, insist that they

address the discomfort. Don't let them try to convince you that it's normal

or transient.

Rebekah did experience a boost in health after we started treatment, but not

until we had been treating every 21 days for about 7 months did we see a

genuine period of good health. So, don't expect an overnight cure.

Pam

wife to (16 years)

mother to , 10, Hannah, 7, Rebekah, 4, and Leah, 2