IVIg

[Guest guest]

on 5/11/01 9:00 AM, J McMullen at jemscat@... wrote:

> Martha

>

>> that her child can walk around, etc. I don't know if

> Caitlyn COULD walk around. If we weren't worried that

> she'd trip over the IV line thereby yanking it out and

> of course cracking her head on our furniture in the

> process. But an older, more coordinated child could

> certainly wheel her IV pole around and go to the

> bathroom or whatever.

>

>> Is your child so miseralble that CONSTANT (as I

> remember following surgeries, CONSTANT is the

> only word to use) interaction, etc. has been

> necessary?

> Following surgeries Caitlyn is so miserable that

> constant interaction is necessary. However, for IVIg,

> the only time that's necessary is while placing the IV

> and taking it out. Placing it has been difficult and

> that's why we're having a port put in. Removing it

> takes seconds.

>

> The 2 hours the IV is in and she's getting the

> infusion, she needs close supervision to make sure she

> doesn't pull out the IV--an older child would

> understand not to, but Caitlyn is only 5. She has a

> snack while on the IV and needs supervision to keep

> from choking (she's needed to be Heimliched in the

> past a lot).

>

> The IVIg carries a high risk of allergic reaction to

> it. It is against regulations to administer the

> medication without an anaphylitic (sp?) kit on hand

> including an epi pen and Benedryl. It is also

> standard practice to carry Tylenol on hand because of

> the side effects of fever, head ache, etc.

>

> Because of the high risk of anaphylactic shock, the

> nurse must monitor vitals (temp, blood pressure,

> lungs, etc, VERY FREQUENTLY). At home, the nurse

> monitors Caitlyn constantly so I go do other things in

> the house. In the hospital, I have to supervise

> Caitlyn myself when the nurse leaves the room to see

> other patients.

>

> These risks and side effects may scare you. We feel

> that it's worth the risks given the risks of the

> pneumonias and other illnesses that Caitlyn gets

> without getting the infusions. This treatment is so

> important to kids like Caitlyn and makes such a

> difference in their quality of life, that doctors do

> not discontinue it even when the person develops an

> allergy. The person is just treated with epinephrine,

> Benedryl, and steroids prior to administering the

> IVIg.

> We give Caitlyn Tylenol during the infusion to make

> her more comfortable. The past few times she

> developed a head ache or something towards the end.

> Typical reaction, but the Tylenol takes care of it.

>

> I'm sure Perkins could handle monitoring as needed.

> They'd have to. If she was at risk for pulling out

> the IV, they'd have no choice but to supervise her.

> If she didn't need supervision, they'd probably put a

> video on for her to keep her from walking around and

> tripping over the line.

>

> Jeanne

>

>

> __________________________________________________

>

[Guest guest]

Martha

I'm replying to you directly in case your busy

schedule does not allow you to go through the

listserv, but I also wanted to share this important

information with anyother " listers " who are interested

in IVIg.

One dr told you the infusion takes about 2 hrs, the

other dr told you about 4-5 hrs. They are both

correct. The time it takes to infuse is determined on

what the doctor feels the patient can tolerate.

Side effects of the infusion can be headache, nausea,

fever, dizziness, etc (they'll advise you thoroughly

before starting treatment). These symptoms can be

treated with Tylenol.

Allergic reactions are common--either initially or on

a subsequent treatment. Because there is no other

substitute for IVIg infusions, treatments are

continued while treating the reaction with

epinephrine, steroids, and Benedryl as aggressively as

needed. It is against regulations to infuse IVIg

without an anaphylitic (sp?) kit on hand.

Side effects and allergic reactions are minimized the

slower the rate of infusion.

The first infusion is planned to take about 4 hrs. If

there is any sign of allergic reaction, or if side

effects are bothersome, they are treated and the

infusion rate is slowed, thereby taking 5-6 hrs. If

there are no signs, than following infusions are

decreased to 2 hrs.

Caitlyn needs Tylenol to cope with the effects. She

can't explain them but she gets very cranky and tired

towards the end and is far more pleasant and alert

with the Tylenol. She's able to tolerate the

infusions in 2 hrs.

Jeanne

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