Immuno Appointment on Friday

[Guest guest]

Hello Everyone,

I've needed this past weekend just to sit with my feeling about our visit

with Bri's Immuno on Friday afternoon.

Basically, he refused to listen to me and is taking Bri off IVIG for the

summer. When he brought up the " fact " that summer is the best time, I told him

that Bri's infections have never cared if it was summer or not. In fact, I've

never known another person who has had strep as many times as Bri in the

summer--ear infections, too.

He then proceeded to tell us (Bri was in the room at the time) that at

Bri's age, he has a 90% chance of not needing IVIG any further. This really

frosted my Wheaties because I didn't want to give Bri any false hope. I told

the

Immuno that I would believe it when I see it. He told me I was being

pessimistic. I told him that I wasn't pessimistic, but have lived with Bri for

13

years and watched him be infected constantly for 7 of those years. I think I'm

more of a realist at this point. He halfway listened.

Then, I brought up Bri's stamina (or lack thereof) issue. I felt like if we

were going to take him off for the summer, he wouldn't be able to go back to

school full time in the fall like we had planned. He said that exhaustion

didn't necessarily have anything to do with the immune system!!! Then, he

contradicted himself and told me the girl in the next room (who was receiving

IVIG

at the time) also struggled with stamina. I have seen my very active child

become chronically ill and then...TIRED. You will simply never convince me that

it is anything other than his immune system. I did tell the Immuno that Bri

had just had his Cardiac checkup and he is doing great--so he wouldn't even

think of blaming his cardiac status.

The one positive thing that I did accomplish was to talk him into letting

me do SubQ if/when Bri goes back on. He said it was " more pokes " but I

reminded him that it would be less painful, cause less scar tissue in the veins

and

Bri wouldn't be exposed to bugs at the hospital each month and miss school. He

agreed. FINALLY. Of course, he is thinking there is only a 10% chance that

we'll be going back on.

This Immuno's mentor was Dr. Soronsen who has published papers on the need

for IVIG for only two years in a percentage of patients. Apparently, this is

what he's basing his 90% figure on.

After all of this, I had to take my son to dinner and tell him that 90% was

probably not at all accurate. I HATED to do this, but refuse to give him

false hope. He's lived through too much to let him believe a misstatement at

this point. He was not too happy but took it better than I expected. After

all,

going to the hospital once a month is not too high on his list of priorities

at age 13!!!

Thank you all for your support!

Sandi, Mom to --age 13--CVID