update on Dr. situation

[Guest guest]

I sent my fax this morning addressed to Dr. Demuth and Dr. . About two

hours later she called me back. After much conversation, she has agreed to do

pre and post vaccination antibody levels on . We go Tuesday for the

pre-vaccination blood draw and the vaccination. She says she is betting she

will make the antibodies. I told that I seriously doubted it.

So, I guess we go from there. She says that she talked this whole situation

over with Dr. Kobrinski and that Dr. Kobrinski agrees with her that this is

really not necessary. She states the Dr. Kobrinski saw the blood work and agrees

that she is making sufficient antibodies. So I guess we will see what happens.

Jerri

---------------------------------

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[Guest guest]

" she says she is betting she will make the antibodies. "

Sounds like she's engaging in a process called, " hypothesis confirmation bias " .

(i.e., a tendency to search for or interpret new information in a way that

confirms one's preconceptions and avoids information and

interpretations which contradict prior beliefs.) In addition, she is enlisting

her colleague to support her decision--before the current data have come back.

After the current studies are in, and her opinions are expressed, I'd get my own

copies -- and consider getting an objective set of eyes to look at them (in the

context of history/clinical info).

mom to CVIDer

[Guest guest]

*.63+

couldn't agree more with ! I would definately not get into this type

of engagement with a doctor. Allow them to do the testing and then get your

own copies and find another set of eyes who aren't already colored with a

preconceived idea. We have dealt with the same thing here and it's so very,

very

frustrating. It took me 4 long years to convince doctors to do the testing

(they felt that he was fine because he was so big and " healthy " looking) and

then another 3 months to start treating him. After 10 months of IVIG he was

doing great, they decided he could stop, one set of post IVIG labs and no

further

follow-up needed at all. We were discharged from their practice. Even after

several calls from fellow doctors, they said he was fine and discharged, no

need for any further testing, they had their numbers and that's all they needed.

Like you, we're not located close to another practice that isn't " friends "

with this practice. We we are fortunate enough to have had a pulmonologist who

started prophylactic antibiotics which was was the answer to many prayers. He

currently gets high dose IVIG for autoimmune mediated epilepsy so he's

covered in a couple of ways. Some day I'll have to take him somewhere else for

another evaluation, but right now it's the least of his concerns.

I will pray that the answers come to you and that this doctor will open her

eyes and work with you rather play the " I'm the doctor and know all and your

the mom and know nothing " game.

Take Care and God Bless,

_www.caringbridge.com/ny/my2angels_

(http://www.caringbridge.com/ny/my2angels)

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