Re: s still upset

[Guest guest]

Hi Patti, we had a problem with our Freedom 60 not pumping yesterday morning at

all. So I hand pushed it . It took an hour but it works. I have a blister and a

bruised palm but it goes very slowly. Also you could use a couple of sterile

gauze and put the pliers to it gently but my experience is that you can usually

rock things apart if you are patient. this is our 3rd Freedom 60 this year but

I still like the simplicity of it. Now that I know that the Gamma can be pushed

I will never worry about the pump breaking. I just took the pump tubing off and

pushed it with the needle set. We only use 2 sites and give 30cc per site but we

use Gammunex and it is not as thick because it is a 10% solution.

BARBIE

Re: s still upset

I am going to go ahead and send the fax. is also in this Friday I know,

so if I don't get anywhere with her (deMuth) tomorrow, I will call him on Fri.

She has another appt. with DeMuth on 2/11 to redo the chest x-ray. I could just

cancel that appt if need be saying it wasn't convenient or whatever and ask to

see Kobrinski?? Or just do like you said and see if I can see Kobrinski on a Wed

sick appt.

Could she go in as a new patient with Kobrinski and still have her be able to

look at the old records?

rsula Holleman <uahollem1cox (DOT) net> wrote:

Jerri - I would definitely question the lack of antibody response statement by

Dr. Demuth. Unfortunately there is still no consensus opinion amongst the

immunology community about what constitutes a pre to post response. Some do

still go by the straight lab value of 2 and some doctors want to see a fold

response between pre and post levels. I believe Dr. Kobrynski at Emory is a fold

response immunologist - for lack of a better classification.

This new doctor has her own ideas obviously and is part of a new system, she

needs to take the time to develop a patient/doctor relationship before

re-diagnosing so quickly. I would reapproach in a week or two. with a fresh

perspective and supporting documents you might get further. Also you might ask

about completely redoing the immunology workup. The numbers may be there but if

there is no response to vaccinations then the point is mute. If she says there

is no reason to test response because the numbers are good then she's wrong. My

husband is a prime example of that. His IgG and IgA were fine but his response

is crap. He's classified CVID on response alone. But even before the retesting

is complete then you need to get a firm answer on what constitutes an acceptable

response to the vaccinations and whether it is a straight lab value or a fold

response. Some places are funny about seeing different doctors within a group,

they think it steps on toes or

something. Or one

doctor hates to contradict what another says within the group because it might

undermine them.

I would seek another opinion. Either wait out Dr. or try and get in

with Dr. Kobrynski. Maybe pick a clinic day that Dr. K is there and Dr. Demuth

isn't and make a sick visit appointment. If you try for a checkup appointment

they might have to put you with your assigned doc but a sick visit is where you

get just whoever is in clinic then. I know Dr. K's clinic day is Wednesday's.

Was she there today?

Don't let this get you rattled just yet. Nothing is set in stone and you're

looking out for what is best for your child.

Ursula - mom to (15) and Macey (12, CVID)

http://www.primaryi mmune.org

http://www.jmfworld .org

http://caringbridge .org/ga/macey/