SubQ questions!!!!!

[Guest guest]

Okay-- we're slowly making progress toward switching to subQ....... the nurse

who did the intake for NuFactor made some mistakes on the intake for one of them

and called me today..... then at the end she started telling me how Vivaglobin

was approved (already knew that thanks to the list!) and how we might consider

waiting yet another month to start SubQ --when vivaglobin becomes available.

So I explained about ph and how I have been trying to prepare him (he has

OCD tendencies and needs a while to prepare--and once he is ready-- we can't

switch on him!!!!!!! ) and such and how we really want to get out of the

hospital with the two unfriendly nurses there and even though my recent

complaint wasn't nasty, I am sure they will now be even more unfriendly.....

~sigh~ So she says that the boys will have a product switch already because

they use PolyGam S/D and they don't have a documented IgA deficiency. I said

that was fine..... I was under the impression there were not the same risks of

reaction with SubQ as there are with IV.... we are already planning on doing

the first infusion at the hospital (2 days in a row with NuFactor nurse there--)

-- so she says, that we should consider waiting until Vivaglobin is available

and then we won;t have to go back a second time once we switch to

Vivaglobin........ so I told her that we wouldn;t mind having to go back one

day IF we should switch.

I then said, " How do you know when it will be available? It may take 6 months

to get enough out there before my boys could switch.... and we don't want to

wait that long to switch. " SHe told me that the makers of Vivaglobin don't

know the date it will be available? The launch is next month? <going on

memory> and that they were taken off guard because it was approved last

Monday--they were thinking it would be approved much later.......so this has

apparently messed things up-- this is what she explained to me.

They are going to have a meeting on Thursday and talk about S & J and the options.

I won't be there to voice my opinion. I may have to call someone to let them

know what I am feeling..... then they are going to talk to our doctor next week

after the meeting.

Questions-- do you think it is a big deal if we go ahead and start SubQ as I

want to do and then if and when Vivaglobin comes out and we/our hem decides to

switch we go ahead and go to the hospital one day for a few hours to infuse????

I don't think it is a big deal......... How many using SubQ have switched

brands? Did you have to go to the hospital to switch?

Part of the reason we want to go to subQ it to help with the vein access...

okay.... any input would be nice. I feel like my bubble has been burst... what

if it takes 6 plus months for Vivaglobin to become available for all

patients!?????

+JMJ+

Peace Be With You,

><>Pattie

Piedmont Triad, NC

Mom to , age 11 & healthy; age 9, Shwachman-Diamond Syndrome; and

ph age 8, Shwachman-Diamond Syndrome.