We've moved!

[Guest guest]

We are finally moved to Indianapolis and starting to get settled!

Did I miss anything exciting while I was away the last 2 weeks? I

need to spend some time looking over old posts to get caught up.

and Meredith have already met with ID and I've met with the

head hospitalist and medical director at Peyton Manning Children's

Hospital. It looks like we will be trying to do IVIG in the

outpatient hem/onc clinic, being followed by ID and hematology

locally and still traveling to Cincinnati, too. ID felt like we

should do a 6 month trial of GCSF for chronic neutropenia, so we'll

see what hematology says in 2 weeks. We have also set up appts with

the new ped, GI, pulm, and may need endo and/or genetics locally in

addition to our endo in FL. Crazy! I have been very impressed with

the docs at Peyton Manning (St. 's). They have all been

emailing each other like crazy about our kids, trying to keep

everyone in the loop. When we saw ID on Tues, he had already heard

about the kids and knew the basics. That has really been huge and

mostly due to our new ped whom I love! What a blessing!

One question - has anyone seen the studies done on metabolic

disorders where Gamunex is the preferred brand? IDF didn't know

about it but I've heard it exists. I haven't been able to find it

on the internet but there are so many studies that it's been hard to

narrow down. One of our doctors has seen it, I just wanted to get

my hands on it myself to present to the docs here. The pharmacist

at the hospital is saying it's hard to get and may not even be

available for much longer. I'm trying to prove my case to not have

to switch brands after we've been using it for almost 3 years!

Thanks!

Mom to , 5 - GSD and PIDD

Meredith, 3 - GSD and PIDD

, 8 - healthy

Carmel, IN