Re: Intensely Frustrated

January 19, 2010

after about the 2 or 3rd infection you think they might clue in. Did your former

doctor write an introduction letter explaining the accommodations?

Unfortunately even with the diagnosis firm doctors are so concerned with being

sued and since there isn't a relationship developed yet they do not understand

how in tune you are to their symptoms. I understand both points of view but it

might take a letter from your former doc stating that he did this to get it

started again.

Ursula

Mom to (17) and Macey (14)

________________________________

From: cerdaclan <tcerda@...>

Sent: Mon, January 18, 2010 10:41:09 PM

Subject: Intensely Frustrated

Wondering if anyone else has to deal with this and how...looking for

suggestions. Living in Vegas, we were EXTREMELY fortunate to have had a ped.

that understood how easily the girls got sick with exposure and he came to our

house rather than asking us to come to the office. Most of the time, he would

listen to what I told him over the phone and treated without seeing them,

knowing and respecting that we have a pretty good handle on things. Now that we

have moved, we have lost that luxury. Just before Christmas. the girls had

their first Ped appt to get set up. They had us go in the back door and

sanitized the office they put us in. Within 36 hours, Molly had pneumonia.

Again, we had to go back last Monday to get all their new orders for meds, and

again, within 36 hours, Maggie was so sick with a stomach bug they wanted to

medevac her to the nearest ped specialty hospital. Within another 24 hours,

Molly and I were also sick. I have NO idea what

to do. It is terrible to know that we can expect the kids to get sick every

time they see the doc now but that the doc will not fill orders unless she sees

them. How does anyone else deal with this?

Terri

Mom and both daughters CID

Molly (7) Cystic Fibrosis and CID

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