dueling drs

[Guest guest]

I feel somewhat caught up between two great drs that I both like and

respect. One, our pulmo, has been with us over five yrs, and as far as

Im concerned, saved my kids on more than one occasion......when local

drs were blowing us off, she took us seriously, found the root of most

of the problems, and set about aggressively " fixing " them to the best

of her ability. This dr I love,trust, and consider part of our family.

So do my kids.

The other, infectious disease, we've had nearly two yrs. He's a great

guy, very personable, good with my kids and seems very knowledgable.

Pulmo referred us specifically to him to treat the kids CVID and to

manage the IVIG. He has done well for us thus far, and I trust him.

He (ID) had planned to trial the kids off IVIG last summer, to see how

they did and to check their numbers in the fall and see how they held.

That did not work out, for several reasons, and we all agreed to keep

up one more yr, and then he said, so long as they were stable,

medically, we'd give it a go this summer. My ten yr old daughter has

been counting down infusions until the break. At last IVIG, he told

her, so long as she didnt get a bunch of bacterial infections by

April, he would make April her last infusion for the summer. She's

been thrilled, and lookiing forward to this.

Today we saw our pulmo. (for the boys, the girls go thursday). During

the appt, I mentioned this, that we were planning to trial two of the

kids off over the summer, and she whipped her head around and very

matter of factly disagreed with that plan. Citing repeated abx needed,

along with a couple pred bursts, she says she is going to " have a

talk " with the ID guy, bc one of the kids is barely where he needs to

be, and its just now getting better(he began IVIG last Feb) and she

isnt going to screw him up now. And she still has no idea how much

problem we've had with Savannah's asthma, due to repeated viruses this

winter. Im a little nervous when I take her in on thursday to listen

to this tirade again(not that she is mad at ME, she just doesnt agree,

and she doesnt agree VERY LOUDLY). Im nearly certain she'll say NO,

after Savannah has already been told yes. And that is going to stink.

Its hard to decide which side of the fence to impale myself on. Last

yr, we were considering a port for Savannah(bc she wanted it, and has

some trouble with getting lines in, and has anxiety issues). ID guy

wanted to wait, and pulmo pitched a fit(bc she came to infusion a few

times and saw Savannah in tears after several failed attempts). And

she then tore into him, fighting for the port on my daughters

behalf,and eventually, we decided against it--bc ID said, if we could

just wait until we knew if she passed/failed the trial off this

summer, he would be ok with it.

I am beginning to feel like Im in the middle, without intending to do

that. And I feel like somehow, I keep ending up looking like Im

running behind ID's back to tattle to pulmo,which isnt the case, but I

feel it looks that way. And I feel like I need to choose. And thats

hard. I can understand both points of view, I understand both the drs

and their reasons. Im not sure what to do.

valarie

mom to three with CVID