Dr Berger??

[Guest guest]

we saw Dr Melvin Berger at Rainbow Babies in Ohio a month ago. I was

so excited. They were VERY thorough and kind. Dr Berger said he'd

call with answers in 10 days. After 2 weeks I called them. I keep

calling and talking to his assistant, who I'm told does all these

phone calls, that Dr Berger doesn't call anyone. Fine, she's nice

too. But every time I talk to her she says she'll corner Dr Berger

and talk to him and get back with me. She never calls back and

there's never any news. Finally on Thursday my Ped's office got a

letter from Dr Berger. I was there for follow up (Lochlan just got

out of the hospital again, he had a kidney infection, perianal strep

infection, and cellulitis on his toe creeping well up his leg). The

ped copied the letter for me. I took it home to read. It was almost

3 weeks old but had *just* been sent. It said nothing really... a

page re-stating Lochlans history, a page on the tests run here in

Michigan 2 months earlier and their results, a paragraph on the fact

that he was running tests and would be in contact soon, and a

sentence stating that one test done here was done wrong and needed

to be repeated and he would contact ME ASAP to have the blood drawn

for that. But that was July 18th. Nobody ever called me about the

test. I had called them for ANY news half a dozen times and it was

never mentioned. Thursday I called and asked the assistant about the

test and she promised to fax a lab request to my peds office right

away and I could pick it up and go get blood drawn. It wasn't faxed

Thursday. I left a message Friday, it wasn't faxed Friday either. I

left a message today, still no fax and no call back.

I don't even CARE any more if they name what's wrong, but I am

desperate to start some kind of treatment/prevention. He is always

just SO sick.

Who has seen Dr Berger? What did you think of him? Is this typical?

Everyone agrees he has a PID so why isn't anyone doing anything

about it?

thanks

Kimmi (mom to Connor 8, Skye 7, Trew 3, and Lochlan 18 months and

medically complicated)