Fresno, RSS parent in California

[Guest guest]

Hi ,

I haven't a good look at my email since June.

We live Fresno, I understand your frustration with the local docs.

Mercedes, had her first appoinment with Dr. Geffner at Children's

Hospital of Los Angeles on June 22. I am happy about the interest he

has taken in Mercedes' condition. He reaffirrmed the diagnosis of RSS

by Dr. H at the 2004 convention. Dr.H recommended him as one of the

docs in California.

I printed out his info from the CHLA web site and asked our ped for a

refferal. I had to do it twice since the office staff was too

helpless to find the address and phone number from the info I had

printed or a phone book.

http://www.childrenshospitalla.org/body.cfm?

id=52 & action=detail & ref=203

We have a follow up appt. in Dec 23 and are going to CHLA for a QCT

Scan Dec 2.

Mercedes had osteopenia on x-ray and on DEXA scan. Dr. G says there

are only a few QCT scans in the country and I was so happy there was

one in California. He says it is the best way to measure bone density

in children.

There is also Dr. Prakasam in Sacramento, of Children's Medical

Specialist. There used to be a web site, but I can't seem to find it

anymore. Kathy in Sacramento, spoke well of him.

You may email me privately, or call me at 276-5577.

PS. CHLA is not too far from Universal Studios.

Hi Missy,

>

> We've seen one endo at UCSF when n had a surgery there for

> something else, and he didn't have a clue about RSS. I felt like I

was

> being interrogated.

>

> Have you seen Kirk Neely at Stanford? He actually studied with Dr.

H a

> little and respects her opinions.

>

> I know there's also a very good one I think in the area.

> would know the name.

>

> good luck!

> Cindy

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