chicago/indianapolis docs?

[Guest guest]

Is there an MDA clinic or doctors in Chicago, or Indianapolis that are

good with mito/metabolic diseases?

Kim

[Guest guest]

Kim, we have 2 GREAT doctors at Riley Hospital for Children: Dr. Wash

(Neurology) and Dr. Hainline (Metabolism). Dr. Walsh is even helping us

by riding his bike in our annual Miles for Mito ride.

Please call me for more information.

Sue Ann Bube

President UMDF Indiana

chicago/indianapolis docs?

Is there an MDA clinic or doctors in Chicago, or Indianapolis that are

good with mito/metabolic diseases?

Kim

Please contact mito-owner with any problems or

questions.

[Guest guest]

Sue,

Thank you. Are there doctors that are good for adults, in your area?

Kim

> Kim, we have 2 GREAT doctors at Riley Hospital for Children: Dr.

Wash

> (Neurology) and Dr. Hainline (Metabolism). Dr. Walsh is even

helping us

> by riding his bike in our annual Miles for Mito ride.

>

> Please call me for more information.

>

> Sue Ann Bube

> President UMDF Indiana

>

>

> chicago/indianapolis docs?

>

>

>

> Is there an MDA clinic or doctors in Chicago, or Indianapolis that

are

> good with mito/metabolic diseases?

> Kim

>

>

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

[Guest guest]

None in Chicago.

[Guest guest]

Hi Kim,

There are NO " good " MDA clinics or metabolic doctors in or around

Chicago. One metabolic doc is " OK " if you have one of the known,

easily detected genetic mutations, ie MELAS, MEERF, etc. We live

within 20 minutes of Chicago and 3 MDA CLinics, yet travel to

Milwaukee for case management and Mayo Clinic and Cleveland Clinic for

metabolic specific management. I actually work at a medical center in

Chicago that has an MDA Clinic. When I questioned two of the docs I

was told, " Mito is so rare I've never seen a pateitn with it and I'm

not likely to during my years of practice " . The other said, " We

should see your girls in the event of an emergency. We don't have the

typical coctail meds in our formulary, but we could get them within 48

hours if they were admitted. " All of the local docs that evaluated my

girls totally missed the diagnosis and, to this day, they have NO clue

how to manage them or what to do if and when there is a problem.

Overall, my girls to receive good care/management from teh Critical

Care team in Milwaukee. The docs in Milwaukee actually were the ones

that started the mitochondrial disease evaluation process and

processed the referrals to 1) Atlanta, 2) Cleveland and 3) Mayo.

[Guest guest]

Yes! I highly recommend Dr. Barbara Burton at Children's Memorial Hospital

in Chicago. She is a metabolic specialist although not a mito specialist

per se. She identified my son's mito. We then chose to have a formal

diagnosis done by Dr. Shoffner in Atlanta. She is still a friend and you

can use my name if you want----Lori Cutillo and son, . We moved 1 1/2

years ago to California, but will go back there in another year.

Lori and (complex I and IV)

chicago/indianapolis docs?

>

>

> Is there an MDA clinic or doctors in Chicago, or Indianapolis that are

> good with mito/metabolic diseases?

> Kim

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Lori, what area did you move to? We moved to Orange County three years ago, originally from Denver, Colorado.

BeccaLori Cutillo wrote:

Yes! I highly recommend Dr. Barbara Burton at Children's Memorial Hospital in Chicago. She is a metabolic specialist although not a mito specialist per se. She identified my son's mito. We then chose to have a formal diagnosis done by Dr. Shoffner in Atlanta. She is still a friend and you can use my name if you want----Lori Cutillo and son, . We moved 1 1/2 years ago to California, but will go back there in another year.Lori and (complex I and IV) chicago/indianapolis docs?>>> Is there an MDA clinic or doctors in Chicago, or Indianapolis that are> good with mito/metabolic diseases?>

Kim>>>>>>> Please contact mito-owner with any problems or questions.>

[Guest guest]

Not really.

Sue Ann

chicago/indianapolis docs?

>

>

>

> Is there an MDA clinic or doctors in Chicago, or Indianapolis that

are

> good with mito/metabolic diseases?

> Kim

>

>

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>