Colorado and Mito patients..

[Guest guest]

Hi all, I was just curious if any of you are in or around Colorado.. Like Nebraska, kansas etc.. and If so who you see for mito?

Missy

mom to jeremy

www.caringbridge.org/co/jeremy

[Guest guest]

Hi and yes we are in Loveland colorado and jeremy was just diagnosed.. With MNGIE, and now we are starting to see the metabolic clinic at childrens. Right now we are in the beginning changes of all of this, DR. Holmes is our GI and we got to PSL alot for our stuff and children's for some. WE see pain clinic there and endocrinologist.

Hope to meet you guys soon.

Missy mom to jeremy with MNGIE

www.caringbridge.org/co/jeremy

[Guest guest]

Missy,

I live in southern Colorado, and go through Denver Children's for both Mitch and Lexi. Where abouts are you>

ruth

mom to Mitch (9) and Lexi (6), both mito affected and my treasures

[Guest guest]

HI MISSY; MY NAME IS JENNIE AN DI AM THE PROUD MITO MOM OF LOGAN, WE LIVE IN KANSAS AND WE SEE DR.LISA GILMER, PEDS, DR.STACEY KNOBLER,NEURO, DR. STEPHEN SMITH, HEMATOLOGY, ALL AT KU MED CENTER.

WE WERE DEALING WITH DRS FROM CHILDRENS MERCY,BUT LOGAN HAS RECEIVED BETTER CARE THROUGH THE DRS AT KU,IN KANSAS CITY, HE HAS QUITE A FEW DR.S BUT THESE ARE JUST A FEW TO GET YOU STARTED.

THESE DR.S ARE THE BEST IN THE BUSINESS. ALSO DR.KNOBLER HEADS THE MDA CLINIC WHICH WILL BE HELD IN SEPTEMBER AT THE DDC BUILDING . IF I CAN GET YOU ANY MORE INFO I WOULD BE MORE THAN HAPPY TOO. YOU CAN EMAIL ME AT jenniecarter@...

LOTS OF LUCK TOO YOU !!!!!!!!!!!!!!!!!!!!!!!!! ALL THESE PARENTS HAVE GREAT DR.S SO I AM SURE THEY CAN GUIDE YOU TOO.

JENNIE PROUD MITO MOM OF LOGANMiswillis68@... wrote:

Hi all, I was just curious if any of you are in or around Colorado.. Like Nebraska, kansas etc.. and If so who you see for mito?

Missy

mom to jeremy

www.caringbridge.org/co/jeremyPlease contact mito-owner with any problems or questions.

[Guest guest]

Missy,

We are in Aurora, Colorado.

My son, Billy, has a surf1 mutation with his problems showing up in

his complex 4. We go to the Children's Hospital in Denver. Their

clinic " Inherited Metabolic Disorders " has a picnic in Boulder every

year in the fall. We meet people from the area. We have a contest

to see who came the farthest. So far I think about 900 miles is the

max range. Most of those attending are the ones who have disorders

which can be treated by what they eat " Eat right, Stay Bright " . They

have a recipe swap and bring samples of their crazy foods. This last

year one of the children was grown up enough, married and was

pregnant. Billy is the only one there in a wheelchair but he does

the races and plays Simon says like the rest of them. There is

another website for Colorado parents called P2P which has a lot of

good stuff for this area.

We talked with one very nice lady in Denver who is also on the

website but keeping up with " special need " kids takes up a lot of

time! We met one family down at the hospital who had just had a dx

for their son. They live up in the mountains.

Are you in the Colorado area?

Twana

-- In Mito , Miswillis68@a... wrote:

> Hi all, I was just curious if any of you are in or around Colorado

[Guest guest]

-Missy,

Forgot to say that Billy's mito doctor now is Dr. Tsio. It used to

be Dr. Greene but she headed out to the Washington D.C. area. Cindy

Freehauf is one of the best clinicians to explain things!

Twana

[Guest guest]

Hey Ruth, we are from Loveland, and go to Children;s and PSL for all of jeremy's care.

Missy

www.caringbridge.org/co/jeremy

[Guest guest]

Hi Missy,

We are also in Southern Colorado, although not as far South as Ruth.

We are in Rush, an hour east of the Springs. We are seeing Drs at

Children's for everything right now, and just had our Muscle Biopsy

done last week. Dr has been great to work with and Janelle

Kierstein is who we talk to most of the time. We did have some

problems with our biopsy, but they were more related to the anestetia

department than anything else. We come up to Denver for everything,

instead of one of the clinics, so right now we are up there all the

time. Hopefully that will slow down again.

J

9/7/01

[Guest guest]

Missy,

That's great to know, as my sister lives in Loveland. Let's try and get together one of these days!

ruth

[Guest guest]

I'm game... Would be nice to know of someone whom goes through the same things as we do..

Missy

[Guest guest]

Missy,

I'm in Nebraska -- close to Norfolk. Luke is 8 years old and was

diagnosed with mito when he was just 9 months old. He is high

functioning but still mito affected. Just moved here from Houston

almost 3 years ago, so still reeling from the difference in medical

care.

> Hi all, I was just curious if any of you are in or around

Colorado.. Like

> Nebraska, kansas etc.. and If so who you see for mito?

>

> Missy

> mom to jeremy

> www.caringbridge.org/co/jeremy