~Re: [Parents of Little People 2] Re: [Parents of Little People 2] Hopkins or duPont?

[Guest guest]

Thank you, Dee, for bringing this up~ No offense to the people at s Hopkins

or DuPont, but they really aren't the ONLY two hospitals in the world to go. It

irritates me no end that parents are willing to go into bankruptcy (literally)

when they are able to take their children to other hospitals that are just fine.

The experts on dwarfism are willing and able to consult with the other doctors

regarding your children and their condition~ at no cost to you!!

We were in the military when our daughter had to have her bilateral leg

straightening. We lived in Dayton, Ohio. We didn't go ANYWHERE.We COULDN'T!! We

had the base head orthopedic surgeon consult with Dr. Rimoin (who was her doctor

previous to our moving to Ohio) and lucky for us, her surgery went perfectly.

Other orthopedic doctors will look at her legs today and marvel at them, and ask

about her surgeon. To tell you the truth, at this moment, his name escapes me,

but I do know he retired from the military shortly after, and went into private

practice somewhere in the south.

To put it all in one sentence~ Think local! Not Global!

Take care,

Patty

[Parents of Little People 2] Re: [Parents of Little People 2] Hopkins

or duPont?

,

First of all, congratulations on the birth of your baby girl! My name is

Dee and I am an achon also and a member of the LPA Medical Advisory

Board. I am also a member of the team at the Greenberg Center for Skeletal

Dysplasias at s Hopkins in Baltimore, MD. Your question to the group

has many types of focus. First of all, I ask families to think about the

whole family, do you have other children and how are they involved in the

care of your daughter with achondroplasia? If this is your only child and

you put your total focus on Abby you should still consider the travel and

easy access to medical care in an emergency. You live on one coast and you

are considering care on the opposite coast. Besides the expense and the

possibilty that your insurance may not cover Abby's care out of network,

consider the fact that surgeons and physicians may and often change their

locations as well?

The members of the LPA are very fortunate that there are a number of first

class institutions around the country with experienced physicians and

surgeons who come together each year during the LPA conference and share

their knowledge. In many cases, the physicians in the smaller centers

across the country trained under those now heading the bigger centers. In

Northern California you are fortunate enough to have ka Okenfuss and Dr.

Ralph Lachman, both MAB members, working at the Kaiser Childrens' Hospital;

and Dr. Hoffinger, Ortho surgeon and Dr. Rich Kerbavaz, Ent

specialist. In LA with Dr. Rimoin's(MAB) group you have Dr. Joe Isaacson

(MAB), Dr. Matt Bernstein ortho surgeon and Dr. Moise pour

neuro-surgeon. I consider all these specialists some of the best in the

world. The physicians on the MAB consider the group as a net work, we do

work together for the benefit of the individual. I am confident that where

ever you decide to take Abby she will be well take care of.

Dee

On 6/4/07, Parkhurst

<jparkhurst04@...<mailto:jparkhurst04%40>> wrote:

>

> Hello,

>

> I wanted to poll the group a bit about where to go with my daughter.

>

> As I mentioned before, she has achon and is now eight weeks old. We have

> access to great specialists in the San Francisco Bay Area where we live but

> want to see some of the docs who focus on skeletal dysplasia.

>

> Perhaps it depends on the health issues. Thus far, Abby is doing well. We

> have appointments with orthopedics and neurosurgery this week. ENT and

> pulomonogy agree she looks fine. She has a sleep study this week as well.

>

> From what I can gather, our choice would be duPont right now but I wanted

> to hear from others.

>

> Thanks!

>

>

>

>

> ---------------------------------

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> Games.

>

>