Re: Please help with your suggestions, opinions, thoughts!

[Guest guest]

" what was the hardest part for your family in choosing a treatment or in

choosing a center to receive treatment? " **The hardest thing for me was

finding a surgeon that wanted to take a conservative and effective

approach to treating my infant with severe infantile scoliosis.

and

" what information were you missing when you learned of your child's

diagnosis? " . **The docs in my state did not provide any info. They

scheduled fusion surgery at approx. 1 yr. of age and could provide no

answers for the long term effects of such a procedure.

Please pass on my contact info to the doc initiating this process. ISOP

could be instrumental in representing Early Treatment with Mehtas

specialized EDF casting.

Thanks and keep us posted.

HRH

> Hi all, We started our journey with Matson almost 6 years ago and

> & this group have given us the support we needed from the beginning!

>

> At the most recent Early Onset Scoliosis meeting (an organization of the

> pediatric orthopedic surgeons in the USA and from around the world,

> focusing on scoliosis in young children), the process of creating a public

> registry specific to Early Onset Scoliosis, including all types of

> scoliosis effecting young children, was initiated. Dr. Kit Song is the

> lead investigator on the project. The goal of this registry is to help

> families identify accredited centers and surgeons and be able to learn

> more about treatment preferences, infection rates, outcomes, current

> research, etc. The hope is that, as a successful registry is built and

> used, it will lead to the establishment of a National Foundation for Early

> Onset Scoliosis. Development of the Foundation would serve to increase

> public knowledge as well as public support and provide a place where

> families can connect, share experiences and valuable information, as well

> as be a place to offer invaluable personal support.

>

> One of the anticipated challenges in establishing a public registry is

> ensuring that the best information is available to answer the most

> frequently asked questions, and the questions asked initially by parents

> and family members new to the diagnosis. Dr. Song has invited a small

> group of parents to help with the development of this registry and now we

> are coming to you for your insight and expertise. We are asking that you

> provide suggestions as to what questions you had initially, and/or what

> information would have been helpful to you as your family started this

> scoliosis journey. Possible thoughts to get you started: " what was the

> hardest part for your family in choosing a treatment or in choosing a

> center to receive treatment? " and " what information were you missing when

> you learned of your child's diagnosis? " . Please feel free to submit your

> thoughts on the site that you are receiving this request (VEPTR board,

> facebook, etc) or you are welcome to contact any of us individually using

> our email addresses listed below. We need your input no later than

> February 29th in order to compile the data and move forward through the

> process. We will gather the information and fine tune it, with further

> input from you, until it is specific enough, yet very informative, to be a

> good starting point for the public registry. Please know that regardless

> of the treatment options you chose or are considering, we still need your

> participation! The registry and foundation are being established to

> provide information and support for the broad spectrum of Early Onset

> Scoliosis, not any one treatment approach. Thanks for your help in

> furthering public awareness and working to provide transparency regarding

> a diagnosis that we all know is complicated and scary.

>

> Carmell Burns - boulderfam@...

> Colleen Diedrich - colleendiedrich73@...

> Fournier - mattnsteph4nier@...

> Wilcox - bluemoon9990@...

>

> Thank you for your time, thoughts, and consideration!Please feel free to

> contact me with any questions at all.

> Best regards always,

> Fournier

> Mom to Tyler (9), Lily (5), and Matson (6) diagnosed at 6 months, 5 casts,

> 2 braces, and Dual Growing Rod Surgery 3/10, 3 lengthenings, 4th

> lengthening scheduled for May 2012

>

>