Thursday, 3 February 2011

Orlando and selective dorsal rhizotomy info all in one

"Dusk", February 1st, 2011

Seeking enlightenment

A while ago, when I first posted about the parent who was looking for information on groups for children at the conductive centre in Orlando, I received an email telling me "I think I know someone who went there I will ask them".

http://www.susie-mallett.org/2011/01/stanley-hong-kong-2010-i-received-this.html
Perhaps that someone was Ellie's mum, as it was Ellie's Mum who wrote a long and comprehensive answer on the Babycentre site.

http://community.babycenter.com/post/a26104187/central_florida_conductive_education_center

It is also Ellie's Mum who has written on Ellie's blog about the changes in her daughter's life since she underwent selective dorsal rhizotomy surgery:

http://elliesfootsteps.blogspot.com/2011/02/one-year-later.html

The view from Babycentre

Below is the conversation from the Babycentre site that ended with the information from Ellie's Mum:

Anyone have any experience with the Conductive Education Center of Orlando? www.cecfl.org
Posted 01/25/2011

Sorry... don't know anything about it. Have you checked with the Clinic to see what they think???
Posted 01/26/2011

I mentioned conductive education at our last clinic appointment and was told if it worked it would be all over. So, I feel like they don't know enough about it or are so set in their ways that they aren't open to it in general, so they wouldn't be open to this place even if it were the greatest thing ever. I have a call into Charlie's PT to see if she has any thoughts.
Posted 01/26/2011

This isn't going to be much help... but in my experience, the medical community isn't too keen on the idea of Conductive Ed. I've gotten some lectures from doctors about how there's not enough research to back it up. But we've been fortunate that our PT is open to it and willing to incorporate what we learn there into what we she does. So anyway, good luck, I hope you find some families who have been there and can tell you more.

Posted 01/26/2011

Howdy!
I am jumping in on your board to comment on this post. Hope that's okay!

We spent four months in Orlando last year so that my daughter, who has CP, could take part in CE classes at CECO (Conductive Education Center of Orlando). I can't say enough good things about the center and about Conductive Ed in general. It's AMAZING!!

I highly suggest that you go to CECO and check it out. Their conductors (therapists) are amazing and what they do for the kids is unbelievable.

Obviously, my daughter doesn't have Spina Bifida, but she has attended CE classes with several kids with SB. The presentations of SB are similar to those of CP. The classroom aspect of Conductive Education is one of its great assets. My daughter, Ellie, really benefited from being in a class with other kids "like her". The conductors are trained to work with kids with both CP and Spina Bifida.

Ellie has been attending CE sessions from the age of 2. It is by far the most effective "therapy" that she's received. Last year, she had spine surgery and needed intense post-op rehab. We decided to go to CECO because they offered us 4 hours/day, 5 days/week of therapy. They worked her HARD! And the results were awesome!

I agree with PP, that it's taking the medical community a long time to understand and accept Conductive Education. However, we have come across several doctors and "traditional" physical therapists who sing the praises of CE.

I write a lot about CECO on Ellie's blog (
www.elliesfootsteps.blogspot.com), from the months of Feb-June, 2010. If I can give you any more help or info, feel free to ask!
Hope that helps! Chrystie (Ellie, 3-15-05)


Thank you, parents

Thanks to busy mums everywhere for taking the time to inform us all, not only about CE but about the reactions that they receive to it from the medical world, as can be read above.

There are several other mums and dads who have taken the time to share their experiences by writing for one of the latest books published by Conductive Press:

"Intelligent Love" by By Jo Graham, Chas McGuigan and Gill Maguire:

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