/Awareness/Novella update/connective tissue

[Guest guest]

Hey all,

** I got the lasted edition of the local magazine a few days ago. I was

so excited to see the updates reference list! If you want to privatley send me a

mailing address and I wil get you a copy. The website to the magazine is

PCWSN.com

Also we received Novellas genetic testing results today and I am happy to say

they were all ''normal''. They tested for Marfan, louis-deets (sp?) and for

chromosome deletion/mutation. They are not sure what the next step is now as her

symptoms were closley related to those syndromes. The genetics doctors are going

to talk it over and come up with a new plan. My husband and I mentioned

EDS--Ehlers Danlos at the initial visit and they did not seem like testing for

that was easy or necessary at that time. But now that we did not have a positive

result I think we should be looking into EDS as there are 6 or more types..i

think? Anyone have experience with EDS and the diagnosing process.

**Novellas hips are stable. Her scoliosis is being re evaluated on april 18th.

She has been in a brace since jan. After 3 months of casting. She has PT and OT

weekly. She has really come along developmentally. Her 1st birthday is a week

away. Our goal was for her to be sitting by then and she is! So proud of her. I

am anxious for her scoli visit in a few weeks.

thanks for everything,

ali, Novellas mama

[Guest guest]

Thanks for the update on Novella. LOVE that name! There are now 6 types of EDS….There used to be 11. Olivia and I were tested by skin biopsy and it took forever. We do not have the vascular type, I think we have type 6. A great resource for info is the EDS Foundation website. They used to have a EDS Physicians Diagnostic DVD which I found to be very helpful for Livs docs and I. If they are no longer offering it, let me know and I’ll burn you a copy. Great news about lil Novella’s hips being stable! One more thing to check off your worry list!Thanks for the update hon. I’de love to see the updated reference list. Please send to my office:C.P. of ColoradoATTN: ISOP/801 Yosemite St.Denver, CO.80230 Let us know how it goes on the 18th! HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of TroySent: Wednesday, March 30, 2011 5:12 PMinfantile scoliosis treatment Subject: /Awareness/Novella update/connective tissue Hey all,** I got the lasted edition of the local magazine a few days ago. I was so excited to see the updates reference list! If you want to privatley send me a mailing address and I wil get you a copy. The website to the magazine is PCWSN.comAlso we received Novellas genetic testing results today and I am happy to say they were all ''normal''. They tested for Marfan, louis-deets (sp?) and for chromosome deletion/mutation. They are not sure what the next step is now as her symptoms were closley related to those syndromes. The genetics doctors are going to talk it over and come up with a new plan. My husband and I mentioned EDS--Ehlers Danlos at the initial visit and they did not seem like testing for that was easy or necessary at that time. But now that we did not have a positive result I think we should be looking into EDS as there are 6 or more types..i think? Anyone have experience with EDS and the diagnosing process.**Novellas hips are stable. Her scoliosis is being re evaluated on april 18th. She has been in a brace since jan. After 3 months of casting. She has PT and OT weekly. She has really come along developmentally. Her 1st birthday is a week away. Our goal was for her to be sitting by then and she is! So proud of her. I am anxious for her scoli visit in a few weeks. thanks for everything,ali, Novellas mama

[Guest guest]

Thanks for the update on Novella. LOVE that name! There are now 6 types of EDS….There used to be 11. Olivia and I were tested by skin biopsy and it took forever. We do not have the vascular type, I think we have type 6. A great resource for info is the EDS Foundation website. They used to have a EDS Physicians Diagnostic DVD which I found to be very helpful for Livs docs and I. If they are no longer offering it, let me know and I’ll burn you a copy. Great news about lil Novella’s hips being stable! One more thing to check off your worry list!Thanks for the update hon. I’de love to see the updated reference list. Please send to my office:C.P. of ColoradoATTN: ISOP/801 Yosemite St.Denver, CO.80230 Let us know how it goes on the 18th! HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of TroySent: Wednesday, March 30, 2011 5:12 PMinfantile scoliosis treatment Subject: /Awareness/Novella update/connective tissue Hey all,** I got the lasted edition of the local magazine a few days ago. I was so excited to see the updates reference list! If you want to privatley send me a mailing address and I wil get you a copy. The website to the magazine is PCWSN.comAlso we received Novellas genetic testing results today and I am happy to say they were all ''normal''. They tested for Marfan, louis-deets (sp?) and for chromosome deletion/mutation. They are not sure what the next step is now as her symptoms were closley related to those syndromes. The genetics doctors are going to talk it over and come up with a new plan. My husband and I mentioned EDS--Ehlers Danlos at the initial visit and they did not seem like testing for that was easy or necessary at that time. But now that we did not have a positive result I think we should be looking into EDS as there are 6 or more types..i think? Anyone have experience with EDS and the diagnosing process.**Novellas hips are stable. Her scoliosis is being re evaluated on april 18th. She has been in a brace since jan. After 3 months of casting. She has PT and OT weekly. She has really come along developmentally. Her 1st birthday is a week away. Our goal was for her to be sitting by then and she is! So proud of her. I am anxious for her scoli visit in a few weeks. thanks for everything,ali, Novellas mama