DownSyn Forum

Gracies mom · Posted: May 21 2011, 4:33 PM Post subject: Tethered cord syndrome

Hi there, my little Grace who is nearly 6mths old has just been diagnosed with Tethered Cord Syndrome ? and we have been advised that she needs surgery! which is scheduded for June.
Ive never heard of it and have done some research on the internet but was wondering if anyone on here had any experience of it ?? Thanks

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

lespring · Posted: May 26 2011, 1:35 PM Post subject:

There are a couple families here who's kids have had it. One of them is Kris10oz . She doesn't post here anymore but I'll go get her and ask her to come respond!

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~Leah~

My mom's blog
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And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Gracies mom · Posted: May 26 2011, 4:36 PM Post subject:

Thank you that would be great Smile

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

Annieo · Posted: May 26 2011, 7:10 PM Post subject:

I already bugged Kristen. I think she said she was out of town with a limited internet connection. I'm sure she'll make it here eventually.

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Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

Emdad · Posted: May 27 2011, 9:52 AM Post subject:

Just popping in to say what a cutie-pie you've got there.
Very Happy

Gracies mom · Posted: May 27 2011, 5:37 PM Post subject:

Thank you

I think so too....... Don't know what I ever did without her Smile

Hope she grows up to be as beautiful as your young lady Smile

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

Googsmom · Posted: May 28 2011, 8:15 PM Post subject:

Cute, cute, cute!!!

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Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

Gracies mom · Posted: May 31 2011, 4:33 PM Post subject:

Thanks Jennifer, Your daughter is adorable Smile

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

Teafreak · Posted: May 31 2011, 9:13 PM Post subject:

Welcome, Cheryl! Grace is just adorable! When my daughter was born they believed she had a tethered spinal chord and at 4 months old she had the surgery to detach it. As it turns out, she actually just had fatty tissue at the end of her spinal chord that made it look as if her chord was tethered on the MRI.

She recuperated quickly from the surgery. She was in the hospital for 6 days and then home. The difficult part is trying to keep the surgery sight clean since it's down inside the diaper. :-/ It's amazing how quickly babies recuperate from a major surgery and I'll bet your Gracie will come through with flying colors.

God bless,
Deane

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Deane, wife to Matt and Mom to Kate-the-Great (9 years old)

"A person's a person no matter how small." - Horton

kris10z · Posted: June 06 2011, 11:15 AM Post subject:

I'm here! I'm here! FINALLY! Smile

Yes, my Ethan had TSC and it was released 2 1/2 years ago. You are very lucky that you have found it this early! We went 7 years not knowing! Shocked

We had an amazing neurosurgeon and Ethan recovered remarkably well! The picture in my profile was taken just a month post-op! It is one of the first pictures I have of him walking independently after surgery! It's an amazing thing...

I'm available to chat anytime you need! faulknerkd@gmail.com

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Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
Taking the Step to a Healthier Self with Juice Plus+
www.fillthegap-juiceplus.com

Gracies mom · Posted: June 19 2011, 5:26 PM Post subject:

Thanks for the reply ladies, Grace goes into hospital this Tuesday and I'm so not looking forwards to it!! Op scheduled for Wednesday then hopefully home the following monday.
They diagnosed it so early because they were looking for other possible abnormalities because of her current condition , oesophageal atresia. The poor little mite has been through so much surgery already I really don't want to put her through any more!! But I know it has to be done...... Is it very painful afterwards ? And will she have to lie still or anything?
Sorry for the delay in replying.... I thought I already had replied but obviously didn't actually send the message !!

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06