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Author Topic: My daughter's long battle with seizures  (Read 6442 times)
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Allen Carter
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« on: December 04, 2011, 10:25 AM »

Some of you have met my daughter Caitlin, many of you have heard me talk about her over the years. She has a rare affliction called Rett Syndrome. Among the many challenges and disabilities this has put in her path over her life, seizures have been by far the most dangerous.

For years she has avereged 5 seizures a week. We learned how to cope long ago, and other than injuries from falls, there was never any noticeable damage from the seizures.

This changed suddenly two weeks ago. Caity started to have one small seizure after another and the normal meds (even in high doses in the ER) did nothing. She went on life support so they could use stronger sedatives to get her seizing brain to settle down. It hasnt worked. She was transferred to Stanford which is one of the best places for Neuro ICU and has been in an induced coma for several days. Each time they have raised her up out of sedation the seizures have come back.

The doctors have determined that her brain is too damaged to recover  If there is no improvent tomorrow we'll remove her from life support and let her fly in a place with smoother winds.

I do believe in "medical miracles". There is just so much even the top neurologists dont know about the brain. Tomorrow morning, after a final deep, deep 72 hour coma, there is a chance that her brain will have started to heal.

Caitlin is an amazing person and has lived with and overcome more adversity than anyone I know. If miracles are out there, she'll snag one.
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Allen, AKA kitehead
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« Reply #1 on: December 04, 2011, 10:39 AM »

Allen,

Our prayers are with you and Caitlin
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DD
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« Reply #2 on: December 04, 2011, 10:39 AM »

Keeping you in our thoughts and prayers
Smooth winds
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Sine Metu!
mikenchico
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« Reply #3 on: December 04, 2011, 10:50 AM »

Allen our thoughts and prayers will be with you and your family. We are so touched hearing your news and thankfull that you have choosen to share it with us all here so we can send our energy your way. We wish you and your family strength through these times and if there is anything further we can do please let us know. My Google voice number is linked at the website icon under my avatar.

Mike Hagen & Rhonda Davidson

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« Reply #4 on: December 04, 2011, 11:00 AM »

Prayers sent.
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John Chilese: Las Vegas, NV
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« Reply #5 on: December 04, 2011, 11:05 AM »

Allen,

My thoughts and prayers are with you and Caitlin.
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-Devin Cobleigh-Morrison
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« Reply #6 on: December 04, 2011, 11:07 AM »

My thoughts are with you ....
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« Reply #7 on: December 04, 2011, 11:14 AM »

My strongest wishes for the best for your daughter, Allen. I can't even imagine how hard this must be for you & your family.
~Rob.
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« Reply #8 on: December 04, 2011, 11:31 AM »

I sit here wishing I knew the right words to send your way...

Please know that you and Caitlin are in my thoughts, that I send you both cyber hugs, and truly wish there was more I could do.

"My thought is to go outside and think of the biggest hug and send it on its way to you on the wings of the breeze. So when in need, hopefully, you'll go outside, feel the breeze, and it will surround you in hugs from all directions...my hugs are on the way!"
~ Unknown author
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« Reply #9 on: December 04, 2011, 11:41 AM »

Allen, from my small island in the Indian Ocean, all my prayers and thoughts fly to you and Caitlin.
I wish you and the family all the strength needed to overcome all this.

With Love

Bryan
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« Reply #10 on: December 04, 2011, 11:44 AM »

The best thoughts possible are with you both Allen!
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« Reply #11 on: December 04, 2011, 11:47 AM »

Be strong my friend, positive thoughts coming your way.
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« Reply #12 on: December 04, 2011, 11:50 AM »

My heart goes out to you Allen. I'm not sure I could endure all you've been through lately. I wish the best for you both.

Denny
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« Reply #13 on: December 04, 2011, 01:59 PM »

prayer sent.
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Fdeli
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« Reply #14 on: December 04, 2011, 02:46 PM »

You and yours will be in tracey and my thoughts and prayer  Allen
Kurt
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have fun kurt
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