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Sister of 31 year old with MWS

 
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Kellys sister



Joined: 23 Dec 2005
Posts: 7

PostPosted: Fri Dec 23, 2005 6:07 pm    Post subject: Sister of 31 year old with MWS Reply with quote

Hello Smile
Our sister, Kelly, has MWS. She is now 31 and was recently diagnosed about 2 years ago. She is the most loving person on earth and has filled our lives with more joy than we could ever imagine.

The past 2 years have been difficult because she has started throwing up and gagging. There is so little information on MWS and doctors have been unsuccessful in figuring out why she is gagging and throwing up on a daily basis. It's very scarey for us especially since we are having a difficult time finding people with MWS over the age of 20. I have found a few but I'm wondering if it's because their parents are older, have lived with this unknown syndrome for years and maybe are not web saavy.

I'm hoping someone has a similar experience with an MWS adult throwing up.

If anyone needs to talk, has questions for someone with a loved one who is an adult with MWS and wants to know what to expect or has any information that may help us as well with this new development, please feel free to email me at jami722@yahoo.com.

One thing to expect is that your loved one will change your life for the better. These kids (and adults) are filled with more joy and love than most people. They are loving, happy angels and Kelly has made me a better person. I'm so lucky to have her as a sister and wouldn't want her any other way. I just hope she is okay, I hope we can figure out what is causing this severe gagging and throwing up. I'm so scared for her and wish we could find a good doctor who is willing to work hard to help find the cause and treatment.

~Jami
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PostPosted: Sat Dec 24, 2005 7:09 am    Post subject: Reply with quote

Hi Jami
My daughter, Lauren is now 15 w/MW and the most loving child in the world. She had quite a few gagging, choking, episodes and the Dr. gave her Prevacid for reflux. Seemed to work for a long time, then returned. Took her in for a endoscopy, they knock you out and put a tube/camers down your throat to look around. They discovered that she was eating little bits of paper and it had accumulated so they cleaned her all out. She now takes Prevacid 2x per day and still has an occasional episode but very rare. I know how awful these episodes can be. Ask you Dr. about possible reflux??
Nice to meet you maybe someday you can communicate with Lauren's sister Melissa she is 19 and her brother is 23, Chris.
Gotta go get Lauren!!! Have a blessed holiday!!
Joan, NY........Lauren 15
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Deby



Joined: 07 Dec 2005
Posts: 5

PostPosted: Sat Dec 24, 2005 10:03 am    Post subject: Reply with quote

Dear Jami,
Was your sister ever tested and treated for Hirschsprungs Disease? And if so, have they checked for scaring from the surgery, which can cause a blockage later on in life.
Deby
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Kellys sister



Joined: 23 Dec 2005
Posts: 7

PostPosted: Tue Dec 27, 2005 7:32 am    Post subject: re Reply with quote

Hi Joan and Deby,
Thank you both for your replies!

Joan, I will ask my mom about that, thanks so much for the information and the Prevacid rec! I would love to talk to your kids and they can email me anytime if they have questions, concerns, etc. We have a younger sister, Caitlin who is 23 as well. Smile

Deby, my mom says Kelly doesn't have Hirschsprungs Disease but I will ask her if she was ever officially tested for that. That's interesting about the blockage, thank you!

~Jami
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