Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-01-2012, 02:42 PM #1
waters86 waters86 is offline
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Red face 17 year old daughter Gastric Pacemaker

My 17 year old daughter is set to get a gastric pacemaker in Dec 2012 and I'm looking for anyone who has been down this road!
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Old 10-01-2012, 07:43 PM #2
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Welcome to the group. I hope someone can help answer your questions. I have not heard of a gastric pacemaker. What symptoms does she have? What has she tried?
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 10-03-2012, 06:18 PM #3
SandyS SandyS is offline
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Hi Waters86...My daughter has had the gastric pacemaker now for 17 months. She was also 17 when she had it placed. It has been a God send. She has such a great quality of life. Yes, she still has set backs, but she went off to College this year. There is a great side to this. I see that you are only a visitor so I can't private message you with some support groups. I was told not to post them on here. But, I know of many parents with children with the Gastric Pacemaker. If you become a member of the site I can send them to you. I am sorry for not being able to give you the help right now. I think you can private message me and leave me your phone number. I can give you a call over the weekend if you would like? I live in Florida and my daughter had hers place at the Cleveland Clinic in Weston, Florida. They did it laproscopic. Does your daughter also suffer from RSD????? I will check back, one of the other moms on this site, let me know that you posted. She is also on a Facebook site with me. If you have a face book, you can send me your name and I will find you that way. Send it through the private message.

Know that there is hope for your daughter. The surgery is difficult especially with the RSD, but my daughter has put on 35 lbs since the pacemaker. She was barely alive. She ended up with an SMA. Feeding tube and tpn were her staples. Now she eats a totally vegan diet, it works well for her. She is pre-med in college right now. So remember there is a light at the end of this tunnel. It is a long tunnel, but there is a light.

Praying for a quick healing for your daughter, where is she having the pacemaker placed? Which hospital?

Looking forward to hearing from you soon,

Sandy



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Originally Posted by waters86 View Post
My 17 year old daughter is set to get a gastric pacemaker in Dec 2012 and I'm looking for anyone who has been down this road!
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Old 10-10-2012, 05:47 AM #4
betsykk betsykk is offline
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There is a parents group on FB and many of the mothers there talk about the pacemakers.
It is called RSD Parents Yahoo Group. It is private so you will have to ask to join but just mention that you are looking for info on the pacemakers and they will admit you.
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Old 10-19-2012, 07:58 AM #5
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Hi Betsy,
I am one of those mothers, but it seems that Waters hasn't logged on in a while. Hopefully she will find us and get some info.

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Originally Posted by betsykk View Post
There is a parents group on FB and many of the mothers there talk about the pacemakers.
It is called RSD Parents Yahoo Group. It is private so you will have to ask to join but just mention that you are looking for info on the pacemakers and they will admit you.
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