Comments for Living (Well!) With Gastroparesis http://livingwithgastroparesis.com By Crystal Saltrelli - GP Patient, Advocate & Health Coach Fri, 03 Sep 2010 18:14:21 +0000 http://wordpress.org/?v=2.9.2 hourly 1 Comment on Gastroparesis on the Today Show by Tim Moore http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1508 Tim Moore Fri, 03 Sep 2010 18:14:21 +0000 http://livingwithgastroparesis.com/?p=955#comment-1508 Thank you much - my daughter's missed almost 6 months of school and i'm afraid she'll lose what was true zest for life before this all occurred! she was active in soccer, horseback riding, playing violin, distance running and basketball.. i can't wait to get her back to her old self! Thanks for the help! Diana and Tim Moore Thank you much – my daughter’s missed almost 6 months of school and i’m afraid she’ll lose what was true zest for life before this all occurred! she was active in soccer, horseback riding, playing violin, distance running and basketball.. i can’t wait to get her back to her old self! Thanks for the help!

Diana and Tim Moore

]]> Comment on Gastroparesis on the Today Show by Crystal http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1501 Crystal Fri, 03 Sep 2010 14:30:12 +0000 http://livingwithgastroparesis.com/?p=955#comment-1501 Hi, Diana and Tim. So sorry to hear what Allison is going through. I think it's important to continue seeking out specialists until someone takes you seriously and gives Allison the attention she deserves. You can find a list of pediatric motility specialists at the end of this document: <a href="http://www.articles.complexchild.com/00028.pdf" rel="nofollow">http://www.articles.complexchild.com/00028.pdf </a> I will pass your story and contact info along to Gentrie and her family. Hi, Diana and Tim. So sorry to hear what Allison is going through. I think it’s important to continue seeking out specialists until someone takes you seriously and gives Allison the attention she deserves. You can find a list of pediatric motility specialists at the end of this document: http://www.articles.complexchild.com/00028.pdf

I will pass your story and contact info along to Gentrie and her family.

]]> Comment on Gastroparesis on the Today Show by Karen http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1500 Karen Fri, 03 Sep 2010 14:28:05 +0000 http://livingwithgastroparesis.com/?p=955#comment-1500 My biggest issue was with Dr. Snyderman's explanation. I know it's difficult to fit a lot of information into their very limited time slot - but to just make an off-the-cuff remark that her "rare" condition was "probably" caused by a virus, without any explanation is irresponsible. Truthfully, they'll probably never know the origin of Gentrie's gastroparesis, which is true for a lot of people with GP. It's a shame thatGP and its treatments were skimmed over so much. I hope that Gentrie continues to do well. As you said, though, any publicity is good pubilicity. So few people have even heard of GP, so anything that promotes awareness on some level is a good thing. My biggest issue was with Dr. Snyderman’s explanation. I know it’s difficult to fit a lot of information into their very limited time slot – but to just make an off-the-cuff remark that her “rare” condition was “probably” caused by a virus, without any explanation is irresponsible. Truthfully, they’ll probably never know the origin of Gentrie’s gastroparesis, which is true for a lot of people with GP. It’s a shame thatGP and its treatments were skimmed over so much. I hope that Gentrie continues to do well.

As you said, though, any publicity is good pubilicity. So few people have even heard of GP, so anything that promotes awareness on some level is a good thing.

]]> Comment on Gastroparesis on the Today Show by Tim Moore http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1499 Tim Moore Fri, 03 Sep 2010 14:21:01 +0000 http://livingwithgastroparesis.com/?p=955#comment-1499 I have a daughter, Allison, who is ten years old and began exhibiting the very same symptoms as Gentrie did in January of this year after a septoplasty surgery in December of 2009. We've taken my daughter to Children's Mercy Hospital in KC, MO and Children's hospital of Wisconsin and they've both come to the same conclusion that this is a psychological issue and just want to treat her for chronic pain and basically tell her to 'learan to live with it' while my wife and I know better that they bloating, delayed stomach emptying isn't something she can willfully cause herself. How can we get in contact with Gentrie's family to compare our stories potentially? thanks Diana and Tim Moore Kansas City, MO I have a daughter, Allison, who is ten years old and began exhibiting the very same symptoms as Gentrie did in January of this year after a septoplasty surgery in December of 2009. We’ve taken my daughter to Children’s Mercy Hospital in KC, MO and Children’s hospital of Wisconsin and they’ve both come to the same conclusion that this is a psychological issue and just want to treat her for chronic pain and basically tell her to ‘learan to live with it’ while my wife and I know better that they bloating, delayed stomach emptying isn’t something she can willfully cause herself. How can we get in contact with Gentrie’s family to compare our stories potentially?

thanks
Diana and Tim Moore
Kansas City, MO

]]> Comment on Gastroparesis on the Today Show by Kim http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1497 Kim Fri, 03 Sep 2010 12:41:16 +0000 http://livingwithgastroparesis.com/?p=955#comment-1497 Hi, I sent my comments to Dr Snyderman at http://today.msnbc.msn.com/id/21839940/. Kim Hi,
I sent my comments to Dr Snyderman at http://today.msnbc.msn.com/id/21839940/.

Kim

]]> Comment on Gastroparesis on the Today Show by Crystal http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1495 Crystal Fri, 03 Sep 2010 09:44:44 +0000 http://livingwithgastroparesis.com/?p=955#comment-1495 Gabriel, that's definitely one of the issues I had with Dr. Snyderman's explanation. She made it sound like a virus was the only known, or at least the most likely, cause of gastroparesis. As we know, post-viral gastroparesis actually makes up a relatively small percentage of the diagnoses. Hope you're doing well! Gabriel, that’s definitely one of the issues I had with Dr. Snyderman’s explanation. She made it sound like a virus was the only known, or at least the most likely, cause of gastroparesis. As we know, post-viral gastroparesis actually makes up a relatively small percentage of the diagnoses.

Hope you’re doing well!

]]> Comment on Gastroparesis on the Today Show by Gabriel http://livingwithgastroparesis.com/gastroparesis-on-the-today-show/comment-page-1/#comment-1489 Gabriel Fri, 03 Sep 2010 06:12:25 +0000 http://livingwithgastroparesis.com/?p=955#comment-1489 Gentrie did great, it'd be hard not to root for her and she has a great smile. I probably would have freaked out being on live national TV ;). I do agree that it seemed that they skimmed over some stuff. Besides what you noted, I also would have liked if they included more info on causes. They did mention viral infection, but did not go into detail that a simple stomach virus can cause problems & that there isn't a specific 'gastroparesis virus'. Also mentioning diabetic/non diabetic neuropathy, surgical operations or trauma & eating disorders as possible causes would have been good as well. Overall though, I am just happy it got some national attention :). Gentrie did great, it’d be hard not to root for her and she has a great smile. I probably would have freaked out being on live national TV ;) . I do agree that it seemed that they skimmed over some stuff. Besides what you noted, I also would have liked if they included more info on causes. They did mention viral infection, but did not go into detail that a simple stomach virus can cause problems & that there isn’t a specific ‘gastroparesis virus’. Also mentioning diabetic/non diabetic neuropathy, surgical operations or trauma & eating disorders as possible causes would have been good as well.

Overall though, I am just happy it got some national attention :) .

]]> Comment on Gastric Pacemaker: 2 Weeks Post Surgery by Crystal http://livingwithgastroparesis.com/update-gastric-pacemaker/comment-page-1/#comment-1254 Crystal Mon, 23 Aug 2010 19:23:39 +0000 http://gpadvocate.wordpress.com/?p=80#comment-1254 Hi, Renee. So sorry to hear about Dalton's situation. As hard as is it to deal with this condition as an adult, I can't imagine how hard it is for kids and teens. Why don't you send me an email or contact me via the web form to set up a time to talk about your options with insurance and what else you might be able to do for him. Hi, Renee. So sorry to hear about Dalton’s situation. As hard as is it to deal with this condition as an adult, I can’t imagine how hard it is for kids and teens. Why don’t you send me an email or contact me via the web form to set up a time to talk about your options with insurance and what else you might be able to do for him.

]]> Comment on Calling All Peanut Butter Lovers! by Crystal http://livingwithgastroparesis.com/review-pb2-peanut-butter/comment-page-1/#comment-1253 Crystal Mon, 23 Aug 2010 19:21:00 +0000 http://livingwithgastroparesis.com/?p=885#comment-1253 Hi, Gerry. Dietary tolerances vary greatly from person to person. Sounds like the noodles you're eating are GP-friendly, since they're low-fat and low-fiber. If they're not exacerbating you're symptoms, I don't see why it'd be a problem. Hope that helps! Hi, Gerry. Dietary tolerances vary greatly from person to person. Sounds like the noodles you’re eating are GP-friendly, since they’re low-fat and low-fiber. If they’re not exacerbating you’re symptoms, I don’t see why it’d be a problem. Hope that helps!

]]> Comment on Quick Stat: Prevalence by Awareness: What It Means To Me | Living (Well!) With Gastroparesis http://livingwithgastroparesis.com/quick-stat-prevalence/comment-page-1/#comment-1245 Awareness: What It Means To Me | Living (Well!) With Gastroparesis Mon, 23 Aug 2010 13:46:51 +0000 http://gpadvocate.wordpress.com/?p=253#comment-1245 [...] that.  Public knowledge is sorely lacking.  Especially when you consider that there are at least three times as many people with gastroparesis as with Celiac disease, a condition with a significantly higher [...] [...] that.  Public knowledge is sorely lacking.  Especially when you consider that there are at least three times as many people with gastroparesis as with Celiac disease, a condition with a significantly higher [...]

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