Guest guest Posted February 21, 2012 Report Share Posted February 21, 2012 My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. Any suggestions would be greatly appreciated! Maureen in Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 Do all you can now to preserve her esophagus. If we go untreated the esophagus can stretch and enlarge, much like pantyhose. Only it does not pop back. It can get so enlarged it can droop and even twist. That is when most procedures don't work and removal is the best option. For many, the more severe the symptoms, like regurging, the less your esophagus may have stretched. If it is stretched, it can hold a lot of food and you may not regurg as much. The more normally shaped and straighter the esophagus, the more likely it is to have success with treatment, whether it is a dialation or surgery. We need gravity to move food down even if we are treated. If there is a loop or twist the food just never goes down. Your daughter may not tell you all the details, but not being able to eat with friends and having food issues at that age is almost worse than just the physical parts of having achalasia. We start isolating ourselves and avoiding social situations. Depression often develops. Good luck Sandy > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > Any suggestions would be greatly appreciated! > > Maureen in Wisconsin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2012 Report Share Posted February 22, 2012 Maureen,  Did you go to a doctor who is experienced in Achalasia! What hospital are you going to in Chicago? They have a few of the best hospitals in the U.S. for treatment of Achalasia. I live in Kenosha and go to Froedert in Milwaukee and that is a fantastic hospital. I had my first dilation at Aurora Medical in Kenosha, went badly then they referred me to Froedert in Milwaukee. By the time I was diagnosed I had lost 35 pounds and now it is better. Not perfect but better. Dr Massey who runs their dysphasia clinic supposedly wrote the book on it.  Kim A ________________________________ From: Maureen <mmyoung5758@...> achalasia Sent: Tuesday, February 21, 2012 7:32 PM Subject: Dilations-15 y/o  My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. Any suggestions would be greatly appreciated! Maureen in Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? Thanks for listening, Sue > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > Any suggestions would be greatly appreciated! > > Maureen in Wisconsin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 A 15mm dilation is nothing, unless your daughter is extremely petite, like kindergartener-sized petite. I only found relief from my second dilation, which was done using a 40mm balloon and held over time (not just inflate/deflate, but rather inflate/hold/deflate). While a 40mm balloon might be too large for your daughter, I think that a 15mm is too small to the point of being a complete waste of everyone's time and money. Look at 15mm on a ruler... it's not much wider than a single blueberry. Since you're already in FL, I recommend contacting Dr. Boyce: http://hsc.usf.edu/medicine/internalmedicine/swallowing/fac_boyce.html Debbi in Michigan > > My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. > > We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. > > I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. > > Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? > > Thanks for listening, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Sue  I live in Orange Park Florida and I have been going to Mayo clinic. My GI is Mmihir K. Patel and my surgeon is Bowers. I have gone to doctors in Orange Park but they only deal with Orange Park hospital and I did not want to have my surgery at Orange Park hospital. I did research in google and searched for hospitals in ville that deal with A. I found good remarks. I know several friends and family who go to Mayo and are pleased.  Their bed side manor is great and that is good for children. I have four all grown now. Mayo deals with over 200 patients a year who have A. You may have to do some of the test over again, but they are good. Good luck. Have your daughter try Esure they are good and fill you up.  Suzanne From: strombergrn2000 <strombergrn2000@...> Subject: Re: Dilations-15 y/o achalasia Date: Wednesday, April 11, 2012, 11:40 AM  My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? Thanks for listening, Sue > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > Any suggestions would be greatly appreciated! > > Maureen in Wisconsin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Thanks Debbie.  When I read the report and saw he only dialated to 15, I was a bit disappointed.  I haven't been able to read through alot of the posts, but I saw that 30 looked like the standard.  And no, she is not tiny, taller than me, 5'7 " 150lbs.  I looked at Dr Boyce's site and I think someone else is supposed to send me a name of a doctor that moved to Florida, so if its someone different, I'll check him out too...  My in laws live in Tampa, so that is helpful. Thanks for the response, next time I'll ask about holding the dilation.  I'm sure soon I'll be an expert, but right now I'm overwhelmed. I'm looking for how to keep her food down (soda, tea, lots of water, I even saw beer, I would give her if that helped!) Thanks, Sue ________________________________ From: bigbrillohead <imahockeymom@...> achalasia Sent: Wednesday, April 11, 2012 12:27 PM Subject: Re: Dilations-15 y/o  A 15mm dilation is nothing, unless your daughter is extremely petite, like kindergartener-sized petite. I only found relief from my second dilation, which was done using a 40mm balloon and held over time (not just inflate/deflate, but rather inflate/hold/deflate). While a 40mm balloon might be too large for your daughter, I think that a 15mm is too small to the point of being a complete waste of everyone's time and money. Look at 15mm on a ruler... it's not much wider than a single blueberry. Since you're already in FL, I recommend contacting Dr. Boyce: http://hsc.usf.edu/medicine/internalmedicine/swallowing/fac_boyce.html Debbi in Michigan > > My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. > > We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. > > I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. > > Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? > > Thanks for listening, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Thanks Suzanne...  I'm trying to be patient and going to try to research the doctors.  I do think highly of Mayo but also my in laws live in Tampa and a doctor at USF was recommended by the group, so I need to see who my insurance would accept and who I think would be a good fit and if I would have to redo the tests.  Thanks, Sue ________________________________ From: Suzanne Lee <suzannel130@...> achalasia Sent: Wednesday, April 11, 2012 1:11 PM Subject: Re: Re: Dilations-15 y/o  Sue  I live in Orange Park Florida and I have been going to Mayo clinic. My GI is Mmihir K. Patel and my surgeon is Bowers. I have gone to doctors in Orange Park but they only deal with Orange Park hospital and I did not want to have my surgery at Orange Park hospital. I did research in google and searched for hospitals in ville that deal with A. I found good remarks. I know several friends and family who go to Mayo and are pleased.  Their bed side manor is great and that is good for children. I have four all grown now. Mayo deals with over 200 patients a year who have A. You may have to do some of the test over again, but they are good. Good luck. Have your daughter try Esure they are good and fill you up.  Suzanne From: strombergrn2000 <strombergrn2000@...> Subject: Re: Dilations-15 y/o achalasia Date: Wednesday, April 11, 2012, 11:40 AM  My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? Thanks for listening, Sue > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > Any suggestions would be greatly appreciated! > > Maureen in Wisconsin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Anytime. When your daughter has problem swalloning have her gulp down a eight ounce glass of water. This works for me. She may feel like everything has stopped, but about a second or two she will feel he throat open up. Then she can finish her meal, but do not eat too much or it wlll come up. Fish and chicken go down easier. How is she sleeping at night? Does she wake up choking, coughing for regeriating? Isf, so have her sleep on her back with serveral pillows. I use three. Have her sleep at a 45% angle. From: strombergrn2000 <strombergrn2000@...> Subject: Re: Dilations-15 y/o achalasia Date: Wednesday, April 11, 2012, 11:40 AM  My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? Thanks for listening, Sue > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > Any suggestions would be greatly appreciated! > > Maureen in Wisconsin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Dang, Debbi, you guys have big blueberries in Michigan! I think the reason they do the 15mm dilation is so their probe can get through the LES, since they're wanting to take pictures of the tummy & duodenum. And they keep thinking it *might* help. And it would help *some* if it would last, but it doesn't do enough damage *to* last. But my opening was about 4mm, so I was REAL happy for the three days it did last. I might even have been able to live with that. But it *isn't* going to last. Evah. By the time I got to the manometry, a 5mm probe couldn't get through, so they used that as an excuse to say they couldn't really *diagnose* Achalasia, cause they couldn't get a reading on the LES pressure! Dorks. And it took them two weeks to *read* the test. And two more to make an appt to tell me they didn't know what to do, and pass me up to UVA. But it took two more weeks, plus to even *make* that appointment. And before they did, I finally contacted the surgeon directly (by mistake, but that's another story), and had a surgery date. Sue -- it's new. And it is shocking. Take a BIG breath, sigh, pray, and realize how damn lucky you are. Achalasia is a pain in the butt, without doubt. And for some of us horribly painful for a long long time. But it IS NOT going to kill us. My brother who lost his seven year old daughter to head trauma when she was thrown from an ATV, would have given a lot of years of his life to have had it be Achalasia instead. . . . I have friends whose daughter just turned five. Four of those five she's been treated for cancer. And were told when she was three not to plan for a fifth birthday. It's simply going to take TIME to sort it out. For all of you. Human beings are wonderfully adaptable if they choose to be -- wonderful posting on here about using paper cups in a big purse. . . . achalasia/message/63636 And someone else with a big supply of doggie doo bags (which can be quite cute). achalasia/message/63583 And BTW, it's NOT barfing, or vomiting, or throwing up: it's regurgitating. Fondly called " regurging " and since it's never gotten as far as one's stomach, is easier on tooth enamel than her friends who are bulimics vomiting is one theirs. Nutrition is vital right now! Calories for energy and protein for body maintenance. Vitamins and minerals -- a *really* good multi is vital. You simply and absolutely need to get her on a puree diet at home (which really isn't that grim). You *really* don't want her hair to be falling out, eh? For public/friends: Chocolate is very good, and helps open the LES. So does Mountain Dew (plus lots of sugar/calories). Ice cream. Now is NOT the time to worry about sugar. And, interestingly, the need/want/desire goes away when you can eat normally again. Do a LOT of reading in the archives of this board, especially Notan's posts. Have HER do it, too: knowledge is very empowering, and right now she's feeling even more helpless than you are. Letting a few of her best friends in on the " secret " should help -- let them become her co-conspirators. . . . A secret sorority. Love and luck! We're all pulling for ya'll. , WV > > > > My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. > > > > We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. > > > > I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. > > > > Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? > > > > Thanks for listening, Sue > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Dr. Richter, from Temple University Hospital, highly regarded gastroenterologist, is the doctor who moved to Florida. Somewhat arrogant, but nonetheless brilliant. Bring a written list of questions with you. Perhaps he is kinder to children. Here is a recent link.  http://hscweb3.hsc.usf.edu/health/now/?p=22543  ________________________________ From: Sue Stromberg <strombergrn2000@...> " achalasia " <achalasia > Sent: Wednesday, April 11, 2012 1:17 PM Subject: Re: Re: Dilations-15 y/o  Thanks Debbie.  When I read the report and saw he only dialated to 15, I was a bit disappointed.  I haven't been able to read through alot of the posts, but I saw that 30 looked like the standard.  And no, she is not tiny, taller than me, 5'7 " 150lbs.  I looked at Dr Boyce's site and I think someone else is supposed to send me a name of a doctor that moved to Florida, so if its someone different, I'll check him out too...  My in laws live in Tampa, so that is helpful. Thanks for the response, next time I'll ask about holding the dilation.  I'm sure soon I'll be an expert, but right now I'm overwhelmed. I'm looking for how to keep her food down (soda, tea, lots of water, I even saw beer, I would give her if that helped!) Thanks, Sue ________________________________ From: bigbrillohead <imahockeymom@...> achalasia Sent: Wednesday, April 11, 2012 12:27 PM Subject: Re: Dilations-15 y/o  A 15mm dilation is nothing, unless your daughter is extremely petite, like kindergartener-sized petite. I only found relief from my second dilation, which was done using a 40mm balloon and held over time (not just inflate/deflate, but rather inflate/hold/deflate). While a 40mm balloon might be too large for your daughter, I think that a 15mm is too small to the point of being a complete waste of everyone's time and money. Look at 15mm on a ruler... it's not much wider than a single blueberry. Since you're already in FL, I recommend contacting Dr. Boyce: http://hsc.usf.edu/medicine/internalmedicine/swallowing/fac_boyce.html Debbi in Michigan > > My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. > > We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. > > I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. > > Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? > > Thanks for listening, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 Yes Sue...this is the doc I was talking to you about..I may go down there too... From: RICHARD FRIEDMAN <cynmark24@...> Subject: Re: Re: Dilations-15 y/o " achalasia " <achalasia > Date: Wednesday, April 11, 2012, 1:01 PM  Dr. Richter, from Temple University Hospital, highly regarded gastroenterologist, is the doctor who moved to Florida. Somewhat arrogant, but nonetheless brilliant. Bring a written list of questions with you. Perhaps he is kinder to children. Here is a recent link.  http://hscweb3.hsc.usf.edu/health/now/?p=22543  ________________________________ From: Sue Stromberg <strombergrn2000@...> " achalasia " <achalasia > Sent: Wednesday, April 11, 2012 1:17 PM Subject: Re: Re: Dilations-15 y/o  Thanks Debbie.  When I read the report and saw he only dialated to 15, I was a bit disappointed.  I haven't been able to read through alot of the posts, but I saw that 30 looked like the standard.  And no, she is not tiny, taller than me, 5'7 " 150lbs.  I looked at Dr Boyce's site and I think someone else is supposed to send me a name of a doctor that moved to Florida, so if its someone different, I'll check him out too...  My in laws live in Tampa, so that is helpful. Thanks for the response, next time I'll ask about holding the dilation.  I'm sure soon I'll be an expert, but right now I'm overwhelmed. I'm looking for how to keep her food down (soda, tea, lots of water, I even saw beer, I would give her if that helped!) Thanks, Sue ________________________________ From: bigbrillohead <imahockeymom@...> achalasia Sent: Wednesday, April 11, 2012 12:27 PM Subject: Re: Dilations-15 y/o  A 15mm dilation is nothing, unless your daughter is extremely petite, like kindergartener-sized petite. I only found relief from my second dilation, which was done using a 40mm balloon and held over time (not just inflate/deflate, but rather inflate/hold/deflate). While a 40mm balloon might be too large for your daughter, I think that a 15mm is too small to the point of being a complete waste of everyone's time and money. Look at 15mm on a ruler... it's not much wider than a single blueberry. Since you're already in FL, I recommend contacting Dr. Boyce: http://hsc.usf.edu/medicine/internalmedicine/swallowing/fac_boyce.html Debbi in Michigan > > My daughter is 14yrs and just got diagnosed 3 weeks ago. She's had strange vomiting since Valentines day, sometimes after every meal, sometimes never... We've had 2 upper GIs and endoscopy with balloon to 15mm yesterday and scheduled for the manometry next week, so still in the beginning and diagnostic phases. She was on a liquid diet for a week and starving. She spit up some after the endoscopy yesterday, so now completely devastated. > > We are still in the crying, disbelieving, fear, devastating, depression already, doesn't want to go to school type phase. > > I'm replying to you because I want to make the right decisions for her and need to find the best way for her to gain acceptance of this and to move forward. We are in ville FL and treated with Nemours Children's Clinic, although I think I may try to go to Mayo clinic here if they will take her, or I will go to Tampa or Atlanta or anywhere really if I can help her. > > Although she probably wouldn't want to go, are there any summer camps for children with rare diseases or GI diseases? > > Thanks for listening, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2012 Report Share Posted April 11, 2012 If both Richter and Boyce are " equal options " with your insurance provider, my personal choice for a young girl would be Dr. Boyce. Both are highly knowledgeable about achalasia and educated about and experienced with treatments, but Dr. Boyce is much " gentler " to deal with, IMO. Richter can be intimidating to talk with, and I feel that Boyce would be a better listener. I think either/both would give excellent care, so go with whatever works for your insurance company, but I think Boyce would give a better experience, particularly for a young girl. Having met both men in person, I would choose Boyce for my child if given the option. I've also heard several good experiences with Dr. Rosemurgy from others here in the group, but I've never met him myself so I don't feel qualified to offer an opinion. Off Topic: I don't check in with the group all that often, and hadn't realized that Richter had moved again. This is his third location since I joined this group -- he keeps moving farther south each time, maybe he didn't like our cold winters up here in the frozen midwestern tundra? LOL) Debbi in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Dear Sue and Maureen. It is devastating when you discover your child has a rare disorder.. all of a sudden life is upside down and help is hard to find. The incidence of Achalasia is growing, but children are still a rarity. The greatest care and research is needed. In the messages area, you can type any keyword you can think of and read the many many messages from lots of us parents. These include the successes as well as the disappointments. Like you, my son was diagnosed at 14! On his 14th birthday! This launched me into an exploratory quest for the best answers to his situation. It resulted in a very carefully planned search for the best of the best! I figured my kid deserves the best and that is what he was gonna get, no matter what. If it hadn't been for this board, especially with Sandi, Notan, Maggie and some of the others, I never would have made it through. Now I subscribe as a student to every medical paper I can find. I keep up with the latest med. advances so I can pay it forward to anyone who needs information. I have walked a mile in your shoes.. My son, now 21, was seen by Dr. Patti, who now head the esophageal research center at U of Chicago. If you need help finding a specialist for your kids... I will be happy to help you. Use keywords like " pediatric " or Florida or my email..wooleeacre.. this will bring up those messages. you can also combine keywords, just separate by a comma. Choose carefully.. Study intently, above all be an advocate for the quality of life and care your child deserves. Carolyn Holmes mom of Cameron myo'd and fundo'd in 05 > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > Any suggestions would be greatly appreciated! > > > > Maureen in Wisconsin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Last night, when I could not sleep, I was counting my blessings instead of sheep (yes its a lullaby but I have a baby also that I have to sing to). So I wanted to make sure that you all knew that you were my blessings. Suggestions for me, as well as good wishes to all undergoing tests or surgery has lifted my spirits.  My daughter Sara is 14, I have 2 teenagers and 2 toddlers and work full time, so I have no free time. This weekend, I'll try to do the searches on the site with the keywords you suggested and will probably get alot answers... I'm also going to call the insurance company and see which physicians I can see and also call their offices....   Here are my questions... my daughter is scheduled next week for a manometry... however, if I do go to Tampa to see one of those docs (which I will), will they want to repeat the test or will they just accept the results from my doctor here? I think I can call their office but need to see if any of you have had recent contact with their office, who the best contact person is (the office mgr, nurse, etc?) I have to get the biopsies back, but the GI doctor was pretty sure from the upper GIs and endoscopy where she had no peristalic waves, that its achalasia and that she will need surgery.  Also, I've been brainstorming ideas about food... are there any good books or websites that help with this... our society and my family is so focused on food for all occasions... is there a way to make food and eating secondary?  Also, I have blended food and then put in ice cube trays for my 10 month old... then I heat 3 ice cubes for 30 sec and have her breakfast, etc That way, I'm not wasting baby food. I got the idea from the baby bullet blender advertisements.  So, because my daughter already hates ensure, etc.. I thought maybe I could get her to eat like 6 food-ice-cubes every hr and that way she could get better nutrition. I know, good luck with a 14 yr old. I'm sure she'll put up quite a fight.... I told her we could try that for breakfast and lunch and then work on determining what foods she can and can't eat for dinner. Then when schools out, we'll switch and do dinner at breakfast (a bigger meal, longer time to get down so won't be anywhere near bedtime).  As far are regurgitation, I want to make sure I'm clear on the mechanics, I'm sure again I'll find it on the posts... Say you eat a meal, it won't go through the LES because its too chunky (steak), sticky, too much of it, etc... so it sits until it gets thin enough to pass through? So, it can regurg then and/or if you eat another meal, that meal on top of the other sitting in the esophagus, may then cause you to regurg? So, is this condition the ultimate diet for portion control? I think the answer is probably yes and no. So, before my daughter could keep down the ensure, but because she drank it after she had a semi regular meal (even though it was only about 5 bites), she regurgitated because there was no more room in her esophagus?  So this is my question... if her LES is essentially closed, how long does it take liquid to drip through to the stomach? I know everyone is different.  How much is too much food/liquid that would dilate her esophagus even more? 6oz, 8oz...  Does this really matter, meaning, is she just going to be sensitive to most foods?  I know this is going to be trial and error.  I'm sure I'll find this when I do my searches, but how about anti depressants? Will that help her terrible stomach, neck and shoulder pain?  Thanks again for listening, Sue   From: Carolyn H <wooleeacre@...> achalasia Sent: Thursday, April 12, 2012 2:44 AM Subject: Re: Dilations-15 y/o  Dear Sue and Maureen. It is devastating when you discover your child has a rare disorder.. all of a sudden life is upside down and help is hard to find. The incidence of Achalasia is growing, but children are still a rarity. The greatest care and research is needed. In the messages area, you can type any keyword you can think of and read the many many messages from lots of us parents. These include the successes as well as the disappointments. Like you, my son was diagnosed at 14! On his 14th birthday! This launched me into an exploratory quest for the best answers to his situation. It resulted in a very carefully planned search for the best of the best! I figured my kid deserves the best and that is what he was gonna get, no matter what. If it hadn't been for this board, especially with Sandi, Notan, Maggie and some of the others, I never would have made it through. Now I subscribe as a student to every medical paper I can find. I keep up with the latest med. advances so I can pay it forward to anyone who needs information. I have walked a mile in your shoes.. My son, now 21, was seen by Dr. Patti, who now head the esophageal research center at U of Chicago. If you need help finding a specialist for your kids... I will be happy to help you. Use keywords like " pediatric " or Florida or my email..wooleeacre.. this will bring up those messages. you can also combine keywords, just separate by a comma. Choose carefully.. Study intently, above all be an advocate for the quality of life and care your child deserves. Carolyn Holmes mom of Cameron myo'd and fundo'd in 05 > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > Any suggestions would be greatly appreciated! > > > > Maureen in Wisconsin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 For my daughter the Ensure became too thick for her to swallow.Maureen From: Sue Stromberg <strombergrn2000@...> Subject: Re: Re: Dilations-15 y/o " achalasia " <achalasia > Date: Thursday, April 12, 2012, 8:19 AM  Last night, when I could not sleep, I was counting my blessings instead of sheep (yes its a lullaby but I have a baby also that I have to sing to). So I wanted to make sure that you all knew that you were my blessings. Suggestions for me, as well as good wishes to all undergoing tests or surgery has lifted my spirits.  My daughter Sara is 14, I have 2 teenagers and 2 toddlers and work full time, so I have no free time. This weekend, I'll try to do the searches on the site with the keywords you suggested and will probably get alot answers... I'm also going to call the insurance company and see which physicians I can see and also call their offices....   Here are my questions... my daughter is scheduled next week for a manometry... however, if I do go to Tampa to see one of those docs (which I will), will they want to repeat the test or will they just accept the results from my doctor here? I think I can call their office but need to see if any of you have had recent contact with their office, who the best contact person is (the office mgr, nurse, etc?) I have to get the biopsies back, but the GI doctor was pretty sure from the upper GIs and endoscopy where she had no peristalic waves, that its achalasia and that she will need surgery.  Also, I've been brainstorming ideas about food... are there any good books or websites that help with this... our society and my family is so focused on food for all occasions... is there a way to make food and eating secondary?  Also, I have blended food and then put in ice cube trays for my 10 month old... then I heat 3 ice cubes for 30 sec and have her breakfast, etc That way, I'm not wasting baby food. I got the idea from the baby bullet blender advertisements.  So, because my daughter already hates ensure, etc.. I thought maybe I could get her to eat like 6 food-ice-cubes every hr and that way she could get better nutrition. I know, good luck with a 14 yr old. I'm sure she'll put up quite a fight.... I told her we could try that for breakfast and lunch and then work on determining what foods she can and can't eat for dinner. Then when schools out, we'll switch and do dinner at breakfast (a bigger meal, longer time to get down so won't be anywhere near bedtime).  As far are regurgitation, I want to make sure I'm clear on the mechanics, I'm sure again I'll find it on the posts... Say you eat a meal, it won't go through the LES because its too chunky (steak), sticky, too much of it, etc... so it sits until it gets thin enough to pass through? So, it can regurg then and/or if you eat another meal, that meal on top of the other sitting in the esophagus, may then cause you to regurg? So, is this condition the ultimate diet for portion control? I think the answer is probably yes and no. So, before my daughter could keep down the ensure, but because she drank it after she had a semi regular meal (even though it was only about 5 bites), she regurgitated because there was no more room in her esophagus?  So this is my question... if her LES is essentially closed, how long does it take liquid to drip through to the stomach? I know everyone is different.  How much is too much food/liquid that would dilate her esophagus even more? 6oz, 8oz...  Does this really matter, meaning, is she just going to be sensitive to most foods?  I know this is going to be trial and error.  I'm sure I'll find this when I do my searches, but how about anti depressants? Will that help her terrible stomach, neck and shoulder pain?  Thanks again for listening, Sue   From: Carolyn H <wooleeacre@...> achalasia Sent: Thursday, April 12, 2012 2:44 AM Subject: Re: Dilations-15 y/o  Dear Sue and Maureen. It is devastating when you discover your child has a rare disorder.. all of a sudden life is upside down and help is hard to find. The incidence of Achalasia is growing, but children are still a rarity. The greatest care and research is needed. In the messages area, you can type any keyword you can think of and read the many many messages from lots of us parents. These include the successes as well as the disappointments. Like you, my son was diagnosed at 14! On his 14th birthday! This launched me into an exploratory quest for the best answers to his situation. It resulted in a very carefully planned search for the best of the best! I figured my kid deserves the best and that is what he was gonna get, no matter what. If it hadn't been for this board, especially with Sandi, Notan, Maggie and some of the others, I never would have made it through. Now I subscribe as a student to every medical paper I can find. I keep up with the latest med. advances so I can pay it forward to anyone who needs information. I have walked a mile in your shoes.. My son, now 21, was seen by Dr. Patti, who now head the esophageal research center at U of Chicago. If you need help finding a specialist for your kids... I will be happy to help you. Use keywords like " pediatric " or Florida or my email..wooleeacre.. this will bring up those messages. you can also combine keywords, just separate by a comma. Choose carefully.. Study intently, above all be an advocate for the quality of life and care your child deserves. Carolyn Holmes mom of Cameron myo'd and fundo'd in 05 > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > Any suggestions would be greatly appreciated! > > > > Maureen in Wisconsin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Hi Sue,  I am reading all your questions and seeing the all the progress you have made in such a short time in order to do as a parent as much as you can for Sara. As I read each question and started to formulate an answer, I realized how difficult it was for me to keep it all in a response which would not take all day to respond. Your questions and the way you asked is a good thing. We love seeing parents as concerned as you willing to put in the time and do the work necessary for the best life outcome for their child. How do I put my 30 years of experience with this disease (I am now 62), in a way that is best for Sara plus the mountains of knowledge I have absorbed in my 6 years on this Board?  Sue, before I posted this response, I first had to see if anyone already did while I was writing this. I read " Puddleriver "  aka 's excellent response, after I finished this, but decided, rather than " toss out " my last 1/2 hour of writing, having more opinions would probably be more helpful.  I'll try answering some specific questions, then make some general comments, though it won't really scratch the surface.  " Also, I've been brainstorming ideas about food... are there any good books or websites that help with this... our society and my family is so focused on food for all occasions... is there a way to make food and eating secondary? "  Notan, as you will soon learn, is our academic and spiritual leader when it comes to researching websites and with his philosophies on living with this disorder, and if you can't find something, he probably knows where it can be found. Eating is a primary drive with people, making it naturally difficult to " downgrade " to " secondary " but teaching oneself how to cope with this disease can take a great emphasis off of eating. That, as a family, you will learn how to do.  " I thought maybe I could get her to eat like 6 food-ice-cubes every hr and that way she could get better nutrition. "  Sounds like more of a punishment than a plan. Also might (referring to the last paragraph), eating at meals " primary " not secondary.  " As far are regurgitation,... Say you eat a meal, it won't go through the LES because its too chunky (steak), sticky, too much of it, etc... so it sits until it gets thin enough to pass through? So, it can regurg then and/or if you eat another meal, that meal on top of the other sitting in the esophagus, may then cause you to regurg? So, is this condition the ultimate diet for portion control? I think the answer is probably yes and no. So, before my daughter could keep down the ensure, but because she drank it after she had a semi regular meal (even though it was only about 5 bites), she regurgitated because there was no more room in her esophagus? "  Sometimes the LES is going to be open, sometimes closed, and the person will generally not know that before starting a meal. It is therefore advisable that one avoids eating chunky, spongy things that are hard to break down with the teeth. If the LES is open, even chunky food should go through. The answer in many cases is " It all depends...on various factors. "  What she must do is learn which liquids go down the best, since liquids can also get stuck too. Then start all meals, before your very first bite, with a liquid, which is intended on clearing the esophague (sometimes abbreviated as " E " ), before new food has a chance to sit on old food, creating layers of food. When the E gets stretched from too much food sitting there, a person sensing this might try to voluntarily regurg; sometimes it is not involuntary. When there is too much food sitting there, drinking liquids might compound the problem, and going to the bathroom and regurging might be the best solution. Drinking liquids before during and right after the meal is generally the best way to avoid creating a situation where the person gets " backed up. " Also never eat fast. We had a teenager who had Dr. Rice correct a Heller Myotomy (HM), and he often ate his food fast. Some of us might do it too, and then we get a sudden " reminder " that we are " Achalasians " and we should not eat that way. Some people place a nifedipine capsule under the tongue when food is backed up and that might relax the LES and result in it opening up.  " So this is my question... if her LES is essentially closed, how long does it take liquid to drip through to the stomach? I know everyone is different. "  It's important to learn how to sense when the LES is closed to avoid liquid getting backed up. If you drank a hot liquid, you feel the warmth when it reaches your stomach, and conversely with the feeling of cold with a cold drink. If she's not " feeling it " chances are its not going anywhere, and should stop drinking.  There is also a great " divide " amongst Achalasians as to whether or not they can drink carbonated beverages. For some of us, its the worst possible drink, yet for others it like a godsend, since the force of the carbonated beverage opens the LES and enables food to go thru. Its also great to have before and after a meal to prevent food to accumulate.  " How much is too much food/liquid that would dilate her esophagus even more? 6oz, 8oz... "  I have no idea. The name of the game is " clearing the esophagus " and it might be the most important thing to learn about this disease. Keeping the E clear is what might make the difference between keeping it straight and narrow, versus sigmoid and tremendously dilated (aka megaesophagus). Some doctors might lead you to think that you have the HM, and then you're (while not cured), the story of your E ends there. It doesn't. You must care for it in the way you treat it for the rest of your life, otherwise more drastic surgical steps might have to be taken.  " Does this really matter, meaning, is she just going to be sensitive to most foods? "  Again, it depends. Some achalasians can eat whatever they want, whenever they want. Others are more sensitive to certain foods, and some people avoid certain foods like the plague. Achalasia has been described, in simple terms, as the opposite of GERD, in that whatever opens the LES is bad for GERD patients, but great for achalasians, and whatever keeps the LES closed is great for GERD patients, but horrible for us.  " I know this is going to be trial and error. "  Very true, but you can't think in absolute terms either. While some foods to some people are always bad (i.e. never going down) there are some foods that will " trick " you, one time going down, another time not. Sometimes it is not the food, but the LES being open or closed. Sometimes it is the physical consistency of the food, whethe something is hard or soft, or its consistency after it has been chewed.  " ...how about anti depressants? Will that help her terrible stomach, neck and shoulder pain?  I have no answer. Depends what is causing the pain. Without knowing that, it would be wrong for me to comment.  I think, with a teenager at home, the most important thing to remember is to keep great communication lines open, don't treat your child like a " freak " with this disease, keep meals casual, don't stare, don't ask too much or at all if the " food is going down, " but most of all just " listen " with your eyes and your ears to what is going on. Learn what things to say that is perceived as helpful and at the same time learn what things you say, or looks you might give, are not helpful and might annoy her. This is a very difficult period of adjustment for Sara, as well as all members of the family, plus her friends. I have been blessed with a wife (next week will be our 41st) who has always been incredibly understanding and patient. While I often take that " understanding "  for granted, over the years we have read many stories of spouses who have not been that way, and one spouse in particular who conversely has been much more concerned about her husband than he seems to be about himself.  Its all a learning process, and Sue, you have come to the right place here. Perhaps having Sara read thru posts here might give her a greater understanding and perspective about achalasia.      ________________________________ From: Sue Stromberg <strombergrn2000@...> " achalasia " <achalasia > Sent: Thursday, April 12, 2012 9:19 AM Subject: Re: Re: Dilations-15 y/o  Last night, when I could not sleep, I was counting my blessings instead of sheep (yes its a lullaby but I have a baby also that I have to sing to). So I wanted to make sure that you all knew that you were my blessings. Suggestions for me, as well as good wishes to all undergoing tests or surgery has lifted my spirits.  My daughter Sara is 14, I have 2 teenagers and 2 toddlers and work full time, so I have no free time. This weekend, I'll try to do the searches on the site with the keywords you suggested and will probably get alot answers... I'm also going to call the insurance company and see which physicians I can see and also call their offices....   Here are my questions... my daughter is scheduled next week for a manometry... however, if I do go to Tampa to see one of those docs (which I will), will they want to repeat the test or will they just accept the results from my doctor here? I think I can call their office but need to see if any of you have had recent contact with their office, who the best contact person is (the office mgr, nurse, etc?) I have to get the biopsies back, but the GI doctor was pretty sure from the upper GIs and endoscopy where she had no peristalic waves, that its achalasia and that she will need surgery.  Also, I've been brainstorming ideas about food... are there any good books or websites that help with this... our society and my family is so focused on food for all occasions... is there a way to make food and eating secondary?  Also, I have blended food and then put in ice cube trays for my 10 month old... then I heat 3 ice cubes for 30 sec and have her breakfast, etc That way, I'm not wasting baby food. I got the idea from the baby bullet blender advertisements.  So, because my daughter already hates ensure, etc.. I thought maybe I could get her to eat like 6 food-ice-cubes every hr and that way she could get better nutrition. I know, good luck with a 14 yr old. I'm sure she'll put up quite a fight.... I told her we could try that for breakfast and lunch and then work on determining what foods she can and can't eat for dinner. Then when schools out, we'll switch and do dinner at breakfast (a bigger meal, longer time to get down so won't be anywhere near bedtime).  As far are regurgitation, I want to make sure I'm clear on the mechanics, I'm sure again I'll find it on the posts... Say you eat a meal, it won't go through the LES because its too chunky (steak), sticky, too much of it, etc... so it sits until it gets thin enough to pass through? So, it can regurg then and/or if you eat another meal, that meal on top of the other sitting in the esophagus, may then cause you to regurg? So, is this condition the ultimate diet for portion control? I think the answer is probably yes and no. So, before my daughter could keep down the ensure, but because she drank it after she had a semi regular meal (even though it was only about 5 bites), she regurgitated because there was no more room in her esophagus?  So this is my question... if her LES is essentially closed, how long does it take liquid to drip through to the stomach? I know everyone is different.  How much is too much food/liquid that would dilate her esophagus even more? 6oz, 8oz...  Does this really matter, meaning, is she just going to be sensitive to most foods?  I know this is going to be trial and error.  I'm sure I'll find this when I do my searches, but how about anti depressants? Will that help her terrible stomach, neck and shoulder pain?  Thanks again for listening, Sue   From: Carolyn H <wooleeacre@...> achalasia Sent: Thursday, April 12, 2012 2:44 AM Subject: Re: Dilations-15 y/o  Dear Sue and Maureen. It is devastating when you discover your child has a rare disorder.. all of a sudden life is upside down and help is hard to find. The incidence of Achalasia is growing, but children are still a rarity. The greatest care and research is needed. In the messages area, you can type any keyword you can think of and read the many many messages from lots of us parents. These include the successes as well as the disappointments. Like you, my son was diagnosed at 14! On his 14th birthday! This launched me into an exploratory quest for the best answers to his situation. It resulted in a very carefully planned search for the best of the best! I figured my kid deserves the best and that is what he was gonna get, no matter what. If it hadn't been for this board, especially with Sandi, Notan, Maggie and some of the others, I never would have made it through. Now I subscribe as a student to every medical paper I can find. I keep up with the latest med. advances so I can pay it forward to anyone who needs information. I have walked a mile in your shoes.. My son, now 21, was seen by Dr. Patti, who now head the esophageal research center at U of Chicago. If you need help finding a specialist for your kids... I will be happy to help you. Use keywords like " pediatric " or Florida or my email..wooleeacre.. this will bring up those messages. you can also combine keywords, just separate by a comma. Choose carefully.. Study intently, above all be an advocate for the quality of life and care your child deserves. Carolyn Holmes mom of Cameron myo'd and fundo'd in 05 > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > Any suggestions would be greatly appreciated! > > > > Maureen in Wisconsin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Sue, I don't generally reply or make any suggestions but my daughter is 13 now and was diagnosed at 10 we have created and found a lot of groups on facebook concerning Achalasia. They like this group focus on support and a wide range of information and personal experiences. If she is on facebook or perhaps even you please feel free to join keyword Achalasia should bring up a lot. Shamira Sent from my Motorola ATRIX™ 4G on AT & T Re: Re: Dilations-15 y/o Last night, when I could not sleep, I was counting my blessings instead of sheep (yes its a lullaby but I have a baby also that I have to sing to). So I wanted to make sure that you all knew that you were my blessings. Suggestions for me, as well as good wishes to all undergoing tests or surgery has lifted my spirits.  My daughter Sara is 14, I have 2 teenagers and 2 toddlers and work full time, so I have no free time. This weekend, I'll try to do the searches on the site with the keywords you suggested and will probably get alot answers... I'm also going to call the insurance company and see which physicians I can see and also call their offices....   Here are my questions... my daughter is scheduled next week for a manometry... however, if I do go to Tampa to see one of those docs (which I will), will they want to repeat the test or will they just accept the results from my doctor here? I think I can call their office but need to see if any of you have had recent contact with their office, who the best contact person is (the office mgr, nurse, etc?) I have to get the biopsies back, but the GI doctor was pretty sure from the upper GIs and endoscopy where she had no peristalic waves, that its achalasia and that she will need surgery.  Also, I've been brainstorming ideas about food... are there any good books or websites that help with this... our society and my family is so focused on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Hello Sue, Interestingly I was also diagnosed at 14. You ask very good questions, but there isn't a typical answer for them. With me, I could remember eating one cookie and feeling I couldn't breathe unless I vomited. The stomach, neck and shoulder pain were also symptoms that persist. Sometimes, the LES just won't open unless ts is physically forced open with " gulping " a large column of liquid. Generally, for me, the hydrostatic pressure isn't enough. I suppose all this depends on the the structure of the esophagus and the degree of LES pressure. If i had any advice for a 14 yr-old definitely diagnosed with achalasia, it would be to treat it aggressively with the HM and not the dilations. In my last " assessment, " my wonderful GI admitted my surgeons thought the HM I had much later was probably contraindicated due to the size of the esophaus and damage already done. Steve > > > > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > > Any suggestions would be greatly appreciated! > > > > > > Maureen in Wisconsin > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2012 Report Share Posted April 13, 2012 Hi Sue, When I was looking for a surgeon in Atlanta, my leading candidate was Dr. C. , who helped pioneer some of the surgical techniques for achalasia at the May clinic in Minnesota. I ended up with Dr. , because Dr. had moved to ville (my home town, incidentally) to head up the surgery department at the Mayo clinic there. I've not seen his name pop up here much, but I think he would at least be able to recommend a qualified surgeon. From what I can tell they handle a lot of achalasia patients there. I had my HM in May, 2008, and have lived as normal a life as one can since. The myotomy is a treatment, not a cure, so occasional issues crop up, but it's nothing like it was before the surgery. Everyone is different though, so results vary a lot. I consider myself one of the lucky ones. Keep digging til all your questions are answered, and good luck! Lee in Santa Barbara P.S. - I can only speak about the myotomy route, because that's the only treatment I've ever received. > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > Any suggestions would be greatly appreciated! > > > > Maureen in Wisconsin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2012 Report Share Posted April 13, 2012 I meant to show some links for Dr. - here they are: http://www.mayoclinic.org/bio/10766073.html http://www.linkedin.com/in/cdanielsmithmd And, a couple of news stories/press releases (not directly related to achalasia): http://sharing.mayoclinic.org/2011/05/24/life-saving-surgery-provides-a-second-c\ hance/ http://newsblog.mayoclinic.org/2012/04/11/mayo-clinic-offers-newly-approved-trea\ tment-for-acid-reflux-disease/ > > > > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > > Any suggestions would be greatly appreciated! > > > > > > Maureen in Wisconsin > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2012 Report Share Posted April 14, 2012 Hello Sue,  I've been following your posts and am so sorry to hear that Sara may have achalasia. I was much older when it started, but my doctor felt that I was probably born with it and it slowly progressed in my situation. I had very little help or understanding from the GI's or doctors that I would complain to over the years, so I am glad that you are getting help sooner than later for Sara. When things were at their worst for me, I literally would eat very small portions. I still have my little bowl that contained about 3/4 of a cup and that is all I could eat at one sitting. Many days it was a couple bites every hour that sustained me. Sometimes the LES works better than other times, with achalasia it's a roller coaster of events each day. That's the nature of this disorder, but it's not the end of the world. I'm now almost 54 and after my heller/Dor in 2010 I am practically normal in swallowing now, which is heavenly after suffering for 22yrs with this.  I know you've probably read alot on this site, it contains the best information you will find. Ask those doctors LOTS of questions, and find the best of the best to do the surgery. The surgery is not that big of a deal, but the " cut " must be done correctly for it to work the best for her and last her many many years and perhaps she may not have to look back.  When I was researching surgeons, I really wanted that face to face time and ask the details of how they do the surgery, how far will they cut and what kind of wrap. These are things that helped me make the decision. I read somewhere that a surgeon needs to do at least 50 myotomies to be over the learning curve...so pick one that has done a couple hundred and has high success range.  Keep reading and educating yourself and Sara, we are all pulling for her to get well and go on to live a " near " normal life and not have to dread every meal.  Best wishes, Julee in Oregon ________________________________ From: Sue Stromberg <strombergrn2000@...> " achalasia " <achalasia > Sent: Thursday, April 12, 2012 6:19 AM Subject: Re: Re: Dilations-15 y/o  Last night, when I could not sleep, I was counting my blessings instead of sheep (yes its a lullaby but I have a baby also that I have to sing to). So I wanted to make sure that you all knew that you were my blessings. Suggestions for me, as well as good wishes to all undergoing tests or surgery has lifted my spirits.  My daughter Sara is 14, I have 2 teenagers and 2 toddlers and work full time, so I have no free time. This weekend, I'll try to do the searches on the site with the keywords you suggested and will probably get alot answers... I'm also going to call the insurance company and see which physicians I can see and also call their offices....   Here are my questions... my daughter is scheduled next week for a manometry... however, if I do go to Tampa to see one of those docs (which I will), will they want to repeat the test or will they just accept the results from my doctor here? I think I can call their office but need to see if any of you have had recent contact with their office, who the best contact person is (the office mgr, nurse, etc?) I have to get the biopsies back, but the GI doctor was pretty sure from the upper GIs and endoscopy where she had no peristalic waves, that its achalasia and that she will need surgery.  Also, I've been brainstorming ideas about food... are there any good books or websites that help with this... our society and my family is so focused on food for all occasions... is there a way to make food and eating secondary?  Also, I have blended food and then put in ice cube trays for my 10 month old... then I heat 3 ice cubes for 30 sec and have her breakfast, etc That way, I'm not wasting baby food. I got the idea from the baby bullet blender advertisements.  So, because my daughter already hates ensure, etc.. I thought maybe I could get her to eat like 6 food-ice-cubes every hr and that way she could get better nutrition. I know, good luck with a 14 yr old. I'm sure she'll put up quite a fight.... I told her we could try that for breakfast and lunch and then work on determining what foods she can and can't eat for dinner. Then when schools out, we'll switch and do dinner at breakfast (a bigger meal, longer time to get down so won't be anywhere near bedtime).  As far are regurgitation, I want to make sure I'm clear on the mechanics, I'm sure again I'll find it on the posts... Say you eat a meal, it won't go through the LES because its too chunky (steak), sticky, too much of it, etc... so it sits until it gets thin enough to pass through? So, it can regurg then and/or if you eat another meal, that meal on top of the other sitting in the esophagus, may then cause you to regurg? So, is this condition the ultimate diet for portion control? I think the answer is probably yes and no. So, before my daughter could keep down the ensure, but because she drank it after she had a semi regular meal (even though it was only about 5 bites), she regurgitated because there was no more room in her esophagus?  So this is my question... if her LES is essentially closed, how long does it take liquid to drip through to the stomach? I know everyone is different.  How much is too much food/liquid that would dilate her esophagus even more? 6oz, 8oz...  Does this really matter, meaning, is she just going to be sensitive to most foods?  I know this is going to be trial and error.  I'm sure I'll find this when I do my searches, but how about anti depressants? Will that help her terrible stomach, neck and shoulder pain?  Thanks again for listening, Sue   From: Carolyn H <wooleeacre@...> achalasia Sent: Thursday, April 12, 2012 2:44 AM Subject: Re: Dilations-15 y/o  Dear Sue and Maureen. It is devastating when you discover your child has a rare disorder.. all of a sudden life is upside down and help is hard to find. The incidence of Achalasia is growing, but children are still a rarity. The greatest care and research is needed. In the messages area, you can type any keyword you can think of and read the many many messages from lots of us parents. These include the successes as well as the disappointments. Like you, my son was diagnosed at 14! On his 14th birthday! This launched me into an exploratory quest for the best answers to his situation. It resulted in a very carefully planned search for the best of the best! I figured my kid deserves the best and that is what he was gonna get, no matter what. If it hadn't been for this board, especially with Sandi, Notan, Maggie and some of the others, I never would have made it through. Now I subscribe as a student to every medical paper I can find. I keep up with the latest med. advances so I can pay it forward to anyone who needs information. I have walked a mile in your shoes.. My son, now 21, was seen by Dr. Patti, who now head the esophageal research center at U of Chicago. If you need help finding a specialist for your kids... I will be happy to help you. Use keywords like " pediatric " or Florida or my email..wooleeacre.. this will bring up those messages. you can also combine keywords, just separate by a comma. Choose carefully.. Study intently, above all be an advocate for the quality of life and care your child deserves. Carolyn Holmes mom of Cameron myo'd and fundo'd in 05 > > > > > > My dd's last dilation was a year ago and it seems like we will shortly being going again. She had 3 in 3 mos..the last one seemed to be better but here we sit again. We go for the upper GI in radiography on Wednesday. > > Her HM was 2 years ago. This past summer we did go down to Dr.Patti in Chicago for a visit. Do you think the HM failed that we need to get these dilations or is this the normal?? Dr. Patti did say he could do surgery for her.. > > What is entailed with getting your HM repaired? She is so young and I do not want to exhaust all her options before she turns 18.. > > Any suggestions would be greatly appreciated! > > > > Maureen in Wisconsin > > > Quote Link to comment Share on other sites More sharing options...
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