Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Thank you so much! I would gladly take any names you can find for second opinions. I don't want to just send him under the knife without thoroughly discussing all his options. I will look online as well, but if you come up with anyone please let me know. Thanks again! > > > > > > From: Malo <grneyegrrl@> > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > achalasia > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at Children's Hospital for the length of this. The dilations have never worked in the past. He had a lot of scar tissue that they were never able to break. My fear of course is another myotomy. I really just want him to not have to deal with this anymore. It breaks my heart to see him like that, and it's unbearable to see him after surgery. It's one of those things that as a Mom you can't make better, you know? > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > <achalasia > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56 > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > drink while eating. > > > > > > > > We go back to the doctor in a week. My question is what's the next option? > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Dear Malo, Something you said really caught my attention, that your current doctors are great. I totally understand they may have great bedside manners and you like them, but you absolutely have to go to the TOP doctors that do many of these surgeries. You are attached to them, but you may have reached the limit of their espertise. You may need to travel. I would suggest going to the most experienced achalasia gi/surgeon combination and bring in a pediatric specialist. There just are not nearly enough pediatric surgeons that could have enough experience with young kids. I would go with the achalasia experience first then let them pick a pediatric surgeon to assist. In a perfect world your son should be doing better. Saying that, I totally understand your bond with your current doctors, but gather up your last tests and make a little summary of his condition and email it to the top names here. You will get phone calls and emails back. Then see what they say and make a decision if you should continue with your current doctors. The latest barium swallow tests are probably the most descriptive to them. good luck Sandy > > > > > > From: Malo <grneyegrrl@> > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > achalasia > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at Children's Hospital for the length of this. The dilations have never worked in the past. He had a lot of scar tissue that they were never able to break. My fear of course is another myotomy. I really just want him to not have to deal with this anymore. It breaks my heart to see him like that, and it's unbearable to see him after surgery. It's one of those things that as a Mom you can't make better, you know? > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > <achalasia > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56 > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > drink while eating. > > > > > > > > We go back to the doctor in a week. My question is what's the next option? > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 100%   AGREE with Sandy. ________________________________ From: Sandy <sandycarroll@...> achalasia Sent: Wed, March 9, 2011 4:00:19 PM Subject: Re: Malo and research and suggestions.  Dear Malo, Something you said really caught my attention, that your current doctors are great. I totally understand they may have great bedside manners and you like them, but you absolutely have to go to the TOP doctors that do many of these surgeries. You are attached to them, but you may have reached the limit of their espertise. You may need to travel. I would suggest going to the most experienced achalasia gi/surgeon combination and bring in a pediatric specialist. There just are not nearly enough pediatric surgeons that could have enough experience with young kids. I would go with the achalasia experience first then let them pick a pediatric surgeon to assist. In a perfect world your son should be doing better. Saying that, I totally understand your bond with your current doctors, but gather up your last tests and make a little summary of his condition and email it to the top names here. You will get phone calls and emails back. Then see what they say and make a decision if you should continue with your current doctors. The latest barium swallow tests are probably the most descriptive to them. good luck Sandy > > > > > > From: Malo <grneyegrrl@> > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > achalasia > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at >Children's Hospital for the length of this. The dilations have never worked in >the past. He had a lot of scar tissue that they were never able to break. My >fear of course is another myotomy. I really just want him to not have to deal >with this anymore. It breaks my heart to see him like that, and it's unbearable >to see him after surgery. It's one of those things that as a Mom you can't make >better, you know? > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > <achalasia > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was >56 > > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > drink while eating. > > > > > > > > We go back to the doctor in a week. My question is what's the next >option? > > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 I will see who else I can find in my area but ravel isnt a viable option for me. I'm not sure my insurance would cover someone out of my network. Not sure I can afford the cost associated with both the travel and the medical expense. I will check Hopkins though Sent from my iPhone On Mar 9, 2011, at 6:39 PM, fe busse <bil45ohb@...> wrote: > 100% AGREE with Sandy. > > ________________________________ > From: Sandy <sandycarroll@...> > achalasia > Sent: Wed, March 9, 2011 4:00:19 PM > Subject: Re: Malo and research and suggestions. > > > Dear Malo, > > Something you said really caught my attention, that your current doctors are > great. I totally understand they may have great bedside manners and you like > them, but you absolutely have to go to the TOP doctors that do many of these > surgeries. You are attached to them, but you may have reached the limit of their > espertise. You may need to travel. > > I would suggest going to the most experienced achalasia gi/surgeon combination > and bring in a pediatric specialist. There just are not nearly enough pediatric > surgeons that could have enough experience with young kids. I would go with the > achalasia experience first then let them pick a pediatric surgeon to assist. > > In a perfect world your son should be doing better. Saying that, I totally > understand your bond with your current doctors, but gather up your last tests > and make a little summary of his condition and email it to the top names here. > You will get phone calls and emails back. Then see what they say and make a > decision if you should continue with your current doctors. The latest barium > swallow tests are probably the most descriptive to them. > > good luck > > Sandy > > > > > > > > > > > > From: Malo <grneyegrrl@> > > > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > > > achalasia > > > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at > >Children's Hospital for the length of this. The dilations have never worked in > >the past. He had a lot of scar tissue that they were never able to break. My > >fear of course is another myotomy. I really just want him to not have to deal > >with this anymore. It breaks my heart to see him like that, and it's unbearable > >to see him after surgery. It's one of those things that as a Mom you can't make > >better, you know? > > > > > > > > > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > > > > > <achalasia > > > > > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was > >56 > > > > > > > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > > > > > > drink while eating. > > > > > > > > > > > > We go back to the doctor in a week. My question is what's the next > >option? > > > > > > > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 , Trust me on this. Don't worry about the insurance out of network thing. Pick the BEST surgeon, even if it means traveling. They all have financial depts that WILL work with you to get you in network. Even payment plans!!! I was out if network with dr. L at upmc but they worked their magic and all I paid was $12 for cable access for 2 days. Total costs for my surgery were $35,000. You can do this. The finances can be worked out. Many people on this board will tell you similar insurance stories. C > > > > > > > > > > > > > > From: Malo <grneyegrrl@> > > > > > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > > > > > achalasia > > > > > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at > > >Children's Hospital for the length of this. The dilations have never worked in > > >the past. He had a lot of scar tissue that they were never able to break. My > > >fear of course is another myotomy. I really just want him to not have to deal > > >with this anymore. It breaks my heart to see him like that, and it's unbearable > > >to see him after surgery. It's one of those things that as a Mom you can't make > > >better, you know? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > > > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > > > > > > > > > <achalasia > > > > > > > > > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was > > >56 > > > > > > > > > > > > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > > > > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > > > > > > > > > > > drink while eating. > > > > > > > > > > > > > > > > We go back to the doctor in a week. My question is what's the next > > >option? > > > > > > > > > > > > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 I totally understand about the cost, but it is absolutely critical you get the best surgeon/gi combination. There are many stories here of members that had achalasia as a youngster and maybe had less than wonderful treatment because their parents just didn't know. comes to mind. I would even go out on a limb and guess that one of us would help you find a place to stay if hotels are just out of the question. You CAN get out of the network! With persistence your insurance will refer you out. Your son has already had enough work that may have made future treatments more difficult. It is not the same problems as one of us over 50 faces. Look back on ' story, his mother Tonia.. they started out with a local surgeon then tried another and even the last surgery has not been totally successful. I don't think he is even 20 years old yet. Tonia doesn't come back here much, but it has been very rough for them. Everyone is different, but they stayed local for a long time before they went outside their area. No one knows, but many of us have the opinion that if they had gone to experts earlier things would be better now. I don't want to freak you out and seem heavy handed. Local doctors are great at what they do, but achalasia takes a specialist with a lot of experience. If I had to choose between things like cable tv, steak vs. hamburger, I would take the less expensive choices and go out of network. It is the best investment you will make in your son's future. Achalasia can be very depressing and we can become very isolated. Not only is eating difficult, but even talking and breathing can become difficult because the saliva doesn't go down our throats well and we can end up coughing to clear our airways. having people make suggestions about what is good to eat, suggesting Slim Fast or a blender makes us want to throw things at them... so we just start avoiding people. It is hard for even us old ones. Can't imagine what it is like for a young person. My surgeon's wife is a pediatric surgeon, so when he has done pediatric surgeries he has his wife assist, even though she is in a different hospital. Please call one of us and arrange to meet one of us in person. I think it helps a lot. There are some kids that pop in here every once in a while. There is also a group on facebook. Personally i wouldn't want to type these things on Facebook so like the relative privacy here more. Kids may feel the same. Sandy > > > > > > > > > > > > > > From: Malo <grneyegrrl@> > > > > > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > > > > > achalasia > > > > > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at > > >Children's Hospital for the length of this. The dilations have never worked in > > >the past. He had a lot of scar tissue that they were never able to break. My > > >fear of course is another myotomy. I really just want him to not have to deal > > >with this anymore. It breaks my heart to see him like that, and it's unbearable > > >to see him after surgery. It's one of those things that as a Mom you can't make > > >better, you know? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > > > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > > > > > > > > > <achalasia > > > > > > > > > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was > > >56 > > > > > > > > > > > > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > > > > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > > > > > > > > > > > drink while eating. > > > > > > > > > > > > > > > > We go back to the doctor in a week. My question is what's the next > > >option? > > > > > > > > > > > > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Any suggestions on where I might find some names? I appreciate all of this. I just sat my son down to talk and he told me even liquids are getting stuck again. So the brave face is on in front of him and then I freak out behind closed doors. We all know what that's like right? Thanks again guys this has been a huge help for me Sent from my iPhone On Mar 9, 2011, at 10:23 PM, " Sandy " <sandycarroll@...> wrote: > I totally understand about the cost, but it is absolutely critical you get the best surgeon/gi combination. There are many stories here of members that had achalasia as a youngster and maybe had less than wonderful treatment because their parents just didn't know. comes to mind. > > I would even go out on a limb and guess that one of us would help you find a place to stay if hotels are just out of the question. > > You CAN get out of the network! With persistence your insurance will refer you out. > > Your son has already had enough work that may have made future treatments more difficult. It is not the same problems as one of us over 50 faces. > > Look back on ' story, his mother Tonia.. they started out with a local surgeon then tried another and even the last surgery has not been totally successful. I don't think he is even 20 years old yet. Tonia doesn't come back here much, but it has been very rough for them. Everyone is different, but they stayed local for a long time before they went outside their area. No one knows, but many of us have the opinion that if they had gone to experts earlier things would be better now. > > I don't want to freak you out and seem heavy handed. Local doctors are great at what they do, but achalasia takes a specialist with a lot of experience. If I had to choose between things like cable tv, steak vs. hamburger, I would take the less expensive choices and go out of network. It is the best investment you will make in your son's future. > > Achalasia can be very depressing and we can become very isolated. Not only is eating difficult, but even talking and breathing can become difficult because the saliva doesn't go down our throats well and we can end up coughing to clear our airways. having people make suggestions about what is good to eat, suggesting Slim Fast or a blender makes us want to throw things at them... so we just start avoiding people. It is hard for even us old ones. Can't imagine what it is like for a young person. > > My surgeon's wife is a pediatric surgeon, so when he has done pediatric surgeries he has his wife assist, even though she is in a different hospital. > > Please call one of us and arrange to meet one of us in person. I think it helps a lot. There are some kids that pop in here every once in a while. There is also a group on facebook. Personally i wouldn't want to type these things on Facebook so like the relative privacy here more. Kids may feel the same. > > Sandy > > > > > > > > > > > > > > > > > > > > From: Malo <grneyegrrl@> > > > > > > > > > Subject: Re: child with recurring symptoms after Heller Myotomy > > > > > > > > > achalasia > > > > > > > > > Date: Tuesday, March 8, 2011, 8:12 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > He's 11 now. We live in DC. The doc we have is amazing. He's been treated at > > > >Children's Hospital for the length of this. The dilations have never worked in > > > >the past. He had a lot of scar tissue that they were never able to break. My > > > >fear of course is another myotomy. I really just want him to not have to deal > > > >with this anymore. It breaks my heart to see him like that, and it's unbearable > > > >to see him after surgery. It's one of those things that as a Mom you can't make > > > >better, you know? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > From: " Malo " <grneyegrrl@> > > > > > > > > > > > > > > > > > > > Sent: Tuesday, March 08, 2011 10:43 AM > > > > > > > > > > > > > > > > > > > <achalasia > > > > > > > > > > > > > > > > > > > > Subject: child with recurring symptoms after Heller Myotomy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hello all- > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New to the group here and hoping to find some info/support, really > > > > > > > > > > > > > > > > > > > > anything at this point. Can't find a lot of info on the web. > > > > > > > > > > > > > > > > > > > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was > > > >56 > > > > > > > > > > > > > > > > > > > > > > > > pounds when we found out. We've gone through feeding tubes, supplements, > > > > > > > > > > > > > > > > > > > > > > > all of that. He had 4 dilations before they determined those weren't > > > > > > > > > > > > > > > > > > > > working. He finally had a myotomy about 2 years ago. > > > > > > > > > > > > > > > > > > > > He's been doing GREAT until recently. I've noticed the same things: not > > > > > > > > > > > > > > > > > > > > eating a lot, frequent trips to the bathroom during meals, rushing for a > > > > > > > > > > > > > > > > > > > > > > > drink while eating. > > > > > > > > > > > > > > > > > > > > We go back to the doctor in a week. My question is what's the next > > > >option? > > > > > > > > > > > > > > > > > > > > > > > > I read something about an open Heller's Myotomy, which terrifies me. > > > > > > > > > > > > > > > > > > > > Has anyone else been through this? Any advice would be greatly > > > > > > > > > > > > > > > > > > > > appreciated! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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