Guest guest Posted February 28, 2012 Report Share Posted February 28, 2012 Carolyn, Thank you for the information. It is great to have some names on the west coast that may be of help. We found she sleeps better elevated, and she requires oxygen at night only. Some nights are better than others as you well know I am sure. The only time she ever had aspiration pneumonia was during her second surgery, she aspirated on the table and they did not get it in time. We are in Reno now, left Vegas area because they could not diagnose her condition. Luckily we had a through speech pathologist go above and beyond the requested swallow study to find the achalasia or we might not have been diagnosed properly her in Reno as well. It stinks to be told there is no cure because I am still in the " magic bullet " phase of accepting the disease. The doctors keep telling us that we should not look further into it because we are just asking for trouble and that the damage has already been done. I just want to know if it is congenital like we suspect or if there is an underlying condition we should be fearful of down the line.. is that too much to ask? I agree wholeheartedly that a specialist is what we NEED, this gives me a different direction to consider, although Angie had her heart set on Ohio. -Chris > > Dear and , > I know the pain and despair you are feeling. You child is unique and special. > If you are considering seeing a specialist, I would recommend to you.. Dr Pellengrini at Seattle. So many people read the posts and think Cleveland is the only place. slow down.. take a breath.. and read ... from the group site. > The other specialist that is top in the world is Dr. Marco Patti in Chicago. He was my son's specialist. > > These two men have great compassion and will take the time to answer the questions you may have. > > It is extremely rare that a child would present these 3 things at the same time by 5 years old. Unfortunately, in the most compassionate way I can say.. today, there is no cure. When my son was diagnosed in 2005, I researched and read every medical paper I could get my hands on. But be comforted there are specialists.. and a specialist is what you NEED.. > > I am sure you probably have your child sleep elevated. Have you had any bouts with aspiration pneumonia? I am assuming you are in Reno or Las Vegas? Look at the site for references on Surgeons and Specialists. On the Achalasia site, in the messages area, search the messages with the word pediatric or atresia, or another key word to have messages come up related to your needs. Also look at www.reflux.org for some info on the trachea part of your research.. they do not seem to have any issues that i have seen with Achalasia or Mega-esophagus. > > What were the factors in the determination of > 1) Achalasia 2) Tracheal Malacia 3) Mega-Esophagus > If you want some referrals for Peds Achalasia, let us know.. I will find some one of expertise! > look who is writing the articles and get their emails. > These specialists will very often respond to emails and phone calls!!! They can help you by the history and your endoscopy! > Some of the key words you can use are: > " pediatric " dysphagia, motility disorders, swallowing disorders, myotomy, fundoplication, esophageal atresia " > ____________________________________________________________________ > Located at U of WA. is Neil K. Kaneshiro, MD, MHA > > Dr. Pellegrini Chair, dept of surgery, director, swallowing center. 206 598 4477 pellegri@... > > UCLA Los Angeles, CA Dr. Vargas Pediatric GI 1-310-825-5803 > > UCLA Los Angeles, CA Dr. Dunn Pediatric Surgeon 1-310-206-6134 Laparoscopic Hellers Myotomy w/ Partial Fundoplication > > Molly O'Gorman Pediatric Gastroenterology, Department of Pediatrics, The University of Utah > Primary Children's Medical Center, 100 N. Capecchi Dr., Suite 2650, Salt Lake City, UT 84113 > Phone: 801-662-2900, Fax: 801-662-2912 > > ______________________________________________________________________ > > clipped from a past post ......... > > " Remember what ever is done.. is just that ... done... take your time and read and research, google scholar is good for pediatric achalasia, it is EXTREMELY RARE! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 let me just suggest to you.. UCSF ..Dr. Farmer may be out on a teaching sabatical. but barbara, her assistant <pedsurg@...>; Please remember little people require so much more care than the big people. It is a very fragile balance. We have to love our peds specialists, because our relationship with them is very important.. While mom may have had her heart set on Ohio, it may not be the best of choices. There are those here who rant and rave over Cleveland Clinic, but meanwhile what about the others. Richter is good.. but so are many others.. and with better outcomes sometimes.. but that is really for the bigger peoples.. adults.. what about kids.. and little kids... Let me just share with you ..  We had our surgery at UCSF at the childrens hospital, performed by Dr. Marco Patti who was second seat to Dr. Farmer, because she was the peds chief. The people were amazing. the staff was great..We had an emergency and ended up in ICU, and I cannot say enough.. they helped me deal with the situation.. Another family here on the A site has little girl. They saw Dr. Pellegrini in Seattle at the U of Wa. again their experience was similar. I will certainly consider traveling to this man as I am very impressed with him. but only if I cannot get to Chicago to see the Famous Dr. Patti! " To contact Dr. Pellegrini, please e-mail him at: pellegri@... " I am very interested in developing diagnostic and treatment plans that are centered on patients' values. I listen carefully to my patients' complaints, and I ask many questions about how those complaints affect their lives.. " This was from HIS page...  These guys are the top .. in the world.. Don't hesitate to google their names and do a little reading. I included some info below for some reference reading.. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1360106/ http://www.facs.org/news/pellegrini1110.html http://pedsurg.ucsf.edu/news.aspx http://pub.ucsf.edu/magazine/200306/farmer.html http://medical.washington.edu/bios/view.aspx?CentralId=22127 From: Pahrump2009 <vizionx@...> Subject: Re: Mom of achalasia Date: Tuesday, February 28, 2012, 11:51 PM  Carolyn, Thank you for the information. It is great to have some names on the west coast that may be of help. We found she sleeps better elevated, and she requires oxygen at night only. Some nights are better than others as you well know I am sure. The only time she ever had aspiration pneumonia was during her second surgery, she aspirated on the table and they did not get it in time. We are in Reno now, left Vegas area because they could not diagnose her condition. Luckily we had a through speech pathologist go above and beyond the requested swallow study to find the achalasia or we might not have been diagnosed properly her in Reno as well. It stinks to be told there is no cure because I am still in the " magic bullet " phase of accepting the disease. The doctors keep telling us that we should not look further into it because we are just asking for trouble and that the damage has already been done. I just want to know if it is congenital like we suspect or if there is an underlying condition we should be fearful of down the line.. is that too much to ask? I agree wholeheartedly that a specialist is what we NEED, this gives me a different direction to consider, although Angie had her heart set on Ohio. -Chris > > Dear and , > I know the pain and despair you are feeling. You child is unique and special. > If you are considering seeing a specialist, I would recommend to you.. Dr Pellengrini at Seattle. So many people read the posts and think Cleveland is the only place. slow down.. take a breath.. and read ... from the group site. > The other specialist that is top in the world is Dr. Marco Patti in Chicago. He was my son's specialist. > > These two men have great compassion and will take the time to answer the questions you may have. > > It is extremely rare that a child would present these 3 things at the same time by 5 years old. Unfortunately, in the most compassionate way I can say.. today, there is no cure. When my son was diagnosed in 2005, I researched and read every medical paper I could get my hands on. But be comforted there are specialists.. and a specialist is what you NEED.. > > I am sure you probably have your child sleep elevated. Have you had any bouts with aspiration pneumonia? I am assuming you are in Reno or Las Vegas? Look at the site for references on Surgeons and Specialists. On the Achalasia site, in the messages area, search the messages with the word pediatric or atresia, or another key word to have messages come up related to your needs. Also look at www.reflux.org for some info on the trachea part of your research.. they do not seem to have any issues that i have seen with Achalasia or Mega-esophagus. > > What were the factors in the determination of > 1) Achalasia 2) Tracheal Malacia 3) Mega-Esophagus > If you want some referrals for Peds Achalasia, let us know.. I will find some one of expertise! > look who is writing the articles and get their emails. > These specialists will very often respond to emails and phone calls!!! They can help you by the history and your endoscopy! > Some of the key words you can use are: > " pediatric " dysphagia, motility disorders, swallowing disorders, myotomy, fundoplication, esophageal atresia " > __________________________________________________________ > Located at U of WA. is Neil K. Kaneshiro, MD, MHA > > Dr. Pellegrini Chair, dept of surgery, director, swallowing center. 206 598 4477 pellegri@... > > UCLA Los Angeles, CA Dr. Vargas Pediatric GI 1-310-825-5803 > > UCLA Los Angeles, CA Dr. Dunn Pediatric Surgeon 1-310-206-6134 Laparoscopic Hellers Myotomy w/ Partial Fundoplication > > Molly O'Gorman Pediatric Gastroenterology, Department of Pediatrics, The University of Utah > Primary Children's Medical Center, 100 N. Capecchi Dr., Suite 2650, Salt Lake City, UT 84113 > Phone: 801-662-2900, Fax: 801-662-2912 > > __________________________________________________________ > > clipped from a past post ......... > > " Remember what ever is done.. is just that ... done... take your time and read and research, google scholar is good for pediatric achalasia, it is EXTREMELY RARE! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 Carolyn wrote: > If you are considering seeing a specialist, I would recommend to you.. > Dr Pellengrini at Seattle. ... > > The other specialist that is top in the world is Dr. Marco Patti in > Chicago. He was my son's specialist. ... > I agree, these are good recommendations. I assumed from her message she was near Ohio, so TCC. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 >What were the factors in the determination of >1) Achalasia We went into the hospital in Oct this year, had been spitting up white, frothy, bubbly phlegm since she was 1, but the episodes would last a minute or 2 and ANY doctor that we would take her to would do a well check and say to keep an eye on her(she was never diagnosed till Oct this year). This last choking episode she went limp, eyes rolled back, then started turning blue as I did mouth to mouth, finger swipes, and bounced her over my shoulder to try and dislodge anything. She then went stiff as a board, her jaw locked, and she lost her bowel content on me. I thought I lost her. I continued to work on her and the obstruction passed and she started breathing again, just as the paramedics pulled up. My thought after we took her into the hospital in 2007 and the let her go home after 9 days was that she might have a fistula that was trapping saliva causing the white frothy bubbly phlegm... they would go in and stitch it up and we would be home. I never dreamed it could be Achalasia. Doctors scoped her in the hospital and saw her esophagus was enlarged 4x the size and then did a CT scan to determine the walls of the esophagus was 1 " thick. They did a barium swallow study and the speech pathologist took it further to look at the lower esophagus and the liquid " bobbed " right above the Lower Esophageal sphincter. They were going to send us to Stanford to have a manometry done, but it was so enlarged they determined it was unnecessary. >2) Tracheal Malacia Her ENT and Pulmonologist scoped her and while lying flat on the table the trachea was 98 percent closed. Now after she has had the tracheotomy she is still half mooned past the tube. >3) Mega-Esophagus Due to the size of her esophagus on the CT scan it was as big or bigger than her stomach according to her doctors. After the heller miotomy and partial fundoplycation she was throwing up 8x a shift at the hospital. Since we brought her home it has only been once every morning and maybe a couple of times in the day if they up her feeds, which they are doing to transition for J tube feedings to G tube feedings, then hopefully getting transitioning bolus feeds. -Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 Something that occurred to me .. Was she tested for Scleroderma? Carolyn From: Pahrump2009 <vizionx@...> Subject: Re: Mom of achalasia Date: Wednesday, February 29, 2012, 9:05 AM Â >What were the factors in the determination of >1) Achalasia We went into the hospital in Oct this year, had been spitting up white, frothy, bubbly phlegm since she was 1, but the episodes would last a minute or 2 and ANY doctor that we would take her to would do a well check and say to keep an eye on her(she was never diagnosed till Oct this year). This last choking episode she went limp, eyes rolled back, then started turning blue as I did mouth to mouth, finger swipes, and bounced her over my shoulder to try and dislodge anything. She then went stiff as a board, her jaw locked, and she lost her bowel content on me. I thought I lost her. I continued to work on her and the obstruction passed and she started breathing again, just as the paramedics pulled up. My thought after we took her into the hospital in 2007 and the let her go home after 9 days was that she might have a fistula that was trapping saliva causing the white frothy bubbly phlegm... they would go in and stitch it up and we would be home. I never dreamed it could be Achalasia. Doctors scoped her in the hospital and saw her esophagus was enlarged 4x the size and then did a CT scan to determine the walls of the esophagus was 1 " thick. They did a barium swallow study and the speech pathologist took it further to look at the lower esophagus and the liquid " bobbed " right above the Lower Esophageal sphincter. They were going to send us to Stanford to have a manometry done, but it was so enlarged they determined it was unnecessary. >2) Tracheal Malacia Her ENT and Pulmonologist scoped her and while lying flat on the table the trachea was 98 percent closed. Now after she has had the tracheotomy she is still half mooned past the tube. >3) Mega-Esophagus Due to the size of her esophagus on the CT scan it was as big or bigger than her stomach according to her doctors. After the heller miotomy and partial fundoplycation she was throwing up 8x a shift at the hospital. Since we brought her home it has only been once every morning and maybe a couple of times in the day if they up her feeds, which they are doing to transition for J tube feedings to G tube feedings, then hopefully getting transitioning bolus feeds. -Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2012 Report Share Posted February 29, 2012 > Was she tested for Scleroderma? > Carolyn no, she was not. Reading about it now. -Chris Quote Link to comment Share on other sites More sharing options...
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