Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Hi, ! I am the mom of Cameron. He is now 15 and we discovered he had achalasia in December the day before his 14th birthday. Between December and May of 2005, Our family went through the biggest educational event in history. Well Cameron and I did.mostly. and the others nodded and said... Oh! [well, not really] When we found out, I hit the Med libraries! Signed on as a Med student and began to read and cry.. cry and read... I found this board and with the help of a number of "old timers" began to find out the experience and wisdom these folks had to offer. Many a night I pounded the keyboard. I emailed and phoned and talked to quite a few surgeons. I looked at alternatives, and natural and holistic approaches, knowing full well, that once we crossed the bridge of surgery, there was no going back. I wanted to know it was the best and last alternative. We went thought the various stages of aggressive Achalasia, and 84lbs and 5 months later, Cameron saw one of the greatest surgeons. Dr. Patti at UCSF. I realize you may be overwhelmed, or numb, but let me assure you we are here to help you and support you. You have to be an aggressive advocate for the child as there are more hoops to jump through. I noticed someone wrote that perhaps you need to find an adult specialist, but that is only partially true. The problem herein lies in the fact that your child is just that a child. The Big guys don't work on children. So with that ... what do you do.. We had Dr. Patti, but we also had .. Dr. Diane Farmer Chief of Pediatric Surgery and her Whole team in addition to Dr. Patti and his whole team.. What a crowded theater it was that day! ! ! The Jama articles and the Jpgn articles are not available to you without a subscription until they get to be so old... or the info is not as new. Once it has been cited, it will become available in the full abstract. Like Sandy said, you may contact the surgeon if you want a copy of that particular abstract. Chances are he is waiting for it to be published along with his colleagues. Do you need some good info on Adolescents and Achalasia? Do you need some other resource material.? Let me know, I will be happy to copy the articles and/or links and get them to you. If I can be of any help to you please do not hesitate. Additionally feel free to email me personally you like... Your journey is bumpy... I pray Good ears for hearing and a heart for learning! Carolyn in No CA , with a real live sunny day! Snows a meltin' and Mom of Cameron Myotomized, Fundo'd, and Pizza'd up.. Wooleeacre Productions Custom Screenprinting on a small scale! Brings words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Hi, Carolyn! I was told you would be a great " mom resource. " Thank you for getting in touch. Mark's barium swallow was on Friday and that was the first I heard the word achalasia. Since then I've been doing just what you did, researching, reading, crying... and praying. > We went thought the various stages of aggressive > Achalasia, and 84lbs and 5 months later, Cameron saw one of the > greatest surgeons. Dr. Patti at UCSF. Good heavens. Your son lost 84 pounds?? What are the stages of aggressive Achalasia? Does myotomy stop the progress of the disease or will the esophagus keep losing motility? I don't really understand how swallowing can work without a functional LES and peristalsis. After a myotomy do you need to wash everything down with liquid and just rely on gravity? > I realize you may be overwhelmed, or numb, but let me assure > you we are here to help you and support you. I'm so glad. It does indeed feel overwhelming, and I can't for the life of me concentrate on my work (freelance translation, with deadlines coming up). Meanwhile, Mark doesn't seem to think his condition is a big deal. He's not in pain; he just has to wait awhile for his food to go down, although occasionally it doesn't. I mentioned the possibility of surgery but I haven't told him yet that (as I understand) surgery doesn't really cure it, and sometimes it has to be repeated or causes other problems... > I noticed someone wrote that perhaps you need to find an adult > specialist, but that is only partially true. We're going to first talk to a pediatric gastroenterologist in Lancaster. I expect we'll then need to see a surgeon with more achalasia experience in a larger city, like Hershey or Philadelphia. > Like Sandy said, you may > contact the surgeon if you want a copy of that particular > abstract. I faxed the first author in the Netherlands but haven't heard back yet. > Do you need some good info on Adolescents and Achalasia? Do > you need some other resource material.? Let me know, I will be > happy to copy the articles and/or links and get them to you. Yes, yes, please! > If I can be of any help to you please do not hesitate. > Additionally feel free to email me personally you like... I can't tell you how much I appreciate this. Quote Link to comment Share on other sites More sharing options...
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