Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 In a message dated 12/28/2002 6:35:30 PM US Eastern Standard Time, Rattpack1@... writes: > >>> After a ... $2500 consultation ... cannot find anything anatomically > wrong with her. yet he wants to do a Sphincterotomy (sp) stint placement. < > << >>>he sees no benefit from enzymes, antioxidant therapy and the low-no fat diet.<<< >>>Cassie is really down too about it. She does not want stint placement. She says she would rather have Pancreatectomy with islet transplant< Patty, Thanks for sharing that letter with us. I am very curious what his wording is in regard to his findings and recommendations. Generally speaking a physician will chart there are no abnormalities in one area when there are abnormalities in another area. Otherwise, they don't usually specify any particular area of the exam. To state that there are not anatomical abnormalities of the pancreas, leaves me hearing a silent, " ...but there are... " If the anatomy is okay, then is there a problem on the cellular level? We encourage everyone to be a part of the health care team, and if they do not understand the language or rational of the care plan interventions or goals, keep asking the doctor, " Now, tell me one more time, why do you want to do surgery when there is nothing wrong to fix? I really have a problem with children not being adequately medicated if they are in pain. It's barbaric. I have learn to judge whether a doctor is proactive in the treatment of Pancreatitis based on their understanding of the role diet and supplements play in the healing process. Anybody with a GI disorder would benefit from a low fat diet and antioxidants. It is scary to know how many people do not have computers and therefore no access to research and information to help them make informed health care decisions. That project is getting ready to boil over. The PAI has a growing offline membership that need to network and connect. Karyn E. , RN Founder / Executive Director Pancreatitis Association International Corp. Office: Indps, IN, USA 1- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 In a message dated 12/28/2002 6:35:30 PM US Eastern Standard Time, Rattpack1@... writes: > >>> After a ... $2500 consultation ... cannot find anything anatomically > wrong with her. yet he wants to do a Sphincterotomy (sp) stint placement. < > << >>>he sees no benefit from enzymes, antioxidant therapy and the low-no fat diet.<<< >>>Cassie is really down too about it. She does not want stint placement. She says she would rather have Pancreatectomy with islet transplant< Patty, Thanks for sharing that letter with us. I am very curious what his wording is in regard to his findings and recommendations. Generally speaking a physician will chart there are no abnormalities in one area when there are abnormalities in another area. Otherwise, they don't usually specify any particular area of the exam. To state that there are not anatomical abnormalities of the pancreas, leaves me hearing a silent, " ...but there are... " If the anatomy is okay, then is there a problem on the cellular level? We encourage everyone to be a part of the health care team, and if they do not understand the language or rational of the care plan interventions or goals, keep asking the doctor, " Now, tell me one more time, why do you want to do surgery when there is nothing wrong to fix? I really have a problem with children not being adequately medicated if they are in pain. It's barbaric. I have learn to judge whether a doctor is proactive in the treatment of Pancreatitis based on their understanding of the role diet and supplements play in the healing process. Anybody with a GI disorder would benefit from a low fat diet and antioxidants. It is scary to know how many people do not have computers and therefore no access to research and information to help them make informed health care decisions. That project is getting ready to boil over. The PAI has a growing offline membership that need to network and connect. Karyn E. , RN Founder / Executive Director Pancreatitis Association International Corp. Office: Indps, IN, USA 1- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 In a message dated 12/28/2002 6:35:30 PM US Eastern Standard Time, Rattpack1@... writes: > >>> After a ... $2500 consultation ... cannot find anything anatomically > wrong with her. yet he wants to do a Sphincterotomy (sp) stint placement. < > << >>>he sees no benefit from enzymes, antioxidant therapy and the low-no fat diet.<<< >>>Cassie is really down too about it. She does not want stint placement. She says she would rather have Pancreatectomy with islet transplant< Patty, Thanks for sharing that letter with us. I am very curious what his wording is in regard to his findings and recommendations. Generally speaking a physician will chart there are no abnormalities in one area when there are abnormalities in another area. Otherwise, they don't usually specify any particular area of the exam. To state that there are not anatomical abnormalities of the pancreas, leaves me hearing a silent, " ...but there are... " If the anatomy is okay, then is there a problem on the cellular level? We encourage everyone to be a part of the health care team, and if they do not understand the language or rational of the care plan interventions or goals, keep asking the doctor, " Now, tell me one more time, why do you want to do surgery when there is nothing wrong to fix? I really have a problem with children not being adequately medicated if they are in pain. It's barbaric. I have learn to judge whether a doctor is proactive in the treatment of Pancreatitis based on their understanding of the role diet and supplements play in the healing process. Anybody with a GI disorder would benefit from a low fat diet and antioxidants. It is scary to know how many people do not have computers and therefore no access to research and information to help them make informed health care decisions. That project is getting ready to boil over. The PAI has a growing offline membership that need to network and connect. Karyn E. , RN Founder / Executive Director Pancreatitis Association International Corp. Office: Indps, IN, USA 1- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Karyn, We're one step ahead of you . My husband and I have an appointment with her PCP on the 9th to discuss these findings. We're working on a lettter and a long list of questions were sending ahead of time. I'm also printing off information from various on line sources everyone here has supplied us. If I can't back what I have learned they don't want ot hear it. The fact that I have access to many people who have experienced pancreatitis for years and can point me in the right direction reall makes them angry. I have invited all her Dr's to come join the site and see what people with CP are really experiencing. Also suggested it to school. I also intend to ask him if he still wants to treat her. She had urine tests in November and I still don't know the results. I've called Twice and no response. I also had questions regarding her diet after discovering she had SPINK1. After the visit with her PCP I'm going to start the same thing with GI Dr.s. Answer my questions here are the fact that I have found to back things up. Karyn do you know of any organization that would be able to come up with dietary guidelines for her. We went to a nutritionalist here and it was a total disaster. Dietician did'n't know what pancreatitis was. Had to wait 25 minutes for the Dr to get done with his patient to explain to her what it was. Then for 15 minutes she read out of a book. Told me to reduce Cassie's fat to only 25% I had already done that on my own and it didn't help so... taking it down to 25% made no sense to me, I keep her between 10 and 15% a day. Also never mentioned at that time any nutritional supplements at all, not even anti-oxident therapy. With this SPINK1 thing now and what I I understand about the processes of it I also have to reduce her protien, So know what do I feed her. As far as her pain goes I have been trying to get her relief. Today things have started to act up again, She has her period. They want to send us back to Boston so we can go to pain management down there. Big talk about bio feedback therapy, also I should think about psyciatric(sp) help for her if her levels aren't elevated she must be faking. We don't really want to take her down there, besides being very time consuming, for all of us, she misses enough school with out haveing to go to Boston. The big city scares her quite a bit which makes her ADHD that much more obvious. I was 1st told that there were no pain mgmt Dr's specializing in pediatric pain. Then no on here experienced with pain associated to CP. I've proved them wrong on both counts and have found two different Dr's with experience with CP and they are both ore than willing to review her records and if they think they can help her, they'll treat her. Only thing is, they won't do it without a referral. We try our best to releive her pain any way we can. I have these heating packs filled with rice and lavender that we heat up in the micro way. Doesn't take her pain away but it does relax her enough that she's not writhing in pain. Karyn, thanks for your reply. Hugs Patty in Bangor ME Quote Link to comment Share on other sites More sharing options...
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