Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 " But if her enzymes hardly elevate and I really haven't seem them elevated in over a year, I think, would have to look at her records for sure. Why would he tell me she is definitely not in a flare up cuz of the enzymes not being elevated?, cuz they really don't elevate anymore. " I will tell you what I know and what I think. Becareful, I live 10,000 miles away and am no doctor, just a very experienced pancreatic patient with Chronic Pancreatitis! My enzymes are never? elevated and I seldom have acute attacks after more than 7 years. I " believe " there may be two reasons for this. First is that I have between 1/3 and 1/2 of my original pancreas left after attrophy and scar tissue. Secondly, and this is one I have only just thort about recently. When I had the proginal attack my amylase was 1600 over a normal range of something like 40 to 120, but over 200 is considered a pancreatic attack I think. Now then I was eating anything I liked and had no consideration for anything which may have upset the pancreas. These days I am so aware of everything that MIGHT upset my panc that IF an acute attack happens, then it is just enuff to upset the pancreas and there may not be an enzyme reaction to it seeing there are not all the other contributing factors. FINALLY, my principle Specialist is my surgeon whom I have had since day one. He has a greta saying and these are his words. If the amylase is raised, you are having a pancreatic attack If you are having a pancreatic attack, the amylase may not be elevated. Now I just wish all doctors would understand this. I wish that it was included in the latest ER manuals under aggravated chronic pancreatic conditions cos when I have an episode, my enzymes are never elevated and have never been for years. I have been sent home from A&E, our version of ER, with a catogorical statement from a doctor that i am not having a pancreatic attack cos the amylase was not raised. I get furious, but am totally unable to fight in my debilitated state, and I suspect they would treat a mother with equal disdain for being emotionally involved. SUGGESTION: You HAVE TO KEEP LOOKING til you find a suitable principle supervising Specialist, be it a GI, Surgeon, whatever.. you need one who has an understanding and epathetic approach to the case and you can develop a " personal " relationship with them. I have two for me, the Surgeon and my Diabetes Specialist. I consider myself extremely lucky. This search is very important and perhaps needs to be pursued under the " guise " of seeking second opinions. This is your right and all doctors must accept it, but when you find the right specialist hang onto them, get them on email and deal straight with them. Have a nice day! We have a 5 year old girl in our Support Group and she is a wonderful child. Not one of the other members would accept care ahead of her if it is possible to cure her for a normal life. That you can be assured, everyone who truely knows about panc will bend over backwards to assist a young person afflicted with this condition! Regards Marmite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 " But if her enzymes hardly elevate and I really haven't seem them elevated in over a year, I think, would have to look at her records for sure. Why would he tell me she is definitely not in a flare up cuz of the enzymes not being elevated?, cuz they really don't elevate anymore. " I will tell you what I know and what I think. Becareful, I live 10,000 miles away and am no doctor, just a very experienced pancreatic patient with Chronic Pancreatitis! My enzymes are never? elevated and I seldom have acute attacks after more than 7 years. I " believe " there may be two reasons for this. First is that I have between 1/3 and 1/2 of my original pancreas left after attrophy and scar tissue. Secondly, and this is one I have only just thort about recently. When I had the proginal attack my amylase was 1600 over a normal range of something like 40 to 120, but over 200 is considered a pancreatic attack I think. Now then I was eating anything I liked and had no consideration for anything which may have upset the pancreas. These days I am so aware of everything that MIGHT upset my panc that IF an acute attack happens, then it is just enuff to upset the pancreas and there may not be an enzyme reaction to it seeing there are not all the other contributing factors. FINALLY, my principle Specialist is my surgeon whom I have had since day one. He has a greta saying and these are his words. If the amylase is raised, you are having a pancreatic attack If you are having a pancreatic attack, the amylase may not be elevated. Now I just wish all doctors would understand this. I wish that it was included in the latest ER manuals under aggravated chronic pancreatic conditions cos when I have an episode, my enzymes are never elevated and have never been for years. I have been sent home from A&E, our version of ER, with a catogorical statement from a doctor that i am not having a pancreatic attack cos the amylase was not raised. I get furious, but am totally unable to fight in my debilitated state, and I suspect they would treat a mother with equal disdain for being emotionally involved. SUGGESTION: You HAVE TO KEEP LOOKING til you find a suitable principle supervising Specialist, be it a GI, Surgeon, whatever.. you need one who has an understanding and epathetic approach to the case and you can develop a " personal " relationship with them. I have two for me, the Surgeon and my Diabetes Specialist. I consider myself extremely lucky. This search is very important and perhaps needs to be pursued under the " guise " of seeking second opinions. This is your right and all doctors must accept it, but when you find the right specialist hang onto them, get them on email and deal straight with them. Have a nice day! We have a 5 year old girl in our Support Group and she is a wonderful child. Not one of the other members would accept care ahead of her if it is possible to cure her for a normal life. That you can be assured, everyone who truely knows about panc will bend over backwards to assist a young person afflicted with this condition! Regards Marmite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2002 Report Share Posted December 24, 2002 Thanks Karyn, I think it is a great idea for the PAI to do that for our children. Although, at this time, I do not need a letter. I am homeschooling Jackie and this is working good. These school boards can be a pain to parents and I am sure a letter will help when dealing with them. Thanks again, > I want to offer any support the PAI can provide in providing education to the > schools. Sometimes it has been helpful to have the PAI write formal letters > on letterhead to address or support the care plan the interdisciplinary team > feels she needs. Sometimes, a formal letter from a professional organization > (as we are :-) can let them know that this disease is serious and that the > symptoms, though not noticeable or measurable are real and need to be > addressed in the overall scholastic treatment plan. > > Depending on where people live, one service some areas have is to provide > inservice education to groups. > > I just want to help anyway we can. I am following along the guideline of the > American Diabetes Association youth advocacy projects. > > 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...
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