Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Barbara, thanks for the info...I do know she has a fatty acid disorder just dont know which one exactly..whatever it is it is secondary so who knows if we will know. I suppose this is reflected also in the malabsorption. On the umdf website it states that there is an inability to make pancreatic enzymes. she had a incredibly high fat content in stool samples. she has taken pancreatic enzymes since she was 3 she is 13 now...guess they arent working anymore. thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Alice, thanks for the reply.. I will have to ask her about the ringing in the ears...Ill let you know Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 In a message dated 10/21/2004 1:22:04 PM Eastern Standard Time, wheatchild@... writes: Dr. Ingrid Tein has suggested that episodes of metabolic decompensation may put patients at risk for developing pancretitis. I believe pancretitis has also been reported in OXPHOS disorders, but I cannot recall a particular case right now. Hi Barbara, Has Dr Tein published anything on this? This is the first time I have heard this. Thanks. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 , I can't reply to the pancreas question. I'm sorry about that. About hearing loss - I can definitely try to answer. It's really hard to say whether her hearing issues are related to Mito but we all know that hearing loss and mito go together. Sometimes this can be due to pressure in the ear and/or wax. Sometimes it can even be due to constricting blood vessels. It's something that a good otolaryngologist or otologist should look into. Fluctuating hearing loss is one of the hardest things to trace and also hard to deal with. Mine fuctuated before I lost it. My oldest daughter is dealing with the same thing only her's goes in both ears and she has the constant worry that it won't return. She's an adult. Does your daughter say she has any ringing or noise in the ear as the hearing is going? Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 , I can't reply to the pancreas question. I'm sorry about that. About hearing loss - I can definitely try to answer. It's really hard to say whether her hearing issues are related to Mito but we all know that hearing loss and mito go together. Sometimes this can be due to pressure in the ear and/or wax. Sometimes it can even be due to constricting blood vessels. It's something that a good otolaryngologist or otologist should look into. Fluctuating hearing loss is one of the hardest things to trace and also hard to deal with. Mine fuctuated before I lost it. My oldest daughter is dealing with the same thing only her's goes in both ears and she has the constant worry that it won't return. She's an adult. Does your daughter say she has any ringing or noise in the ear as the hearing is going? Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 In a message dated 10/21/2004 11:03:07 AM Eastern Standard Time, MitomomX3@... writes: My daughters doc called yesterday and said her pancreas is inflamed..is this a mito thing..she also has malabsorption and I know that is the pancreas... Hi , I have had chronic pancreatitis for the past 7 yrs. It is thought to be secondary to the motility issues that I have in my gut, but I often wonder if it's just part of the mito itself. Does she have gastroparesis? I have heard that giving selenium can help patients in patients with acute pancreatitis, especially if selenium levels are low to begin with. Some articles below might help your doctor..... Malisa Trop Gastroenterol. 2004 Apr-Jun;25(2):69-72. _Related Articles,_ (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Display&dopt=pubmed\ _pubme d&from_uid=15471319) _Links_ (javascript:PopUpMenu2_Set(Menu15471319) Micronutrient antioxidant intake in patients with chronic pancreatitis. Bhardwaj P, Thareja S, Prakash S, Saraya A. Department of Gastroenterology and Human Nutrition Unit, All India Institute of Medical Sciences, New Delhi, India. Increased oxidative stress has been postulated to be an important mechanism in the pathophysiology of chronic pancreatitis (CP). Micronutrient deficiency may increase the oxidative stress as they assist in free radical clearance. The present study was undertaken to assess the intake of micronutrients, i.e. vitamins E and C, carotene, selenium, copper, zinc, manganese, magnesium, sulphur, riboflavin, methionine and choline in patients with CP. All consecutive patients with CP attending the Pancreas Clinic at the All India Institute of Medical Sciences were enrolled in the study. The usual dietary intake was estimated by the 24-hour dietary recall method and food frequency questionnaire. Dietary restrictions, if any, were also noted. The micronutrient intake of patients not on any nutritional supplements (n=75, 65 males and 10 females, mean age 31.06 +/- 10.64 years) was compared with age- and sex- matched healthy controls (n=75). The micronutrients were calculated as per the Nutritive value of Indian Foods given by the National Institute of Nutrition, Indian Council of Medical Research, India and the US dietary intake guidelines as applicable. It was found that the Body Mass Index (BMI) of patients was significantly lower than that of healthy controls. The total intake in terms of calorie was lower in patients when compared to controls. The dietary intake of vitamin E, riboflavin, choline, magnesium, copper manganese and sulfur was significantly lower than that of controls as well as the Recommended Dietary Allowance (RDA). Dietary intake of selenium and vitamin C was within the limits of the RDA but was lower than that of controls, while the intake of carotene was similar in both the groups and met the RDA. We conclude that patients with CP had significantly decreased micronutrient intake owing to diet modification due to pain. Micronutrient deficiency might contribute to increased oxidative stress in these patients. ======================== Re: pancreatic disease (endocrine and exocrine dysfunction in > mitochondrial > disease) - > 1. Leshinsky-Silver E. Levine A. Nissenkorn A. Barash V. Perach M. > Buzhaker > E. Shahmurov M. Polak-Charcon S. Lev D. > Lerman-Sagie T. Neonatal liver failure and Leigh syndrome possibly due to > CoQ-responsive OXPHOS deficiency. Molecular Genetics & Metabolism. > 79(4):288-93, 2003; > 2. Liou CW. Huang CC. Lin TK. Tsai JL. Wei YH. Correction of pancreatic > beta-cell dysfunction with coenzyme Q(10) in a patient with mitochondrial > encephalomyopathy, lactic acidosis and stroke-like episodes syndrome and > diabetes mellitus. European Neurology. 43(1):54-5, 2000; > 3. Odawara M. Yamashita K. Mitochondrial gene abnormalities and alpha- and > beta-cell dysfunction. Diabetes Care. 19(10):1166-7, 1996; > 4. Oexle K. Oberle J. Finckh B. Kohlschutter A. Nagy M. Seibel P. Seissler > J. Hubner C. Islet cell antibodies in diabetes mellitus associated with a > mitochondrial tRNA(Leu(UUR)) gene mutation. Experimental & Clinical > Endocrinology & Diabetes. 104(3):212-7, 1996. > 5. Onishi H. Hanihara T. Sugiyama N. Kawanishi C. Iseki E. Maruyama Y. > Yamada Y. Kosaka K. Yagishita S. Sekihara H. Satoh S. Pancreatic exocrine > dysfunction associated with mitochondrial tRNA(Leu)(UUR) mutation. Journal > of Medical Genetics. 35(3):255-7, 1998; > 6. Otabe S. Yasuda K. Mori Y. Shimokawa K. Kadowaki H. Jimi A. Nonaka K. > Akanuma Y. Yazaki Y. Kadowaki T. Molecular and histological evaluation of > pancreata from patients with a mitochondrial gene mutation associated with > impaired insulin secretion. Biochemical & Biophysical Research > Communications. 259(1):149-56, 1999; > 7. Toyono M. Nakano K. Kiuchi M. Imai K. Suzuki H. Shishikura K. Osawa M. > Shiratori K. Goto Y. Nonaka I. Sugie H. A case of MERRF associated with > chronic pancreatitis. Neuromuscular Disorders. 11(3):300-4, 2001; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Malisa, she has no gut dysmotility. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 , I'm not sure on the pancreatic thing but I know Malisa has problems with this so maybe she will reply. I'm thinking it relates to the whole slow gastric motil,ity thing, as there can be trouble with the pancreatic and gall bladder ducts as well as the alimentary tube intself with these problems.Malabsorbtion problems can relate to bacterial overgrowth problems which commonly come with slow moility of the gut. Is your daughtrer treated with antibiotics to treat bacterial overgrowth.This helps slow the development of malabsorption problems. Celia -- In , MitomomX3@a... wrote: > Hello everyone, > I have a question..o.k. maybe three.. > My daughters doc called yesterday and said her pancreas is inflamed..is this > a mito thing..she also has malabsorption and I know that is the > pancreas...wonder if that is realted..the UMDF site says that there can be a problem with > pancreatic enzymes..but it doesnt say much more than that.. > also my oldest girl tells me she intermittently losses hearing in one ear. > Have any of you experience with this...she said her hearing will be fine than > it just goes out and returns later. > no pain involved and no infection. There is no ear wax to blame so I wonder > if this may progress. > thanks for any input.. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi, Celia I didn't know bacterial overgrowth was treated with an antibiotic. Interesting. The antibiotic only kills the bad bacteria, and not the good ones? I don't quite understand it. I thought taking antibiotics could lead to a yeast overgrowth, because the antibiotic killed off too many digestive bacteria, so I am surprised that antibiotics are good for returning bacteria back to good balance. Has anyone had good luck with this treatment? Regards, all Sunny > > , I'm not sure on the pancreatic thing but I know Malisa has > problems with this so maybe she will reply. I'm thinking it relates > to the whole slow gastric motil,ity thing, as there can be trouble > with the pancreatic and gall bladder ducts as well as the alimentary > tube intself with these problems.Malabsorbtion problems can relate to > bacterial overgrowth problems which commonly come with slow moility > of the gut. Is your daughtrer treated with antibiotics to treat > bacterial overgrowth.This helps slow the development of malabsorption > problems. Celia > > -- In , MitomomX3@a... wrote: > > Hello everyone, > > I have a question..o.k. maybe three.. > > My daughters doc called yesterday and said her pancreas is > inflamed..is this > > a mito thing..she also has malabsorption and I know that is the > > pancreas...wonder if that is realted..the UMDF site says that there > can be a problem with > > pancreatic enzymes..but it doesnt say much more than that.. > > also my oldest girl tells me she intermittently losses hearing in > one ear. > > Have any of you experience with this...she said her hearing will be > fine than > > it just goes out and returns later. > > no pain involved and no infection. There is no ear wax to blame so > I wonder > > if this may progress. > > thanks for any input.. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Pancretitis has been associated with some disorders of fat metabolism. Dr. Ingrid Tein has suggested that episodes of metabolic decompensation may put patients at risk for developing pancretitis. I believe pancretitis has also been reported in OXPHOS disorders, but I cannot recall a particular case right now. Barbara > Hello everyone, > I have a question..o.k. maybe three.. > My daughters doc called yesterday and said her pancreas is inflamed..is this > a mito thing..she also has malabsorption and I know that is the > pancreas...wonder if that is realted..the UMDF site says that there can be a problem with > pancreatic enzymes..but it doesnt say much more than that.. > also my oldest girl tells me she intermittently losses hearing in one ear. > Have any of you experience with this...she said her hearing will be fine than > it just goes out and returns later. > no pain involved and no infection. There is no ear wax to blame so I wonder > if this may progress. > thanks for any input.. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I thought this was probably the daughter with the secondary fatty acid disorder. I sure hope she gets better soon. Bless your heart, you've had more than your share of problems recently. Take care, Barbara > Barbara, > thanks for the info...I do know she has a fatty acid disorder just dont know > which one exactly..whatever it is it is secondary so who knows if we will > know. > I suppose this is reflected also in the malabsorption. > On the umdf website it states that there is an inability to make pancreatic > enzymes. > she had a incredibly high fat content in stool samples. > she has taken pancreatic enzymes since she was 3 she is 13 now...guess they > arent working anymore. > thanks again > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Yes. Here is one case pasted below. Barbara J Pediatr. 1994 Jun;124(6):938-40. Carnitine palmitoyltransferase II deficiency: a new cause of recurrent pancreatitis. Tein I, Christodoulou J, Donner E, McInnes RR. Division of Neurology, Hospital for Sick Children, Toronto, Ontario, Canada. An 18-year-old female patient had a history of recurrent pancreatitis after prolonged periods of exercise coupled with a high- fat diet at the ages of 12 and 15 years. After the onset of recurrent myoglobinuria when she was 16 years old, deficiency of carnitine palmitoyltransferase type II (32% residual activity) was diagnosed on the basis of cultured skin fibroblasts. We conclude that deficiency of carnitine palmitoyltransferase type II may be a cause of pancreatitis and should be considered in the differential diagnosis, even in the absence of overt myoglobinuria. For more details on the case not included in the abstract, visit http://www.spiralnotebook.org/samedifference/index.html > > In a message dated 10/21/2004 1:22:04 PM Eastern Standard Time, > wheatchild@n... writes: > > Dr. Ingrid Tein has suggested that episodes of metabolic > decompensation may put patients at risk for developing pancretitis. > I believe pancretitis has also been reported in OXPHOS disorders, > but I cannot recall a particular case right now. > > > > > Hi Barbara, > Has Dr Tein published anything on this? This is the first time I have heard > this. > Thanks. > Malisa > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 In a message dated 10/21/2004 4:36:38 PM Eastern Standard Time, wheatchild@... writes: Yes. Here is one case pasted below. Thank you, Barbara! Malisa Quote Link to comment Share on other sites More sharing options...
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