Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Were you at the Mito conference last month? We were there and I thought it was really helpful and well put together. Cohen is already talking about putting on part two! told him to let her get back settled-she is such a great person and has been such a blessing to us through all of Audreys hospitalizations! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Were you at the Mito conference last month? We were there and I thought it was really helpful and well put together. Cohen is already talking about putting on part two! told him to let her get back settled-she is such a great person and has been such a blessing to us through all of Audreys hospitalizations! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Were you at the Mito conference last month? We were there and I thought it was really helpful and well put together. Cohen is already talking about putting on part two! told him to let her get back settled-she is such a great person and has been such a blessing to us through all of Audreys hospitalizations! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 brandon Wells wrote: > Were you at the Mito conference last month? Yes I was, I worked at the reception table for a while. I was the one withthe southern accent. I was in the second row on the left up front. > We were there and I thought it was really helpful and well put together. Yes I thought it was great. He was very positive and informative. It was a wonderful presentation for his patients and would be great if every family that got a mito diagnosis could attend. I was very appreciative of both his and Hillary's effort to do that for all of his patients. He is definately a dedicated doc. > Cohen is already talking about putting on part two! That would be great. I know that he is also looking forward to the UMDF conference there next year. But I would be equally interested in part II of his presentation. Have you heard anything about the video? Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 brandon Wells wrote: > Were you at the Mito conference last month? Yes I was, I worked at the reception table for a while. I was the one withthe southern accent. I was in the second row on the left up front. > We were there and I thought it was really helpful and well put together. Yes I thought it was great. He was very positive and informative. It was a wonderful presentation for his patients and would be great if every family that got a mito diagnosis could attend. I was very appreciative of both his and Hillary's effort to do that for all of his patients. He is definately a dedicated doc. > Cohen is already talking about putting on part two! That would be great. I know that he is also looking forward to the UMDF conference there next year. But I would be equally interested in part II of his presentation. Have you heard anything about the video? Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 brandon Wells wrote: > Were you at the Mito conference last month? Yes I was, I worked at the reception table for a while. I was the one withthe southern accent. I was in the second row on the left up front. > We were there and I thought it was really helpful and well put together. Yes I thought it was great. He was very positive and informative. It was a wonderful presentation for his patients and would be great if every family that got a mito diagnosis could attend. I was very appreciative of both his and Hillary's effort to do that for all of his patients. He is definately a dedicated doc. > Cohen is already talking about putting on part two! That would be great. I know that he is also looking forward to the UMDF conference there next year. But I would be equally interested in part II of his presentation. Have you heard anything about the video? Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 No, I haven't hard a thing about the video. Cohen said the UMDF conference was going to be held at the IX center next summer. Have you heard about that clnical trial that's supposed to be in the next UMDF newsletter? I can't remember the name but it's a nucleatide that's supposd to help with the function of the respiratory chain complex. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 No, I haven't hard a thing about the video. Cohen said the UMDF conference was going to be held at the IX center next summer. Have you heard about that clnical trial that's supposed to be in the next UMDF newsletter? I can't remember the name but it's a nucleatide that's supposd to help with the function of the respiratory chain complex. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 , I don't think anyone is trying to ostracize you or rebut what you said. The original post was about Dr. Cohen and a question was asked. --------------------- From: bjawells@... (brandon Wells) Hi! Just wondering how many others out there are seeing Dr. Cohen at the Cleveland Clinic? We were lucky to meet him because she was hospitalized there so many times with seizures-then he decided to test her for mito. Thanks Jill ------------------------------- You commented as is your right, but so did others..... I am sorry that you have not had a positive experience, and it is definitely your right to acknowledge your thoughts about it, just as it is our right to acknowledge our experience or answer the question according to our experience. Please don't take it personally, as I am sure that no one intended for their comments to be taken that way. A question was asked and several people answered it, that's all. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 perhaps Re: Dr. Cohen , I don't think anyone is trying to ostracize you or rebut what you said. The original post was about Dr. Cohen and a question was asked. --------------------- From: bjawells@... (brandon Wells) Hi! Just wondering how many others out there are seeing Dr. Cohen at the Cleveland Clinic? We were lucky to meet him because she was hospitalized there so many times with seizures-then he decided to test her for mito. Thanks Jill ------------------------------- You commented as is your right, but so did others..... I am sorry that you have not had a positive experience, and it is definitely your right to acknowledge your thoughts about it, just as it is our right to acknowledge our experience or answer the question according to our experience. Please don't take it personally, as I am sure that no one intended for their comments to be taken that way. A question was asked and several people answered it, that's all. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Jeannine, Actually I am very certain Dr. Cohen is interested in the connection between ADHD and mito. You probably never knew that as it wasn't something you had an interest in. And as far as I know many of the other mito specialists are too. So I'll just continue to be persistent in my quest for care. I can be very assertive and persistent if necessary as you know. And if you can't succeed one way then go at it another. As you can tell, I'm not the type to give up easily. And I'm sure Dr. Cohen would like to think his expertise could help anyone who needed help whether you were his patient or not. I doubt he figures anyone who isn't his patient is any less important or in need of help for their illnesses. And as everyone on this list knows many many with mito disorders are not diagnosed yet. When you are as kind and caring and intelligent a man as that you would want to help anyone you could. After all, he doesn't have time to treat the whole world, does he? He sounds like a humble man too-that is admirable. But I'll bet he is flattered that many people would be interested and benefit from his work and knowledge. Thanks so much for your reply. S. Dr. Cohen > > > wrote: > >> I also know now that perhaps it would be helpful for me to let him know the >> reason I thought he may be interested in our family is because of the >> possible connection between mito and ADHD which someone else suggested he >> may be interested in. > >,. > >I may be wrong, but as far as I know, Dr. Cohen doesn't have any special interest in ADHD and mito. I've >never heard that before. He does specialize in metabolic/mitochondrial disease in children and does see >adults with a confirmed diagnosis, as said. But in all the years that he has been involved in >Caitlin's care, I've not ever heard of any interest in ADHD. > >It was Dr. Shoffner that told me that he frequently saw ADD or ADHD in siblings of those children that he >saw in him mitochondrial evaluation. Could that be what you are thinking about? > >> Do you or does anyone on this list know how to get video or written >> information from his conferance for those of us who were not able to be >> there in person? > >They are working on the video from the conference, but it is probably several weeks away. Dr. Cohen also >stressed that this was not intended to be a national conference, but merely something that he was doing >for the benefit of his patients. He really kind of down played it. But as soon as I hear anything about >the video, I will be sure to let you know. > >Jeannine > > > >------------------------------------------------------------------------ >Have you entered ONElist's " Grow to Give " program? >http://www.onelist.com >Deadline is June 19. Join now to win $5000 for your charity of choice. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Jeannine, Actually I am very certain Dr. Cohen is interested in the connection between ADHD and mito. You probably never knew that as it wasn't something you had an interest in. And as far as I know many of the other mito specialists are too. So I'll just continue to be persistent in my quest for care. I can be very assertive and persistent if necessary as you know. And if you can't succeed one way then go at it another. As you can tell, I'm not the type to give up easily. And I'm sure Dr. Cohen would like to think his expertise could help anyone who needed help whether you were his patient or not. I doubt he figures anyone who isn't his patient is any less important or in need of help for their illnesses. And as everyone on this list knows many many with mito disorders are not diagnosed yet. When you are as kind and caring and intelligent a man as that you would want to help anyone you could. After all, he doesn't have time to treat the whole world, does he? He sounds like a humble man too-that is admirable. But I'll bet he is flattered that many people would be interested and benefit from his work and knowledge. Thanks so much for your reply. S. Dr. Cohen > > > wrote: > >> I also know now that perhaps it would be helpful for me to let him know the >> reason I thought he may be interested in our family is because of the >> possible connection between mito and ADHD which someone else suggested he >> may be interested in. > >,. > >I may be wrong, but as far as I know, Dr. Cohen doesn't have any special interest in ADHD and mito. I've >never heard that before. He does specialize in metabolic/mitochondrial disease in children and does see >adults with a confirmed diagnosis, as said. But in all the years that he has been involved in >Caitlin's care, I've not ever heard of any interest in ADHD. > >It was Dr. Shoffner that told me that he frequently saw ADD or ADHD in siblings of those children that he >saw in him mitochondrial evaluation. Could that be what you are thinking about? > >> Do you or does anyone on this list know how to get video or written >> information from his conferance for those of us who were not able to be >> there in person? > >They are working on the video from the conference, but it is probably several weeks away. Dr. Cohen also >stressed that this was not intended to be a national conference, but merely something that he was doing >for the benefit of his patients. He really kind of down played it. But as soon as I hear anything about >the video, I will be sure to let you know. > >Jeannine > > > >------------------------------------------------------------------------ >Have you entered ONElist's " Grow to Give " program? >http://www.onelist.com >Deadline is June 19. Join now to win $5000 for your charity of choice. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 In a message dated 99-06-07 08:22:52 EDT, you write: << Well let me know what you find out , this is interesting! My oldest child has ADD and is on medication for that. We've discussed this many times and this is what lead me to the conclusion, because he has never commented that it was a concern of his. But I may be wrong. >> Dear Jeannine: I have met Dr. Cohen a few times, the most recent being the last Mito-Conference held in PA. At that time I mentioned to Dr. Cohen that I was getting a lot of calls from families with mitochondrial patients who clearly had ADHD symptoms (I knew them because our own son, who happends to be adopted, had ADHD). I asked him if he thought there might be a connection between mito-disease and ADHD. He told me that he suspected that this was the case and that he was seeing more and more mito-cases which included ADHD. At the time I was Founder/Director of MDFA (Mitochondrial Disorders Foundation of America, the first non-profit mito-foundation designed to serve people with varying forms mitochondrial disease). I had an MDFA member from Canada whos child had a mito disorder and strongly exhibited ADHD symptoms. At that time Dr. Cohen told me he was interested in pursueing the connection 'tween mito & ADHD. On a side note it would be interesting to look on the list that Dr. Naviaux (UCSD's Mitochondrial and Metabolic Disease Center) produced and published in the Ex. Parent Magizine a couple years ago in their Mitochondrial series refering to the " Spectrum of Mitochondrial Disease " . On this list things such as Lupis are included. I think we will eventually see a connection- after all mito is motabolism and energy at its most basic, and ADHD is a brain chemical issue NOT a behavioral issue. I, personally can't wait till they find the connection. Won't that make life so much better for all!? Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Well let me know what you find out , this is interesting! My oldest child has ADD and is on medication for that. We've discussed this many times and this is what lead me to the conclusion, because he has never commented that it was a concern of his. But I may be wrong. As far as him not caring about people that aren't his patients, that isn't the case. I am sure that he does care very much. But he has a busy schedule, and many many patients of his own. He works long hours and has a young family and there just aren't enough hours in the day for him to be available to everyone. He just has a basic policy of being available for consult for is patients - that is all I meant. He does however consult with physicians, and he is still taking new patients. The reason that I can comment in this regard, is that I asked him specifically about phone calls and contacts that he gets. This is when he clarified. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Well let me know what you find out , this is interesting! My oldest child has ADD and is on medication for that. We've discussed this many times and this is what lead me to the conclusion, because he has never commented that it was a concern of his. But I may be wrong. As far as him not caring about people that aren't his patients, that isn't the case. I am sure that he does care very much. But he has a busy schedule, and many many patients of his own. He works long hours and has a young family and there just aren't enough hours in the day for him to be available to everyone. He just has a basic policy of being available for consult for is patients - that is all I meant. He does however consult with physicians, and he is still taking new patients. The reason that I can comment in this regard, is that I asked him specifically about phone calls and contacts that he gets. This is when he clarified. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Alrighty Jeannine. I will let you know anything I find out. I didn't realize you had a child with ADD. Is it a boy or girl and is it hypo or hyper type and what kind of medication if you don't mind answering these questions. Have you or anyone on this list ever heard of the Amen Clinic or Dr. Amen? Group, Today is the surgeon for the mammogram and of course, I have a sick kid, never fails, does it? Feel like a loony tune going back and forth between it's probably nothing and I will look like a fool for even worrying, I'll probably be dieing and if so trying all the positive approachs in my mind and then all the negative approachs emerge, and back to I'm sure there is nothing really more than a few cysts they will aspirate or remove and that will be it and all this worry will be for nothing- so I will be most happy to have the next few weeks over with I'm sure. I know I'm not unique in this situation no matter which way it goes. And I'm sure this is one of those talk to him today, come back in a few weeks for the biopsy stuff, another few weeks to hear from the lab, etc. By then I will be full blown mentally off the globe, right? Thanks for all the support by all of you & the prayers by whoever leans that way too. S. I've even thought of a lot of jokes for this situation. I told my daughter last night after all the long weeks they have taken to tend to this the final thing they will tell me is they have finally got it diagnosed and are very surprized to find this is one of those extremely rapid growing types, etc. We laughed at life and doctors and ourselves. My 2 daughters and I also make the joke maybe we will get some boobs out of this if I end up getting a mastectomy and then they will need to to protect themselves so they will do the same, ha ha ha. (We're all small chested.) There is always something to laugh at even if it is only your own stupidity. Re: Dr. Cohen > > >Well let me know what you find out , this is interesting! My >oldest child has ADD and is on medication for that. We've discussed >this many times and this is what lead me to the conclusion, because he >has never commented that it was a concern of his. But I may be wrong. > >As far as him not caring about people that aren't his patients, that >isn't the case. I am sure that he does care very much. But he has a >busy schedule, and many many patients of his own. He works long hours >and has a young family and there just aren't enough hours in the day >for him to be available to everyone. He just has a basic policy of >being available for consult for is patients - that is all I meant. He >does however consult with physicians, and he is still taking new >patients. > >The reason that I can comment in this regard, is that I asked him >specifically about phone calls and contacts that he gets. This is >when he clarified. > >Good luck, >Jeannine > > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of nearly 160,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 Alrighty Jeannine. I will let you know anything I find out. I didn't realize you had a child with ADD. Is it a boy or girl and is it hypo or hyper type and what kind of medication if you don't mind answering these questions. Have you or anyone on this list ever heard of the Amen Clinic or Dr. Amen? Group, Today is the surgeon for the mammogram and of course, I have a sick kid, never fails, does it? Feel like a loony tune going back and forth between it's probably nothing and I will look like a fool for even worrying, I'll probably be dieing and if so trying all the positive approachs in my mind and then all the negative approachs emerge, and back to I'm sure there is nothing really more than a few cysts they will aspirate or remove and that will be it and all this worry will be for nothing- so I will be most happy to have the next few weeks over with I'm sure. I know I'm not unique in this situation no matter which way it goes. And I'm sure this is one of those talk to him today, come back in a few weeks for the biopsy stuff, another few weeks to hear from the lab, etc. By then I will be full blown mentally off the globe, right? Thanks for all the support by all of you & the prayers by whoever leans that way too. S. I've even thought of a lot of jokes for this situation. I told my daughter last night after all the long weeks they have taken to tend to this the final thing they will tell me is they have finally got it diagnosed and are very surprized to find this is one of those extremely rapid growing types, etc. We laughed at life and doctors and ourselves. My 2 daughters and I also make the joke maybe we will get some boobs out of this if I end up getting a mastectomy and then they will need to to protect themselves so they will do the same, ha ha ha. (We're all small chested.) There is always something to laugh at even if it is only your own stupidity. Re: Dr. Cohen > > >Well let me know what you find out , this is interesting! My >oldest child has ADD and is on medication for that. We've discussed >this many times and this is what lead me to the conclusion, because he >has never commented that it was a concern of his. But I may be wrong. > >As far as him not caring about people that aren't his patients, that >isn't the case. I am sure that he does care very much. But he has a >busy schedule, and many many patients of his own. He works long hours >and has a young family and there just aren't enough hours in the day >for him to be available to everyone. He just has a basic policy of >being available for consult for is patients - that is all I meant. He >does however consult with physicians, and he is still taking new >patients. > >The reason that I can comment in this regard, is that I asked him >specifically about phone calls and contacts that he gets. This is >when he clarified. > >Good luck, >Jeannine > > >------------------------------------------------------------------------ >Looking for a new hobby? Want to make a new friend? >http://www.onelist.com >Come join one of nearly 160,000 e-mail communities at ONElist! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 wrote: > I didn't realize you had a child with ADD. Is it a boy or girl and is it hypo or hyper type > and what kind of medication if you don't mind answering these questions. > Have you or anyone on this list ever heard of the Amen Clinic or Dr. Amen? , Dalton is 20 yrs old, ADD, LD, and Presumed Complex IV (have you ever noticed my signature?). He is hypoactive and was presumed to have narcolepsy as well. He took Cylert for years with a fair improvement in his symptoms; he took Ritalin for about a year in junior high, with not much success because it wore off too quickly. Combination of Ritalin and Cylert for a short period of time, with no success as the narcolepsy symptoms worsened along with the hypoactive symptoms. He was then switched to Dexedrene, a combination of long acting as well as short acting and literally came to life. He is like a different kid and has done well on it since then. He will likely take the dexedrene the rest of his life. No I haven't heard of the Amen clinic. Jeannine, mom to Dalton, 20 yrs, ADD, LD, Presumed Complex IV Genny, 17 yrs, Dysautonomia, Presumed Complex IV Caitlin, 11 yrs, Dysautonomia, CIDP, Complex IV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 1999 Report Share Posted June 7, 1999 wrote: > I didn't realize you had a child with ADD. Is it a boy or girl and is it hypo or hyper type > and what kind of medication if you don't mind answering these questions. > Have you or anyone on this list ever heard of the Amen Clinic or Dr. Amen? , Dalton is 20 yrs old, ADD, LD, and Presumed Complex IV (have you ever noticed my signature?). He is hypoactive and was presumed to have narcolepsy as well. He took Cylert for years with a fair improvement in his symptoms; he took Ritalin for about a year in junior high, with not much success because it wore off too quickly. Combination of Ritalin and Cylert for a short period of time, with no success as the narcolepsy symptoms worsened along with the hypoactive symptoms. He was then switched to Dexedrene, a combination of long acting as well as short acting and literally came to life. He is like a different kid and has done well on it since then. He will likely take the dexedrene the rest of his life. No I haven't heard of the Amen clinic. Jeannine, mom to Dalton, 20 yrs, ADD, LD, Presumed Complex IV Genny, 17 yrs, Dysautonomia, Presumed Complex IV Caitlin, 11 yrs, Dysautonomia, CIDP, Complex IV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1999 Report Share Posted June 8, 1999 is there a way to get acopy of that article from Exceptional Paretn? Debra angel in Alaska Quote Link to comment Share on other sites More sharing options...
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