Guest guest Posted February 14, 2005 Report Share Posted February 14, 2005 Hi there, Where are you? We had Ellie's fresh muscle biopsy done here in Columbus, Ohio, at Children's Hospital. Most of it was analyzed at Case Western (approved by Dr. Cohen). Shoffner in Atlanta did some testing with her frozen muscle. I don't know if this helps... We mix Ellie's cocktail into yogurt or applesauce. We usually add cinnamon to the applesauce, too. Good luck, KK Mommy to Ellie, 3, Leigh's and C-IV and my angel [Norton AntiSpam] fresh muscle biopsies From what we understand the only places that do fresh muscle biopsies are in Atlanta and Cleveland. Does anyone have any more information on these places, maybe names of the hospitals or clinics that I've heard about that do this? Thanks!One other thing, is there a secret to making the cocktail taste better? I tried our local pharmacy that flavors meds, better, but big aftertaste. I still have to hold Leighann down to get her to take it.Thanks for any info, Lois and LeighannPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2005 Report Share Posted February 14, 2005 Hi there, Where are you? We had Ellie's fresh muscle biopsy done here in Columbus, Ohio, at Children's Hospital. Most of it was analyzed at Case Western (approved by Dr. Cohen). Shoffner in Atlanta did some testing with her frozen muscle. I don't know if this helps... We mix Ellie's cocktail into yogurt or applesauce. We usually add cinnamon to the applesauce, too. Good luck, KK Mommy to Ellie, 3, Leigh's and C-IV and my angel [Norton AntiSpam] fresh muscle biopsies From what we understand the only places that do fresh muscle biopsies are in Atlanta and Cleveland. Does anyone have any more information on these places, maybe names of the hospitals or clinics that I've heard about that do this? Thanks!One other thing, is there a secret to making the cocktail taste better? I tried our local pharmacy that flavors meds, better, but big aftertaste. I still have to hold Leighann down to get her to take it.Thanks for any info, Lois and LeighannPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2005 Report Share Posted February 14, 2005 K K, THANK YOU, THANK YOU, THANK YOU!!!! This was the first time I gave her the cocktail without holding her down, then she wanted more when I was done. I tasted it, it tasted just like cinnamon applesauce! We live in Florida, we see all her specialists in Orlando. If we do it local it would be done in Gainesville at Shands Hospital. One neuro says it would be completely fresh there, the genetic says that it would be semi-fresh. How fresh does it need to be to be able to get the right results? I hear so many people in this group that have had them done at other places and they got results, I am so confused. I just want to make sure that we dont have to repeat it. Leighann just turned 2 in Nov. and I dont want to put her through any more than she has to. We have been very lucky, our insurance has covered everything possible without question, even 2nd and 3rd opinions, which we are seeking, but I see that a lot of other insurances make everybody get the biopsy before going further. Is there enough benefit of the biopsy to make it worth it even though the insurance is covering without it? Our neuro says no, but as I said we are looking into other opinions because we dont feel like hes the best for her. You guys have been here and theres a personal stake in this, I just want to make sure were doing the right thing. It just seems like a lot of guess work, and we need more than that, especially Leighann. Good luck with Ellie, what a beautiful name for I bet is a beautiful little girl! Thanks for the advice, it helps!! Thank you guys so much, Lois, mom to Leighann,2 (suspected mito and tomboy all the way!!!) and Kendall, 3 ( no mito and girlie girl!!!) [Norton AntiSpam] fresh muscle biopsies From what we understand the only places that do fresh muscle biopsies are in Atlanta and Cleveland. Does anyone have any more information on these places, maybe names of the hospitals or clinics that I've heard about that do this? Thanks!One other thing, is there a secret to making the cocktail taste better? I tried our local pharmacy that flavors meds, better, but big aftertaste. I still have to hold Leighann down to get her to take it.Thanks for any info, Lois and LeighannPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2005 Report Share Posted February 14, 2005 K K, THANK YOU, THANK YOU, THANK YOU!!!! This was the first time I gave her the cocktail without holding her down, then she wanted more when I was done. I tasted it, it tasted just like cinnamon applesauce! We live in Florida, we see all her specialists in Orlando. If we do it local it would be done in Gainesville at Shands Hospital. One neuro says it would be completely fresh there, the genetic says that it would be semi-fresh. How fresh does it need to be to be able to get the right results? I hear so many people in this group that have had them done at other places and they got results, I am so confused. I just want to make sure that we dont have to repeat it. Leighann just turned 2 in Nov. and I dont want to put her through any more than she has to. We have been very lucky, our insurance has covered everything possible without question, even 2nd and 3rd opinions, which we are seeking, but I see that a lot of other insurances make everybody get the biopsy before going further. Is there enough benefit of the biopsy to make it worth it even though the insurance is covering without it? Our neuro says no, but as I said we are looking into other opinions because we dont feel like hes the best for her. You guys have been here and theres a personal stake in this, I just want to make sure were doing the right thing. It just seems like a lot of guess work, and we need more than that, especially Leighann. Good luck with Ellie, what a beautiful name for I bet is a beautiful little girl! Thanks for the advice, it helps!! Thank you guys so much, Lois, mom to Leighann,2 (suspected mito and tomboy all the way!!!) and Kendall, 3 ( no mito and girlie girl!!!) [Norton AntiSpam] fresh muscle biopsies From what we understand the only places that do fresh muscle biopsies are in Atlanta and Cleveland. Does anyone have any more information on these places, maybe names of the hospitals or clinics that I've heard about that do this? Thanks!One other thing, is there a secret to making the cocktail taste better? I tried our local pharmacy that flavors meds, better, but big aftertaste. I still have to hold Leighann down to get her to take it.Thanks for any info, Lois and LeighannPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Atlanta: Dr. Shoffner team. Cleveland Clinic: Dr. Cohen and team but I am not sure if they now do fresh muscle biopsy testing. rosy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 The Cleveland location is The Cleveland Clinic www.clevelandclinic.org The doctor is Dr. Bruce Cohen and his department is pediatric neurology. We go to him and are very happy. Organize your inbox and send incoming messages to specific folders. Learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 The Cleveland location is The Cleveland Clinic www.clevelandclinic.org The doctor is Dr. Bruce Cohen and his department is pediatric neurology. We go to him and are very happy. Organize your inbox and send incoming messages to specific folders. Learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 I'd ask a whole lot of questions from anyone other than Cleveland Clinc or Atlanta who say they can do fresh muscle biopsies. Some people may call frozen biopsies fresh. In order to be fresh, one must have a lab capable of looking at the slides immediately. We had a neuro (who had a fellowship with Cohen) who insisted that frozen was better. But, a frozen biopsy is correct only about 1/2 the time from what I've heard. The gold standard is fresh. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 , Thanks for the info. Are you in that area? Do you know if out of state insurance covers this? I am in Florida, but I am willing to go through whatever red tape I need to to get Leighann to someone that actually can help her instead of the lets wait and see attitude, preferrably the best in the field if I can. Thanks again, Lois RE: fresh muscle biopsies The Cleveland location is The Cleveland Clinic www.clevelandclinic.org The doctor is Dr. Bruce Cohen and his department is pediatric neurology. We go to him and are very happy. Organize your inbox and send incoming messages to specific folders. Learn more! Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 I really think that is exactly what is going on with her neuro and geneticist. They're saying that the fresh here is good enough. I really do not want to put her through this for nothing, because the doctors have no idea what they are talking about. I'm sure everyone here can agree to that. Thanks for tha advice! Lois > [Original Message] > > To: <Mito > > Date: 2/15/2005 11:41:56 AM > Subject: Re: fresh muscle biopsies > > > > I'd ask a whole lot of questions from anyone other than Cleveland Clinc or > Atlanta who say they can do fresh muscle biopsies. Some people may call > frozen biopsies fresh. In order to be fresh, one must have a lab capable of > looking at the slides immediately. We had a neuro (who had a fellowship with > Cohen) who insisted that frozen was better. But, a frozen biopsy is correct > only about 1/2 the time from what I've heard. The gold standard is fresh. > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Thank you Rosy! Atlanta is closer to us, but is there a difference in Atlanta or Cleveland. Is one supposed to be better than the other? I hear a lot about Dr. Cohen, but not a lot about Dr. Shoffner. Do you know if that is just because of location, that maybe more of the members are closer to Cleveland or that Dr. Cohen is better? Thanks, Lois Re: fresh muscle biopsies Atlanta: Dr. Shoffner team. Cleveland Clinic: Dr. Cohen and team but I am not sure if they now do fresh muscle biopsy testing. rosyPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 We waited more than a year to get into Cleveland clininc to see Cohen. We then were sent to Parikh, a fellow. It was not pretty. He said he would do the biopsy and then didn't. He said things like is in the 50th percentile for height for a five year old. She was 6 1/2. He said he did testing he did not do. He sent paperwork to docs we had not seen in years---against my express wishes. He never opened the films of MRIs and CTs even though he asked for them. Atlanta is close to you. Schoffner is at Children's Health Care of Atlanta. They don't take medicaid. They also require written preapproval by insurance and copays paid in advance. It would probably be quicker to get a biopsy in Atlanta. It takes about four months to get the report back. If you try Cleveland Clinic, you might be better off finding a great mito doc who will ask Cohen to order specific testing done (ex. Whiteman at Mayo). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Btw, Zoe just had her fresh muscle biopsy in sept at the Cleve. Clinic. It was great> From: lois saunders Sent: Tuesday, February 15, 2005 10:23 AM To: Mito Subject: RE: fresh muscle biopsies , Thanks for the info. Are you in that area? Do you know if out of state insurance covers this? I am in Florida, but I am willing to go through whatever red tape I need to to get Leighann to someone that actually can help her instead of the lets wait and see attitude, preferrably the best in the field if I can. Thanks again, Lois RE: fresh muscle biopsies The Cleveland location is The Cleveland Clinic www.clevelandclinic.org The doctor is Dr. Bruce Cohen and his department is pediatric neurology. We go to him and are very happy. Organize your inbox and send incoming messages to specific folders. Learn more! Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2005 Report Share Posted February 15, 2005 Yes, we actually live about 20 min from the hospital. I would contact your insurance and ask them about the out of state provisions, but it should not be a problem as far as CCF goes. I do know that they do have satelite branches in Florida. I believe they are in Ft. Lauderdale and maybe in Orlando. You would still need to travel to Cleveland to see Dr. Cohen and for the muscle biopsy, but maybe working through the satelites may get you in faster, not sure though. Here is the number for the pediatric neurology office. (216)444-1993 and the appointment line is (216)444-5559. I do know there is an 800 number but I just can't seem to find it right now, I'm sure it is somewhere on the website. Feel free to ask if you have any other questions about the area or hospital. Alot of people in this group use CCF so many have good advice for hotels and what not. Best wishes. carrie Organize your inbox and send incoming messages to specific folders. Learn more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 , What does CCF stand for? We go to Orlado for all of Leighann's specialists and for the hospitals also. Thanks for the info! I have gotten so many responses from everyone in the group! I can't believe how helpful everyone has been! There are a lot of really great people in this group! Thanks for the numbers too! Thanks, Lois RE: fresh muscle biopsies Yes, we actually live about 20 min from the hospital. I would contact your insurance and ask them about the out of state provisions, but it should not be a problem as far as CCF goes. I do know that they do have satelite branches in Florida. I believe they are in Ft. Lauderdale and maybe in Orlando. You would still need to travel to Cleveland to see Dr. Cohen and for the muscle biopsy, but maybe working through the satelites may get you in faster, not sure though. Here is the number for the pediatric neurology office. (216)444-1993 and the appointment line is (216)444-5559. I do know there is an 800 number but I just can't seem to find it right now, I'm sure it is somewhere on the website. Feel free to ask if you have any other questions about the area or hospital. Alot of people in this group use CCF so many have good advice for hotels and what not. Best wishes. carrie Organize your inbox and send incoming messages to specific folders. Learn more! Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2005 Report Share Posted February 17, 2005 , I am so sorry that had to go through that with Parick. I guarantee if doctors like him had someone treat them that way they would wake up and become the responsible doctors they promise to be. Thank you for sharing this with us, I just wish someone could've warned you about him beforehand. Thank you also for the info on Schoffner. We have insurance through my husband and medicaid as secondary, so hopefully it won't be a lot of problems. We' ve been very lucky with our insurance so far so I'm keeping my fingers crossed this will continue. I hope you never have to go through another doctor like this again, and thank you again for sharing this. It really helps! Thanks and best of wishes with and your family, Lois > [Original Message] > > To: <Mito > > Date: 2/15/2005 9:04:39 PM > Subject: Re: fresh muscle biopsies > > > > We waited more than a year to get into Cleveland clininc to see Cohen. We > then were sent to Parikh, a fellow. It was not pretty. He said he would do the > biopsy and then didn't. He said things like is in the 50th percentile for > height for a five year old. She was 6 1/2. He said he did testing he did not do. > He sent paperwork to docs we had not seen in years---against my express > wishes. He never opened the films of MRIs and CTs even though he asked > for them. > > Atlanta is close to you. Schoffner is at Children's Health Care of Atlanta. They > don't take medicaid. They also require written preapproval by insurance and > copays paid in advance. It would probably be quicker to get a biopsy in > Atlanta. It takes about four months to get the report back. > > If you try Cleveland Clinic, you might be better off finding a great mito doc who > will ask Cohen to order specific testing done (ex. Whiteman at Mayo). > > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 The waiting list for Cohen is more than a year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2005 Report Share Posted February 19, 2005 Thats crazy, but I think that has to mean hes very good. > [Original Message] > > To: <Mito > > Date: 2/19/2005 12:52:59 AM > Subject: Re: fresh muscle biopsies > > > > The waiting list for Cohen is more than a year. > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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