Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 I just got back from seeing Dr Shoffner and it was excellent...he does not take medicaid however and we had to raise funds to take him b/c his policies just worked better for us...anyway, everything was great about it. We don't have any dx's yet...all the docs here in town had given up on finding out what is going on and so we put all our eggs in one basket and i wanted it to be the best basked I could find and for us, tht was shoffner...to me, if you are going to go through the whole dx process again, why not go for the best...where you know they are used to dealing with you...I am sure Cohen is equally as good, but you can even tell they are used to dealing wtih families who have been told they were being paranoid, given up on and called names...they know better than anyone that there are validations to everything! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 I just got back from seeing Dr Shoffner and it was excellent...he does not take medicaid however and we had to raise funds to take him b/c his policies just worked better for us...anyway, everything was great about it. We don't have any dx's yet...all the docs here in town had given up on finding out what is going on and so we put all our eggs in one basket and i wanted it to be the best basked I could find and for us, tht was shoffner...to me, if you are going to go through the whole dx process again, why not go for the best...where you know they are used to dealing with you...I am sure Cohen is equally as good, but you can even tell they are used to dealing wtih families who have been told they were being paranoid, given up on and called names...they know better than anyone that there are validations to everything! deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hi everyone. I am working on arranging a referral for Jessalyn to have a second opinion on her mito diagnosis. She is currently seeing a geneticist here in our area, but I am not happy with his care of Jessalyn. He doesn't communicate well with us and is not addressing some of our concerns about her health. We are from Maine, and our pediatrician suggested going to Boston. Is there anyone there in particular that you folks would recommend? I am really not sure what direction to head in here. Maybe it would be better to go to see Dr. Cohen in Cleveland or Dr. Shoffner. I could really use some advice. Is it better to start closer to home(Boston) and possibly end up going further later on or just go directly to a mito clinic like Cleveland or Atlanta? Hope this post makes sense - I'm seriously sleep deprived. All three of my kids have the flu, including Jessalyn. Yikes. Thanks for any help. from Maine Mom to: Johanna - 6 and healthy Jareb - 2 and healthy Jessalyn - 7 mos w/mitochondrial myopathy, fundo & g-tube, developmental delay, possible seizure disorder and a whole bunch of other stuff (already) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hello I am from Plymouth, MA, and we take my 3-year-old child to Dr. Mark Korson at NEMC. We started off at Children's Hospital, Boston but found our way to Dr. Korson. (He was previously there but left; long story but for this disease I would recommend NEMC over Children's hands down; just my opinion) Anyway, he is considered by many to be one of the top in the field, and he works closely with Dr. Shoffner in Atlanta. We went to Shoffner in February 02 for a fresh muscle biopsy and are awaiting the results. Dr. Korson triages all of Owen's care and he and his assistant Jeannette are wonderful. I have great confidence in him. His phone number is: and his email is mkorson@.... I would start with him and from there he would tell you if you are ready for Atlanta or if you have more testing that needs to be done first. In addition, NEMC should be doing live muscle biopsies soon. Dr. Korson has been very accessible to me and my family and Owen had a hospitalization this year (at NEMC) and Dr. Korson was great. He came in to check on him everyday and no one made a move with Owen unless they had the go ahead from Dr. Korson. If you have any other questions, please do not hesitate to email me privately at twillis@.... Also, there is a UMDF support group meeting this coming Monday at the Lahey Clinic in Burlington, MA at 7:00pm. You get first hand knowledge of other parent's/adults experiences with the various specialists in the area as well as support. I hope this helps. Sincerely, Bridget Mom To Owen, 3 yrs, highly suspected Mito, mid-line hypotonia, seizures, global developmental delay, autism, and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday) Time for a second opinion Hi everyone. I am working on arranging a referral for Jessalyn to have a second opinion on her mito diagnosis. She is currently seeing a geneticist here in our area, but I am not happy with his care of Jessalyn. He doesn't communicate well with us and is not addressing some of our concerns about her health. We are from Maine, and our pediatrician suggested going to Boston. Is there anyone there in particular that you folks would recommend? I am really not sure what direction to head in here. Maybe it would be better to go to see Dr. Cohen in Cleveland or Dr. Shoffner. I could really use some advice. Is it better to start closer to home(Boston) and possibly end up going further later on or just go directly to a mito clinic like Cleveland or Atlanta? Hope this post makes sense - I'm seriously sleep deprived. All three of my kids have the flu, including Jessalyn. Yikes. Thanks for any help. from MaineMom to:Johanna - 6 and healthyJareb - 2 and healthyJessalyn - 7 mos w/mitochondrial myopathy, fundo & g-tube, developmental delay, possible seizure disorder and a whole bunch of other stuff (already)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hello I am from Plymouth, MA, and we take my 3-year-old child to Dr. Mark Korson at NEMC. We started off at Children's Hospital, Boston but found our way to Dr. Korson. (He was previously there but left; long story but for this disease I would recommend NEMC over Children's hands down; just my opinion) Anyway, he is considered by many to be one of the top in the field, and he works closely with Dr. Shoffner in Atlanta. We went to Shoffner in February 02 for a fresh muscle biopsy and are awaiting the results. Dr. Korson triages all of Owen's care and he and his assistant Jeannette are wonderful. I have great confidence in him. His phone number is: and his email is mkorson@.... I would start with him and from there he would tell you if you are ready for Atlanta or if you have more testing that needs to be done first. In addition, NEMC should be doing live muscle biopsies soon. Dr. Korson has been very accessible to me and my family and Owen had a hospitalization this year (at NEMC) and Dr. Korson was great. He came in to check on him everyday and no one made a move with Owen unless they had the go ahead from Dr. Korson. If you have any other questions, please do not hesitate to email me privately at twillis@.... Also, there is a UMDF support group meeting this coming Monday at the Lahey Clinic in Burlington, MA at 7:00pm. You get first hand knowledge of other parent's/adults experiences with the various specialists in the area as well as support. I hope this helps. Sincerely, Bridget Mom To Owen, 3 yrs, highly suspected Mito, mid-line hypotonia, seizures, global developmental delay, autism, and the world's biggest belly laughand , 1 yr, developing well (thank God, everyday) Time for a second opinion Hi everyone. I am working on arranging a referral for Jessalyn to have a second opinion on her mito diagnosis. She is currently seeing a geneticist here in our area, but I am not happy with his care of Jessalyn. He doesn't communicate well with us and is not addressing some of our concerns about her health. We are from Maine, and our pediatrician suggested going to Boston. Is there anyone there in particular that you folks would recommend? I am really not sure what direction to head in here. Maybe it would be better to go to see Dr. Cohen in Cleveland or Dr. Shoffner. I could really use some advice. Is it better to start closer to home(Boston) and possibly end up going further later on or just go directly to a mito clinic like Cleveland or Atlanta? Hope this post makes sense - I'm seriously sleep deprived. All three of my kids have the flu, including Jessalyn. Yikes. Thanks for any help. from MaineMom to:Johanna - 6 and healthyJareb - 2 and healthyJessalyn - 7 mos w/mitochondrial myopathy, fundo & g-tube, developmental delay, possible seizure disorder and a whole bunch of other stuff (already)Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hi, Boston is wonderful.! Dr. Mark Korson, at New England Children's Medical Center is Brillant. He is our Hero. After 10 years of going through hell, he straightened evrything out in a 4 hour visit. He ended up sending us down to Atlanta, and because of his knowledge our Bluecross paid for the whole trip. We got a diagnosis, and now my child is being treated. The number to New England Medical center is1-. Good Luck....His secretarys name is Jeannette, she is one of the most caring people I have ever met. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2002 Report Share Posted May 3, 2002 Hi, Boston is wonderful.! Dr. Mark Korson, at New England Children's Medical Center is Brillant. He is our Hero. After 10 years of going through hell, he straightened evrything out in a 4 hour visit. He ended up sending us down to Atlanta, and because of his knowledge our Bluecross paid for the whole trip. We got a diagnosis, and now my child is being treated. The number to New England Medical center is1-. Good Luck....His secretarys name is Jeannette, she is one of the most caring people I have ever met. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2002 Report Share Posted May 4, 2002 Almost don't feel I have to reply but, go see Korson. Email him @ mkorson@..., he's the next best thing to going to Atlanta. Jeff Quote Link to comment Share on other sites More sharing options...
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