Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 welcome to the list. I love the name Mirella...I love different names...does it mean anything? We are awaiting a new baby girl and I love picking out the name! Her name will be Honor Dielle which means honorable girl who worships God. Anyway, I digress. I don't want to alarm you if it is undue, but is there a way you could go to a Mito center? There is one in CA...I think San Diego but would have to check on that. They are also in Atlanta and Cleaveland. The only way to know what type of mito is to do a fresh biopsy but it may not matter all that much. The only thing that gave me a red flag when I read you were going to Seattle childrens is a Dr Feldman there...who has been known to accuse mothers who have children with rare diseases of Munchausens by Proxy. He accused someone who used to be on this list and I have even seen stuff on him on dateline about accusations he has made and then the children died after being taken from thier parents. The mother that was on our list, didn't have her kids taken but she had a big fight ahead of her. I don't know much about Dr Santeo but from that news story Seattle Children's is rather skeptical as a whole. I know other moms who have kids with different diseases from a Neurology list I am on and they have had a horrible time too. So unless you have a very solid, unquestionable case of mito with both children, I would approach the dr and tell them that you just found out about some Mito Centers and would be interested in going that route. I live in Memphis and had to travel to Boston and Atlanta for Mito tx for . But I am telling you all this b/c I believe in the right for mothers to be advocates for thier children without being suspect! Keep us posted and happy to know you, but of course, sorry you have a reason to be here. You are welcome to write me off-list if you want. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 welcome to the list. I love the name Mirella...I love different names...does it mean anything? We are awaiting a new baby girl and I love picking out the name! Her name will be Honor Dielle which means honorable girl who worships God. Anyway, I digress. I don't want to alarm you if it is undue, but is there a way you could go to a Mito center? There is one in CA...I think San Diego but would have to check on that. They are also in Atlanta and Cleaveland. The only way to know what type of mito is to do a fresh biopsy but it may not matter all that much. The only thing that gave me a red flag when I read you were going to Seattle childrens is a Dr Feldman there...who has been known to accuse mothers who have children with rare diseases of Munchausens by Proxy. He accused someone who used to be on this list and I have even seen stuff on him on dateline about accusations he has made and then the children died after being taken from thier parents. The mother that was on our list, didn't have her kids taken but she had a big fight ahead of her. I don't know much about Dr Santeo but from that news story Seattle Children's is rather skeptical as a whole. I know other moms who have kids with different diseases from a Neurology list I am on and they have had a horrible time too. So unless you have a very solid, unquestionable case of mito with both children, I would approach the dr and tell them that you just found out about some Mito Centers and would be interested in going that route. I live in Memphis and had to travel to Boston and Atlanta for Mito tx for . But I am telling you all this b/c I believe in the right for mothers to be advocates for thier children without being suspect! Keep us posted and happy to know you, but of course, sorry you have a reason to be here. You are welcome to write me off-list if you want. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 , >Dr Saneto trained under Dr Bruce Cohen and therefor is a reputable Mito >doctor!!!! I just wanted to add to what Jean said about Dr. Saneto that he has been the guest in the MDA mito chat a couple of times, and I have been impressed with his answers. I also felt, as far as one can judge from an online chat, that he seemed compassionate and concerned. The fact that he took his time to chat with us says something by itself. I believe there would be at least one of the transcripts from Dr. Saneto's chats available on the mdausa.org web site (the last chat may be too recent). Perhaps reading the transcript might give you some feeling for his expertise and manner. Take care, -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 , >Dr Saneto trained under Dr Bruce Cohen and therefor is a reputable Mito >doctor!!!! I just wanted to add to what Jean said about Dr. Saneto that he has been the guest in the MDA mito chat a couple of times, and I have been impressed with his answers. I also felt, as far as one can judge from an online chat, that he seemed compassionate and concerned. The fact that he took his time to chat with us says something by itself. I believe there would be at least one of the transcripts from Dr. Saneto's chats available on the mdausa.org web site (the last chat may be too recent). Perhaps reading the transcript might give you some feeling for his expertise and manner. Take care, -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 , >Dr Saneto trained under Dr Bruce Cohen and therefor is a reputable Mito >doctor!!!! I just wanted to add to what Jean said about Dr. Saneto that he has been the guest in the MDA mito chat a couple of times, and I have been impressed with his answers. I also felt, as far as one can judge from an online chat, that he seemed compassionate and concerned. The fact that he took his time to chat with us says something by itself. I believe there would be at least one of the transcripts from Dr. Saneto's chats available on the mdausa.org web site (the last chat may be too recent). Perhaps reading the transcript might give you some feeling for his expertise and manner. Take care, -- Mom to: Emilie (17), mito--complex IV, cp, ld Kaitlin (17), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Sorry I alarmed anyone unduly...I am sure some of you long-time list members know who I am talking about with the Munch thing...I don't remember what Dr Feldman's specialty is, but if it were me and I ever needed that kind of specialist I would stay away. Altho one of the criticisms on the dateline show was that he often diagnosis mothers with MBPS without ever meeting the children, but maybe now the HIPPA law would help prevent this? How long has Dr Santeo been there? What kind of doc is he...I might mention it to the other mom I know going there for treatment. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Sorry I alarmed anyone unduly...I am sure some of you long-time list members know who I am talking about with the Munch thing...I don't remember what Dr Feldman's specialty is, but if it were me and I ever needed that kind of specialist I would stay away. Altho one of the criticisms on the dateline show was that he often diagnosis mothers with MBPS without ever meeting the children, but maybe now the HIPPA law would help prevent this? How long has Dr Santeo been there? What kind of doc is he...I might mention it to the other mom I know going there for treatment. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Sorry I alarmed anyone unduly...I am sure some of you long-time list members know who I am talking about with the Munch thing...I don't remember what Dr Feldman's specialty is, but if it were me and I ever needed that kind of specialist I would stay away. Altho one of the criticisms on the dateline show was that he often diagnosis mothers with MBPS without ever meeting the children, but maybe now the HIPPA law would help prevent this? How long has Dr Santeo been there? What kind of doc is he...I might mention it to the other mom I know going there for treatment. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 and Deb and all; Dr Saneto trained under Dr Bruce Cohen and therefor is a reputable Mito doctor!!!! Sure Dr Feldman is there in Seattle with his penchant for Munchausen's by Proxy reputation ..... but .... now that knows about him and his name and reputation, I am sure she can be upfront with Dr Saneto with her concern! Jean VisibleWorship@... wrote: welcome to the list. I love the name Mirella...I love different names...does it mean anything? We are awaiting a new baby girl and I love picking out the name! Her name will be Honor Dielle which means honorable girl who worships God. Anyway, I digress. I don't want to alarm you if it is undue, but is there a way you could go to a Mito center? There is one in CA...I think San Diego but would have to check on that. They are also in Atlanta and Cleaveland. The only way to know what type of mito is to do a fresh biopsy but it may not matter all that much. The only thing that gave me a red flag when I read you were going to Seattle childrens is a Dr Feldman there...who has been known to accuse mothers who have children with rare diseases of Munchausens by Proxy. He accused someone who used to be on this list and I have even seen stuff on him on dateline about accusations he has made and then the children died after being taken from thier parents. The mother that was on our list, didn't have her kids taken but she had a big fight ahead of her. I don't know much about Dr Santeo but from that news story Seattle Children's is rather skeptical as a whole. I know other moms who have kids wi I live in Memphis and had to travel to Boston and Atlanta for Mito tx for . But I am telling you all this b/c I believe in the right for mothers to be advocates for thier children without being suspect! Keep us posted and happy to know you, but of course, sorry you have a reason to be here. You are welcome to write me off-list if you want. deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy. www.HeartLiftersGallery.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Dear : Welcome to the mito list. I'm sorry to hear about your sons difficulties, they sound familiar. I hope your baby will be just fine, but I've been down that road, too. My name is Cindy and both of my boys, Seth 12 and Ben, 7, have mitochondrial disease. We live near Seattle and use Dr. Saneto. He has been a blessing! You will not regret the trip! I understand that this Dr. Feldman is at Children's, although I have never met him. I have never had anyone act suspicious of us or doubt any diagnosis at Children's. Now that Dr. Saneto is there, there is a greater understanding of mitochondrial disease and they have an expert to ask if there are questions. My sons have had more than 20 hospitalizations there, and 14 surgeries. I think you will be happy with Dr. Saneto. Please email me privately to get more information as well as efforts we are making in the local community to support his research there and promote the awareness of mitochondrial disease. Welcome to the list! Cindy Cruz, rella19@... wrote: I am curious though has anyone else used Children's hospital in Seattle with DR Santeo? J, Mom to 15, mito unknown, Mirella, 3 months, status unknown (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Dear : Welcome to the mito list. I'm sorry to hear about your sons difficulties, they sound familiar. I hope your baby will be just fine, but I've been down that road, too. My name is Cindy and both of my boys, Seth 12 and Ben, 7, have mitochondrial disease. We live near Seattle and use Dr. Saneto. He has been a blessing! You will not regret the trip! I understand that this Dr. Feldman is at Children's, although I have never met him. I have never had anyone act suspicious of us or doubt any diagnosis at Children's. Now that Dr. Saneto is there, there is a greater understanding of mitochondrial disease and they have an expert to ask if there are questions. My sons have had more than 20 hospitalizations there, and 14 surgeries. I think you will be happy with Dr. Saneto. Please email me privately to get more information as well as efforts we are making in the local community to support his research there and promote the awareness of mitochondrial disease. Welcome to the list! Cindy Cruz, rella19@... wrote: I am curious though has anyone else used Children's hospital in Seattle with DR Santeo? J, Mom to 15, mito unknown, Mirella, 3 months, status unknown (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Dear : Welcome to the mito list. I'm sorry to hear about your sons difficulties, they sound familiar. I hope your baby will be just fine, but I've been down that road, too. My name is Cindy and both of my boys, Seth 12 and Ben, 7, have mitochondrial disease. We live near Seattle and use Dr. Saneto. He has been a blessing! You will not regret the trip! I understand that this Dr. Feldman is at Children's, although I have never met him. I have never had anyone act suspicious of us or doubt any diagnosis at Children's. Now that Dr. Saneto is there, there is a greater understanding of mitochondrial disease and they have an expert to ask if there are questions. My sons have had more than 20 hospitalizations there, and 14 surgeries. I think you will be happy with Dr. Saneto. Please email me privately to get more information as well as efforts we are making in the local community to support his research there and promote the awareness of mitochondrial disease. Welcome to the list! Cindy Cruz, rella19@... wrote: I am curious though has anyone else used Children's hospital in Seattle with DR Santeo? J, Mom to 15, mito unknown, Mirella, 3 months, status unknown (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi, Deb.. Dr. Saneto is a neurologist/epileptologist who specializes in mito disorders. He came to Seattle's Children's almost two years ago. He has written articles for UMDF (remember the one about care of mito patients in acute illness - I think he wrote that one with Cohen, who he trained with. Also, the article about seizures vs. movement disorders in mito patients). He is on the scientific advisory board for UMDF. Also, there is a second Dr. Ken Feldman at our Children's (he is an ER doc). The one in the media is a child abuse doc. You can imagine my concern one time in the ER when the ER Feldman helped us. But, he was good and caring about Ben. Cindy Deb wrote: How long has Dr Santeo been there? What kind of doc is he...I might mention it to the other mom I know going there for treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi, Deb.. Dr. Saneto is a neurologist/epileptologist who specializes in mito disorders. He came to Seattle's Children's almost two years ago. He has written articles for UMDF (remember the one about care of mito patients in acute illness - I think he wrote that one with Cohen, who he trained with. Also, the article about seizures vs. movement disorders in mito patients). He is on the scientific advisory board for UMDF. Also, there is a second Dr. Ken Feldman at our Children's (he is an ER doc). The one in the media is a child abuse doc. You can imagine my concern one time in the ER when the ER Feldman helped us. But, he was good and caring about Ben. Cindy Deb wrote: How long has Dr Santeo been there? What kind of doc is he...I might mention it to the other mom I know going there for treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi, Deb.. Dr. Saneto is a neurologist/epileptologist who specializes in mito disorders. He came to Seattle's Children's almost two years ago. He has written articles for UMDF (remember the one about care of mito patients in acute illness - I think he wrote that one with Cohen, who he trained with. Also, the article about seizures vs. movement disorders in mito patients). He is on the scientific advisory board for UMDF. Also, there is a second Dr. Ken Feldman at our Children's (he is an ER doc). The one in the media is a child abuse doc. You can imagine my concern one time in the ER when the ER Feldman helped us. But, he was good and caring about Ben. Cindy Deb wrote: How long has Dr Santeo been there? What kind of doc is he...I might mention it to the other mom I know going there for treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi , I just want you to know that you are in good hands with Dr Saneto and should consider yourself very fortunate to have him as your physician. He is one of the best in the field. Good luck and let us know how it goes. Alice > I am curious though has anyone else used Children's hospital in Seattle with > DR Santeo? > > > J, Mom to 15, mito unknown, Mirella, 3 months, status unknown > (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi , I just want you to know that you are in good hands with Dr Saneto and should consider yourself very fortunate to have him as your physician. He is one of the best in the field. Good luck and let us know how it goes. Alice > I am curious though has anyone else used Children's hospital in Seattle with > DR Santeo? > > > J, Mom to 15, mito unknown, Mirella, 3 months, status unknown > (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Hi , I just want you to know that you are in good hands with Dr Saneto and should consider yourself very fortunate to have him as your physician. He is one of the best in the field. Good luck and let us know how it goes. Alice > I am curious though has anyone else used Children's hospital in Seattle with > DR Santeo? > > > J, Mom to 15, mito unknown, Mirella, 3 months, status unknown > (showing some signs but could be because she was early) Quote Link to comment Share on other sites More sharing options...
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