Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Joanne, We deal with insurance companies every day as far as documentation from physicians for medical necessity for wheelchairs. If you would like to call me and give me some details, I will try to tell you what you need in your specific instance. Joe Marshall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Joanne, We deal with insurance companies every day as far as documentation from physicians for medical necessity for wheelchairs. If you would like to call me and give me some details, I will try to tell you what you need in your specific instance. Joe Marshall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Joanne Kocourek wrote: > One of their physicians is willing to " rewrite/edit " sample letters that > our insurance is demanding. This is far removed from his speciality so he > asked me to help (and it's far removed from my area of expertice too). Joanne, Wouldn't it be simplier just to have Dr. Cohen write this into his clinic follow up notes? I would think he would be more than happy to handle that, and he is such an expert in this area, I would think that it would definately have more clout with the insurance company. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Joanne Kocourek wrote: > One of their physicians is willing to " rewrite/edit " sample letters that > our insurance is demanding. This is far removed from his speciality so he > asked me to help (and it's far removed from my area of expertice too). Joanne, Wouldn't it be simplier just to have Dr. Cohen write this into his clinic follow up notes? I would think he would be more than happy to handle that, and he is such an expert in this area, I would think that it would definately have more clout with the insurance company. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 1999 Report Share Posted June 4, 1999 Joanne Kocourek wrote: > One of their physicians is willing to " rewrite/edit " sample letters that > our insurance is demanding. This is far removed from his speciality so he > asked me to help (and it's far removed from my area of expertice too). Joanne, Wouldn't it be simplier just to have Dr. Cohen write this into his clinic follow up notes? I would think he would be more than happy to handle that, and he is such an expert in this area, I would think that it would definately have more clout with the insurance company. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 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 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 much of Dr. Cohen and group as no one there even had the courtesy to respond to me with even so much as a go to *. If you cannot or are not willing to see someone you should have the courtesy to say SOMETHING to at least let the person know you recieved the message and this is how you feel and why you are not going to help the person. I called once and wrote twice so I know they got messages. Scoggins Re: Medical Necessity 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 ------------------------------------------------------------------------ Did you know each week we feature a ONElist story? http://www.onelist.com How has ONElist changed your life? Please share your story. ------------------------------------------------------------------------ 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 5, 1999 Report Share Posted June 5, 1999 I don't think much of Dr. Cohen and group as no one there even had the courtesy to respond to me with even so much as a go to *. If you cannot or are not willing to see someone you should have the courtesy to say SOMETHING to at least let the person know you recieved the message and this is how you feel and why you are not going to help the person. I called once and wrote twice so I know they got messages. Scoggins Re: Medical Necessity 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 ------------------------------------------------------------------------ Did you know each week we feature a ONElist story? http://www.onelist.com How has ONElist changed your life? Please share your story. ------------------------------------------------------------------------ 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 5, 1999 Report Share Posted June 5, 1999 I don't think much of Dr. Cohen and group as no one there even had the courtesy to respond to me with even so much as a go to *. If you cannot or are not willing to see someone you should have the courtesy to say SOMETHING to at least let the person know you recieved the message and this is how you feel and why you are not going to help the person. I called once and wrote twice so I know they got messages. Scoggins Re: Medical Necessity 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 ------------------------------------------------------------------------ Did you know each week we feature a ONElist story? http://www.onelist.com How has ONElist changed your life? Please share your story. ------------------------------------------------------------------------ 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 5, 1999 Report Share Posted June 5, 1999 I think you wiill be happy with him. He is very up to date on all the new mito news. He is very interested in this field and seems to really care about his kids. It's good to have a Dr that is actually excited about his work with mito. How old is your child? Have they already been diagnosed? Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 I think you wiill be happy with him. He is very up to date on all the new mito news. He is very interested in this field and seems to really care about his kids. It's good to have a Dr that is actually excited about his work with mito. How old is your child? Have they already been diagnosed? Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 I think you wiill be happy with him. He is very up to date on all the new mito news. He is very interested in this field and seems to really care about his kids. It's good to have a Dr that is actually excited about his work with mito. How old is your child? Have they already been diagnosed? Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Jill, My daughter Alison also sees Dr. Cohen. We are very pleased with the care he has given her. His is very knowledgeable, very caring and very kind. We live in PA and he works with our docs here to manage her mito disease. I highly recommend him. I was also at the mito conference, sitting next to Jeannine who had that mighty southern accent! Barbara mom to Alison/21/MELAS liver transplant due to Depakote toxicity In a message dated 6/5/99 12:09 Eastern Daylight Time, lfitzger@... writes: > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 It is admirable that all of you feel so positive about and grateful to Dr. Cohen. I'm sure he is a fine Dr. and a nice man. I still say that he should be courteous or someone in his office should be on the stick and also courteous and respond to someone who calls and writes and asks simply if he would be able or willing to have you send information to see if he would be able to help you. I don't know what you all think I did wrong that I would deserve to be treated in that way?? I also don't know why you would feel like you would have to ostracize me on this list by discounting my feelings and input as to my experience with a Dr. someone asked about. You do not need to defend him like I am trying to discount his credibility. I am not. Why else would I have wanted to avail myself of his expertise or be dissapointed and I think rightfully so to have not recieved any sort of response at all? Is this another " good ole boys club " or are we on this list to get to the bottom line of doing all we can to keep our loved ones and ourselves alive and find the highest measure of health and happiness we can for all involved? The idea is to share information and ideas and experiences however varied they may be and try and make some sense of it all. The idea is also encouragement. I know I do not have a technical certified diagnosis of mito disorder (as many if not most on this list). That is not thru any fault of mine. As you have all been able to hear on this list I have tried my hardest to get help. If being undiagnosed makes people feel I am unqualified to be on this list let me know. Not that I will unlist as I need all information available, but it would be nice to know where I stand. I am not one to play silly games. Life is too short and mine may be very short. I want to do all I can in whatever time I have left so my family has a chance in hell. And on the way I would like to help as many others as I could. Gee, I wonder if this sort of thing is why the majority of list members " lurk " instead of aiding themselves and us by being vocal on here-do ya think? If my life and my families life can be improved by anything I can learn here whether some of you feel this is a special closed club or not I will glean all I can and make use of it with all my heart and mind. And BTW I have appreciated all the past support and encouragement and love that has come my way. I just do not appreciate this sort of behavior and I am not one to just sit back and let it go by unnoticed, there is no sort of valor in that. Scoggins Re: Medical Necessity From: bjawells@... (brandon Wells) I think you wiill be happy with him. He is very up to date on all the new mito news. He is very interested in this field and seems to really care about his kids. It's good to have a Dr that is actually excited about his work with mito. How old is your child? Have they already been diagnosed? Jill ------------------------------------------------------------------------ " Congratulations to 'Voice-Diary,' our latest ONElist of the Week. http://www.onelist.com Visit our homepage and share with us how ONElist is changing YOUR life! ------------------------------------------------------------------------ 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 5, 1999 Report Share Posted June 5, 1999 It is admirable that all of you feel so positive about and grateful to Dr. Cohen. I'm sure he is a fine Dr. and a nice man. I still say that he should be courteous or someone in his office should be on the stick and also courteous and respond to someone who calls and writes and asks simply if he would be able or willing to have you send information to see if he would be able to help you. I don't know what you all think I did wrong that I would deserve to be treated in that way?? I also don't know why you would feel like you would have to ostracize me on this list by discounting my feelings and input as to my experience with a Dr. someone asked about. You do not need to defend him like I am trying to discount his credibility. I am not. Why else would I have wanted to avail myself of his expertise or be dissapointed and I think rightfully so to have not recieved any sort of response at all? Is this another " good ole boys club " or are we on this list to get to the bottom line of doing all we can to keep our loved ones and ourselves alive and find the highest measure of health and happiness we can for all involved? The idea is to share information and ideas and experiences however varied they may be and try and make some sense of it all. The idea is also encouragement. I know I do not have a technical certified diagnosis of mito disorder (as many if not most on this list). That is not thru any fault of mine. As you have all been able to hear on this list I have tried my hardest to get help. If being undiagnosed makes people feel I am unqualified to be on this list let me know. Not that I will unlist as I need all information available, but it would be nice to know where I stand. I am not one to play silly games. Life is too short and mine may be very short. I want to do all I can in whatever time I have left so my family has a chance in hell. And on the way I would like to help as many others as I could. Gee, I wonder if this sort of thing is why the majority of list members " lurk " instead of aiding themselves and us by being vocal on here-do ya think? If my life and my families life can be improved by anything I can learn here whether some of you feel this is a special closed club or not I will glean all I can and make use of it with all my heart and mind. And BTW I have appreciated all the past support and encouragement and love that has come my way. I just do not appreciate this sort of behavior and I am not one to just sit back and let it go by unnoticed, there is no sort of valor in that. Scoggins Re: Medical Necessity From: bjawells@... (brandon Wells) I think you wiill be happy with him. He is very up to date on all the new mito news. He is very interested in this field and seems to really care about his kids. It's good to have a Dr that is actually excited about his work with mito. How old is your child? Have they already been diagnosed? Jill ------------------------------------------------------------------------ " Congratulations to 'Voice-Diary,' our latest ONElist of the Week. http://www.onelist.com Visit our homepage and share with us how ONElist is changing YOUR life! ------------------------------------------------------------------------ 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 5, 1999 Report Share Posted June 5, 1999 Jill- I have a first appointment with him later this month. Laurie > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Jill- I have a first appointment with him later this month. Laurie > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Jill- I have a first appointment with him later this month. Laurie > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 Laurie, Jeannine, and Jill -- I also have two adult sons (just 35, almost 37). Awaiting DNA on me, but biopsy only done in April ('99). Too few mitos, fiber disproportion (my term!) and OXPHOS problem (think I mentioned this before.) Looking back at things that were " crazy " , I know that I have always had this mitochondrial disorder. I suspect that both my sons are mito..... one does not want to discuss it..... have not talked to other yet. My half-sister (same mother) also does not want to discuss it. I believe that two of her four children are affected. When DNA comes back, I will try again if it seems like a good idea. As always, no matter how much we do or do not know, and no matter how determined we are to try to stay functional, we are at the mercy of the docs and the labs..and for the most part, they are not living in our, or our children's, bodies. Sad state of affairs, but it all boils down to the old saying that goes something like " never judge another person until you have walked a mile in their shoes...... " I know that I sometimes forget that this applies in both directions. History has shown that gaining national awareness and support for almost anything is a long and frustrating process. Just look at the advances in this field in the last few years, however. Those of us who have energy left over from getting through the day must now start a concerted effort to draw attention to our plight. Younger kids attract more attention initially, but the world is a little tired of that approach I suspect. Maybe this would be the time to use the teens, especially those who have accomplished so much despite their physical difficulties and, in many cases, financial situations. I work with angry and dysfunctional teens who have come into contact with the justice system. Most of them drink, smoke or do drugs and there is plenty of national attention focused on the misdeeds of such angry and substance using young people. Maybe we could divert some of that attention to the teens who are so tired most of the time, that they must devote their time and energy to accomplish what they can when not taking meds or seeing docs. Let me know what you think. For those of you with younger kids who may feel that I don't understand what you are going through now and can't understand why I am jumping ahead to the teen years, perhaps the following will help: My younger son Gregg, now 35, was born with an immune deficiency. From the time he stopped nursing, he was terribly sick all the time, one infection after another. We lived in upstate Pennsylvania, in the woods, but were lucky enough to have a pediatrician (not board certified) who decided to get to the bottom of it when he was 19 mos old, was sleeping 20 hours a day, never had a temp of less than 100+ despite being on two antibiotics most of the time and had chronic diarrhea. He was in and out of the local hosp, mostly in acute respiratory distress. It was 1966.....she ran every test she could think of...then decided to send him to Children's Hosp in Philly. They did every test they could think of (CF, etc...), told me I was crazy...nothing wrong, take him home, stop worrying. Anybody heard that before??? I was carrying him down the hall with tears streaming down my face because I KNEW there was something wrong, when they came running after me. He IS sick, they said. No gamma globulin level at all...... He would probably die before he was 2 because of the infections. They admitted him to the CRC and confirmed everything, said he would need 10 CC of GG every 10 days just to maybe keep going. keep him away from anybody with an infection (right!!), keep him on penicillen, sulfa drugs, and something else, and be sure he stayed quiet...... (that wasn't difficult....) The GG was $100 a shot, our income was $65/wk for a family of four....Our pedi paid for the GG herself, but eventually we got it free from the Red Cross (after the pedi filed 6 copies of everything through Washington...) Sound familiar??? I tell you this because what we must all do is to focus on the future. That often gets you to tomorrow. There ARE adult mitos....that must mean something. And that little boy who was going to die before he was two is a mathematician, married and has two children. With love and respect for all of you dealing with the day to day problems of any mitochondrial disorder, Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 1999 Report Share Posted June 5, 1999 A deep heartfelt thank you Merril. S. Re: Medical Necessity Laurie, Jeannine, and Jill -- I also have two adult sons (just 35, almost 37). Awaiting DNA on me, but biopsy only done in April ('99). Too few mitos, fiber disproportion (my term!) and OXPHOS problem (think I mentioned this before.) Looking back at things that were " crazy " , I know that I have always had this mitochondrial disorder. I suspect that both my sons are mito..... one does not want to discuss it..... have not talked to other yet. My half-sister (same mother) also does not want to discuss it. I believe that two of her four children are affected. When DNA comes back, I will try again if it seems like a good idea. As always, no matter how much we do or do not know, and no matter how determined we are to try to stay functional, we are at the mercy of the docs and the labs..and for the most part, they are not living in our, or our children's, bodies. Sad state of affairs, but it all boils down to the old saying that goes something like " never judge another person until you have walked a mile in their shoes...... " I know that I sometimes forget that this applies in both directions. History has shown that gaining national awareness and support for almost anything is a long and frustrating process. Just look at the advances in this field in the last few years, however. Those of us who have energy left over from getting through the day must now start a concerted effort to draw attention to our plight. Younger kids attract more attention initially, but the world is a little tired of that approach I suspect. Maybe this would be the time to use the teens, especially those who have accomplished so much despite their physical difficulties and, in many cases, financial situations. I work with angry and dysfunctional teens who have come into contact with the justice system. Most of them drink, smoke or do drugs and there is plenty of national attention focused on the misdeeds of such angry and substance using young people. Maybe we could divert some of that attention to the teens who are so tired most of the time, that they must devote their time and energy to accomplish what they can when not taking meds or seeing docs. Let me know what you think. For those of you with younger kids who may feel that I don't understand what you are going through now and can't understand why I am jumping ahead to the teen years, perhaps the following will help: My younger son Gregg, now 35, was born with an immune deficiency. From the time he stopped nursing, he was terribly sick all the time, one infection after another. We lived in upstate Pennsylvania, in the woods, but were lucky enough to have a pediatrician (not board certified) who decided to get to the bottom of it when he was 19 mos old, was sleeping 20 hours a day, never had a temp of less than 100+ despite being on two antibiotics most of the time and had chronic diarrhea. He was in and out of the local hosp, mostly in acute respiratory distress. It was 1966.....she ran every test she could think of...then decided to send him to Children's Hosp in Philly. They did every test they could think of (CF, etc...), told me I was crazy...nothing wrong, take him home, stop worrying. Anybody heard that before??? I was carrying him down the hall with tears streaming down my face because I KNEW there was something wrong, when they came running after me. He IS sick, they said. No gamma globulin level at all...... He would probably die before he was 2 because of the infections. They admitted him to the CRC and confirmed everything, said he would need 10 CC of GG every 10 days just to maybe keep going. keep him away from anybody with an infection (right!!), keep him on penicillen, sulfa drugs, and something else, and be sure he stayed quiet...... (that wasn't difficult....) The GG was $100 a shot, our income was $65/wk for a family of four....Our pedi paid for the GG herself, but eventually we got it free from the Red Cross (after the pedi filed 6 copies of everything through Washington...) Sound familiar??? I tell you this because what we must all do is to focus on the future. That often gets you to tomorrow. There ARE adult mitos....that must mean something. And that little boy who was going to die before he was two is a mathematician, married and has two children. With love and respect for all of you dealing with the day to day problems of any mitochondrial disorder, Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 Merril, What a beautiful message you have sent to the list, my dear friend. So often, the teenagers are put down and neglected simply because they are just teens. I remember very well, those wonderful years with my children. They were active in all the positive things that a teen can be involved with. At the same time, we also had one son, severely stricken, not so cute anymore but still in need of loving and caring. Something happened when he got older. People didn't seem to think he deserved attention anymore. All the doctors wanted to do was keep him sedated now - no need to try and treat the boy. After all, he really has no future. Funny thing though, we also housed many teens in a " halfway house " situation. By this, I mean, we took in teenagers that had been in Youth Detention Centers. My home was a place they stayed until they were ready to go back to their familys. I worked with the court system and the families and provided a place for them to bring the two together. Many of these teenagers were very troubled, but there was still the warm, loving child in them. My very handicapped son, somehow warmed their hearts and many of them began to understand that their lives were far more blessed than they ever believed before. He was a form of therapy. This marvelous transition was noted by the authorities. So what am I trying to say with all this? Perhaps it is time to bring attention to the teenage needs. Therein lies a great potential. They are really the hope of the future and even though they are rough years for many, most of them pick up their chins and go into adulthood with their eyes looking forward to achieving mighty goals. My teens were obviously symptomatic, although we weren't aware of it. They have become wonderful adults and have provided me with 13 beautiful grandchildren. The most severly affected of them was not supposed to live beyond his 20th birthday - or at least that is what the doctors told me. He is now almost 32 and even with his limitations, he is still giving much to many and I am grateful to be his Mom. Alice Re: Medical Necessity Laurie, Jeannine, and Jill -- I also have two adult sons (just 35, almost 37). Awaiting DNA on me, but biopsy only done in April ('99). Too few mitos, fiber disproportion (my term!) and OXPHOS problem (think I mentioned this before.) Looking back at things that were " crazy " , I know that I have always had this mitochondrial disorder. I suspect that both my sons are mito..... one does not want to discuss it..... have not talked to other yet. My half-sister (same mother) also does not want to discuss it. I believe that two of her four children are affected. When DNA comes back, I will try again if it seems like a good idea. As always, no matter how much we do or do not know, and no matter how determined we are to try to stay functional, we are at the mercy of the docs and the labs..and for the most part, they are not living in our, or our children's, bodies. Sad state of affairs, but it all boils down to the old saying that goes something like " never judge another person until you have walked a mile in their shoes...... " I know that I sometimes forget that this applies in both directions. History has shown that gaining national awareness and support for almost anything is a long and frustrating process. Just look at the advances in this field in the last few years, however. Those of us who have energy left over from getting through the day must now start a concerted effort to draw attention to our plight. Younger kids attract more attention initially, but the world is a little tired of that approach I suspect. Maybe this would be the time to use the teens, especially those who have accomplished so much despite their physical difficulties and, in many cases, financial situations. I work with angry and dysfunctional teens who have come into contact with the justice system. Most of them drink, smoke or do drugs and there is plenty of national attention focused on the misdeeds of such angry and substance using young people. Maybe we could divert some of that attention to the teens who are so tired most of the time, that they must devote their time and energy to accomplish what they can when not taking meds or seeing docs. Let me know what you think. For those of you with younger kids who may feel that I don't understand what you are going through now and can't understand why I am jumping ahead to the teen years, perhaps the following will help: My younger son Gregg, now 35, was born with an immune deficiency. From the time he stopped nursing, he was terribly sick all the time, one infection after another. We lived in upstate Pennsylvania, in the woods, but were lucky enough to have a pediatrician (not board certified) who decided to get to the bottom of it when he was 19 mos old, was sleeping 20 hours a day, never had a temp of less than 100+ despite being on two antibiotics most of the time and had chronic diarrhea. He was in and out of the local hosp, mostly in acute respiratory distress. It was 1966.....she ran every test she could think of...then decided to send him to Children's Hosp in Philly. They did every test they could think of (CF, etc...), told me I was crazy...nothing wrong, take him home, stop worrying. Anybody heard that before??? I was carrying him down the hall with tears streaming down my face because I KNEW there was something wrong, when they came running after me. He IS sick, they said. No gamma globulin level at all...... He would probably die before he was 2 because of the infections. They admitted him to the CRC and confirmed everything, said he would need 10 CC of GG every 10 days just to maybe keep going. keep him away from anybody with an infection (right!!), keep him on penicillen, sulfa drugs, and something else, and be sure he stayed quiet...... (that wasn't difficult....) The GG was $100 a shot, our income was $65/wk for a family of four....Our pedi paid for the GG herself, but eventually we got it free from the Red Cross (after the pedi filed 6 copies of everything through Washington...) Sound familiar??? I tell you this because what we must all do is to focus on the future. That often gets you to tomorrow. There ARE adult mitos....that must mean something. And that little boy who was going to die before he was two is a mathematician, married and has two children. With love and respect for all of you dealing with the day to day problems of any mitochondrial disorder, Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 Jill- I am an adult with mito. One, but probably both of my grown sons also has mito. I was dianosed with a complex I defect by Dr. Shoffner. I saw him last July. I am still waiting for the DNA information to come back. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 Jill- I am an adult with mito. One, but probably both of my grown sons also has mito. I was dianosed with a complex I defect by Dr. Shoffner. I saw him last July. I am still waiting for the DNA information to come back. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 1999 Report Share Posted June 6, 1999 Laurie.... You are welcome,,,,and glad to hear that your son is doing well!!!! *S* Merril Quote Link to comment Share on other sites More sharing options...
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