Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 I just got my UMDF news letter. It looks like Dawn Crutchfield, Sherri Clitheroe, Lissa Miarand, and Dave Chiusano and Kane deserve some credit for helping out the mito community. All of these people have donated their time to run mito support groups in their area. Also, Lori Camaiani has done it again in raising money and awareness of mito in their local Florida area. This is a perfect example of how promoting local awareness still helps us all. All that money that Lori raised will be used to support mito research that will help us all. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 Hi, Ditto to what Kathy said. I am sorry if I missed anyone, it wasn't intentional. Just reading the UMDF newsletter, I saw many others that I neglected to mention. Another easy way to get the word about mito would be to ask you local library to subsrcibe to UMDF or donate your own newsletter once you've read it. I asked my library to get Exceptional Parent, Quest and UMDF. Unfortunately I haven't got a response but the accept donated newsletters. I give them my UMDF when I am all done. Hopefully someone will read it. I have tried talking to people in the fibromyalgia room to bring up the possibility of mito as being the cause. I was met with a less than welcome response. Some people are just not ready to hear it. I think that being active on Our Kids list helps as well. People will notice that I discuss similar issues as their kids, pick up on the mention of mitochondrial disease in the sign off and before long they are emailing me to ask about mito disease. A few have even headed down to Atlanta! Little things like having mito disease listed in your sign off helps " advertise " . Lori Kathy wrote: > > > Isn't it fabulous? And not one of these people has asked for credit for > what they have done! > Thanks you all who have done things and those who haven't been listed. > > >I just got my UMDF news letter. It looks like Dawn Crutchfield, > >Sherri Clitheroe, Lissa Miarand, and Dave Chiusano and > >Kane deserve some credit for helping out the mito community. All of > >these people have donated their time to run mito support groups in > >their area. > > > >Also, Lori Camaiani has done it again in raising money and awareness > >of mito in their local Florida area. This is a perfect example of how > >promoting local awareness still helps us all. All that money that > >Lori raised will be used to support mito research that will help us > >all. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 1999 Report Share Posted July 8, 1999 Isn't it fabulous? And not one of these people has asked for credit for what they have done! Thanks you all who have done things and those who haven't been listed. >I just got my UMDF news letter. It looks like Dawn Crutchfield, >Sherri Clitheroe, Lissa Miarand, and Dave Chiusano and >Kane deserve some credit for helping out the mito community. All of >these people have donated their time to run mito support groups in >their area. > >Also, Lori Camaiani has done it again in raising money and awareness >of mito in their local Florida area. This is a perfect example of how >promoting local awareness still helps us all. All that money that >Lori raised will be used to support mito research that will help us >all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 1999 Report Share Posted July 9, 1999 Quest Magazine is published by the MDA for people with muscular dystrophy. Mitochondrial Myopathy is one of the 40 types of muscular dystrophy covered. You can read it on the internet at: http//www.mdausa.org Lori Sei1126@... wrote: > From: Sei1126@... > > What is Quest magazine all about? > Janelle MCGuire > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 In a message dated 7/9/1999 8:20:45 PM Eastern Daylight Time, Sei1126@... writes: > What is Quest magazine all about? A wonderful publication by the Muscular Dystrophy folks, available free to anyone who has any of the MDA's long list of diagnoses. I read it cover to cover. It reports research findings, new treatment options, good deals on equipment, human interest, the works. the Elder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Me, too! It is helpful to learn of the progesses that are being made for those with muscular dystrophy including us " mitos " . Another note of interest to us mito patients. Research is being made on another front. It was just published last week in our local newspaper. A researcher at the Univ of NV, Reno is investigating the overtraining syndrome in high endurance athletes. He happened to come in contact with some cyclists who were training for the " Death Ride " here in the Sierras and has now pursued studies into what happens with muscle over use. This researcher has also been a recipient of a MDA grant to investigate how the mitochondrion works. Linna Arrants@... wrote: > > From: Arrants@... > > In a message dated 7/9/1999 8:20:45 PM Eastern Daylight Time, Sei1126@... > writes: > > > What is Quest magazine all about? > > A wonderful publication by the Muscular Dystrophy folks, available free to > anyone who has any of the MDA's long list of diagnoses. I read it cover to > cover. It reports research findings, new treatment options, good deals on > equipment, human interest, the works. > > the Elder > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Me, too! It is helpful to learn of the progesses that are being made for those with muscular dystrophy including us " mitos " . Another note of interest to us mito patients. Research is being made on another front. It was just published last week in our local newspaper. A researcher at the Univ of NV, Reno is investigating the overtraining syndrome in high endurance athletes. He happened to come in contact with some cyclists who were training for the " Death Ride " here in the Sierras and has now pursued studies into what happens with muscle over use. This researcher has also been a recipient of a MDA grant to investigate how the mitochondrion works. Linna Arrants@... wrote: > > From: Arrants@... > > In a message dated 7/9/1999 8:20:45 PM Eastern Daylight Time, Sei1126@... > writes: > > > What is Quest magazine all about? > > A wonderful publication by the Muscular Dystrophy folks, available free to > anyone who has any of the MDA's long list of diagnoses. I read it cover to > cover. It reports research findings, new treatment options, good deals on > equipment, human interest, the works. > > the Elder > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Dear Lori: How beautiful was what you wrote. How true it was. How supportive. One correction...I did not start MitoList... Dennis from Canada did. My contribution was to be one of the Administators of the list in the beginning. I started the very first not-for-profit mitochondrial foundation in the US, the Mitochondrial Disorders Foundation of America (MDFA), that was an " umbrella " foundation serving " all " mitochondrial diseases, rather than a particular mito-disorder, i.e. COX or Leigh's Disease in particular. MDFA had 130 members. but served many more with written information, support and referals. I was only a very small stepping stone, my friend. Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 1999 Report Share Posted July 16, 1999 Dear Lori: How beautiful was what you wrote. How true it was. How supportive. One correction...I did not start MitoList... Dennis from Canada did. My contribution was to be one of the Administators of the list in the beginning. I started the very first not-for-profit mitochondrial foundation in the US, the Mitochondrial Disorders Foundation of America (MDFA), that was an " umbrella " foundation serving " all " mitochondrial diseases, rather than a particular mito-disorder, i.e. COX or Leigh's Disease in particular. MDFA had 130 members. but served many more with written information, support and referals. I was only a very small stepping stone, my friend. Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 >I was only a very small stepping stone, my friend. > >Lynnie Ah, yes but an important one! As I reviewed the materials I got at the first UMDF conference, I looked over the article about you & kids that was handed out. Very nice and now that I " know " you it was so much more meaningful. I think you and I had a meal together as a matter of fact. You created some roads where none were there! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 >I was only a very small stepping stone, my friend. > >Lynnie Ah, yes but an important one! As I reviewed the materials I got at the first UMDF conference, I looked over the article about you & kids that was handed out. Very nice and now that I " know " you it was so much more meaningful. I think you and I had a meal together as a matter of fact. You created some roads where none were there! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 This is ...Jonah's mom, has anyone else heard of a couple with a child with a mito disorder being falsely accused of child abuse or Munchhausen Syndrome? I found a couple on another website,but I was wondering if anyone here has.Jonah has had symptoms that I have read here that you are all experiencing as well with your kids, yet these same problems in Jonah are being questioned.I guess it depends on who your doctor is and their understanding of mito disorders.He has had 2 biopsies, both positive for mito complex1, as well as his carnitine deficiency and GERD.He gets strange infections when he is on his intermittent TPN, like yeast or fungal line infections and he has benn on and off failure to thrive.He is nonverbal and a non walker.He has low muscle tone and digestive difficulties.He fluctuates between diarhhea and constpation and has muscle spasms.He has had a nissen fundoplacatione due to reflux and delayed gastric emptying.All these problems are being questioned although they " seem " to be related to a mito disorder, what do you guys think? > >Reply-To: Mitoonelist >To: >CC: <mitoonelist> >Subject: Re: support groups >Date: Tue, 20 Jul 1999 17:33:58 -0600 > > > > >I was only a very small stepping stone, my friend. > > > >Lynnie > > >Ah, yes but an important one! As I reviewed the materials I got at the >first UMDF >conference, I looked over the article about you & kids that was handed out. >Very nice >and now that I " know " you it was so much more meaningful. I think you and >I >had a >meal together as a matter of fact. > >You created some roads where none were there! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 This is ...Jonah's mom, has anyone else heard of a couple with a child with a mito disorder being falsely accused of child abuse or Munchhausen Syndrome? I found a couple on another website,but I was wondering if anyone here has.Jonah has had symptoms that I have read here that you are all experiencing as well with your kids, yet these same problems in Jonah are being questioned.I guess it depends on who your doctor is and their understanding of mito disorders.He has had 2 biopsies, both positive for mito complex1, as well as his carnitine deficiency and GERD.He gets strange infections when he is on his intermittent TPN, like yeast or fungal line infections and he has benn on and off failure to thrive.He is nonverbal and a non walker.He has low muscle tone and digestive difficulties.He fluctuates between diarhhea and constpation and has muscle spasms.He has had a nissen fundoplacatione due to reflux and delayed gastric emptying.All these problems are being questioned although they " seem " to be related to a mito disorder, what do you guys think? > >Reply-To: Mitoonelist >To: >CC: <mitoonelist> >Subject: Re: support groups >Date: Tue, 20 Jul 1999 17:33:58 -0600 > > > > >I was only a very small stepping stone, my friend. > > > >Lynnie > > >Ah, yes but an important one! As I reviewed the materials I got at the >first UMDF >conference, I looked over the article about you & kids that was handed out. >Very nice >and now that I " know " you it was so much more meaningful. I think you and >I >had a >meal together as a matter of fact. > >You created some roads where none were there! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 This is ...Jonah's mom, has anyone else heard of a couple with a child with a mito disorder being falsely accused of child abuse or Munchhausen Syndrome? I found a couple on another website,but I was wondering if anyone here has.Jonah has had symptoms that I have read here that you are all experiencing as well with your kids, yet these same problems in Jonah are being questioned.I guess it depends on who your doctor is and their understanding of mito disorders.He has had 2 biopsies, both positive for mito complex1, as well as his carnitine deficiency and GERD.He gets strange infections when he is on his intermittent TPN, like yeast or fungal line infections and he has benn on and off failure to thrive.He is nonverbal and a non walker.He has low muscle tone and digestive difficulties.He fluctuates between diarhhea and constpation and has muscle spasms.He has had a nissen fundoplacatione due to reflux and delayed gastric emptying.All these problems are being questioned although they " seem " to be related to a mito disorder, what do you guys think? > >Reply-To: Mitoonelist >To: >CC: <mitoonelist> >Subject: Re: support groups >Date: Tue, 20 Jul 1999 17:33:58 -0600 > > > > >I was only a very small stepping stone, my friend. > > > >Lynnie > > >Ah, yes but an important one! As I reviewed the materials I got at the >first UMDF >conference, I looked over the article about you & kids that was handed out. >Very nice >and now that I " know " you it was so much more meaningful. I think you and >I >had a >meal together as a matter of fact. > >You created some roads where none were there! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 - This is such a tough issue . . . It seems that you need supportive professionals on your side. Who did the muscle biopsy and diagnosed the Complex 1? Can that person help provide information about what that means to the other doctors? Perhaps that person would be a source of support. Or maybe it would help to find a really knowledgeable mito doctor. . . of course, those are in short supply. I have not been accused of Munchausen By Proxy, but I worried tremendously about it early on. In the beginning, I was told that 's feeding problems were not medically based but rather learned behavior due presumably to our feeding practices or my tension during feeding times. Funny, I have an older child who NEVER had feeding problems and my feeding practices led her to prefer grilled eggplant to strawberry pie! As a result, I tried meditation prior to feedings, listened to relaxation tapes, and prayed throughout every feeding. His feeding problems didn't get any better, until 8 months later when he was vomitting blood, and finally they decided that maybe he did have reflux! He was scoped and had erosive esophagitis. How awful it is to feel blamed for your child's difficulty. How much more horrible when it means that you are separated from your child, especially at such a difficult time. It seems that you have the diagnostic labels that would help avert accusations . . . Do you know exactly what they are saying you have done? Can each issue be tied to a condition or symptom that has been identified in a medical/diagnostic report? I think some time ago on the Our Kids list, there was a string of messages related to parents of special needs children being accused of MBP. I also think that there is a group on the internet . . . Mothers against Munchausen by Proxy. I do not know enough about these people to know if they are credible, but you might check it out. I think it was started by a mother who was accused and fought it and now tries to help other mothers. Good luck. Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 - This is such a tough issue . . . It seems that you need supportive professionals on your side. Who did the muscle biopsy and diagnosed the Complex 1? Can that person help provide information about what that means to the other doctors? Perhaps that person would be a source of support. Or maybe it would help to find a really knowledgeable mito doctor. . . of course, those are in short supply. I have not been accused of Munchausen By Proxy, but I worried tremendously about it early on. In the beginning, I was told that 's feeding problems were not medically based but rather learned behavior due presumably to our feeding practices or my tension during feeding times. Funny, I have an older child who NEVER had feeding problems and my feeding practices led her to prefer grilled eggplant to strawberry pie! As a result, I tried meditation prior to feedings, listened to relaxation tapes, and prayed throughout every feeding. His feeding problems didn't get any better, until 8 months later when he was vomitting blood, and finally they decided that maybe he did have reflux! He was scoped and had erosive esophagitis. How awful it is to feel blamed for your child's difficulty. How much more horrible when it means that you are separated from your child, especially at such a difficult time. It seems that you have the diagnostic labels that would help avert accusations . . . Do you know exactly what they are saying you have done? Can each issue be tied to a condition or symptom that has been identified in a medical/diagnostic report? I think some time ago on the Our Kids list, there was a string of messages related to parents of special needs children being accused of MBP. I also think that there is a group on the internet . . . Mothers against Munchausen by Proxy. I do not know enough about these people to know if they are credible, but you might check it out. I think it was started by a mother who was accused and fought it and now tries to help other mothers. Good luck. Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 > >This is ...Jonah's mom, has anyone else heard of a couple with a >child with a mito disorder being falsely accused of child abuse or >Munchhausen Syndrome? The difficulty that I have is that I know one family with a metabolic disorder who was accused of MBP but it seems that in this case the mother was aggravating the symptoms in order to get the doctors to pay attention and get a better diagnosis. Things such as failing to clean the tubes, feed the child correctly etc. until the child's symptoms would flare and get him hospitalized in order to stop the problems. She hoped to get the firm diagnosis and the docs would stabilize the kid soon after admit and realized that as long as he was cared for by nurses he did fine, but at home he was deteriorating. I don't think this actually qualifies as MBP as it's more deliberate and once accused/found out she stopped. However, she is now suing the school district for other stuff! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 > >This is ...Jonah's mom, has anyone else heard of a couple with a >child with a mito disorder being falsely accused of child abuse or >Munchhausen Syndrome? The difficulty that I have is that I know one family with a metabolic disorder who was accused of MBP but it seems that in this case the mother was aggravating the symptoms in order to get the doctors to pay attention and get a better diagnosis. Things such as failing to clean the tubes, feed the child correctly etc. until the child's symptoms would flare and get him hospitalized in order to stop the problems. She hoped to get the firm diagnosis and the docs would stabilize the kid soon after admit and realized that as long as he was cared for by nurses he did fine, but at home he was deteriorating. I don't think this actually qualifies as MBP as it's more deliberate and once accused/found out she stopped. However, she is now suing the school district for other stuff! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 > >This is ...Jonah's mom, has anyone else heard of a couple with a >child with a mito disorder being falsely accused of child abuse or >Munchhausen Syndrome? The difficulty that I have is that I know one family with a metabolic disorder who was accused of MBP but it seems that in this case the mother was aggravating the symptoms in order to get the doctors to pay attention and get a better diagnosis. Things such as failing to clean the tubes, feed the child correctly etc. until the child's symptoms would flare and get him hospitalized in order to stop the problems. She hoped to get the firm diagnosis and the docs would stabilize the kid soon after admit and realized that as long as he was cared for by nurses he did fine, but at home he was deteriorating. I don't think this actually qualifies as MBP as it's more deliberate and once accused/found out she stopped. However, she is now suing the school district for other stuff! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 what is MPB? Re: support groups > > >> >>This is ...Jonah's mom, has anyone else heard of a couple with a >>child with a mito disorder being falsely accused of child abuse or >>Munchhausen Syndrome? > >The difficulty that I have is that I know one family with a metabolic >disorder >who was accused of MBP but it seems that in this case the mother was >aggravating the symptoms in order to get the doctors to pay attention and >get a better diagnosis. Things such as failing to clean the tubes, feed the >child correctly etc. until the child's symptoms would flare and get him >hospitalized in order to stop the problems. She hoped to get the firm >diagnosis and the docs would stabilize the kid soon after admit and realized >that as long as he was cared for by nurses he did fine, but at home he was >deteriorating. I don't think this actually qualifies as MBP as it's more >deliberate and once accused/found out she stopped. However, she is >now suing the school district for other stuff! > >Kathy > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 what is MPB? Re: support groups > > >> >>This is ...Jonah's mom, has anyone else heard of a couple with a >>child with a mito disorder being falsely accused of child abuse or >>Munchhausen Syndrome? > >The difficulty that I have is that I know one family with a metabolic >disorder >who was accused of MBP but it seems that in this case the mother was >aggravating the symptoms in order to get the doctors to pay attention and >get a better diagnosis. Things such as failing to clean the tubes, feed the >child correctly etc. until the child's symptoms would flare and get him >hospitalized in order to stop the problems. She hoped to get the firm >diagnosis and the docs would stabilize the kid soon after admit and realized >that as long as he was cared for by nurses he did fine, but at home he was >deteriorating. I don't think this actually qualifies as MBP as it's more >deliberate and once accused/found out she stopped. However, she is >now suing the school district for other stuff! > >Kathy > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 what is MPB? Re: support groups > > >> >>This is ...Jonah's mom, has anyone else heard of a couple with a >>child with a mito disorder being falsely accused of child abuse or >>Munchhausen Syndrome? > >The difficulty that I have is that I know one family with a metabolic >disorder >who was accused of MBP but it seems that in this case the mother was >aggravating the symptoms in order to get the doctors to pay attention and >get a better diagnosis. Things such as failing to clean the tubes, feed the >child correctly etc. until the child's symptoms would flare and get him >hospitalized in order to stop the problems. She hoped to get the firm >diagnosis and the docs would stabilize the kid soon after admit and realized >that as long as he was cared for by nurses he did fine, but at home he was >deteriorating. I don't think this actually qualifies as MBP as it's more >deliberate and once accused/found out she stopped. However, she is >now suing the school district for other stuff! > >Kathy > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Hi Kathy, it has been tough.It was our son's gastro doctor who we were threatening to charge with negligence that accused of us this. It was 's lab that diagnosed the complex 1 twice and he is pretty well respected.The problem is at this hospital they all watch out for each other and no one doctor would go against another there.Now the ball is in the Children's Aid's court and they have to follow a certain procedure with every allegation that they get.They also are confused by what a mito disorder is and what it means to Jonah's case.Munchhauses syndrome is also pretty complicated and it is not something a small town CAS office encounters.We are just in shock over this, my husband and I are attachment parenters, do not believe in spanking or enforced discipline and are very natural people, if this can happen to us it can happen to anybody!We went through the same feeding issues as you early on, we used those relaxation feeding tapes and lactation consultants and different nipples and varied formulas.Nothing ever worked until he got his gtube.His reflux was severe.We are getting an expert opinion soon I hope.Our lawyer has contacted Dr.Naviaux at UCLA for his medical input.We return to court next wednesday.We had to undergo psychological assessments so hopefully this will show we are not abusive people.We aren't perfect parents but we have always strived to have a gentle, loving and nurturing environment in our home.We have a healthy and happy 4 yr old to attest to that!Please be careful and warn everyone else you know with a mito child to be careful.I went to that website for moms who have been falsely accused of Munchhausens and they have a chat group but it was very harsh I found.They think that the hospitals and docs and social service agencies do this so they can take peoples children and put them into adoptive families to make money!I thought that was a bit far fetched!I just think some doctors are not honest and sometimes they just make a bad call.They are only human after all.We are angry this happened but not delusional.Well, I should get going and I'll talk to you later. >From: KCorley309@... >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: support groups >Date: Wed, 21 Jul 1999 10:28:15 EDT > >From: KCorley309@... > > - > >This is such a tough issue . . . It seems that you need supportive >professionals on your side. Who did the muscle biopsy and diagnosed the >Complex 1? Can that person help provide information about what that means >to >the other doctors? Perhaps that person would be a source of support. Or >maybe it would help to find a really knowledgeable mito doctor. . . of >course, those are in short supply. > >I have not been accused of Munchausen By Proxy, but I worried tremendously >about it early on. In the beginning, I was told that 's feeding >problems >were not medically based but rather learned behavior due presumably to our >feeding practices or my tension during feeding times. Funny, I have an >older >child who NEVER had feeding problems and my feeding practices led her to >prefer grilled eggplant to strawberry pie! As a result, I tried meditation >prior to feedings, listened to relaxation tapes, and prayed throughout >every >feeding. His feeding problems didn't get any better, until 8 months later >when he was vomitting blood, and finally they decided that maybe he did >have >reflux! He was scoped and had erosive esophagitis. > >How awful it is to feel blamed for your child's difficulty. How much more >horrible when it means that you are separated from your child, especially >at >such a difficult time. > >It seems that you have the diagnostic labels that would help avert >accusations . . . Do you know exactly what they are saying you have done? >Can each issue be tied to a condition or symptom that has been identified >in >a medical/diagnostic report? > >I think some time ago on the Our Kids list, there was a string of messages >related to parents of special needs children being accused of MBP. I also >think that there is a group on the internet . . . Mothers against >Munchausen >by Proxy. I do not know enough about these people to know if they are >credible, but you might check it out. I think it was started by a mother >who >was accused and fought it and now tries to help other mothers. > >Good luck. > >Kathy >mom to and > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Hi Kathy, it has been tough.It was our son's gastro doctor who we were threatening to charge with negligence that accused of us this. It was 's lab that diagnosed the complex 1 twice and he is pretty well respected.The problem is at this hospital they all watch out for each other and no one doctor would go against another there.Now the ball is in the Children's Aid's court and they have to follow a certain procedure with every allegation that they get.They also are confused by what a mito disorder is and what it means to Jonah's case.Munchhauses syndrome is also pretty complicated and it is not something a small town CAS office encounters.We are just in shock over this, my husband and I are attachment parenters, do not believe in spanking or enforced discipline and are very natural people, if this can happen to us it can happen to anybody!We went through the same feeding issues as you early on, we used those relaxation feeding tapes and lactation consultants and different nipples and varied formulas.Nothing ever worked until he got his gtube.His reflux was severe.We are getting an expert opinion soon I hope.Our lawyer has contacted Dr.Naviaux at UCLA for his medical input.We return to court next wednesday.We had to undergo psychological assessments so hopefully this will show we are not abusive people.We aren't perfect parents but we have always strived to have a gentle, loving and nurturing environment in our home.We have a healthy and happy 4 yr old to attest to that!Please be careful and warn everyone else you know with a mito child to be careful.I went to that website for moms who have been falsely accused of Munchhausens and they have a chat group but it was very harsh I found.They think that the hospitals and docs and social service agencies do this so they can take peoples children and put them into adoptive families to make money!I thought that was a bit far fetched!I just think some doctors are not honest and sometimes they just make a bad call.They are only human after all.We are angry this happened but not delusional.Well, I should get going and I'll talk to you later. >From: KCorley309@... >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: support groups >Date: Wed, 21 Jul 1999 10:28:15 EDT > >From: KCorley309@... > > - > >This is such a tough issue . . . It seems that you need supportive >professionals on your side. Who did the muscle biopsy and diagnosed the >Complex 1? Can that person help provide information about what that means >to >the other doctors? Perhaps that person would be a source of support. Or >maybe it would help to find a really knowledgeable mito doctor. . . of >course, those are in short supply. > >I have not been accused of Munchausen By Proxy, but I worried tremendously >about it early on. In the beginning, I was told that 's feeding >problems >were not medically based but rather learned behavior due presumably to our >feeding practices or my tension during feeding times. Funny, I have an >older >child who NEVER had feeding problems and my feeding practices led her to >prefer grilled eggplant to strawberry pie! As a result, I tried meditation >prior to feedings, listened to relaxation tapes, and prayed throughout >every >feeding. His feeding problems didn't get any better, until 8 months later >when he was vomitting blood, and finally they decided that maybe he did >have >reflux! He was scoped and had erosive esophagitis. > >How awful it is to feel blamed for your child's difficulty. How much more >horrible when it means that you are separated from your child, especially >at >such a difficult time. > >It seems that you have the diagnostic labels that would help avert >accusations . . . Do you know exactly what they are saying you have done? >Can each issue be tied to a condition or symptom that has been identified >in >a medical/diagnostic report? > >I think some time ago on the Our Kids list, there was a string of messages >related to parents of special needs children being accused of MBP. I also >think that there is a group on the internet . . . Mothers against >Munchausen >by Proxy. I do not know enough about these people to know if they are >credible, but you might check it out. I think it was started by a mother >who >was accused and fought it and now tries to help other mothers. > >Good luck. > >Kathy >mom to and > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Hi Kathy , well that sure sounds abusive to me,More like neglectful maybe.That isn't the way to get a firm diagnosis.You just have to hope you get one.That is really awful, did she get charged? > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: support groups >Date: Wed, 21 Jul 1999 09:39:58 -0600 > > > > > > >This is ...Jonah's mom, has anyone else heard of a couple with a > >child with a mito disorder being falsely accused of child abuse or > >Munchhausen Syndrome? > >The difficulty that I have is that I know one family with a metabolic >disorder >who was accused of MBP but it seems that in this case the mother was >aggravating the symptoms in order to get the doctors to pay attention and >get a better diagnosis. Things such as failing to clean the tubes, feed >the >child correctly etc. until the child's symptoms would flare and get him >hospitalized in order to stop the problems. She hoped to get the firm >diagnosis and the docs would stabilize the kid soon after admit and >realized >that as long as he was cared for by nurses he did fine, but at home he was >deteriorating. I don't think this actually qualifies as MBP as it's more >deliberate and once accused/found out she stopped. However, she is >now suing the school district for other stuff! > >Kathy > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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