Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 I would like to thank EVERYONE for the words of encouragement and the knowledgement that I am not the only mom that has been accused of my children's problems. I have received WONDERFUL news in the mail yesterday! The CPS case was closed! They have found that I am not neglecting or abusing my children! I am not the the cause of their illnesses. Of course, I knew that all along, but I am glad that they finally figured that out! I had given them the names of my children's nurse from the pediatricians office (who is also my best friend and is in our house all the time), their PT and ST who have both been in our house twice a week for four years, pediatrician (who we have used for 5 ½ years), and our new OT (used for 2 months). The only people that the case worker talked to were the nurse and the PT. I did find out that it was an OT that was only working with the children for four months and got mad because I reported to her boss that she was falsifying medical documentation (and told her boss that she was no longer welcome in my house after some other problems with her also) that called CPS and made these false allegations. She actually made the call when we were gone on my son's Make-a-Wish trip. Yes, her boss, the company owner, our nurse and I are going to be having a discussion to inform them as to what she did since she was doing it purely out of vindictiveness. Even our PT, ST and new OT say that I need to talk to them. I am asking for prayer about this situation though. I want them to see that I am not trying to get her into trouble, but I do not EVER want her to do this to another family simply because she was in trouble for not doing her job correctly. Please pray that they will see that I am only trying to protect other families in the future and am not trying to get anyone in trouble. However, I AM ELATED THAT THE TRUTH CAME OUT AND THE CASE IS OFFICALLY CLOSED!!!!!!! Thank you all so much for your support and encouragement! I truly appreciate it! I know that I got very quiet after I posted, I have just been having so much going on. I have been reading and praying for everyone though. I have been reading about those of you who have gone to Dr. Cohen and Dr. Shoffner. Is either one recommended over the other? Where are they located? How do you get in touch with them? I am ready to take my three children and myself to them. I am tired of the, " I don't knows " and the, " we will sees " . Now I am being told they think it is MNGIE. Anyone out there have a child with this type? Any info? I am ready for some answers! I am ready to go wherever I have to. Did your insurance pay? What about your state Medicaid? Did they pay? I would like to ask a question for those of you who are adults with Mito. Where is the site for adults with Mito? How long did it take you to get diagnosed? How was it different from your children? The doctors think that I am having an adult onset. Thank you so much! Laurie on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 I would like to thank EVERYONE for the words of encouragement and the knowledgement that I am not the only mom that has been accused of my children's problems. I have received WONDERFUL news in the mail yesterday! The CPS case was closed! They have found that I am not neglecting or abusing my children! I am not the the cause of their illnesses. Of course, I knew that all along, but I am glad that they finally figured that out! I had given them the names of my children's nurse from the pediatricians office (who is also my best friend and is in our house all the time), their PT and ST who have both been in our house twice a week for four years, pediatrician (who we have used for 5 ½ years), and our new OT (used for 2 months). The only people that the case worker talked to were the nurse and the PT. I did find out that it was an OT that was only working with the children for four months and got mad because I reported to her boss that she was falsifying medical documentation (and told her boss that she was no longer welcome in my house after some other problems with her also) that called CPS and made these false allegations. She actually made the call when we were gone on my son's Make-a-Wish trip. Yes, her boss, the company owner, our nurse and I are going to be having a discussion to inform them as to what she did since she was doing it purely out of vindictiveness. Even our PT, ST and new OT say that I need to talk to them. I am asking for prayer about this situation though. I want them to see that I am not trying to get her into trouble, but I do not EVER want her to do this to another family simply because she was in trouble for not doing her job correctly. Please pray that they will see that I am only trying to protect other families in the future and am not trying to get anyone in trouble. However, I AM ELATED THAT THE TRUTH CAME OUT AND THE CASE IS OFFICALLY CLOSED!!!!!!! Thank you all so much for your support and encouragement! I truly appreciate it! I know that I got very quiet after I posted, I have just been having so much going on. I have been reading and praying for everyone though. I have been reading about those of you who have gone to Dr. Cohen and Dr. Shoffner. Is either one recommended over the other? Where are they located? How do you get in touch with them? I am ready to take my three children and myself to them. I am tired of the, " I don't knows " and the, " we will sees " . Now I am being told they think it is MNGIE. Anyone out there have a child with this type? Any info? I am ready for some answers! I am ready to go wherever I have to. Did your insurance pay? What about your state Medicaid? Did they pay? I would like to ask a question for those of you who are adults with Mito. Where is the site for adults with Mito? How long did it take you to get diagnosed? How was it different from your children? The doctors think that I am having an adult onset. Thank you so much! Laurie on Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Laurie, Glad that the case is closed. About docs.....Cohen is at Cleveland Clinic. It take more than a year to get an appt with them. DON'T take an appt with Parikh, the fellow who works with Cohen. It is more likely to harm than help. Shoffner is in Atlanta. Whiteman is at Mayo. You will have to call the places to see if your state's medicaid is accepted. Cleveland Clinic, for example, accepts IL medicaid but Mayo does not (although it accepts some medicaid from some states). I am not sure about Atlanta. Cleveland and Atlanta do fresh biopsies. Cohen only does kids. You might have more luck being seen yourself with Whiteman at Mayo. He does not do fresh muscle biopsies but might be able to get the others to order them. If your insurance won't pay for Mayo you have to have a $2000 deposit for your initial visit. Mito is maternally inherited so I would expect that you would have it too. There is an adult mito group on yahoo. Have you looked at the umdf site? http://www.groups.yahoo.com/group/adultmito/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Laurie, Glad that the case is closed. About docs.....Cohen is at Cleveland Clinic. It take more than a year to get an appt with them. DON'T take an appt with Parikh, the fellow who works with Cohen. It is more likely to harm than help. Shoffner is in Atlanta. Whiteman is at Mayo. You will have to call the places to see if your state's medicaid is accepted. Cleveland Clinic, for example, accepts IL medicaid but Mayo does not (although it accepts some medicaid from some states). I am not sure about Atlanta. Cleveland and Atlanta do fresh biopsies. Cohen only does kids. You might have more luck being seen yourself with Whiteman at Mayo. He does not do fresh muscle biopsies but might be able to get the others to order them. If your insurance won't pay for Mayo you have to have a $2000 deposit for your initial visit. Mito is maternally inherited so I would expect that you would have it too. There is an adult mito group on yahoo. Have you looked at the umdf site? http://www.groups.yahoo.com/group/adultmito/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 > Mito is maternally inherited so I would expect that you would have it too. Mito is not always maternally inherited. See the article on umdf.org by Dr. Boles. mom to Emilie, 18, cp & mito (complex IV) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 > Mito is maternally inherited so I would expect that you would have it too. Mito is not always maternally inherited. See the article on umdf.org by Dr. Boles. mom to Emilie, 18, cp & mito (complex IV) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 , I have not seen anything that said that our cell's mitochondria are inherited any other way but maternally. It is true, though, that metabolic diseases are inherited in many ways. Some people call all metabolic diseases mytochondrial cytopathies. DNA testing done in criminal testing often uses mitochondrial testing. They need maternal relatives for this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 , I have not seen anything that said that our cell's mitochondria are inherited any other way but maternally. It is true, though, that metabolic diseases are inherited in many ways. Some people call all metabolic diseases mytochondrial cytopathies. DNA testing done in criminal testing often uses mitochondrial testing. They need maternal relatives for this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hi , >I have not seen anything that said that our cell's mitochondria are inherited any other way but maternally. It is true, though, that metabolic diseases are inherited in many ways. Some people call all metabolic diseases mytochondrial cytopathies. It is not a question of who the mitochondria are inherited from--that's always the mom--but of whether the disease is caused by a mutation of mitochondrial dna or nuclear dna. From the article by Dr. Boles: " Mitochondrial disease refers to any illness resulting from deficiency of any mitochondria-located protein which is involved in energy metabolism. Thus, deficiencies of the respiratory (electron transport) chain, either resulting from deficiency in one or more mitochondrial or nuclear-encoded proteins, are mitochondrial disorders. " The article is here: http://www.umdf.org/mitodisease/genetics.html I'm sorry I didn't take time to explain what I meant better in my earlier message. I just wanted wanted to get something out quickly (on my way out the door) to make sure people who are new here don't get the impression that having a child with a mitochondrial disease means the mother will definitely have it, too. Since the disease can be caused by a defect in mitochondrial or nuclear dna, it can be inherited from the father or the mother or both. Hope this helps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2005 Report Share Posted February 4, 2005 Hi , >I have not seen anything that said that our cell's mitochondria are inherited any other way but maternally. It is true, though, that metabolic diseases are inherited in many ways. Some people call all metabolic diseases mytochondrial cytopathies. It is not a question of who the mitochondria are inherited from--that's always the mom--but of whether the disease is caused by a mutation of mitochondrial dna or nuclear dna. From the article by Dr. Boles: " Mitochondrial disease refers to any illness resulting from deficiency of any mitochondria-located protein which is involved in energy metabolism. Thus, deficiencies of the respiratory (electron transport) chain, either resulting from deficiency in one or more mitochondrial or nuclear-encoded proteins, are mitochondrial disorders. " The article is here: http://www.umdf.org/mitodisease/genetics.html I'm sorry I didn't take time to explain what I meant better in my earlier message. I just wanted wanted to get something out quickly (on my way out the door) to make sure people who are new here don't get the impression that having a child with a mitochondrial disease means the mother will definitely have it, too. Since the disease can be caused by a defect in mitochondrial or nuclear dna, it can be inherited from the father or the mother or both. Hope this helps! Quote Link to comment Share on other sites More sharing options...
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