Guest guest Posted July 17, 2005 Report Share Posted July 17, 2005 Janet, It sounds as if Mito has hit your family hard! I am sorry for that, and sorry for your loss. I am taking a good but over the counter carnitine not Carnitor.You mention that you take Carnitor- does that mean you have had testing done? I am just starting to scratch the surface of that idea and all that it means.When our youngest daughter died the attending ER physician but mitochondrial disorder down as her cause of death. I fought that hard as none of our tests were conclusive. I also objected to the potential impact that could have on her siblings in the future as Death Certificates are public record. I argued that he would be denying them the ability to get medical insurance and/or life insurance in the future. Maybe an over statement but I don't think so. He did agree with me and changed the cause of death to seizure disorder which was more appropriate. So that's another question if all of you would be kind enough to answer. Prior to testing did everyone have all of insurance that you wanted? Does the testing being done impact one's coverage even if the tests were negative. The testing issue is also complicated in our family by the two other kids ( life ins for them?) and the bad taste of our youngest daughter. I allowed EVERY test possible to be done on her and my husband feels as if it was all for naught! All those needles (Oh how she screamed!) and it didn't do a lick of good! She still died. In his mind. I believed and still do that anything no matter how small they learned from her would help the next kid and maybe help them from living the life that Lily did. I should go make breakfast for some wee ones- more later. Thanks for being here. > Hello ,, > > I also take the Carnitor and Qgel though low doses since I have mild symptoms. > > My sister who was the first diagnosed back in 1996 also responded well to the carnitor, DCA, and the Q10 she was on. However, as her sister in law and the doctors pointed out that it was too little too late. > > Besides showing signs of dystmobility and severe constipation and attention, behavioral issues which the Carniqgel helps, we are having my 12 yr old son take them to build up the vitamins in his body. He started taking them about 2 yrs ago--I should have started it back in 1996 when my sister was diagnosed. My brother in law also has his son on the cocktail--he shows some signs of MELAS but not severe so has not been tested. My sisters boy is now 14. > > The Carnitor and CoQ10 are vitamins that everyone needs also. > > Janet Sample > Newbie > > > Greetings to all, another newbie here. > > Thought I should introduce myself. > > I am a 45 years old, happily married and mother of 3. > > I am not new to the disease. My youngest daughter had a suspected mito > disorder and was treated as such, yet 3 months after she died (during > an extended seizure) we got back her last test results from Mayo that > were all negative. > > Still she did respond well to Carnitor and the addition of the mito > cocktail. Just too many other issues by then.... > > I have had increasing sypmtoms of mito in the last 6 months (fatique! I > use to do so much), and increasing episodes of vomiting. I do take CoQ > 2x/day and regret any day I forget. > > I have done no testing on myself. > > I look forward to learning much from you all - some of you I know from > the kids mito list- > > Lee > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2005 Report Share Posted July 17, 2005 As for life insurance, you might want to take out (I know what this could mean financially) the lowest amount of life insurance you can on each of the kids. This way it can be increased or converted by them when they reach 18. The conversion can be done without any questions asked, but it would probably be best if the policy had this in writing. I always tell couples who are expecting their first baby to make sure to change their insurance policy to a family policy before the baby is born. We did not do this and my oldest son could not be insured until age 2 and then with high premiums, because he had severe seizures following birth and almost died. It is too bad that we have to decide on finding out what we want without having to research things like insurance before anything else. There is something wrong with the system. laurie > Janet, > It sounds as if Mito has hit your family hard! I am sorry for that, > and sorry for your loss. > > I am taking a good but over the counter carnitine not Carnitor.You > mention that you take Carnitor- does that mean you have had testing > done? I am just starting to scratch the surface of that idea and all > that it means.When our youngest daughter died the attending ER > physician but mitochondrial disorder down as her cause of death. I > fought that hard as none of our tests were conclusive. I also > objected to the potential impact that could have on her siblings in > the future as Death Certificates are public record. I argued that he > would be denying them the ability to get medical insurance and/or > life insurance in the future. Maybe an over statement but I don't > think so. He did agree with me and changed the cause of death to > seizure disorder which was more appropriate. > > So that's another question if all of you would be kind enough to > answer. Prior to testing did everyone have all of insurance that you > wanted? Does the testing being done impact one's coverage even if the > tests were negative. > > The testing issue is also complicated in our family by the two other > kids ( life ins for them?) and the bad taste of our youngest > daughter. I allowed EVERY test possible to be done on her and my > husband feels as if it was all for naught! All those needles (Oh how > she screamed!) and it didn't do a lick of good! She still died. In > his mind. I believed and still do that anything no matter how small > they learned from her would help the next kid and maybe help them > from living the life that Lily did. > > I should go make breakfast for some wee ones- more later. > Thanks for being here. > > > > > > > > > Hello ,, > > > > I also take the Carnitor and Qgel though low doses since I have > mild symptoms. > > > > My sister who was the first diagnosed back in 1996 also responded > well to the carnitor, DCA, and the Q10 she was on. However, as her > sister in law and the doctors pointed out that it was too little too > late. > > > > Besides showing signs of dystmobility and severe constipation and > attention, behavioral issues which the Carniqgel helps, we are having > my 12 yr old son take them to build up the vitamins in his body. He > started taking them about 2 yrs ago--I should have started it back in > 1996 when my sister was diagnosed. My brother in law also has his > son on the cocktail--he shows some signs of MELAS but not severe so > has not been tested. My sisters boy is now 14. > > > > The Carnitor and CoQ10 are vitamins that everyone needs also. > > > > Janet Sample > > Newbie > > > > > > Greetings to all, another newbie here. > > > > Thought I should introduce myself. > > > > I am a 45 years old, happily married and mother of 3. > > > > I am not new to the disease. My youngest daughter had a suspected > mito > > disorder and was treated as such, yet 3 months after she died > (during > > an extended seizure) we got back her last test results from Mayo > that > > were all negative. > > > > Still she did respond well to Carnitor and the addition of the > mito > > cocktail. Just too many other issues by then.... > > > > I have had increasing sypmtoms of mito in the last 6 months > (fatique! I > > use to do so much), and increasing episodes of vomiting. I do > take CoQ > > 2x/day and regret any day I forget. > > > > I have done no testing on myself. > > > > I look forward to learning much from you all - some of you I know > from > > the kids mito list- > > > > Lee > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein are not necessarily those of the list moderators. > The author of this e mail is entirely responsible for its content. > List members are reminded of their responsibility to evaluate the > content of the postings and consult with their physicians regarding > changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who > sends one is automatically moderated or removed depending on the > severity of the attack. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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