Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 , I wish I knew more to tell you but I do know that Lexi takes 100 mg 2x/day as she also has a CoQ deficinecy. We don't have a specific diagnosis on her so I can't tell you what specific mito problem it goes with. I also want you to know that your post did not come out sounding as negative....just sounded like a Mom who is doing her gut level best for her kid. I know it's exhausting....hang in there. Sam's a lucky girl. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Both of my boys receive high dose IVIg every 3-4 weeks. They've done this for the last 3 years. They have a lot of trouble with the infusions and therefore need to get them over 5 days as inpatients but I do feel we have worked out very good protocols for them that minimize the reactions they used to have. Please let me know if you would like more information and I'd be happy to share. (however, my 2 are being admitted Sun so I will be gone with them until the following weekend). Re: CoQ levels - both of my boys have had tremendous;y hard times getting into a normal level range - actually Sam is still not there despite doses of 10 mg/kg/day. We have found a few things that help as far as spacing out doses but it is an ongoing struggle to get those levels up. Some doctors do not feel that the levels in the blood are reflective of the intercellular levels. One thing I do know is that when the boys are ill their levels are severely low and this is seen in all acutely ill people - even those without Mito. I'm sorry your Sam continues to struggle. How are her bleeding issues these days? I think of you both and hope the IVIg goes well and more importantly - that it helps. Anne Update on > Hello all, sorry I havent written in awhile, but I have been reading. Sam > has been sick again and just cant kick anything anymore. She will be going > to UofC tomarrow to start monthly IvIg. can anyone fill me in more on that. > her genetic doc just called and said sams coq10 level is .9(range ..6-3.0)She > already takes 50 mgs 3xday so he is uping her. Does anyone know about c0q10 > deficiency? Is it common in mito? Does it go hand in hand with a particular > mito? You know all the usuall questions, I want to know everything, but as > we all know that rarely happens. Sorry to be negative, just been havin a > hard time lately. > Thanks, > > > > > > > _________________________________________________________________ > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > http://join.msn.com/?page=features/virus > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Both of my boys receive high dose IVIg every 3-4 weeks. They've done this for the last 3 years. They have a lot of trouble with the infusions and therefore need to get them over 5 days as inpatients but I do feel we have worked out very good protocols for them that minimize the reactions they used to have. Please let me know if you would like more information and I'd be happy to share. (however, my 2 are being admitted Sun so I will be gone with them until the following weekend). Re: CoQ levels - both of my boys have had tremendous;y hard times getting into a normal level range - actually Sam is still not there despite doses of 10 mg/kg/day. We have found a few things that help as far as spacing out doses but it is an ongoing struggle to get those levels up. Some doctors do not feel that the levels in the blood are reflective of the intercellular levels. One thing I do know is that when the boys are ill their levels are severely low and this is seen in all acutely ill people - even those without Mito. I'm sorry your Sam continues to struggle. How are her bleeding issues these days? I think of you both and hope the IVIg goes well and more importantly - that it helps. Anne Update on > Hello all, sorry I havent written in awhile, but I have been reading. Sam > has been sick again and just cant kick anything anymore. She will be going > to UofC tomarrow to start monthly IvIg. can anyone fill me in more on that. > her genetic doc just called and said sams coq10 level is .9(range ..6-3.0)She > already takes 50 mgs 3xday so he is uping her. Does anyone know about c0q10 > deficiency? Is it common in mito? Does it go hand in hand with a particular > mito? You know all the usuall questions, I want to know everything, but as > we all know that rarely happens. Sorry to be negative, just been havin a > hard time lately. > Thanks, > > > > > > > _________________________________________________________________ > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > http://join.msn.com/?page=features/virus > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2003 Report Share Posted March 1, 2003 Both of my boys receive high dose IVIg every 3-4 weeks. They've done this for the last 3 years. They have a lot of trouble with the infusions and therefore need to get them over 5 days as inpatients but I do feel we have worked out very good protocols for them that minimize the reactions they used to have. Please let me know if you would like more information and I'd be happy to share. (however, my 2 are being admitted Sun so I will be gone with them until the following weekend). Re: CoQ levels - both of my boys have had tremendous;y hard times getting into a normal level range - actually Sam is still not there despite doses of 10 mg/kg/day. We have found a few things that help as far as spacing out doses but it is an ongoing struggle to get those levels up. Some doctors do not feel that the levels in the blood are reflective of the intercellular levels. One thing I do know is that when the boys are ill their levels are severely low and this is seen in all acutely ill people - even those without Mito. I'm sorry your Sam continues to struggle. How are her bleeding issues these days? I think of you both and hope the IVIg goes well and more importantly - that it helps. Anne Update on > Hello all, sorry I havent written in awhile, but I have been reading. Sam > has been sick again and just cant kick anything anymore. She will be going > to UofC tomarrow to start monthly IvIg. can anyone fill me in more on that. > her genetic doc just called and said sams coq10 level is .9(range ..6-3.0)She > already takes 50 mgs 3xday so he is uping her. Does anyone know about c0q10 > deficiency? Is it common in mito? Does it go hand in hand with a particular > mito? You know all the usuall questions, I want to know everything, but as > we all know that rarely happens. Sorry to be negative, just been havin a > hard time lately. > Thanks, > > > > > > > _________________________________________________________________ > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > http://join.msn.com/?page=features/virus > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 > Both of my boys receive high dose IVIg every 3-4 weeks. They've done this > for the last 3 years. They have a lot of trouble with the infusions and > therefore need to get them over 5 days as inpatients but I do feel we have > worked out very good protocols for them that minimize the reactions they > used to have. Please let me know if you would like more information and I'd > be happy to share. (however, my 2 are being admitted Sun so I will be gone > with them until the following weekend). > > Re: CoQ levels - both of my boys have had tremendous;y hard times getting > into a normal level range - actually Sam is still not there despite doses of > 10 mg/kg/day. We have found a few things that help as far as spacing out > doses but it is an ongoing struggle to get those levels up. Some doctors do > not feel that the levels in the blood are reflective of the intercellular > levels. One thing I do know is that when the boys are ill their levels are > severely low and this is seen in all acutely ill people - even those without > Mito. > > I'm sorry your Sam continues to struggle. How are her bleeding issues these > days? I think of you both and hope the IVIg goes well and more > importantly - that it helps. > > Anne > Update on > > > > Hello all, sorry I havent written in awhile, but I have been reading. Sam > > has been sick again and just cant kick anything anymore. She will be going > > to UofC tomarrow to start monthly IvIg. can anyone fill me in more on > that. > > her genetic doc just called and said sams coq10 level is .9(range > .6-3.0)She > > already takes 50 mgs 3xday so he is uping her. Does anyone know about > c0q10 > > deficiency? Is it common in mito? Does it go hand in hand with a > particular > > mito? You know all the usuall questions, I want to know everything, but as > > we all know that rarely happens. Sorry to be negative, just been havin a > > hard time lately. > > Thanks, > > > > > > > > > > > > > > _________________________________________________________________ > > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > > http://join.msn.com/?page=features/virus > > > > > > Please contact mito-owner with any problems or questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 > Both of my boys receive high dose IVIg every 3-4 weeks. They've done this > for the last 3 years. They have a lot of trouble with the infusions and > therefore need to get them over 5 days as inpatients but I do feel we have > worked out very good protocols for them that minimize the reactions they > used to have. Please let me know if you would like more information and I'd > be happy to share. (however, my 2 are being admitted Sun so I will be gone > with them until the following weekend). > > Re: CoQ levels - both of my boys have had tremendous;y hard times getting > into a normal level range - actually Sam is still not there despite doses of > 10 mg/kg/day. We have found a few things that help as far as spacing out > doses but it is an ongoing struggle to get those levels up. Some doctors do > not feel that the levels in the blood are reflective of the intercellular > levels. One thing I do know is that when the boys are ill their levels are > severely low and this is seen in all acutely ill people - even those without > Mito. > > I'm sorry your Sam continues to struggle. How are her bleeding issues these > days? I think of you both and hope the IVIg goes well and more > importantly - that it helps. > > Anne > Update on > > > > Hello all, sorry I havent written in awhile, but I have been reading. Sam > > has been sick again and just cant kick anything anymore. She will be going > > to UofC tomarrow to start monthly IvIg. can anyone fill me in more on > that. > > her genetic doc just called and said sams coq10 level is .9(range > .6-3.0)She > > already takes 50 mgs 3xday so he is uping her. Does anyone know about > c0q10 > > deficiency? Is it common in mito? Does it go hand in hand with a > particular > > mito? You know all the usuall questions, I want to know everything, but as > > we all know that rarely happens. Sorry to be negative, just been havin a > > hard time lately. > > Thanks, > > > > > > > > > > > > > > _________________________________________________________________ > > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > > http://join.msn.com/?page=features/virus > > > > > > Please contact mito-owner with any problems or questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2003 Report Share Posted March 2, 2003 > Both of my boys receive high dose IVIg every 3-4 weeks. They've done this > for the last 3 years. They have a lot of trouble with the infusions and > therefore need to get them over 5 days as inpatients but I do feel we have > worked out very good protocols for them that minimize the reactions they > used to have. Please let me know if you would like more information and I'd > be happy to share. (however, my 2 are being admitted Sun so I will be gone > with them until the following weekend). > > Re: CoQ levels - both of my boys have had tremendous;y hard times getting > into a normal level range - actually Sam is still not there despite doses of > 10 mg/kg/day. We have found a few things that help as far as spacing out > doses but it is an ongoing struggle to get those levels up. Some doctors do > not feel that the levels in the blood are reflective of the intercellular > levels. One thing I do know is that when the boys are ill their levels are > severely low and this is seen in all acutely ill people - even those without > Mito. > > I'm sorry your Sam continues to struggle. How are her bleeding issues these > days? I think of you both and hope the IVIg goes well and more > importantly - that it helps. > > Anne > Update on > > > > Hello all, sorry I havent written in awhile, but I have been reading. Sam > > has been sick again and just cant kick anything anymore. She will be going > > to UofC tomarrow to start monthly IvIg. can anyone fill me in more on > that. > > her genetic doc just called and said sams coq10 level is .9(range > .6-3.0)She > > already takes 50 mgs 3xday so he is uping her. Does anyone know about > c0q10 > > deficiency? Is it common in mito? Does it go hand in hand with a > particular > > mito? You know all the usuall questions, I want to know everything, but as > > we all know that rarely happens. Sorry to be negative, just been havin a > > hard time lately. > > Thanks, > > > > > > > > > > > > > > _________________________________________________________________ > > MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. > > http://join.msn.com/?page=features/virus > > > > > > Please contact mito-owner with any problems or questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 > > I know Elaine is not fond of all the test being done .... He has made huge leaps and > bounds in knowledge since starting scd and enzymes in June 04. Lynn, That's great news. Elaine's main objection to the tests is " in vitro " they sometimes do not equate " in reality. " Carol F. SCD 4 yrs, Celiac Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 > > I know Elaine is not fond of all the test being done but I had to > share this info. My two year old tested IgA def in February 03. He > was on GF/with soy and then changed over to GF/CF in March 04. The > doctor tested his IgA again this October 04. His IgA is at a normal > level, now. Lynn, Just curious...who is doing this testing for you...an allergist? Is he/she a DAN dr? Thanks, (8 yo - UC, SCD - 6 weeks) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2004 Report Share Posted December 9, 2004 The first test was preformed was by his first pediatrician. The doctor ran a test in 2003 because had diarrhea and vomiting for three months straight. To say the least, my son was very ill. The doctor ran a bunch of blood test to check for celiac disease. I had no idea about the IgA test being low until I requested a copy of his records. I had my new pediatrician run a check on his vitamin A and he ran another check on celiac and IgA deficiency last month. Anyway, it came back that his IgA is not low. I am not sure about the reliability of the IgA test method but I am going to ask my doctor. I am not using a DAN doctor but found a environmental MD that treats autism like DAN and my insurance covers a majority of the bill. Lynn > > > > I know Elaine is not fond of all the test being done but I had to > > share this info. My two year old tested IgA def in February 03. > He > > was on GF/with soy and then changed over to GF/CF in March 04. The > > doctor tested his IgA again this October 04. His IgA is at a > normal > > level, now. > > Lynn, > > Just curious...who is doing this testing for you...an allergist? Is > he/she a DAN dr? > > Thanks, > > > (8 yo - UC, SCD - 6 weeks) Quote Link to comment Share on other sites More sharing options...
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