Guest guest Posted May 14, 1998 Report Share Posted May 14, 1998 Sharon, about Clayton's low cholesterol levels, that is also in my family and they always say oh, it's OK. But I have read several things saying it is not OK. Please share whatever you find out with us. I hope Clayton is doing well and you are holding up. S. Re: Clayton Update - LONG > > >SDidinsky@... wrote: > >> We have now been at Kennedy Kreiger since last monday (11 days) >> and a lot has happened during these past 11 days - including receiving a >> diagnosis. > >Sharon, I am so happy for you that you are finally getting the answers that you were looking for with >Clayton. I know that all of this is a lot to digest, but at least the searching and investigating is over >and now you can move on to a treatment plan and management. > >> AND THE RESULTS ARE IN - CLAYTON HAS A MITOCHONDRIAL >> DISORDER. > >Welcome to the mito world, your in good company. And you have a great doc on your side. > >> However, he did not think it was maternally inherited, BUT wants to >> run a 16 hour fasting urine organic acids, lactic acid and amino acids on >> Cole and Jake. > >Why did he not think it was maternally inherited? > >> On an interesting note that also ran a cholesterol test on Clayton as my >> family has a genetic predisposition for high cholesterol. WELL as with >> Claytom it was not high BUT VERY LOW (ldl) THis also can cause autistic like >> behaviors so in addition to all the mito meds he will also need to get >> cholesterol (we will not start this for a couple of weeks to a month). > >This is very interesting. I have never heard that before and am anxious to learn more about that. Makes >you wonder if everyone shouldn't be monitoring ldl more closely when these autistic issues etc, are >present. Would MCT oil help in this situation? Did Dr. Kelley have an explanation for why the >cholesteral is low? And can you manipulate his diet to compensate? Sorry for so many questions. > >> They want to keep us here >> at least until June 21st, assumning that we can get the insurance company to >> keep him here as they classify his eating issues as VERY SEVERE. > >We'll be thinking of you and your family and hope that the long hospital stay is successful, and you are >all reunited soon. You may be about to break Anne's record for long hospital stays. Take care and good >luck! > >Thanks for keeping us updated, >Jeannine > > >------------------------------------------------------------------------ >Get " in synch! " >http://www.onelist.com >With the ONElist Shared Calendar Feature. See homepage. >------------------------------------------------------------------------ >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 May 14, 1998 Report Share Posted May 14, 1998 Sharon, about Clayton's low cholesterol levels, that is also in my family and they always say oh, it's OK. But I have read several things saying it is not OK. Please share whatever you find out with us. I hope Clayton is doing well and you are holding up. S. Re: Clayton Update - LONG > > >SDidinsky@... wrote: > >> We have now been at Kennedy Kreiger since last monday (11 days) >> and a lot has happened during these past 11 days - including receiving a >> diagnosis. > >Sharon, I am so happy for you that you are finally getting the answers that you were looking for with >Clayton. I know that all of this is a lot to digest, but at least the searching and investigating is over >and now you can move on to a treatment plan and management. > >> AND THE RESULTS ARE IN - CLAYTON HAS A MITOCHONDRIAL >> DISORDER. > >Welcome to the mito world, your in good company. And you have a great doc on your side. > >> However, he did not think it was maternally inherited, BUT wants to >> run a 16 hour fasting urine organic acids, lactic acid and amino acids on >> Cole and Jake. > >Why did he not think it was maternally inherited? > >> On an interesting note that also ran a cholesterol test on Clayton as my >> family has a genetic predisposition for high cholesterol. WELL as with >> Claytom it was not high BUT VERY LOW (ldl) THis also can cause autistic like >> behaviors so in addition to all the mito meds he will also need to get >> cholesterol (we will not start this for a couple of weeks to a month). > >This is very interesting. I have never heard that before and am anxious to learn more about that. Makes >you wonder if everyone shouldn't be monitoring ldl more closely when these autistic issues etc, are >present. Would MCT oil help in this situation? Did Dr. Kelley have an explanation for why the >cholesteral is low? And can you manipulate his diet to compensate? Sorry for so many questions. > >> They want to keep us here >> at least until June 21st, assumning that we can get the insurance company to >> keep him here as they classify his eating issues as VERY SEVERE. > >We'll be thinking of you and your family and hope that the long hospital stay is successful, and you are >all reunited soon. You may be about to break Anne's record for long hospital stays. Take care and good >luck! > >Thanks for keeping us updated, >Jeannine > > >------------------------------------------------------------------------ >Get " in synch! " >http://www.onelist.com >With the ONElist Shared Calendar Feature. See homepage. >------------------------------------------------------------------------ >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 May 7, 1999 Report Share Posted May 7, 1999 SDidinsky@... wrote: > We have now been at Kennedy Kreiger since last monday (11 days) > and a lot has happened during these past 11 days - including receiving a > diagnosis. Sharon, I am so happy for you that you are finally getting the answers that you were looking for with Clayton. I know that all of this is a lot to digest, but at least the searching and investigating is over and now you can move on to a treatment plan and management. > AND THE RESULTS ARE IN - CLAYTON HAS A MITOCHONDRIAL > DISORDER. Welcome to the mito world, your in good company. And you have a great doc on your side. > However, he did not think it was maternally inherited, BUT wants to > run a 16 hour fasting urine organic acids, lactic acid and amino acids on > Cole and Jake. Why did he not think it was maternally inherited? > On an interesting note that also ran a cholesterol test on Clayton as my > family has a genetic predisposition for high cholesterol. WELL as with > Claytom it was not high BUT VERY LOW (ldl) THis also can cause autistic like > behaviors so in addition to all the mito meds he will also need to get > cholesterol (we will not start this for a couple of weeks to a month). This is very interesting. I have never heard that before and am anxious to learn more about that. Makes you wonder if everyone shouldn't be monitoring ldl more closely when these autistic issues etc, are present. Would MCT oil help in this situation? Did Dr. Kelley have an explanation for why the cholesteral is low? And can you manipulate his diet to compensate? Sorry for so many questions. > They want to keep us here > at least until June 21st, assumning that we can get the insurance company to > keep him here as they classify his eating issues as VERY SEVERE. We'll be thinking of you and your family and hope that the long hospital stay is successful, and you are all reunited soon. You may be about to break Anne's record for long hospital stays. Take care and good luck! Thanks for keeping us updated, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 1999 Report Share Posted May 7, 1999 SDidinsky@... wrote: > We have now been at Kennedy Kreiger since last monday (11 days) > and a lot has happened during these past 11 days - including receiving a > diagnosis. Sharon, I am so happy for you that you are finally getting the answers that you were looking for with Clayton. I know that all of this is a lot to digest, but at least the searching and investigating is over and now you can move on to a treatment plan and management. > AND THE RESULTS ARE IN - CLAYTON HAS A MITOCHONDRIAL > DISORDER. Welcome to the mito world, your in good company. And you have a great doc on your side. > However, he did not think it was maternally inherited, BUT wants to > run a 16 hour fasting urine organic acids, lactic acid and amino acids on > Cole and Jake. Why did he not think it was maternally inherited? > On an interesting note that also ran a cholesterol test on Clayton as my > family has a genetic predisposition for high cholesterol. WELL as with > Claytom it was not high BUT VERY LOW (ldl) THis also can cause autistic like > behaviors so in addition to all the mito meds he will also need to get > cholesterol (we will not start this for a couple of weeks to a month). This is very interesting. I have never heard that before and am anxious to learn more about that. Makes you wonder if everyone shouldn't be monitoring ldl more closely when these autistic issues etc, are present. Would MCT oil help in this situation? Did Dr. Kelley have an explanation for why the cholesteral is low? And can you manipulate his diet to compensate? Sorry for so many questions. > They want to keep us here > at least until June 21st, assumning that we can get the insurance company to > keep him here as they classify his eating issues as VERY SEVERE. We'll be thinking of you and your family and hope that the long hospital stay is successful, and you are all reunited soon. You may be about to break Anne's record for long hospital stays. Take care and good luck! Thanks for keeping us updated, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Sharon- Learning what you thought you already knew is hard for all of us. We are here for you and Clayton. I am really interested in the connection to autism as I work with autistic kids and have a friend with an autistic son. I'll be interested in how the suppliments work. I'll keep you both in my thoughts and prayers. Laurie > Sorry for the cross posting BUT I feel that I can only write this once at > this time. We have now been at Kennedy Kreiger since last monday (11 days) > and a lot has happened during these past 11 days - including receiving a > diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Sharon- Learning what you thought you already knew is hard for all of us. We are here for you and Clayton. I am really interested in the connection to autism as I work with autistic kids and have a friend with an autistic son. I'll be interested in how the suppliments work. I'll keep you both in my thoughts and prayers. Laurie > Sorry for the cross posting BUT I feel that I can only write this once at > this time. We have now been at Kennedy Kreiger since last monday (11 days) > and a lot has happened during these past 11 days - including receiving a > diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Hi Sharon, Congratulations? on finding out what's wrong with Clayton. At least now you can get a plan together for him. It must such a relief for you all to finally know what is wrong. Good luck with all of that and getting him to eat, too. Sue ( & Jack)-worn out parents to the greatest kids on earth-- Chris-8: Leigh's Disease, MR (mild), hypotonia, non-walker/talker -7: Leigh's Disease, MR (mild), hypotonia, non-walker/talker, trach tube (tracheomalasia), g-tube/fundo http://jscb.home.mindspring.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Hi Sharon, Congratulations? on finding out what's wrong with Clayton. At least now you can get a plan together for him. It must such a relief for you all to finally know what is wrong. Good luck with all of that and getting him to eat, too. Sue ( & Jack)-worn out parents to the greatest kids on earth-- Chris-8: Leigh's Disease, MR (mild), hypotonia, non-walker/talker -7: Leigh's Disease, MR (mild), hypotonia, non-walker/talker, trach tube (tracheomalasia), g-tube/fundo http://jscb.home.mindspring.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 In a message dated 5/14/99 2:34:18 AM Eastern Daylight Time, joelinda@... writes: << Sharon, about Clayton's low cholesterol levels, that is also in my family and they always say oh, it's OK. But I have read several things saying it is not OK. Please share whatever you find out with us. >> CLayton's LDL - the apparently bad cholesterol is low - more than 40 points below normal and this is not good - especially since my family has a genetic predisposition to HIGH Cholesterol. Dr, Kelley said that ldl helps control the hormones and also is associated with austic like/pdd behaviors that he sees in a syndrome called -Lemi opitz - nwhich CLaYTON does not have but his cholesterol levels are as low as those kids and he finds that giving htem cholesterol helps to curb or even get rid of these behaviors. So once CLayton has adjusted to the mito cocktail they will start him on supplemetnal cholesterol. Love, Sharon mommy to Jake (6)(ADHD - awaiting glasses) and fraternal twins (3/30/97) - Cole -(nda and cute as a button) and Clayton (mitochondrial disorder, eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), g-tube, Nissen, latex allergy, DD, sensory integration disorder, tremors, etc.........) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 In a message dated 5/16/99 10:46:00 AM Eastern Daylight Time, SDidinsky@... writes: << and he finds that giving htem cholesterol helps to curb or even get rid of these behaviors. So once CLayton has adjusted to the mito cocktail they will start him on supplemetnal cholesterol. >> Excellent!!!! Isn't it great to have hopeful news and new treatment options! Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 In a message dated 5/16/99 10:46:00 AM Eastern Daylight Time, SDidinsky@... writes: << and he finds that giving htem cholesterol helps to curb or even get rid of these behaviors. So once CLayton has adjusted to the mito cocktail they will start him on supplemetnal cholesterol. >> Excellent!!!! Isn't it great to have hopeful news and new treatment options! Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 In a message dated 5/16/99 10:46:00 AM Eastern Daylight Time, SDidinsky@... writes: << and he finds that giving htem cholesterol helps to curb or even get rid of these behaviors. So once CLayton has adjusted to the mito cocktail they will start him on supplemetnal cholesterol. >> Excellent!!!! Isn't it great to have hopeful news and new treatment options! Kathy mom to and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Sharon, This makes me think of several things. Our whole families cholesterol levels have been low like I said, and also when we did the TX test we were told to take supplemental oleic acid in the form of like olive oil & ?-paper not in front of me. But then I noticed we don't seem to do well with taking the fats, like we can't process them thru. I know they say ADDers need the extra fatty acids but seem to have processing problems (I may not have this all correct). They also say this fat problem has to do with the PMS and female hormone levels. I didn't know you could take supplemental cholesteral. Could you tell me how to get that or tell me how to tell my Dr. about this? Love, S. Re: Clayton Update - LONG >From: SDidinsky@... > >In a message dated 5/14/99 2:34:18 AM Eastern Daylight Time, >joelinda@... writes: > ><< Sharon, about Clayton's low cholesterol levels, that is also in my family > and they always say oh, it's OK. But I have read several things saying it is > not OK. Please share whatever you find out with us. >> > >CLayton's LDL - the apparently bad cholesterol is low - more than 40 points >below normal and this is not good - especially since my family has a genetic >predisposition to HIGH Cholesterol. Dr, Kelley said that ldl helps control >the hormones and also is associated with austic like/pdd behaviors that he >sees in a syndrome called -Lemi opitz - nwhich CLaYTON does not have but >his cholesterol levels are as low as those kids and he finds that giving htem >cholesterol helps to curb or even get rid of these behaviors. So once CLayton >has adjusted to the mito cocktail they will start him on supplemetnal >cholesterol. > > >Love, >Sharon >mommy to Jake (6)(ADHD - awaiting glasses) and fraternal twins (3/30/97) - >Cole -(nda and cute as a button) and Clayton (mitochondrial disorder, >eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), >g-tube, Nissen, latex allergy, DD, sensory integration disorder, tremors, >etc.........) > >------------------------------------------------------------------------ >Having difficulty getting " in synch " with list members? >http://www.onelist.com >Try ONElist's Shared Calendar to organize events, meetings and more! >------------------------------------------------------------------------ >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 May 17, 1999 Report Share Posted May 17, 1999 Sharon, This makes me think of several things. Our whole families cholesterol levels have been low like I said, and also when we did the TX test we were told to take supplemental oleic acid in the form of like olive oil & ?-paper not in front of me. But then I noticed we don't seem to do well with taking the fats, like we can't process them thru. I know they say ADDers need the extra fatty acids but seem to have processing problems (I may not have this all correct). They also say this fat problem has to do with the PMS and female hormone levels. I didn't know you could take supplemental cholesteral. Could you tell me how to get that or tell me how to tell my Dr. about this? Love, S. Re: Clayton Update - LONG >From: SDidinsky@... > >In a message dated 5/14/99 2:34:18 AM Eastern Daylight Time, >joelinda@... writes: > ><< Sharon, about Clayton's low cholesterol levels, that is also in my family > and they always say oh, it's OK. But I have read several things saying it is > not OK. Please share whatever you find out with us. >> > >CLayton's LDL - the apparently bad cholesterol is low - more than 40 points >below normal and this is not good - especially since my family has a genetic >predisposition to HIGH Cholesterol. Dr, Kelley said that ldl helps control >the hormones and also is associated with austic like/pdd behaviors that he >sees in a syndrome called -Lemi opitz - nwhich CLaYTON does not have but >his cholesterol levels are as low as those kids and he finds that giving htem >cholesterol helps to curb or even get rid of these behaviors. So once CLayton >has adjusted to the mito cocktail they will start him on supplemetnal >cholesterol. > > >Love, >Sharon >mommy to Jake (6)(ADHD - awaiting glasses) and fraternal twins (3/30/97) - >Cole -(nda and cute as a button) and Clayton (mitochondrial disorder, >eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), >g-tube, Nissen, latex allergy, DD, sensory integration disorder, tremors, >etc.........) > >------------------------------------------------------------------------ >Having difficulty getting " in synch " with list members? >http://www.onelist.com >Try ONElist's Shared Calendar to organize events, meetings and more! >------------------------------------------------------------------------ >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 May 17, 1999 Report Share Posted May 17, 1999 Sharon, This makes me think of several things. Our whole families cholesterol levels have been low like I said, and also when we did the TX test we were told to take supplemental oleic acid in the form of like olive oil & ?-paper not in front of me. But then I noticed we don't seem to do well with taking the fats, like we can't process them thru. I know they say ADDers need the extra fatty acids but seem to have processing problems (I may not have this all correct). They also say this fat problem has to do with the PMS and female hormone levels. I didn't know you could take supplemental cholesteral. Could you tell me how to get that or tell me how to tell my Dr. about this? Love, S. Re: Clayton Update - LONG >From: SDidinsky@... > >In a message dated 5/14/99 2:34:18 AM Eastern Daylight Time, >joelinda@... writes: > ><< Sharon, about Clayton's low cholesterol levels, that is also in my family > and they always say oh, it's OK. But I have read several things saying it is > not OK. Please share whatever you find out with us. >> > >CLayton's LDL - the apparently bad cholesterol is low - more than 40 points >below normal and this is not good - especially since my family has a genetic >predisposition to HIGH Cholesterol. Dr, Kelley said that ldl helps control >the hormones and also is associated with austic like/pdd behaviors that he >sees in a syndrome called -Lemi opitz - nwhich CLaYTON does not have but >his cholesterol levels are as low as those kids and he finds that giving htem >cholesterol helps to curb or even get rid of these behaviors. So once CLayton >has adjusted to the mito cocktail they will start him on supplemetnal >cholesterol. > > >Love, >Sharon >mommy to Jake (6)(ADHD - awaiting glasses) and fraternal twins (3/30/97) - >Cole -(nda and cute as a button) and Clayton (mitochondrial disorder, >eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), >g-tube, Nissen, latex allergy, DD, sensory integration disorder, tremors, >etc.........) > >------------------------------------------------------------------------ >Having difficulty getting " in synch " with list members? >http://www.onelist.com >Try ONElist's Shared Calendar to organize events, meetings and more! >------------------------------------------------------------------------ >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...
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