Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Hi Terri! Just wanted to say hello and tell you about my conversation with Dr. Kelley on Friday (he actually called me at 9pm on a Friday night)! He told me that 's new organic acid profile, both mid-day and fasting, was absolutely normal. No ketosis, no nothing. This is good in some ways, but it leads us no closer to the answer. He said that it is possible that, if has a mito disorder, that it is just confined to the nervous system and that it won't show up in body fluids or muscle tissue. He also said that there is no lactic acidosis. We are still waiting on blood we had taken last week. So far we have back normal Vit. D, B12 and Zinc. Normal ammonia. Normal alphafetoprotein. The only thing that came back weird was his cholesterol: 220! Wow. The nurse said it is consistent with hyperlipoproteinemia Type IIa, which is a familial cholesterol metabolism problem. This doesn't surprise me because my side of the family has naturally high cholesterol. Dr. Kelley says this is unrelated to whatever else is going on. Anyway, remember when you said that the only people you heard of with Leigh's lived to mid-childhood? Well, not Dr. Kelley's patients. He has childhood onset Leigh's patients who are in their twenties and doing wonderfully! He said that the most important thing to do for kids with Leigh's is to get them on the vitamin coctail that he prescribes which contains 6 vitamins (not sure which). He said you need to take all six, not just one or two, or it won't have the desired effect. Any way, he said that his patients with Leigh's are actually the most responsive to therapy of all his patients. He also said that he sees lots of kids like who have a period of deterioration, then they plateau for a while, then they begin to make gains and get better. He said that lots of mito disorders have a small window of opportunity to do damage, then they are no longer problematic. He is SO smart and SO nice, I really suggest that you call him. isn't even his patient and he analyzed his urine for free and spoke to me on the phone several times at length. I know you have wonderful doctors for Carl, but I just thought you might want to hear directly from him how good his Leigh's kids are doing. Anyway, hope you guys are doing well. Let me know if you want his phone number. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 , Glad to hear about the test results! Carl's lab results have always been normal as well. It was definitely frustrating when we were still looking for a diagnosis so I know what you mean! As far as what Dr. Kelley is saying about Leigh's patients, I do admit that I have a couple of problems. It's not that I doubt Carl could live into his twenties because honestly, Carl is doing very well. In fact Carl is healthier now than he has ever been - with the exception of neurologically. The only area in which he continually and consistently deteriorates is his central nervous system. So, if we could find something to halt that particular deterioration (I'm still hoping for Uridine, but I'm starting to think that trial is never going to happen!) then Carl could conceivably live quite well for quite a while. However, the problem I have is that if Dr. Kelley is so sure that this " cocktail " is producing these kinds of results, why doesn't anybody else know about it? Why hasn't he published something? Why won't he say what's in it? I know why he wouldn't want to give medical advice to people who aren't his patients, but if this is so great why isn't he at least telling all the other doctors so that they know to get their kids with Leigh's on it immediately? What about all those parents of kids with Leigh's who are given the traditional prognosis and told there is nothing to do? Carl's metabolic doc is pretty good and although he's not a mito expert by any means, he does have access to a lot of mito experts, including Dr. Kelley. Why hasn't doctor Kelley at least shared this cocktail and his glorious results with the professinal internet groups (of which he and Carl's metabolic doc are both members)? It's not that I don't think Dr. Kelley is a wonderful doctor, because I have heard nothing but wonderful things about him. BUT, doesn't it seem a little selfish that he isn't making this better known so that more kids have a chance of benefiting? Terri P.S. How's the morning sickness? Craving anything weird yet? :-) > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Hi Terri! >Date: Sun, 14 Nov 1999 10:01:13 -0800 > > >Hi Terri! > >Just wanted to say hello and tell you about my conversation with Dr. Kelley >on Friday (he actually called >me at 9pm on a Friday night)! > >He told me that 's new organic acid profile, both mid-day and fasting, >was absolutely normal. No >ketosis, no nothing. This is good in some ways, but it leads us no closer >to the answer. He said that it >is possible that, if has a mito disorder, that it is just confined to >the nervous system and that it >won't show up in body fluids or muscle tissue. He also said that there is >no lactic acidosis. We are >still waiting on blood we had taken last week. So far we have back normal >Vit. D, B12 and Zinc. Normal >ammonia. Normal alphafetoprotein. The only thing that came back weird was >his cholesterol: 220! Wow. >The nurse said it is consistent with hyperlipoproteinemia Type IIa, which >is a familial cholesterol >metabolism problem. This doesn't surprise me because my side of the family >has naturally high >cholesterol. Dr. Kelley says this is unrelated to whatever else is going >on. > >Anyway, remember when you said that the only people you heard of with >Leigh's lived to mid-childhood? >Well, not Dr. Kelley's patients. He has childhood onset Leigh's patients >who are in their twenties and >doing wonderfully! He said that the most important thing to do for kids >with Leigh's is to get them on >the vitamin coctail that he prescribes which contains 6 vitamins (not sure >which). He said you need to >take all six, not just one or two, or it won't have the desired effect. >Any way, he said that his >patients with Leigh's are actually the most responsive to therapy of all >his patients. He also said that >he sees lots of kids like who have a period of deterioration, then >they plateau for a while, then >they begin to make gains and get better. He said that lots of mito >disorders have a small window of >opportunity to do damage, then they are no longer problematic. He is SO >smart and SO nice, I really >suggest that you call him. isn't even his patient and he analyzed his >urine for free and spoke to me >on the phone several times at length. I know you have wonderful doctors >for Carl, but I just thought you >might want to hear directly from him how good his Leigh's kids are doing. > >Anyway, hope you guys are doing well. Let me know if you want his phone >number. > >Love, > > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 In a message dated 11/14/99 7:01:44 PM Pacific Standard Time, momalboe@... writes: << However, the problem I have is that if Dr. Kelley is so sure that this " cocktail " is producing these kinds of results, why doesn't anybody else know about it? Why hasn't he published something? >> I like Kelley too but, sometimes he seems abit overly optimistic and offering excessive hope. His idea and mine about doing great aren't exactly the same. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 In a message dated 11/14/99 7:01:44 PM Pacific Standard Time, momalboe@... writes: << However, the problem I have is that if Dr. Kelley is so sure that this " cocktail " is producing these kinds of results, why doesn't anybody else know about it? Why hasn't he published something? >> I like Kelley too but, sometimes he seems abit overly optimistic and offering excessive hope. His idea and mine about doing great aren't exactly the same. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 In a message dated 11/14/99 7:33:31 PM Pacific Standard Time, jscb@... writes: << BTW, my Chris' cholesterol is in the upper 200's low 300's just like his dad. ) According to the neuro, it shouldn't be treated at this age and it most likely has nothing to do with the mito problems. >> Hi sue, This caught my eye. I just read tonight about using Niacin to help bring down cholesterol. Just thought I would share that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 In a message dated 11/14/99 7:33:31 PM Pacific Standard Time, jscb@... writes: << BTW, my Chris' cholesterol is in the upper 200's low 300's just like his dad. ) According to the neuro, it shouldn't be treated at this age and it most likely has nothing to do with the mito problems. >> Hi sue, This caught my eye. I just read tonight about using Niacin to help bring down cholesterol. Just thought I would share that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 He won't tell me. :-) Dillr@... wrote: > From: Dillr@... > > In a message dated 11/14/99 7:01:56 AM Pacific Standard Time, > sfitzger@... writes: > > << he vitamin coctail that he prescribes which contains 6 vitamins (not sure > which). He said you need to > take all six, not just one or two, or it won't have the desired effect. >> > > Hummmmmmmmmm I wonder what the cocktail consists of??? > > > > > 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 November 15, 1999 Report Share Posted November 15, 1999 Hi Terri and Everyone, I kind of agree with your observations. I know Dr. is good because my friend Heidi see's him. Hi Heidi! ) Her daughter is on a bunch of meds and there is a noticable difference with her. However, she doesn't have Leigh's. When we saw Dr. Haas this past July he put the kids on B-50 vitamins and CoQ10. Getting them to TAKE the stuff is another story! Anyway, he said he doesn't routinely put kids on Carnitine (like a lot of docs do when mito is involved) unless there is a carnitne deficiency. Now seeing that he runs the Leigh's Center there at UCSD, one would think he knows what he's doing with regards to meds and Leigh's. I think every situation is so different that you can't just say, " OK everyone who has a mito disorder take these 6 vits and you will be fine. " With Heidi's daughter one of the B vits was causing problems so she was taken off. Yet for someone else it might be quite beneficial. And I agree that if Dr. does indeed have proof that these vits are doing some good, then I would think it's his obligation to share them. BTW, my Chris' cholesterol is in the upper 200's low 300's just like his dad. ) According to the neuro, it shouldn't be treated at this age and it most likely has nothing to do with the mito problems. Well that's just my opinion so take it for what it's worth. ) Take care everyone... Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb Re: Hi Terri! > > > , > > Glad to hear about the test results! Carl's lab results have always been > normal as well. It was definitely frustrating when we were still looking > for a diagnosis so I know what you mean! > > As far as what Dr. Kelley is saying about Leigh's patients, I do admit that > I have a couple of problems. It's not that I doubt Carl could live into his > twenties because honestly, Carl is doing very well. In fact Carl is > healthier now than he has ever been - with the exception of neurologically. > The only area in which he continually and consistently deteriorates is his > central nervous system. So, if we could find something to halt that > particular deterioration (I'm still hoping for Uridine, but I'm starting to > think that trial is never going to happen!) then Carl could conceivably live > quite well for quite a while. > > However, the problem I have is that if Dr. Kelley is so sure that this > " cocktail " is producing these kinds of results, why doesn't anybody else > know about it? Why hasn't he published something? Why won't he say what's > in it? I know why he wouldn't want to give medical advice to people who > aren't his patients, but if this is so great why isn't he at least telling > all the other doctors so that they know to get their kids with Leigh's on it > immediately? What about all those parents of kids with Leigh's who are > given the traditional prognosis and told there is nothing to do? Carl's > metabolic doc is pretty good and although he's not a mito expert by any > means, he does have access to a lot of mito experts, including Dr. Kelley. > Why hasn't doctor Kelley at least shared this cocktail and his glorious > results with the professinal internet groups (of which he and Carl's > metabolic doc are both members)? > > It's not that I don't think Dr. Kelley is a wonderful doctor, because I have > heard nothing but wonderful things about him. BUT, doesn't it seem a little > selfish that he isn't making this better known so that more kids have a > chance of benefiting? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hi Terri and Everyone, I kind of agree with your observations. I know Dr. is good because my friend Heidi see's him. Hi Heidi! ) Her daughter is on a bunch of meds and there is a noticable difference with her. However, she doesn't have Leigh's. When we saw Dr. Haas this past July he put the kids on B-50 vitamins and CoQ10. Getting them to TAKE the stuff is another story! Anyway, he said he doesn't routinely put kids on Carnitine (like a lot of docs do when mito is involved) unless there is a carnitne deficiency. Now seeing that he runs the Leigh's Center there at UCSD, one would think he knows what he's doing with regards to meds and Leigh's. I think every situation is so different that you can't just say, " OK everyone who has a mito disorder take these 6 vits and you will be fine. " With Heidi's daughter one of the B vits was causing problems so she was taken off. Yet for someone else it might be quite beneficial. And I agree that if Dr. does indeed have proof that these vits are doing some good, then I would think it's his obligation to share them. BTW, my Chris' cholesterol is in the upper 200's low 300's just like his dad. ) According to the neuro, it shouldn't be treated at this age and it most likely has nothing to do with the mito problems. Well that's just my opinion so take it for what it's worth. ) Take care everyone... Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb Re: Hi Terri! > > > , > > Glad to hear about the test results! Carl's lab results have always been > normal as well. It was definitely frustrating when we were still looking > for a diagnosis so I know what you mean! > > As far as what Dr. Kelley is saying about Leigh's patients, I do admit that > I have a couple of problems. It's not that I doubt Carl could live into his > twenties because honestly, Carl is doing very well. In fact Carl is > healthier now than he has ever been - with the exception of neurologically. > The only area in which he continually and consistently deteriorates is his > central nervous system. So, if we could find something to halt that > particular deterioration (I'm still hoping for Uridine, but I'm starting to > think that trial is never going to happen!) then Carl could conceivably live > quite well for quite a while. > > However, the problem I have is that if Dr. Kelley is so sure that this > " cocktail " is producing these kinds of results, why doesn't anybody else > know about it? Why hasn't he published something? Why won't he say what's > in it? I know why he wouldn't want to give medical advice to people who > aren't his patients, but if this is so great why isn't he at least telling > all the other doctors so that they know to get their kids with Leigh's on it > immediately? What about all those parents of kids with Leigh's who are > given the traditional prognosis and told there is nothing to do? Carl's > metabolic doc is pretty good and although he's not a mito expert by any > means, he does have access to a lot of mito experts, including Dr. Kelley. > Why hasn't doctor Kelley at least shared this cocktail and his glorious > results with the professinal internet groups (of which he and Carl's > metabolic doc are both members)? > > It's not that I don't think Dr. Kelley is a wonderful doctor, because I have > heard nothing but wonderful things about him. BUT, doesn't it seem a little > selfish that he isn't making this better known so that more kids have a > chance of benefiting? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hi , Thanks for the tip! I might try that. ) Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb > Hi sue, > > This caught my eye. I just read tonight about using Niacin to help > bring down cholesterol. > Just thought I would share that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hi , Thanks for the tip! I might try that. ) Sue ( & Jack)-worn out parents to the greatest kids on earth in Las Vegas, NV Chris-9: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker -8: Leigh's Disease (?), MR (mild), hypotonia, non-walker/talker, trach tube (larynotracheomalasia), g-tube/fundo Visit us! http://u2.lvcm.com/jscb > Hi sue, > > This caught my eye. I just read tonight about using Niacin to help > bring down cholesterol. > Just thought I would share that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hmmmm.... well I think Dr. Kelley has overestimated what other doctors are doing because it definitely isn't standard practice. Maybe because they haven't heard about Dr. Kelley's wonderful results they don't take it seriously, but there are many metabolic doctors out there - including a couple of mito experts, who do not regularly prescribe supplements other than coenzyme Q10. I would really like to think that if other doctors were aware of the great results that Dr. Kelley is getting, they would regularly prescribe the specific supplements. oooooh - morning sickness and hamburgers, not a good combinations! Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hi Terri! >Date: Mon, 15 Nov 1999 15:40:54 -0800 > >Dr. Kelley said that the vitamin cocktail is standard practice in mito >disorders. He told me that all >doctors are prescribing...he did not make it up, it is common knowledge. > >Morning sickness is pretty awful. Craving Hamburgers!!! MMMM.... > > > >Terri Mason wrote: > > > > > > > , > > > > Glad to hear about the test results! Carl's lab results have always >been > > normal as well. It was definitely frustrating when we were still >looking > > for a diagnosis so I know what you mean! > > > > As far as what Dr. Kelley is saying about Leigh's patients, I do admit >that > > I have a couple of problems. It's not that I doubt Carl could live into >his > > twenties because honestly, Carl is doing very well. In fact Carl is > > healthier now than he has ever been - with the exception of >neurologically. > > The only area in which he continually and consistently deteriorates is >his > > central nervous system. So, if we could find something to halt that > > particular deterioration (I'm still hoping for Uridine, but I'm starting >to > > think that trial is never going to happen!) then Carl could conceivably >live > > quite well for quite a while. > > > > However, the problem I have is that if Dr. Kelley is so sure that this > > " cocktail " is producing these kinds of results, why doesn't anybody else > > know about it? Why hasn't he published something? Why won't he say >what's > > in it? I know why he wouldn't want to give medical advice to people who > > aren't his patients, but if this is so great why isn't he at least >telling > > all the other doctors so that they know to get their kids with Leigh's >on it > > immediately? What about all those parents of kids with Leigh's who are > > given the traditional prognosis and told there is nothing to do? Carl's > > metabolic doc is pretty good and although he's not a mito expert by any > > means, he does have access to a lot of mito experts, including Dr. >Kelley. > > Why hasn't doctor Kelley at least shared this cocktail and his glorious > > results with the professinal internet groups (of which he and Carl's > > metabolic doc are both members)? > > > > It's not that I don't think Dr. Kelley is a wonderful doctor, because I >have > > heard nothing but wonderful things about him. BUT, doesn't it seem a >little > > selfish that he isn't making this better known so that more kids have a > > chance of benefiting? > > > > Terri > > > > P.S. How's the morning sickness? Craving anything weird yet? :-) > > > > > > > >Reply-To: Mitoonelist > > >To: Mitoonelist > > >Subject: Hi Terri! > > >Date: Sun, 14 Nov 1999 10:01:13 -0800 > > > > > > > > >Hi Terri! > > > > > >Just wanted to say hello and tell you about my conversation with Dr. >Kelley > > >on Friday (he actually called > > >me at 9pm on a Friday night)! > > > > > >He told me that 's new organic acid profile, both mid-day and >fasting, > > >was absolutely normal. No > > >ketosis, no nothing. This is good in some ways, but it leads us no >closer > > >to the answer. He said that it > > >is possible that, if has a mito disorder, that it is just confined >to > > >the nervous system and that it > > >won't show up in body fluids or muscle tissue. He also said that there >is > > >no lactic acidosis. We are > > >still waiting on blood we had taken last week. So far we have back >normal > > >Vit. D, B12 and Zinc. Normal > > >ammonia. Normal alphafetoprotein. The only thing that came back weird >was > > >his cholesterol: 220! Wow. > > >The nurse said it is consistent with hyperlipoproteinemia Type IIa, >which > > >is a familial cholesterol > > >metabolism problem. This doesn't surprise me because my side of the >family > > >has naturally high > > >cholesterol. Dr. Kelley says this is unrelated to whatever else is >going > > >on. > > > > > >Anyway, remember when you said that the only people you heard of with > > >Leigh's lived to mid-childhood? > > >Well, not Dr. Kelley's patients. He has childhood onset Leigh's >patients > > >who are in their twenties and > > >doing wonderfully! He said that the most important thing to do for >kids > > >with Leigh's is to get them on > > >the vitamin coctail that he prescribes which contains 6 vitamins (not >sure > > >which). He said you need to > > >take all six, not just one or two, or it won't have the desired effect. > > >Any way, he said that his > > >patients with Leigh's are actually the most responsive to therapy of >all > > >his patients. He also said that > > >he sees lots of kids like who have a period of deterioration, then > > >they plateau for a while, then > > >they begin to make gains and get better. He said that lots of mito > > >disorders have a small window of > > >opportunity to do damage, then they are no longer problematic. He is >SO > > >smart and SO nice, I really > > >suggest that you call him. isn't even his patient and he analyzed >his > > >urine for free and spoke to me > > >on the phone several times at length. I know you have wonderful >doctors > > >for Carl, but I just thought you > > >might want to hear directly from him how good his Leigh's kids are >doing. > > > > > >Anyway, hope you guys are doing well. Let me know if you want his >phone > > >number. > > > > > >Love, > > > > > > > > > > > > >------------------------------------------------------------------------ > > >Brought to you by www.imdn.org - an on-line support group for those > > >affected by mitochondrial disease. > > ><< text3.html >> > > > > > Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hmmmm.... well I think Dr. Kelley has overestimated what other doctors are doing because it definitely isn't standard practice. Maybe because they haven't heard about Dr. Kelley's wonderful results they don't take it seriously, but there are many metabolic doctors out there - including a couple of mito experts, who do not regularly prescribe supplements other than coenzyme Q10. I would really like to think that if other doctors were aware of the great results that Dr. Kelley is getting, they would regularly prescribe the specific supplements. oooooh - morning sickness and hamburgers, not a good combinations! Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hi Terri! >Date: Mon, 15 Nov 1999 15:40:54 -0800 > >Dr. Kelley said that the vitamin cocktail is standard practice in mito >disorders. He told me that all >doctors are prescribing...he did not make it up, it is common knowledge. > >Morning sickness is pretty awful. Craving Hamburgers!!! MMMM.... > > > >Terri Mason wrote: > > > > > > > , > > > > Glad to hear about the test results! Carl's lab results have always >been > > normal as well. It was definitely frustrating when we were still >looking > > for a diagnosis so I know what you mean! > > > > As far as what Dr. Kelley is saying about Leigh's patients, I do admit >that > > I have a couple of problems. It's not that I doubt Carl could live into >his > > twenties because honestly, Carl is doing very well. In fact Carl is > > healthier now than he has ever been - with the exception of >neurologically. > > The only area in which he continually and consistently deteriorates is >his > > central nervous system. So, if we could find something to halt that > > particular deterioration (I'm still hoping for Uridine, but I'm starting >to > > think that trial is never going to happen!) then Carl could conceivably >live > > quite well for quite a while. > > > > However, the problem I have is that if Dr. Kelley is so sure that this > > " cocktail " is producing these kinds of results, why doesn't anybody else > > know about it? Why hasn't he published something? Why won't he say >what's > > in it? I know why he wouldn't want to give medical advice to people who > > aren't his patients, but if this is so great why isn't he at least >telling > > all the other doctors so that they know to get their kids with Leigh's >on it > > immediately? What about all those parents of kids with Leigh's who are > > given the traditional prognosis and told there is nothing to do? Carl's > > metabolic doc is pretty good and although he's not a mito expert by any > > means, he does have access to a lot of mito experts, including Dr. >Kelley. > > Why hasn't doctor Kelley at least shared this cocktail and his glorious > > results with the professinal internet groups (of which he and Carl's > > metabolic doc are both members)? > > > > It's not that I don't think Dr. Kelley is a wonderful doctor, because I >have > > heard nothing but wonderful things about him. BUT, doesn't it seem a >little > > selfish that he isn't making this better known so that more kids have a > > chance of benefiting? > > > > Terri > > > > P.S. How's the morning sickness? Craving anything weird yet? :-) > > > > > > > >Reply-To: Mitoonelist > > >To: Mitoonelist > > >Subject: Hi Terri! > > >Date: Sun, 14 Nov 1999 10:01:13 -0800 > > > > > > > > >Hi Terri! > > > > > >Just wanted to say hello and tell you about my conversation with Dr. >Kelley > > >on Friday (he actually called > > >me at 9pm on a Friday night)! > > > > > >He told me that 's new organic acid profile, both mid-day and >fasting, > > >was absolutely normal. No > > >ketosis, no nothing. This is good in some ways, but it leads us no >closer > > >to the answer. He said that it > > >is possible that, if has a mito disorder, that it is just confined >to > > >the nervous system and that it > > >won't show up in body fluids or muscle tissue. He also said that there >is > > >no lactic acidosis. We are > > >still waiting on blood we had taken last week. So far we have back >normal > > >Vit. D, B12 and Zinc. Normal > > >ammonia. Normal alphafetoprotein. The only thing that came back weird >was > > >his cholesterol: 220! Wow. > > >The nurse said it is consistent with hyperlipoproteinemia Type IIa, >which > > >is a familial cholesterol > > >metabolism problem. This doesn't surprise me because my side of the >family > > >has naturally high > > >cholesterol. Dr. Kelley says this is unrelated to whatever else is >going > > >on. > > > > > >Anyway, remember when you said that the only people you heard of with > > >Leigh's lived to mid-childhood? > > >Well, not Dr. Kelley's patients. He has childhood onset Leigh's >patients > > >who are in their twenties and > > >doing wonderfully! He said that the most important thing to do for >kids > > >with Leigh's is to get them on > > >the vitamin coctail that he prescribes which contains 6 vitamins (not >sure > > >which). He said you need to > > >take all six, not just one or two, or it won't have the desired effect. > > >Any way, he said that his > > >patients with Leigh's are actually the most responsive to therapy of >all > > >his patients. He also said that > > >he sees lots of kids like who have a period of deterioration, then > > >they plateau for a while, then > > >they begin to make gains and get better. He said that lots of mito > > >disorders have a small window of > > >opportunity to do damage, then they are no longer problematic. He is >SO > > >smart and SO nice, I really > > >suggest that you call him. isn't even his patient and he analyzed >his > > >urine for free and spoke to me > > >on the phone several times at length. I know you have wonderful >doctors > > >for Carl, but I just thought you > > >might want to hear directly from him how good his Leigh's kids are >doing. > > > > > >Anyway, hope you guys are doing well. Let me know if you want his >phone > > >number. > > > > > >Love, > > > > > > > > > > > > >------------------------------------------------------------------------ > > >Brought to you by www.imdn.org - an on-line support group for those > > >affected by mitochondrial disease. > > ><< text3.html >> > > > > > Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Hmmmm.... well I think Dr. Kelley has overestimated what other doctors are doing because it definitely isn't standard practice. Maybe because they haven't heard about Dr. Kelley's wonderful results they don't take it seriously, but there are many metabolic doctors out there - including a couple of mito experts, who do not regularly prescribe supplements other than coenzyme Q10. I would really like to think that if other doctors were aware of the great results that Dr. Kelley is getting, they would regularly prescribe the specific supplements. oooooh - morning sickness and hamburgers, not a good combinations! Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hi Terri! >Date: Mon, 15 Nov 1999 15:40:54 -0800 > >Dr. Kelley said that the vitamin cocktail is standard practice in mito >disorders. He told me that all >doctors are prescribing...he did not make it up, it is common knowledge. > >Morning sickness is pretty awful. Craving Hamburgers!!! MMMM.... > > > >Terri Mason wrote: > > > > > > > , > > > > Glad to hear about the test results! Carl's lab results have always >been > > normal as well. It was definitely frustrating when we were still >looking > > for a diagnosis so I know what you mean! > > > > As far as what Dr. Kelley is saying about Leigh's patients, I do admit >that > > I have a couple of problems. It's not that I doubt Carl could live into >his > > twenties because honestly, Carl is doing very well. In fact Carl is > > healthier now than he has ever been - with the exception of >neurologically. > > The only area in which he continually and consistently deteriorates is >his > > central nervous system. So, if we could find something to halt that > > particular deterioration (I'm still hoping for Uridine, but I'm starting >to > > think that trial is never going to happen!) then Carl could conceivably >live > > quite well for quite a while. > > > > However, the problem I have is that if Dr. Kelley is so sure that this > > " cocktail " is producing these kinds of results, why doesn't anybody else > > know about it? Why hasn't he published something? Why won't he say >what's > > in it? I know why he wouldn't want to give medical advice to people who > > aren't his patients, but if this is so great why isn't he at least >telling > > all the other doctors so that they know to get their kids with Leigh's >on it > > immediately? What about all those parents of kids with Leigh's who are > > given the traditional prognosis and told there is nothing to do? Carl's > > metabolic doc is pretty good and although he's not a mito expert by any > > means, he does have access to a lot of mito experts, including Dr. >Kelley. > > Why hasn't doctor Kelley at least shared this cocktail and his glorious > > results with the professinal internet groups (of which he and Carl's > > metabolic doc are both members)? > > > > It's not that I don't think Dr. Kelley is a wonderful doctor, because I >have > > heard nothing but wonderful things about him. BUT, doesn't it seem a >little > > selfish that he isn't making this better known so that more kids have a > > chance of benefiting? > > > > Terri > > > > P.S. How's the morning sickness? Craving anything weird yet? :-) > > > > > > > >Reply-To: Mitoonelist > > >To: Mitoonelist > > >Subject: Hi Terri! > > >Date: Sun, 14 Nov 1999 10:01:13 -0800 > > > > > > > > >Hi Terri! > > > > > >Just wanted to say hello and tell you about my conversation with Dr. >Kelley > > >on Friday (he actually called > > >me at 9pm on a Friday night)! > > > > > >He told me that 's new organic acid profile, both mid-day and >fasting, > > >was absolutely normal. No > > >ketosis, no nothing. This is good in some ways, but it leads us no >closer > > >to the answer. He said that it > > >is possible that, if has a mito disorder, that it is just confined >to > > >the nervous system and that it > > >won't show up in body fluids or muscle tissue. He also said that there >is > > >no lactic acidosis. We are > > >still waiting on blood we had taken last week. So far we have back >normal > > >Vit. D, B12 and Zinc. Normal > > >ammonia. Normal alphafetoprotein. The only thing that came back weird >was > > >his cholesterol: 220! Wow. > > >The nurse said it is consistent with hyperlipoproteinemia Type IIa, >which > > >is a familial cholesterol > > >metabolism problem. This doesn't surprise me because my side of the >family > > >has naturally high > > >cholesterol. Dr. Kelley says this is unrelated to whatever else is >going > > >on. > > > > > >Anyway, remember when you said that the only people you heard of with > > >Leigh's lived to mid-childhood? > > >Well, not Dr. Kelley's patients. He has childhood onset Leigh's >patients > > >who are in their twenties and > > >doing wonderfully! He said that the most important thing to do for >kids > > >with Leigh's is to get them on > > >the vitamin coctail that he prescribes which contains 6 vitamins (not >sure > > >which). He said you need to > > >take all six, not just one or two, or it won't have the desired effect. > > >Any way, he said that his > > >patients with Leigh's are actually the most responsive to therapy of >all > > >his patients. He also said that > > >he sees lots of kids like who have a period of deterioration, then > > >they plateau for a while, then > > >they begin to make gains and get better. He said that lots of mito > > >disorders have a small window of > > >opportunity to do damage, then they are no longer problematic. He is >SO > > >smart and SO nice, I really > > >suggest that you call him. isn't even his patient and he analyzed >his > > >urine for free and spoke to me > > >on the phone several times at length. I know you have wonderful >doctors > > >for Carl, but I just thought you > > >might want to hear directly from him how good his Leigh's kids are >doing. > > > > > >Anyway, hope you guys are doing well. Let me know if you want his >phone > > >number. > > > > > >Love, > > > > > > > > > > > > >------------------------------------------------------------------------ > > >Brought to you by www.imdn.org - an on-line support group for those > > >affected by mitochondrial disease. > > ><< text3.html >> > > > > > Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 , I don't think anybody was upset by the information you presented, just intrigued. I don't think anybody on this list thinks that Dr. Kelley is a flake either - quite the contrary in fact as he is a very respected mito specialist. It's just still such a growing field that it would be nice if all the doctors could get together and share their information so that more could benefit. Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hi Terri! >Date: Mon, 15 Nov 1999 16:24:43 -0800 > >I know, but I don't assume anything anymore. I have no reason not to >believe Dr. Kelley. Okay, maybe he >is overly optimistic, but he has no reason to lie to me. My son has been >to 38 doctors in the past 13 >months. Nobody has given us any information or any hope. Why should I not >listen to someone who, for >once, has an idea about what can be done. > >FYI, he never said that this was " his " coctail, nor did he say that all >kids respond to it. On the >contrary, he said that about 60 percent of kids respond to it, but that it >was his Leighs kids who >responded the best. His " window of opportunity " theory (which is not a >theory but something he sees all >the time) was also regarding some kids, not all. He was referring >specifically to , who deteriorated >for about 6 months, then plateaued, and now is making progress without any >help at all. > >By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember >which) in pediatric neurology >as well as genetics in US News and World Report. I value any opinion from >this institution as top >knotch. The way people are talking on this list, they are acting as if he >is a flake, and I find that >hard to take. > >Everyone is free to voice his or her own doubts, but I was just trying to >help. I guess I'll no longer >offer any information which is in any way meant to be optimistic, as it >seems to be resented for some >reason. Sorry I made everyone upset. I was only trying to help. > >Sorry, > > > > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 , I don't think anybody was upset by the information you presented, just intrigued. I don't think anybody on this list thinks that Dr. Kelley is a flake either - quite the contrary in fact as he is a very respected mito specialist. It's just still such a growing field that it would be nice if all the doctors could get together and share their information so that more could benefit. Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hi Terri! >Date: Mon, 15 Nov 1999 16:24:43 -0800 > >I know, but I don't assume anything anymore. I have no reason not to >believe Dr. Kelley. Okay, maybe he >is overly optimistic, but he has no reason to lie to me. My son has been >to 38 doctors in the past 13 >months. Nobody has given us any information or any hope. Why should I not >listen to someone who, for >once, has an idea about what can be done. > >FYI, he never said that this was " his " coctail, nor did he say that all >kids respond to it. On the >contrary, he said that about 60 percent of kids respond to it, but that it >was his Leighs kids who >responded the best. His " window of opportunity " theory (which is not a >theory but something he sees all >the time) was also regarding some kids, not all. He was referring >specifically to , who deteriorated >for about 6 months, then plateaued, and now is making progress without any >help at all. > >By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember >which) in pediatric neurology >as well as genetics in US News and World Report. I value any opinion from >this institution as top >knotch. The way people are talking on this list, they are acting as if he >is a flake, and I find that >hard to take. > >Everyone is free to voice his or her own doubts, but I was just trying to >help. I guess I'll no longer >offer any information which is in any way meant to be optimistic, as it >seems to be resented for some >reason. Sorry I made everyone upset. I was only trying to help. > >Sorry, > > > > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 , I don't think anybody was upset by the information you presented, just intrigued. I don't think anybody on this list thinks that Dr. Kelley is a flake either - quite the contrary in fact as he is a very respected mito specialist. It's just still such a growing field that it would be nice if all the doctors could get together and share their information so that more could benefit. Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hi Terri! >Date: Mon, 15 Nov 1999 16:24:43 -0800 > >I know, but I don't assume anything anymore. I have no reason not to >believe Dr. Kelley. Okay, maybe he >is overly optimistic, but he has no reason to lie to me. My son has been >to 38 doctors in the past 13 >months. Nobody has given us any information or any hope. Why should I not >listen to someone who, for >once, has an idea about what can be done. > >FYI, he never said that this was " his " coctail, nor did he say that all >kids respond to it. On the >contrary, he said that about 60 percent of kids respond to it, but that it >was his Leighs kids who >responded the best. His " window of opportunity " theory (which is not a >theory but something he sees all >the time) was also regarding some kids, not all. He was referring >specifically to , who deteriorated >for about 6 months, then plateaued, and now is making progress without any >help at all. > >By the way, Kennedy Kreiger was just rated either #1 or #2 (can't remember >which) in pediatric neurology >as well as genetics in US News and World Report. I value any opinion from >this institution as top >knotch. The way people are talking on this list, they are acting as if he >is a flake, and I find that >hard to take. > >Everyone is free to voice his or her own doubts, but I was just trying to >help. I guess I'll no longer >offer any information which is in any way meant to be optimistic, as it >seems to be resented for some >reason. Sorry I made everyone upset. I was only trying to help. > >Sorry, > > > > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 3:41:46 PM Eastern Standard Time, sfitzger@... writes: << Dr. Kelley said that the vitamin cocktail is standard practice in mito disorders. He told me that all doctors are prescribing...he did not make it up, it is common knowledge. Morning sickness is pretty awful. Craving Hamburgers!!! MMMM.... >> My guess is that Dr. kelley did not want to say what was in the cocktail he was using as it tends to vary from child to child and also he may be afraid of parents self prescribing as it is mainly over the counter. Clayton does not have Leighs but is responding well to the cocktail. He sees Dr. kelley and he is on: Carnitor (he was deficient), vitamin E, vitamin C, lipoic acid, co-Q10, thiamin. Love Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 3:41:46 PM Eastern Standard Time, sfitzger@... writes: << Dr. Kelley said that the vitamin cocktail is standard practice in mito disorders. He told me that all doctors are prescribing...he did not make it up, it is common knowledge. Morning sickness is pretty awful. Craving Hamburgers!!! MMMM.... >> My guess is that Dr. kelley did not want to say what was in the cocktail he was using as it tends to vary from child to child and also he may be afraid of parents self prescribing as it is mainly over the counter. Clayton does not have Leighs but is responding well to the cocktail. He sees Dr. kelley and he is on: Carnitor (he was deficient), vitamin E, vitamin C, lipoic acid, co-Q10, thiamin. Love Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 3:41:46 PM Eastern Standard Time, sfitzger@... writes: << Dr. Kelley said that the vitamin cocktail is standard practice in mito disorders. He told me that all doctors are prescribing...he did not make it up, it is common knowledge. Morning sickness is pretty awful. Craving Hamburgers!!! MMMM.... >> My guess is that Dr. kelley did not want to say what was in the cocktail he was using as it tends to vary from child to child and also he may be afraid of parents self prescribing as it is mainly over the counter. Clayton does not have Leighs but is responding well to the cocktail. He sees Dr. kelley and he is on: Carnitor (he was deficient), vitamin E, vitamin C, lipoic acid, co-Q10, thiamin. Love Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 4:25:53 PM Eastern Standard Time, sfitzger@... writes: << is " window of opportunity " theory (which is not a theory but something he sees all the time) was also regarding some kids, not all. He was referring specifically to , who deteriorated for about 6 months, then plateaued, and now is making progress without any help at all. >> We just got our report from Dr. Kelley from our September visit and in CLayton's case he said the wondow was up to 3 years (when the brain was still developing). Under 1 they respond best, then under 2 then under 3. Clayton was 26 months when he started the cocktail. I do not have the report in front of me but will write what he wrote when I have time tonight. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 4:25:53 PM Eastern Standard Time, sfitzger@... writes: << is " window of opportunity " theory (which is not a theory but something he sees all the time) was also regarding some kids, not all. He was referring specifically to , who deteriorated for about 6 months, then plateaued, and now is making progress without any help at all. >> We just got our report from Dr. Kelley from our September visit and in CLayton's case he said the wondow was up to 3 years (when the brain was still developing). Under 1 they respond best, then under 2 then under 3. Clayton was 26 months when he started the cocktail. I do not have the report in front of me but will write what he wrote when I have time tonight. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 4:25:53 PM Eastern Standard Time, sfitzger@... writes: << is " window of opportunity " theory (which is not a theory but something he sees all the time) was also regarding some kids, not all. He was referring specifically to , who deteriorated for about 6 months, then plateaued, and now is making progress without any help at all. >> We just got our report from Dr. Kelley from our September visit and in CLayton's case he said the wondow was up to 3 years (when the brain was still developing). Under 1 they respond best, then under 2 then under 3. Clayton was 26 months when he started the cocktail. I do not have the report in front of me but will write what he wrote when I have time tonight. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 2:51:21 PM Pacific Standard Time, SDidinsky@... writes: << Clayton does not have Leighs but is responding well to the cocktail. He sees Dr. kelley >> Sharon, My question is does dr. Kelley adjust the dose of the supplements per child or are they standard, like 200mg CoQ, 100mg lipoic acid........and so on? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 In a message dated 11/15/99 2:51:21 PM Pacific Standard Time, SDidinsky@... writes: << Clayton does not have Leighs but is responding well to the cocktail. He sees Dr. kelley >> Sharon, My question is does dr. Kelley adjust the dose of the supplements per child or are they standard, like 200mg CoQ, 100mg lipoic acid........and so on? Quote Link to comment Share on other sites More sharing options...
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