Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Lori, My son Ethan is 4.5 and weighs about 38 pounds and takes 7 ml in the AM, 7 ml in the afternoon and 6 ml right before bed. He also takes 100 mg of CoQ 10 three times , and a 100 mg of B2. I think the dosages varies depending on the degree of deficiency. My 12 yr. old takes the same does as my 8 year old, which is 10 ml three times a day. My doctor usually checks their serum and urine carnitine levels about two to three weeks after there has been a change in their dose. Has Alycia had her levels checked since starting on carnitine? That would probably be the best indicator of whether or not she is on the correct dosage for her. I'm glad to hear that Alycia has had some intellectual gains! Lissa Downs wrote: > > > Hi, > > Can too much Carnitor cause problems? Alycia has been prescribed > 250mg a day, given once a day in the evening. I just realized > yesterday that I have been giving her 500mg (1 tsp) a day for the past > couple of months. I don't know where my head was. I didn't read the > label. Evidently, the concentration was different because I used to > have to give 1 tsp to get 250 mg but the new label says to give 2.5ml > (1/2 tsp) to get 250mg. > > I have also upped her CoQ10 to 50mg from 30mg and I want to increase > it again. The doctor had told me I could give her up to 200mg but I > want to do it gradually. The pills only come in doses of 30 or 50 so > the next level up would be to give her an additional 30mg pill for a > total of 90mg. Is a jump from 50mg to 90mg too drastic? > > I hope that this double dosing didn't cause Alycia's seizure. On the > other hand, I am wondering if this double dose is responsible for her > recent intellectual gains. > > Can someone remind me of what the typical dose range for carnitor is > for a child of about 35 pounds? > > Thanks. > > Lori > > > 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 December 4, 1999 Report Share Posted December 4, 1999 Hi Lissa, I don't believe that Alycia's carnitine or CoQ levels have been checked with the exception of the orginal tests done when investigating the cause of her symptoms. The original tests showed normal levels of Carnitine...I don't know if CoQ levels were ever checked. She was put on Carnatine, CoQ and vitamin C on the theory that they can't hurt and may even help. There seems to be no interest on the part of her doctors to monitor therpeutic levels of Carnintine. I guess they feel it is unnecessary. Do you know what the mg dose is associated with those ml volumes that you listed? I know on my bottle, 1ml is equal to 100mg. Does your bottle show the same equivalent? If so, it sounds like Ethan is getting 1400mg of Carnitor a day which sounds like a lot. Could you check for me? Thanks, Lori Rick & Lissa Mirand wrote: > > > Lori, > My son Ethan is 4.5 and weighs about 38 pounds and takes 7 ml in > the AM, 7 ml in the afternoon and 6 ml right before bed. He also takes > 100 mg of CoQ 10 three times , and a 100 mg of B2. I think the > dosages varies depending on the degree of deficiency. My 12 yr. old > takes the same does as my 8 year old, which is 10 ml three times > a day. My doctor usually checks their serum and urine carnitine levels > about two to three weeks after there has been a change in their dose. > Has Alycia had her levels checked since starting on carnitine? > That would probably be the best indicator of whether or not she > is on the correct dosage for her. > I'm glad to hear that Alycia has had some intellectual gains! > Lissa > > Downs wrote: > > > > > > > Hi, > > > > Can too much Carnitor cause problems? Alycia has been prescribed > > 250mg a day, given once a day in the evening. I just realized > > yesterday that I have been giving her 500mg (1 tsp) a day for the past > > couple of months. I don't know where my head was. I didn't read the > > label. Evidently, the concentration was different because I used to > > have to give 1 tsp to get 250 mg but the new label says to give 2.5ml > > (1/2 tsp) to get 250mg. > > > > I have also upped her CoQ10 to 50mg from 30mg and I want to increase > > it again. The doctor had told me I could give her up to 200mg but I > > want to do it gradually. The pills only come in doses of 30 or 50 so > > the next level up would be to give her an additional 30mg pill for a > > total of 90mg. Is a jump from 50mg to 90mg too drastic? > > > > I hope that this double dosing didn't cause Alycia's seizure. On the > > other hand, I am wondering if this double dose is responsible for her > > recent intellectual gains. > > > > Can someone remind me of what the typical dose range for carnitor is > > for a child of about 35 pounds? > > > > Thanks. > > > > Lori > > > > > 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Hi Lori, My bottle is also 100 mg per 1 ml. So , Ethan actually takes 2,000 mg. a day. Even at this dosage his levels are barley within the normal range. I have noticed that since his last increase his speech has started to improve. I can't prove that it is the carnitine but that was the only change that we had made. My boys have a difficult time absorbing and using carnitine so it takes a high dose to get their levels where they should be. My daughter is on 1.5 ml twice a day. she is 6 months old and weighs about 13 1/2 pounds. Lissa Downs wrote: > > > Hi Lissa, > > I don't believe that Alycia's carnitine or CoQ levels have been checked with the exception of the orginal > tests done when investigating the cause of her symptoms. The original tests showed normal levels of > Carnitine...I don't know if CoQ levels were ever checked. She was put on Carnatine, CoQ and vitamin C on the > theory that they can't hurt and may even help. There seems to be no interest on the part of her doctors to > monitor therpeutic levels of Carnintine. I guess they feel it is unnecessary. > > Do you know what the mg dose is associated with those ml volumes that you listed? I know on my bottle, 1ml is > equal to 100mg. Does your bottle show the same equivalent? If so, it sounds like Ethan is getting 1400mg of > Carnitor a day which sounds like a lot. Could you check for me? > > Thanks, > > Lori > > Rick & Lissa Mirand wrote: > > > > > > > Lori, > > My son Ethan is 4.5 and weighs about 38 pounds and takes 7 ml in > > the AM, 7 ml in the afternoon and 6 ml right before bed. He also takes > > 100 mg of CoQ 10 three times , and a 100 mg of B2. I think the > > dosages varies depending on the degree of deficiency. My 12 yr. old > > takes the same does as my 8 year old, which is 10 ml three times > > a day. My doctor usually checks their serum and urine carnitine levels > > about two to three weeks after there has been a change in their dose. > > Has Alycia had her levels checked since starting on carnitine? > > That would probably be the best indicator of whether or not she > > is on the correct dosage for her. > > I'm glad to hear that Alycia has had some intellectual gains! > > Lissa > > > > Downs wrote: > > > > > > > > > > > Hi, > > > > > > Can too much Carnitor cause problems? Alycia has been prescribed > > > 250mg a day, given once a day in the evening. I just realized > > > yesterday that I have been giving her 500mg (1 tsp) a day for the past > > > couple of months. I don't know where my head was. I didn't read the > > > label. Evidently, the concentration was different because I used to > > > have to give 1 tsp to get 250 mg but the new label says to give 2.5ml > > > (1/2 tsp) to get 250mg. > > > > > > I have also upped her CoQ10 to 50mg from 30mg and I want to increase > > > it again. The doctor had told me I could give her up to 200mg but I > > > want to do it gradually. The pills only come in doses of 30 or 50 so > > > the next level up would be to give her an additional 30mg pill for a > > > total of 90mg. Is a jump from 50mg to 90mg too drastic? > > > > > > I hope that this double dosing didn't cause Alycia's seizure. On the > > > other hand, I am wondering if this double dose is responsible for her > > > recent intellectual gains. > > > > > > Can someone remind me of what the typical dose range for carnitor is > > > for a child of about 35 pounds? > > > > > > Thanks. > > > > > > Lori > > > > > > > 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. > > > 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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