Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 PS: I was thinking of high doses eg 25/50 milligrammes (not microgrammes). M > > I am thinking of trying this: can nayone recommend a good brand, etc, please? > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Both folinic and folic made my daughter crazy!! Unless you know that this form can be further broken down in the body,I would use care. It was only after using the 5 methyltetrahydrofolate form for a time ~ 6wks~ that my daughter could tolerate the folinic. The calcium it in may have been part of the problem too. > > > > I am thinking of trying this: can nayone recommend a good brand, etc, please? > > Margaret > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Margaret, I think there are quite a few kids who probably need the 5 methyl-tetrahydrofolate form. Metagenics is the most readily found in stores, but I was told by our naturopath not to use that one. We've used the Thorne MTHF for a long while now and find it good. It's pretty easy to find as well. With the 5MTHF I tihnk you'd find you didn't need such high doses. I think Thorne does a 'regular' folic acid in drops, which might be easier to the dose you're looking for, as most capsules are generally 800 mcgs or so. Anita > > > > > > I am thinking of trying this: can nayone recommend a good brand, etc, please? > > > Margaret > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Thank you everyone for answers about this, that's useful. I saw this on another list a few days ago: Folinic acid-responsive seizures are identical to pyridoxine-dependent epilepsy. Gallagher RC, Van Hove JL, Scharer G, Hyland K, Plecko B, Waters PJ, Mercimek-Mahmutoglu S, Stockler-Ipsiroglu S, Salomons GS, Rosenberg EH, Struys EA, Jakobs C. Clinical Genetics and Metabolism, Department of Pediatrics, University of Colorado at Denver, CO, USA. gallagher.renata@... Abstract OBJECTIVE: Folinic acid-responsive seizures and pyridoxine-dependent epilepsy are two treatable causes of neonatal epileptic encephalopathy. The former is diagnosed by characteristic peaks on cerebrospinal fluid (CSF) monoamine metabolite analysis; its genetic basis has remained elusive. The latter is due to alpha-aminoadipic semialdehyde (alpha-AASA) dehydrogenase deficiency, associated with pathogenic mutations in the ALDH7A1 (antiquitin) gene. We report two patients whose CSF showed the marker of folinic acid-responsive seizures, but who responded clinically to pyridoxine. We performed genetic and biochemical testing of samples from these patients, and seven others, to determine the relation between these two disorders. METHODS: CSF samples were analyzed for the presence of alpha-AASA and pipecolic acid. DNA sequencing of the ALDH7A1 gene was performed. RESULTS: Both patients reported here had increased CSF alpha-AASA, CSF pipecolic acid, and known or likely pathogenic mutations in the ALDH7A1 gene, consistent with alpha-AASA dehydrogenase deficiency. Analysis of CSF samples from seven other anonymous individuals diagnosed with folinic acid-responsive seizures showed similar results. INTERPRETATION: These results demonstrate that folinic acid-responsive seizures are due to alpha-AASA dehydrogenase deficiency and mutations in the ALDH7A1 gene. Thus, folinic acid-responsive seizures are identical to the major form of pyridoxine-dependent epilepsy. We recommend consideration of treatment with both pyridoxine and folinic acid for patients with alpha-AASA dehydrogenase deficiency, and consideration of a lysine restricted diet. The evaluation of patients with neonatal epileptic encephalopathy, as well as those with later-onset seizures, should include a measurement of alpha-AASA in urine to identify this likely underdiagnosed and treatable disorder. and I was interested, because my son had a seizure disorder which was dealt with by Vitamin B6. Margaret > > > > > > > > I am thinking of trying this: can nayone recommend a good brand, etc, please? > > > > Margaret > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 FWIW my son does much better on Thorne MTHF than folinic or folic acid, although we have'nt tried other brands of active folic acid. Kenny > > > > > > > > I am thinking of trying this: can nayone recommend a good brand, etc, please? > > > > Margaret > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Margaret, This is interesting.Although the cause of my son's seizures are not known yet, I am trying to modify everything.In this research I wonder why lysine restricted diet has been recommended? I checked it on line, so many foods in various strength have lysine..I would like to control what I am giving to my son..Does anyone know why this is recommended? Thanks for sharing. Nevin > > > > > > > > > > I am thinking of trying this: can nayone recommend a good brand, etc, please? > > > > > Margaret > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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