Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 Alberta, Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks, Krassi > > We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for " no " , nod > her head for " yes " , and had trouble with many vowels (well, all sounds -- > no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5. > > She's beginning to make sentences now (still needs help with some words and > articulation still needs lots of work, but she has suddenly become able to > sound words out when a word is presented to her on paper and she can see > it). What's worked for us (this is the order we did in which it helped > with apraxia): > > - 100% soy-free diet > - low oxalate diet > - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5 > mg of zinc with it each time) > - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us) > - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week > and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week > to balance off the zinc we take) > - carnitine for mito support (b/c we have mito problems, carnitine is > required to help process things like certain amino acids -- namely, leucine > for us -- to help with the production of neurotransmitters). > - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were > inhibiting neurotransmitter production > - NAC (although we've had to moderate the usage of NAC and decrease the > dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies > - Vit D in the winter > - Vit A to correct deficiency > - fish oil, evening primrose, flax seed oil, coq10 > - magnesium > > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going > low oxalate, but it didn't help with apraxia as much before we went low > oxalate. After we were low oxalate for about 2 months and Maia dumped a > whole whack of it, carnosine worked much better and that's why I listed it > after LOD. > > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency -- > because without the proper mito supports in place (riboflavin deficiency > and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also > helps now but it didn't help in the beginning. Again, I think we needed > more B6 and needed to correct the riboflavin deficiency so that B6 could be > used. > > The next things I'm trying (I like having a game plan), and I'm hoping > it'll make the apraxia lift some more and we can get better articulation > and better word recall -- I have a really good feeling about because of > stuff I found out lately: > > - AKG (to bring down ammonia levels and to improve B6 absorption, which > should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting > arsenic toxicity too b/c of reactions to rice -- mainly because of the > riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings). > - revisit tackling the biofilm > > > HTH. Good luck with it -- I know apraxia is really really frustrating. I > really hate apraxia more than I have the words to express. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the " F " sound, the " K " sound, the " G " sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta, Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks, Krassi > > We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for " no " , nod > her head for " yes " , and had trouble with many vowels (well, all sounds -- > no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5. > > She's beginning to make sentences now (still needs help with some words and > articulation still needs lots of work, but she has suddenly become able to > sound words out when a word is presented to her on paper and she can see > it). What's worked for us (this is the order we did in which it helped > with apraxia): > > - 100% soy-free diet > - low oxalate diet > - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5 > mg of zinc with it each time) > - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us) > - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week > and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week > to balance off the zinc we take) > - carnitine for mito support (b/c we have mito problems, carnitine is > required to help process things like certain amino acids -- namely, leucine > for us -- to help with the production of neurotransmitters). > - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were > inhibiting neurotransmitter production > - NAC (although we've had to moderate the usage of NAC and decrease the > dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies > - Vit D in the winter > - Vit A to correct deficiency > - fish oil, evening primrose, flax seed oil, coq10 > - magnesium > > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going > low oxalate, but it didn't help with apraxia as much before we went low > oxalate. After we were low oxalate for about 2 months and Maia dumped a > whole whack of it, carnosine worked much better and that's why I listed it > after LOD. > > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency -- > because without the proper mito supports in place (riboflavin deficiency > and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also > helps now but it didn't help in the beginning. Again, I think we needed > more B6 and needed to correct the riboflavin deficiency so that B6 could be > used. > > The next things I'm trying (I like having a game plan), and I'm hoping > it'll make the apraxia lift some more and we can get better articulation > and better word recall -- I have a really good feeling about because of > stuff I found out lately: > > - AKG (to bring down ammonia levels and to improve B6 absorption, which > should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting > arsenic toxicity too b/c of reactions to rice -- mainly because of the > riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings). > - revisit tackling the biofilm > > > HTH. Good luck with it -- I know apraxia is really really frustrating. I > really hate apraxia more than I have the words to express. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2012 Report Share Posted February 1, 2012 Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PM Subject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the "F" sound, the "K" sound, the "G" sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta, Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks, Krassi > > We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for "no", nod > her head for "yes", and had trouble with many vowels (well, all sounds -- > no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5. > > She's beginning to make sentences now (still needs help with some words and > articulation still needs lots of work, but she has suddenly become able to > sound words out when a word is presented to her on paper and she can see > it). What's worked for us (this is the order we did in which it helped > with apraxia): > > - 100% soy-free diet > - low oxalate diet > - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5 > mg of zinc with it each time) > - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us) > - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week > and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week > to balance off the zinc we take) > - carnitine for mito support (b/c we have mito problems, carnitine is > required to help process things like certain amino acids -- namely, leucine > for us -- to help with the production of neurotransmitters). > - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were > inhibiting neurotransmitter production > - NAC (although we've had to moderate the usage of NAC and decrease the > dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies > - Vit D in the winter > - Vit A to correct deficiency > - fish oil, evening primrose, flax seed oil, coq10 > - magnesium > > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going > low oxalate, but it didn't help with apraxia as much before we went low > oxalate. After we were low oxalate for about 2 months and Maia dumped a > whole whack of it, carnosine worked much better and that's why I listed it > after LOD. > > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency -- > because without the proper mito supports in place (riboflavin deficiency > and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also > helps now but it didn't help in the beginning. Again, I think we needed > more B6 and needed to correct the riboflavin deficiency so that B6 could be > used. > > The next things I'm trying (I like having a game plan), and I'm hoping > it'll make the apraxia lift some more and we can get better articulation > and better word recall -- I have a really good feeling about because of > stuff I found out lately: > > - AKG (to bring down ammonia levels and to improve B6 absorption, which > should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting > arsenic toxicity too b/c of reactions to rice -- mainly because of the > riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings). > - revisit tackling the biofilm > > > HTH. Good luck with it -- I know apraxia is really really frustrating. I > really hate apraxia more than I have the words to express. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 I'd check your OAT, and if your glutaric acid is elevated, I wouldn't do what I did for so many months -- I ignored it and did other things when I should've paid more attention to the riboflavin first. We're up to 80 mg (we're also on high dose B6, 20 mg biotin, 50 mg allthiamine -- all of our B's are quite high) and I'm working up to 100 mg. We did regular riboflavin and it did nothing for us. It worked only when I started giving it as R5P.Today, I'm getting sentences as answers to questions. " What's your name? " and she answers, " I'm Maia " and not just " Maia " . But, I'm also noting here -- it was better for overall language than actual apraxia, but I am seeing slightly better quality of sounds, but she's understanding and using more language structure now, too. There's also the lack of confidence in her ability to use sentences -- I'm finding that she's using sentences only with people she knows very well and has not generalized it to less familiar situations yet. Her ABA team has been switched up lately and she has not yet generalized it to her new ABA therapists. She had started to generalize using sentences to one of her more familiar ABA therapists, though. Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PM Subject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the " F " sound, the " K " sound, the " G " sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta, Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks, Krassi > > We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for " no " , nod > her head for " yes " , and had trouble with many vowels (well, all sounds -- > no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5. > > She's beginning to make sentences now (still needs help with some words and > articulation still needs lots of work, but she has suddenly become able to > sound words out when a word is presented to her on paper and she can see > it). What's worked for us (this is the order we did in which it helped > with apraxia): > > - 100% soy-free diet > - low oxalate diet > - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5 > mg of zinc with it each time) > - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us) > - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week > and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week > to balance off the zinc we take) > - carnitine for mito support (b/c we have mito problems, carnitine is > required to help process things like certain amino acids -- namely, leucine > for us -- to help with the production of neurotransmitters). > - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were > inhibiting neurotransmitter production > - NAC (although we've had to moderate the usage of NAC and decrease the > dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies > - Vit D in the winter > - Vit A to correct deficiency > - fish oil, evening primrose, flax seed oil, coq10 > - magnesium > > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going > low oxalate, but it didn't help with apraxia as much before we went low > oxalate. After we were low oxalate for about 2 months and Maia dumped a > whole whack of it, carnosine worked much better and that's why I listed it > after LOD. > > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency -- > because without the proper mito supports in place (riboflavin deficiency > and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also > helps now but it didn't help in the beginning. Again, I think we needed > more B6 and needed to correct the riboflavin deficiency so that B6 could be > used. > > The next things I'm trying (I like having a game plan), and I'm hoping > it'll make the apraxia lift some more and we can get better articulation > and better word recall -- I have a really good feeling about because of > stuff I found out lately: > > - AKG (to bring down ammonia levels and to improve B6 absorption, which > should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting > arsenic toxicity too b/c of reactions to rice -- mainly because of the > riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings). > - revisit tackling the biofilm > > > HTH. Good luck with it -- I know apraxia is really really frustrating. I > really hate apraxia more than I have the words to express. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Hi Alberta , My 6 years old daughter has also apraxia . She has severe difficulties for moving her tonge by one side to other , although not up and down . She is now starting to make two words sentences , and works very well with her speech teacher , and with her family , but not with other people .Also has problem with generalize it . Our lastest OAT also showed very high level of glutaric , and our HVA/VMA ratio is also high , just like yours ( our 3,40 ) !!! We have an important problem with oxalates , and Owens advised us to start with biotin to treat it and our severe problem , too , with yeast .( thank you very much , ) . So now , we are with 25 mg biotin , but it doesnt seems to help . My daughter is now with a terrible yeast flare , that I hope I could "repair " with more biotin ... We have also started with b6 ( piroxidin hcl ) but in a very small amount because my daughter is CBS ++ and it is supposed to be controversial with high doses of b6 vitamin.... ( dont thinks in this way ... , I think ) .And also started with calcium citrate before each meal . Actually my daughter is terribly bad , with lots of vocal stimming , irritability and shouting and crying a lot . And I am crazy , I have never been so long without antifungal or antibacterial treatment ( we are always fluconazole , anf B , nistatin , ketoconazole .... etc and metronidazole ) . and two weeks ago she has polyuria and I supposed a big oxalate dumping . Our neurologist recommended us this product http://www.rp-dha1000.com/producto_1061026_npd1_dha_1000.html and told us that DHA to be effective has to be at least 1000 mg for my daughter ( 18 kg ) . I use to give 450 mg Opti-dha ( douglas labs ) , and i think it is not enough I havent started with it , and I dont know if it is really a good staff . When he finally manages to control the current situation of the girl ( she is now "crazy" ) , I will try to go introducing copper and Riboflavin Why do you think , Alberta , that AC chelation could help with articulation ?. Many thanks for your post very interesanting posts , Alberta. I learn a lot every day in this forum.and I am extremely grateful to each wonderful person that shares and helps others . Isabel De: Alberta Para: mb12valtrex Enviado: Jueves 2 de febrero de 2012 11:00Asunto: Re: Re: verbal apraxia?? I'd check your OAT, and if your glutaric acid is elevated, I wouldn't do what I did for so many months -- I ignored it and did other things when I should've paid more attention to the riboflavin first. We're up to 80 mg (we're also on high dose B6, 20 mg biotin, 50 mg allthiamine -- all of our B's are quite high) and I'm working up to 100 mg.We did regular riboflavin and it did nothing for us. It worked only when I started giving it as R5P.Today, I'm getting sentences as answers to questions. "What's your name?" and she answers, "I'm Maia" and not just "Maia". But, I'm also noting here -- it was better for overall language than actual apraxia, but I am seeing slightly better quality of sounds, but she's understanding and using more language structure now, too.There's also the lack of confidence in her ability to use sentences -- I'm finding that she's using sentences only with people she knows very well and has not generalized it to less familiar situations yet. Her ABA team has been switched up lately and she has not yet generalized it to her new ABA therapists. She had started to generalize using sentences to one of her more familiar ABA therapists, though. Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PMSubject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the "F" sound, the "K" sound, the "G" sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta,Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper?Thanks,Krassi>> We're wrestling with apraxia now, too. Maia had/has global apraxia -- no> ability to point at objects out of her reach, shake her head for "no", nod> her head for "yes", and had trouble with many vowels (well, all sounds --> no vocal imitations at all). She spent the first 3 years unable to utter a> single syllable and had very bad excessive drooling until age 3.5.> > She's beginning to make sentences now (still needs help with some words and> articulation still needs lots of work, but she has suddenly become able to> sound words out when a word is presented to her on paper and she can see> it). What's worked for us (this is the order we did in which it helped> with apraxia):> > - 100% soy-free diet> - low oxalate diet> - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5> mg of zinc with it each time)> - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it> did nothing -- 5-MTHF definitely works much better for us)> - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week> and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day,> then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week> to balance off the zinc we take)> - carnitine for mito support (b/c we have mito problems, carnitine is> required to help process things like certain amino acids -- namely, leucine> for us -- to help with the production of neurotransmitters).> - high dose B6 for our oxalate issues (we're doing about 7 mg per pound> of body weight) - b/c they were inhibiting mito functions which were> inhibiting neurotransmitter production> - NAC (although we've had to moderate the usage of NAC and decrease the> dosage because Maia started biting more people)> - high dose riboflavin to correct deficiencies> - Vit D in the winter> - Vit A to correct deficiency> - fish oil, evening primrose, flax seed oil, coq10> - magnesium> > > Riboflavin and copper have brought the most significant changes, but these> may be problems specific to us. Also, we had done carnosine before going> low oxalate, but it didn't help with apraxia as much before we went low> oxalate. After we were low oxalate for about 2 months and Maia dumped a> whole whack of it, carnosine worked much better and that's why I listed it> after LOD.> > We had also done fish oil very early on and it did nothing until I gave> proper mito support and until I corrected the riboflavin deficiency --> because without the proper mito supports in place (riboflavin deficiency> and carnitine), the body couldn't process fats properly and the EFAs I was> giving weren't being absorbed and not helping with apraxia. Magnesium also> helps now but it didn't help in the beginning. Again, I think we needed> more B6 and needed to correct the riboflavin deficiency so that B6 could be> used.> > The next things I'm trying (I like having a game plan), and I'm hoping> it'll make the apraxia lift some more and we can get better articulation> and better word recall -- I have a really good feeling about because of> stuff I found out lately:> > - AKG (to bring down ammonia levels and to improve B6 absorption, which> should help to make more neurotransmitters)> - AC chelation (Maia is likely mercury and lead toxic, also suspecting> arsenic toxicity too b/c of reactions to rice -- mainly because of the> riboflavin deficiency that created oxidative stress, these toxins built up> from food, water and the mercury came from me having 8 amalgam fillings).> - revisit tackling the biofilm> > > HTH. Good luck with it -- I know apraxia is really really frustrating. I> really hate apraxia more than I have the words to express.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 How long did it take to get sentences? From: Alberta ; To: <mb12valtrex >; Subject: Re: Re: verbal apraxia?? Sent: Thu, Feb 2, 2012 10:00:57 AM I'd check your OAT, and if your glutaric acid is elevated, I wouldn't do what I did for so many months -- I ignored it and did other things when I should've paid more attention to the riboflavin first. We're up to 80 mg (we're also on high dose B6, 20 mg biotin, 50 mg allthiamine -- all of our B's are quite high) and I'm working up to 100 mg. We did regular riboflavin and it did nothing for us. It worked only when I started giving it as R5P.Today, I'm getting sentences as answers to questions. " What's your name? " and she answers, " I'm Maia " and not just " Maia " . But, I'm also noting here -- it was better for overall language than actual apraxia, but I am seeing slightly better quality of sounds, but she's understanding and using more language structure now, too. There's also the lack of confidence in her ability to use sentences -- I'm finding that she's using sentences only with people she knows very well and has not generalized it to less familiar situations yet. Her ABA team has been switched up lately and she has not yet generalized it to her new ABA therapists. She had started to generalize using sentences to one of her more familiar ABA therapists, though. Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PM Subject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the " F " sound, the " K " sound, the " G " sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta, Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks, Krassi > > We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for " no " , nod > her head for " yes " , and had trouble with many vowels (well, all sounds -- > no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5. > > She's beginning to make sentences now (still needs help with some words and > articulation still needs lots of work, but she has suddenly become able to > sound words out when a word is presented to her on paper and she can see > it). What's worked for us (this is the order we did in which it helped > with apraxia): > > - 100% soy-free diet > - low oxalate diet > - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5 > mg of zinc with it each time) > - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us) > - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week > and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week > to balance off the zinc we take) > - carnitine for mito support (b/c we have mito problems, carnitine is > required to help process things like certain amino acids -- namely, leucine > for us -- to help with the production of neurotransmitters). > - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were > inhibiting neurotransmitter production > - NAC (although we've had to moderate the usage of NAC and decrease the > dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies > - Vit D in the winter > - Vit A to correct deficiency > - fish oil, evening primrose, flax seed oil, coq10 > - magnesium > > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going > low oxalate, but it didn't help with apraxia as much before we went low > oxalate. After we were low oxalate for about 2 months and Maia dumped a > whole whack of it, carnosine worked much better and that's why I listed it > after LOD. > > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency -- > because without the proper mito supports in place (riboflavin deficiency > and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also > helps now but it didn't help in the beginning. Again, I think we needed > more B6 and needed to correct the riboflavin deficiency so that B6 could be > used. > > The next things I'm trying (I like having a game plan), and I'm hoping > it'll make the apraxia lift some more and we can get better articulation > and better word recall -- I have a really good feeling about because of > stuff I found out lately: > > - AKG (to bring down ammonia levels and to improve B6 absorption, which > should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting > arsenic toxicity too b/c of reactions to rice -- mainly because of the > riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings). > - revisit tackling the biofilm > > > HTH. Good luck with it -- I know apraxia is really really frustrating. I > really hate apraxia more than I have the words to express. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Isabel, have you tried to add a bit of molybdenum? Or a multi mineral containing it? Hi Alberta , My 6 years old daughter has also apraxia . She has severe difficulties for moving her tonge by one side to other , although not up and down . She is now starting to make two words sentences , and works very well with her speech teacher , and with her family , but not with other people .Also has problem with generalize it . Our lastest OAT also showed very high level of glutaric , and our HVA/VMA ratio is also high , just like yours ( our 3,40 ) !!! We have an important problem with oxalates , and Owens advised us to start with biotin to treat it and our severe problem , too , with yeast .( thank you very much , ) . So now , we are with 25 mg biotin , but it doesnt seems to help . My daughter is now with a terrible yeast flare , that I hope I could " repair " with more biotin ... We have also started with b6 ( piroxidin hcl ) but in a very small amount because my daughter is CBS ++ and it is supposed to be controversial with high doses of b6 vitamin.... ( dont thinks in this way ... , I think ) .And also started with calcium citrate before each meal . Actually my daughter is terribly bad , with lots of vocal stimming , irritability and shouting and crying a lot . And I am crazy , I have never been so long without antifungal or antibacterial treatment ( we are always fluconazole , anf B , nistatin , ketoconazole .... etc and metronidazole ) . and two weeks ago she has polyuria and I supposed a big oxalate dumping . Our neurologist recommended us this product http://www.rp-dha1000.com/producto_1061026_npd1_dha_1000.html and told us that DHA to be effective has to be at least 1000 mg for my daughter ( 18 kg ) . I use to give 450 mg Opti-dha ( douglas labs ) , and i think it is not enough I havent started with it , and I dont know if it is really a good staff . When he finally manages to control the current situation of the girl ( she is now " crazy " ) , I will try to go introducing copper and Riboflavin Why do you think , Alberta , that AC chelation could help with articulation ?. Many thanks for your post very interesanting posts , Alberta. I learn a lot every day in this forum.and I am extremely grateful to each wonderful person that shares and helps others . Isabel De: Alberta Para: mb12valtrex Enviado: Jueves 2 de febrero de 2012 11:00 Asunto: Re: Re: verbal apraxia?? I'd check your OAT, and if your glutaric acid is elevated, I wouldn't do what I did for so many months -- I ignored it and did other things when I should've paid more attention to the riboflavin first. We're up to 80 mg (we're also on high dose B6, 20 mg biotin, 50 mg allthiamine -- all of our B's are quite high) and I'm working up to 100 mg. We did regular riboflavin and it did nothing for us. It worked only when I started giving it as R5P.Today, I'm getting sentences as answers to questions. " What's your name? " and she answers, " I'm Maia " and not just " Maia " . But, I'm also noting here -- it was better for overall language than actual apraxia, but I am seeing slightly better quality of sounds, but she's understanding and using more language structure now, too. There's also the lack of confidence in her ability to use sentences -- I'm finding that she's using sentences only with people she knows very well and has not generalized it to less familiar situations yet. Her ABA team has been switched up lately and she has not yet generalized it to her new ABA therapists. She had started to generalize using sentences to one of her more familiar ABA therapists, though. Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PMSubject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the " F " sound, the " K " sound, the " G " sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta,Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks,Krassi>> We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for " no " , nod> her head for " yes " , and had trouble with many vowels (well, all sounds --> no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5.> > She's beginning to make sentences now (still needs help with some words and> articulation still needs lots of work, but she has suddenly become able to> sound words out when a word is presented to her on paper and she can see> it). What's worked for us (this is the order we did in which it helped > with apraxia):> > - 100% soy-free diet> - low oxalate diet> - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5> mg of zinc with it each time)> - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us)> - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week> and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week> to balance off the zinc we take)> - carnitine for mito support (b/c we have mito problems, carnitine is> required to help process things like certain amino acids -- namely, leucine> for us -- to help with the production of neurotransmitters).> - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were> inhibiting neurotransmitter production> - NAC (although we've had to moderate the usage of NAC and decrease the> dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies> - Vit D in the winter> - Vit A to correct deficiency> - fish oil, evening primrose, flax seed oil, coq10> - magnesium> > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going> low oxalate, but it didn't help with apraxia as much before we went low> oxalate. After we were low oxalate for about 2 months and Maia dumped a> whole whack of it, carnosine worked much better and that's why I listed it> after LOD.> > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency --> because without the proper mito supports in place (riboflavin deficiency> and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also> helps now but it didn't help in the beginning. Again, I think we needed> more B6 and needed to correct the riboflavin deficiency so that B6 could be > used.> > The next things I'm trying (I like having a game plan), and I'm hoping> it'll make the apraxia lift some more and we can get better articulation> and better word recall -- I have a really good feeling about because of> stuff I found out lately:> > - AKG (to bring down ammonia levels and to improve B6 absorption, which> should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting> arsenic toxicity too b/c of reactions to rice -- mainly because of the> riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings).> - revisit tackling the biofilm> > > HTH. Good luck with it -- I know apraxia is really really frustrating. I> really hate apraxia more than I have the words to express. > -- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:http://www.facebook.com/note.php?note_id=10150543521682565 --------------------------------------------------------------------------------------------Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565 ------Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Toni , I have just received yesterday our last hair test and mineralogram1º , and my daughter is very , very low in molybdenum ... You have reason , i should try molybdenum !! De: Toni Marie Lombardo Para: mb12valtrex Enviado: Jueves 2 de febrero de 2012 16:22Asunto: Re: Re: verbal apraxia?? Isabel, have you tried to add a bit of molybdenum? Or a multi mineral containing it? Hi Alberta , My 6 years old daughter has also apraxia . She has severe difficulties for moving her tonge by one side to other , although not up and down . She is now starting to make two words sentences , and works very well with her speech teacher , and with her family , but not with other people .Also has problem with generalize it . Our lastest OAT also showed very high level of glutaric , and our HVA/VMA ratio is also high , just like yours ( our 3,40 ) !!! We have an important problem with oxalates , and Owens advised us to start with biotin to treat it and our severe problem , too , with yeast .( thank you very much , ) . So now , we are with 25 mg biotin , but it doesnt seems to help . My daughter is now with a terrible yeast flare , that I hope I could "repair " with more biotin ... We have also started with b6 ( piroxidin hcl ) but in a very small amount because my daughter is CBS ++ and it is supposed to be controversial with high doses of b6 vitamin.... ( dont thinks in this way ... , I think ) .And also started with calcium citrate before each meal . Actually my daughter is terribly bad , with lots of vocal stimming , irritability and shouting and crying a lot . And I am crazy , I have never been so long without antifungal or antibacterial treatment ( we are always fluconazole , anf B , nistatin , ketoconazole .... etc and metronidazole ) . and two weeks ago she has polyuria and I supposed a big oxalate dumping . Our neurologist recommended us this product http://www.rp-dha1000.com/producto_1061026_npd1_dha_1000.html and told us that DHA to be effective has to be at least 1000 mg for my daughter ( 18 kg ) . I use to give 450 mg Opti-dha ( douglas labs ) , and i think it is not enough I havent started with it , and I dont know if it is really a good staff . When he finally manages to control the current situation of the girl ( she is now "crazy" ) , I will try to go introducing copper and Riboflavin Why do you think , Alberta , that AC chelation could help with articulation ?. Many thanks for your post very interesanting posts , Alberta. I learn a lot every day in this forum.and I am extremely grateful to each wonderful person that shares and helps others . Isabel De: Alberta Para: mb12valtrex Enviado: Jueves 2 de febrero de 2012 11:00Asunto: Re: Re: verbal apraxia?? I'd check your OAT, and if your glutaric acid is elevated, I wouldn't do what I did for so many months -- I ignored it and did other things when I should've paid more attention to the riboflavin first. We're up to 80 mg (we're also on high dose B6, 20 mg biotin, 50 mg allthiamine -- all of our B's are quite high) and I'm working up to 100 mg.We did regular riboflavin and it did nothing for us. It worked only when I started giving it as R5P.Today, I'm getting sentences as answers to questions. "What's your name?" and she answers, "I'm Maia" and not just "Maia". But, I'm also noting here -- it was better for overall language than actual apraxia, but I am seeing slightly better quality of sounds, but she's understanding and using more language structure now, too.There's also the lack of confidence in her ability to use sentences -- I'm finding that she's using sentences only with people she knows very well and has not generalized it to less familiar situations yet. Her ABA team has been switched up lately and she has not yet generalized it to her new ABA therapists. She had started to generalize using sentences to one of her more familiar ABA therapists, though. Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PMSubject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the "F" sound, the "K" sound, the "G" sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta,Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper?Thanks,Krassi>> We're wrestling with apraxia now, too. Maia had/has global apraxia -- no> ability to point at objects out of her reach, shake her head for "no", nod> her head for "yes", and had trouble with many vowels (well, all sounds --> no vocal imitations at all). She spent the first 3 years unable to utter a> single syllable and had very bad excessive drooling until age 3.5.> > She's beginning to make sentences now (still needs help with some words and> articulation still needs lots of work, but she has suddenly become able to> sound words out when a word is presented to her on paper and she can see> it). What's worked for us (this is the order we did in which it helped> with apraxia):> > - 100% soy-free diet> - low oxalate diet> - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5> mg of zinc with it each time)> - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it> did nothing -- 5-MTHF definitely works much better for us)> - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week> and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day,> then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week> to balance off the zinc we take)> - carnitine for mito support (b/c we have mito problems, carnitine is> required to help process things like certain amino acids -- namely, leucine> for us -- to help with the production of neurotransmitters).> - high dose B6 for our oxalate issues (we're doing about 7 mg per pound> of body weight) - b/c they were inhibiting mito functions which were> inhibiting neurotransmitter production> - NAC (although we've had to moderate the usage of NAC and decrease the> dosage because Maia started biting more people)> - high dose riboflavin to correct deficiencies> - Vit D in the winter> - Vit A to correct deficiency> - fish oil, evening primrose, flax seed oil, coq10> - magnesium> > > Riboflavin and copper have brought the most significant changes, but these> may be problems specific to us. Also, we had done carnosine before going> low oxalate, but it didn't help with apraxia as much before we went low> oxalate. After we were low oxalate for about 2 months and Maia dumped a> whole whack of it, carnosine worked much better and that's why I listed it> after LOD.> > We had also done fish oil very early on and it did nothing until I gave> proper mito support and until I corrected the riboflavin deficiency --> because without the proper mito supports in place (riboflavin deficiency> and carnitine), the body couldn't process fats properly and the EFAs I was> giving weren't being absorbed and not helping with apraxia. Magnesium also> helps now but it didn't help in the beginning. Again, I think we needed> more B6 and needed to correct the riboflavin deficiency so that B6 could be> used.> > The next things I'm trying (I like having a game plan), and I'm hoping> it'll make the apraxia lift some more and we can get better articulation> and better word recall -- I have a really good feeling about because of> stuff I found out lately:> > - AKG (to bring down ammonia levels and to improve B6 absorption, which> should help to make more neurotransmitters)> - AC chelation (Maia is likely mercury and lead toxic, also suspecting> arsenic toxicity too b/c of reactions to rice -- mainly because of the> riboflavin deficiency that created oxidative stress, these toxins built up> from food, water and the mercury came from me having 8 amalgam fillings).> - revisit tackling the biofilm> > > HTH. Good luck with it -- I know apraxia is really really frustrating. I> really hate apraxia more than I have the words to express.> -- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:http://www.facebook.com/note.php?note_id=10150543521682565--------------------------------------------------------------------------------------------Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565------Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Hi Isabel,IMHO, I think chelation is necessary after they've had a prolonged period of low riboflavin because the body has been under oxidative stress (low glutathione). While there's low glutathione, the body cannot detox. All the food that we eat, all the water we drink, all the air we breathe (especially if we live in a city) -- everything has trace toxins and heavy metals. Everything has some small trace of mercury in it -- even vegetables. The reason why other people don't get mercury poisoning is that they have adequate glutathione to detox it. But if our kids were riboflavin deficient, they will not have been able to make glutathione, even if all the other precursors were present. That's when metals and other toxins begin to accumulate, not necessarily because they touched any one particular thing that was especially toxic -- but it's the accumulated effect of everything that they consumed that they cannot detox. Like my daughter eating rice, for example. Had she had adequate glutathione, she may have been able to detox the trace arsenic that naturally occurs in it. But since she had no glutathione for who knows how long, the tiniest bit of rice will " tip " her into what appears to be When we get the riboflavin up again and they're making glutathione, then detox. I think that when the issue about why low glutathione exists is addressed (whether it's fixed " for good " or whether some other long-term support is needed, is another matter), it's probably not impossible that the body will eventually detox over time with its own glutathione. But with the amount of accumulation that happens during the time (maybe years?) where their bodies had low glutathione, it might take the body many years to detox the daily stuff plus the accumulated stuff. I imagine it'll take some time to detox all of that, especially if they're prone to oxidative stress. Hi Alberta , My 6 years old daughter has also apraxia . She has severe difficulties for moving her tonge by one side to other , although not up and down . She is now starting to make two words sentences , and works very well with her speech teacher , and with her family , but not with other people .Also has problem with generalize it . Our lastest OAT also showed very high level of glutaric , and our HVA/VMA ratio is also high , just like yours ( our 3,40 ) !!! We have an important problem with oxalates , and Owens advised us to start with biotin to treat it and our severe problem , too , with yeast .( thank you very much , ) . So now , we are with 25 mg biotin , but it doesnt seems to help . My daughter is now with a terrible yeast flare , that I hope I could " repair " with more biotin ... We have also started with b6 ( piroxidin hcl ) but in a very small amount because my daughter is CBS ++ and it is supposed to be controversial with high doses of b6 vitamin.... ( dont thinks in this way ... , I think ) .And also started with calcium citrate before each meal . Actually my daughter is terribly bad , with lots of vocal stimming , irritability and shouting and crying a lot . And I am crazy , I have never been so long without antifungal or antibacterial treatment ( we are always fluconazole , anf B , nistatin , ketoconazole .... etc and metronidazole ) . and two weeks ago she has polyuria and I supposed a big oxalate dumping . Our neurologist recommended us this product http://www.rp-dha1000.com/producto_1061026_npd1_dha_1000.html and told us that DHA to be effective has to be at least 1000 mg for my daughter ( 18 kg ) . I use to give 450 mg Opti-dha ( douglas labs ) , and i think it is not enough I havent started with it , and I dont know if it is really a good staff . When he finally manages to control the current situation of the girl ( she is now " crazy " ) , I will try to go introducing copper and Riboflavin Why do you think , Alberta , that AC chelation could help with articulation ?. Many thanks for your post very interesanting posts , Alberta. I learn a lot every day in this forum.and I am extremely grateful to each wonderful person that shares and helps others . Isabel De: Alberta Para: mb12valtrex Enviado: Jueves 2 de febrero de 2012 11:00 Asunto: Re: Re: verbal apraxia?? I'd check your OAT, and if your glutaric acid is elevated, I wouldn't do what I did for so many months -- I ignored it and did other things when I should've paid more attention to the riboflavin first. We're up to 80 mg (we're also on high dose B6, 20 mg biotin, 50 mg allthiamine -- all of our B's are quite high) and I'm working up to 100 mg. We did regular riboflavin and it did nothing for us. It worked only when I started giving it as R5P.Today, I'm getting sentences as answers to questions. " What's your name? " and she answers, " I'm Maia " and not just " Maia " . But, I'm also noting here -- it was better for overall language than actual apraxia, but I am seeing slightly better quality of sounds, but she's understanding and using more language structure now, too. There's also the lack of confidence in her ability to use sentences -- I'm finding that she's using sentences only with people she knows very well and has not generalized it to less familiar situations yet. Her ABA team has been switched up lately and she has not yet generalized it to her new ABA therapists. She had started to generalize using sentences to one of her more familiar ABA therapists, though. Thanks all for such good information. What amount of riboflavin should we give? 4yrs old................On Dr.Goldberg's protocol To: mb12valtrex Sent: Wednesday, 1 February 2012 7:43 PMSubject: Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the " F " sound, the " K " sound, the " G " sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta,Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper? Thanks,Krassi>> We're wrestling with apraxia now, too. Maia had/has global apraxia -- no > ability to point at objects out of her reach, shake her head for " no " , nod> her head for " yes " , and had trouble with many vowels (well, all sounds --> no vocal imitations at all). She spent the first 3 years unable to utter a > single syllable and had very bad excessive drooling until age 3.5.> > She's beginning to make sentences now (still needs help with some words and> articulation still needs lots of work, but she has suddenly become able to> sound words out when a word is presented to her on paper and she can see> it). What's worked for us (this is the order we did in which it helped > with apraxia):> > - 100% soy-free diet> - low oxalate diet> - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5> mg of zinc with it each time)> - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it > did nothing -- 5-MTHF definitely works much better for us)> - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week> and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day, > then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week> to balance off the zinc we take)> - carnitine for mito support (b/c we have mito problems, carnitine is> required to help process things like certain amino acids -- namely, leucine> for us -- to help with the production of neurotransmitters).> - high dose B6 for our oxalate issues (we're doing about 7 mg per pound > of body weight) - b/c they were inhibiting mito functions which were> inhibiting neurotransmitter production> - NAC (although we've had to moderate the usage of NAC and decrease the> dosage because Maia started biting more people) > - high dose riboflavin to correct deficiencies> - Vit D in the winter> - Vit A to correct deficiency> - fish oil, evening primrose, flax seed oil, coq10> - magnesium> > > Riboflavin and copper have brought the most significant changes, but these > may be problems specific to us. Also, we had done carnosine before going> low oxalate, but it didn't help with apraxia as much before we went low> oxalate. After we were low oxalate for about 2 months and Maia dumped a> whole whack of it, carnosine worked much better and that's why I listed it> after LOD.> > We had also done fish oil very early on and it did nothing until I gave > proper mito support and until I corrected the riboflavin deficiency --> because without the proper mito supports in place (riboflavin deficiency> and carnitine), the body couldn't process fats properly and the EFAs I was > giving weren't being absorbed and not helping with apraxia. Magnesium also> helps now but it didn't help in the beginning. Again, I think we needed> more B6 and needed to correct the riboflavin deficiency so that B6 could be > used.> > The next things I'm trying (I like having a game plan), and I'm hoping> it'll make the apraxia lift some more and we can get better articulation> and better word recall -- I have a really good feeling about because of> stuff I found out lately:> > - AKG (to bring down ammonia levels and to improve B6 absorption, which> should help to make more neurotransmitters) > - AC chelation (Maia is likely mercury and lead toxic, also suspecting> arsenic toxicity too b/c of reactions to rice -- mainly because of the> riboflavin deficiency that created oxidative stress, these toxins built up > from food, water and the mercury came from me having 8 amalgam fillings).> - revisit tackling the biofilm> > > HTH. Good luck with it -- I know apraxia is really really frustrating. I > really hate apraxia more than I have the words to express. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Hi Alberta-I know this wasn't directed at me, but I just wanted to thank you. I have been trying to figure out this puzzle for weeks with glutathione and detox. So thank you! I just joined this group a month or two ago and am so thankful for all of the information you all provide.Thanks again!Mom to 5 year-old LiamConnected by DROID on Verizon Wireless Re: Re: verbal apraxia?? Hi Krassi,It was the OAT test from Great Plains Lab. Riboflavin came up as high glutaric acid. The HVA/VMA ratio of higher than 2 showed that my daughter needed copper (my daughter's HVA/VMA ratio was 3.19). The copper got her to start verbal imitation. The riboflavin got her to start using sentences. The apraxia still isn't fully resolved but we're seeing more gains by the day. Today, she just understood how to answer a question with a sentence instead of a single word. She's still missing several consonant sounds (the " F " sound, the " K " sound, the " G " sound is still hit-and-miss but we're just going to keep practicing them). I think chelation might clean up the articulation. The supps we've used so far, especially riboflavin, has allowed her to grasp language structure and pay attention to how things are said by other people. Really cool stuff. Alberta,Very good post, thank you so much! My son is also with apraxia, so your recommendations are very important to me as well. Could you tell me which tests showed that you need to supplement with riboflavin and copper?Thanks,Krassi>> We're wrestling with apraxia now, too. Maia had/has global apraxia -- no> ability to point at objects out of her reach, shake her head for " no " , nod> her head for " yes " , and had trouble with many vowels (well, all sounds --> no vocal imitations at all). She spent the first 3 years unable to utter a> single syllable and had very bad excessive drooling until age 3.5.> > She's beginning to make sentences now (still needs help with some wordsand> articulation still needs lots of work, but she has suddenly become able to> sound words out when a word is presented to her on paper and she can see> it). What's worked for us (this is the order we did in which it helped> with apraxia):> > - 100% soy-free diet> - low oxalate diet> - carnosine (we still take it -- we're doing 2 doses of 500 mg/day + 5> mg of zinc with it each time)> - 5-MTHF (about 1.5 mg/day -- we had done folinic with our B12, but it> did nothing -- 5-MTHF definitely works much better for us)> - copper (b/c of high HVA/VMA ratio -- started at 1 mg/day for a week> and then dropped it down to 0.75 mg/day then 0.5 mg/day, then 0.25 mg/day,> then 0.25 every 2 days, and now we're on a maintenance dose of 0.25 mg/week> to balance off the zinc we take)> - carnitine for mito support (b/c we have mito problems, carnitineis> required to help process things like certain amino acids -- namely, leucine> for us -- to help with the production of neurotransmitters).> - high dose B6 for our oxalate issues (we're doing about 7 mg per pound> of body weight) - b/c they were inhibiting mito functions which were> inhibiting neurotransmitter production> - NAC (although we've had to moderate the usage of NAC and decrease the> dosage because Maia started biting more people)> - high dose riboflavin to correct deficiencies> - Vit D in the winter> - Vit A to correct deficiency> - fish oil, evening primrose, flax seed oil, coq10> - magnesium> > > Riboflavin and copper have brought the most significant changes, but these> may be problems specific to us. Also, we had done carnosine before going> low oxalate, but it didn't help with apraxia as much before we went low>oxalate. After we were low oxalate for about 2 months and Maia dumped a> whole whack of it, carnosine worked much better and that's why I listed it> after LOD.> > We had also done fish oil very early on and it did nothing until I gave> proper mito support and until I corrected the riboflavin deficiency --> because without the proper mito supports in place (riboflavin deficiency> and carnitine), the body couldn't process fats properly and the EFAs I was> giving weren't being absorbed and not helping with apraxia. Magnesium also> helps now but it didn't help in the beginning. Again, I think we needed> more B6 and needed to correct the riboflavin deficiency so that B6 could be> used.> > The next things I'm trying (I like having a game plan), and I'm hoping> it'll make the apraxia lift some more and we can get better articulation> and better word recall-- I have a really good feeling about because of> stuff I found out lately:> > - AKG (to bring down ammonia levels and to improve B6 absorption, which> should help to make more neurotransmitters)> - AC chelation (Maia is likely mercury and lead toxic, also suspecting> arsenic toxicity too b/c of reactions to rice -- mainly because of the> riboflavin deficiency that created oxidative stress, these toxins built up> from food, water and the mercury came from me having 8 amalgam fillings).> - revisit tackling the biofilm> > > HTH. Good luck with it -- I know apraxia is really really frustrating. I> really hate apraxia more than I have the words to express.> Quote Link to comment Share on other sites More sharing options...
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