Guest guest Posted March 17, 2012 Report Share Posted March 17, 2012 hi i keep writing about this in the hope that someone has an answer. my daughter constantly has her hands in her mouth with tons of saliva. we r gfcf low ox and low sal. she does have a filling. any thoughts. Sent from Yahoo! Mail on Android Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2012 Report Share Posted March 17, 2012 my personal first guess is mercury. my son was drooling everything in his mouth starting from the first vaccine and long before teething started and didnt end until i started andy cutler chealtion. within a couple months the massive drooling was gone. never to return since a year and a half . channa To: "mb12valtrex@yahoogroups com" <mb12valtrex > Sent: Saturday, March 17, 2012 3:35 PMSubject: hands in mouth hi i keep writing about this in the hope that someone has an answer. my daughter constantly has her hands in her mouth with tons of saliva. we r gfcf low ox and low sal. she does have a filling. any thoughts. Sent from Yahoo! Mail on Android Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2012 Report Share Posted March 17, 2012 Im very interested in this also. For the past 4 months ds has had either his fingers or his hands in his mouth. He didnt have any fillings at the time. We thought it was a bad tooth, but after the filling and 1 extracted is is just as bad as before! Anyone else see this??Sent from my iPad hi i keep writing about this in the hope that someone has an answer. my daughter constantly has her hands in her mouth with tons of saliva. we r gfcf low ox and low sal. she does have a filling. any thoughts. Sent from Yahoo! Mail on Android = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2012 Report Share Posted March 17, 2012 Yeast flare, issues with zinc/copper and molars (my two year is dealing with the last and first one...she was also doing this when she had issues with zinc (still haven't figured out if it was too much, too little zinc or an additive that caused an excitatory response)...my asd son has lately been playing with his mouth (definitely he is in a yeast flare but parasites could be playing a role)...metals are also a problem...-- Sent from my Palm Pre Im very interested in this also. For the past 4 months ds has had either his fingers or his hands in his mouth. He didnt have any fillings at the time. We thought it was a bad tooth, but after the filling and 1 extracted is is just as bad as before! Anyone else see this??Sent from my iPad hi i keep writing about this in the hope that someone has an answer. my daughter constantly has her hands in her mouth with tons of saliva. we r gfcf low ox and low sal. she does have a filling. any thoughts. Sent from Yahoo! Mail on Android = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2012 Report Share Posted March 17, 2012 could also be reflux Yeast flare, issues with zinc/copper and molars (my two year is dealing with the last and first one...she was also doing this when she had issues with zinc (still haven't figured out if it was too much, too little zinc or an additive that caused an excitatory response)...my asd son has lately been playing with his mouth (definitely he is in a yeast flare but parasites could be playing a role)...metals are also a problem...-- Sent from my Palm Pre Im very interested in this also. For the past 4 months ds has had either his fingers or his hands in his mouth. He didnt have any fillings at the time. We thought it was a bad tooth, but after the filling and 1 extracted is is just as bad as before! Anyone else see this??Sent from my iPad hi i keep writing about this in the hope that someone has an answer. my daughter constantly has her hands in her mouth with tons of saliva. we r gfcf low ox and low sal. she does have a filling. any thoughts.Sent from Yahoo! Mail on Android = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 I think I know the answer to this question. Try upping their B1 and see if it gets worse. If so, I'd look at GABA toxicity. I saw a re-emergence of this recently with Maia when I upped her benfotiamine. The pathway to make acetylcholine has been " short-circuited " (because of issues with not being able to produce Acetyl-CoA). I looked up why I suddenly saw drooling in her again. B1 isn't supposed to be " toxic " , especially with oral supplementation. When I looked up the two neurotransmitters that B1 primarily makes: acetylcholine and GABA. Acetylcholine is an excitatory neurotransmitter. GABA is an inhibitory one. If the supply of B1 increases, and the body thinks it does not need acetylcholine (it could be that the receptors -- choline acetyltransferase -- are binding to mercury and cannot bind to acetylcholine) or there could have been a B2 deficiency long enough where it shut down the mito function to produce Acetyl-CoA (which is needed to make acetylcholine -- at which time to re-start this pathway, you'll need to jumpstart it with ALCAR). Whatever the reason, when more resources for either of these two pathways become more available but one of the pathways is shut down, then it will produce more of the neurotransmitter where the pathway isn't blocked...in my daughter's case, it was GABA. With too much inhibitory neurotransmitters going around, a lot of neurons are locked in the " off " (inhibitory) state and don't fire messages between the mouth and the brain. One of the symptoms of GABA toxicity is numbness around the mouth. I would start ALCAR to eliminate the excessive drooling problem. It has worked for both of my kids. (eliminating soy also worked for my daughter...but when the problem was triggered by B1 -- and it's not that she doesn't need B1 -- she does need B1 but it's just not properly channeled on its own and needs some carnitine support and chelation to remove the mercury -- and when B1 is improperly channeled, it sometimes can make too much inhibitory neurotransmitter -- GABA). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Alberta,My daughter has problems related Acetyl- CoA.She was suspected to have deficit ( acetoacetyl CoA thiolasa mitocondrial deficit ) but we did a fibroblast study and it was normal , so my doctor rule out this pathology but my daughter still has problems with ketosis and hyper and hypo glycemias .Can i email you offlist to comment it ??Could you help me to u derstand more about the relation between neurotransmitters and this issue ??Thank you.IsabelEnviado desde mi iPadEl 18/03/2012, a las 07:47, Alberta escribió: I think I know the answer to this question. Try upping their B1 and see if it gets worse. If so, I'd look at GABA toxicity. I saw a re-emergence of this recently with Maia when I upped her benfotiamine. The pathway to make acetylcholine has been "short-circuited" (because of issues with not being able to produce Acetyl-CoA). I looked up why I suddenly saw drooling in her again. B1 isn't supposed to be "toxic", especially with oral supplementation. When I looked up the two neurotransmitters that B1 primarily makes: acetylcholine and GABA. Acetylcholine is an excitatory neurotransmitter. GABA is an inhibitory one. If the supply of B1 increases, and the body thinks it does not need acetylcholine (it could be that the receptors -- choline acetyltransferase -- are binding to mercury and cannot bind to acetylcholine) or there could have been a B2 deficiency long enough where it shut down the mito function to produce Acetyl-CoA (which is needed to make acetylcholine -- at which time to re-start this pathway, you'll need to jumpstart it with ALCAR). Whatever the reason, when more resources for either of these two pathways become more available but one of the pathways is shut down, then it will produce more of the neurotransmitter where the pathway isn't blocked...in my daughter's case, it was GABA. With too much inhibitory neurotransmitters going around, a lot of neurons are locked in the "off" (inhibitory) state and don't fire messages between the mouth and the brain. One of the symptoms of GABA toxicity is numbness around the mouth. I would start ALCAR to eliminate the excessive drooling problem. It has worked for both of my kids. (eliminating soy also worked for my daughter...but when the problem was triggered by B1 -- and it's not that she doesn't need B1 -- she does need B1 but it's just not properly channeled on its own and needs some carnitine support and chelation to remove the mercury -- and when B1 is improperly channeled, it sometimes can make too much inhibitory neurotransmitter -- GABA). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 Definitely, Isabel! If you even want to comment on the list, that would be ok with me, too. Heavens knows, I've learned so much from the conversations that people have on list too. I so love all the biomed parents on these lists, I've learned more than I've ever learned in my life. > Alberta, > My daughter has problems related Acetyl- CoA. > She was suspected to have deficit ( acetoacetyl CoA thiolasa > mitocondrial deficit ) but we did a fibroblast study and it was normal , so > my doctor rule out this pathology but my daughter still has problems with > ketosis and hyper and hypo glycemias . > Can i email you offlist to comment it ?? > Could you help me to u derstand more about the relation between > neurotransmitters and this issue ?? > Thank you. > Isabel > > Enviado desde mi iPad > > El 18/03/2012, a las 07:47, Alberta escribió: > >> I think I know the answer to this question. >> >> Try upping their B1 and see if it gets worse. If so, I'd look at GABA >> toxicity. >> >> I saw a re-emergence of this recently with Maia when I upped her >> benfotiamine. The pathway to make acetylcholine has been >> " short-circuited " (because of issues with not being able to produce >> Acetyl-CoA). >> >> I looked up why I suddenly saw drooling in her again. B1 isn't >> supposed to be " toxic " , especially with oral supplementation. When I >> looked up the two neurotransmitters that B1 primarily makes: >> acetylcholine and GABA. Acetylcholine is an excitatory >> neurotransmitter. GABA is an inhibitory one. If the supply of B1 >> increases, and the body thinks it does not need acetylcholine (it >> could be that the receptors -- choline acetyltransferase -- are >> binding to mercury and cannot bind to acetylcholine) or there could >> have been a B2 deficiency long enough where it shut down the mito >> function to produce Acetyl-CoA (which is needed to make acetylcholine >> -- at which time to re-start this pathway, you'll need to jumpstart it >> with ALCAR). Whatever the reason, when more resources for either of >> these two pathways become more available but one of the pathways is >> shut down, then it will produce more of the neurotransmitter where the >> pathway isn't blocked...in my daughter's case, it was GABA. >> >> With too much inhibitory neurotransmitters going around, a lot of >> neurons are locked in the " off " (inhibitory) state and don't fire >> messages between the mouth and the brain. One of the symptoms of GABA >> toxicity is numbness around the mouth. >> >> I would start ALCAR to eliminate the excessive drooling problem. It >> has worked for both of my kids. (eliminating soy also worked for my >> daughter...but when the problem was triggered by B1 -- and it's not >> that she doesn't need B1 -- she does need B1 but it's just not >> properly channeled on its own and needs some carnitine support and >> chelation to remove the mercury -- and when B1 is improperly >> channeled, it sometimes can make too much inhibitory neurotransmitter >> -- GABA). >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2012 Report Share Posted March 18, 2012 what kinds of doctors do all these incredible tests on your kids? thank u for all your suggestions. Sent from Yahoo! Mail on Android From: Alberta ; To: <mb12valtrex >; Subject: Re: hands in mouth Sent: Mon, Mar 19, 2012 12:18:26 AM Definitely, Isabel! If you even want to comment on the list, that would be ok with me, too. Heavens knows, I've learned so much from the conversations that people have on list too. I so love all the biomed parents on these lists, I've learned more than I've ever learned in my life. > Alberta, > My daughter has problems related Acetyl- CoA. > She was suspected to have deficit ( acetoacetyl CoA thiolasa > mitocondrial deficit ) but we did a fibroblast study and it was normal , so > my doctor rule out this pathology but my daughter still has problems with > ketosis and hyper and hypo glycemias . > Can i email you offlist to comment it ?? > Could you help me to u derstand more about the relation between > neurotransmitters and this issue ?? > Thank you. > Isabel > > Enviado desde mi iPad > > El 18/03/2012, a las 07:47, Alberta escribió: > >> I think I know the answer to this question. >> >> Try upping their B1 and see if it gets worse. If so, I'd look at GABA >> toxicity. >> >> I saw a re-emergence of this recently with Maia when I upped her >> benfotiamine. The pathway to make acetylcholine has been >> " short-circuited " (because of issues with not being able to produce >> Acetyl-CoA). >> >> I looked up why I suddenly saw drooling in her again. B1 isn't >> supposed to be " toxic " , especially with oral supplementation. When I >> looked up the two neurotransmitters that B1 primarily makes: >> acetylcholine and GABA. Acetylcholine is an excitatory >> neurotransmitter. GABA is an inhibitory one. If the supply of B1 >> increases, and the body thinks it does not need acetylcholine (it >> could be that the receptors -- choline acetyltransferase -- are >> binding to mercury and cannot bind to acetylcholine) or there could >> have been a B2 deficiency long enough where it shut down the mito >> function to produce Acetyl-CoA (which is needed to make acetylcholine >> -- at which time to re-start this pathway, you'll need to jumpstart it >> with ALCAR). Whatever the reason, when more resources for either of >> these two pathways become more available but one of the pathways is >> shut down, then it will produce more of the neurotransmitter where the >> pathway isn't blocked...in my daughter's case, it was GABA. >> >> With too much inhibitory neurotransmitters going around, a lot of >> neurons are locked in the " off " (inhibitory) state and don't fire >> messages between the mouth and the brain. One of the symptoms of GABA >> toxicity is numbness around the mouth. >> >> I would start ALCAR to eliminate the excessive drooling problem. It >> has worked for both of my kids. (eliminating soy also worked for my >> daughter...but when the problem was triggered by B1 -- and it's not >> that she doesn't need B1 -- she does need B1 but it's just not >> properly channeled on its own and needs some carnitine support and >> chelation to remove the mercury -- and when B1 is improperly >> channeled, it sometimes can make too much inhibitory neurotransmitter >> -- GABA). >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 In our case it was our endocronologist .A year ago , we tried a cetogemic diet with my daughter . After 28 hours on this diet ( without any carb ) my daughter was letargic and very bad look. We went quickly to the hospital and was with 325 glucose and almost 5 of ketone in blood .Inmediatly ,They give my daughter only phisiolgical serum and in a few minutes the girl was recovered .It was so surprising for all the doctor at hospital that they started doing several test to study mitochondrial issues . But everything seemed to be ok , or at least ok for the disseases they suspected.My daughter cant be more than 6-8 hours without eating a litlle amount of carbs , because she tends to have hypoglycemia . When she has very low sugar in blood , then she started to do ketone and at the same time her glucose level begins to rise too. And very rapidly...We tried high doses of acetyl l carnitine , but it didnt work . no improvements. My daughter becomes very excited with all kind of aminos , with carnitine too.the only recomendation they gave us is giving at midnight some food with carb or starch , and going to hospital when she would have vomiting , diarrhea or fever to put serum "in blood".I was very impresed when i have read what Alberta wrote about the relationship between acetyl CoA and eurotransmittiers , because my daughter has also problems with it.When she get excited for any reason ( for example when she is watching tv or listening her favourite songs ...) she gets very excited . Then she starts to swing her body and having bocal stimms . She is happy , but her body start to have movements under control . And she can not control it , and it takes a lot of time to come back to normalilty .I gave her GABA everyday (750 in the morning and 750 mg at night ) , b complex and a long list of supp ,we started with b6 two mounths ago , but this problem never improve .Alberta , could you give me any advise ?I am impresed with all the knowledge you have about the chemical process and Its implications and procedures .I have not training in this subjet almost and our physicians never have seen another case similar to my daughter .Could you recomend me a link where i could have information about it ? Could you help me to find where could be the "fault" in my daughter metabolism and Trying to solve it ? I would be deeply grateful , Alberta .Enviado desde mi iPadEl 19/03/2012, a las 05:37, Yarkoni escribió: what kinds of doctors do all these incredible tests on your kids? thank u for all your suggestions. Sent from Yahoo! Mail on Android From: Alberta ; To: <mb12valtrex >; Subject: Re: hands in mouth Sent: Mon, Mar 19, 2012 12:18:26 AM Definitely, Isabel! If you even want to comment on the list, that would be ok with me, too. Heavens knows, I've learned so much from the conversations that people have on list too. I so love all the biomed parents on these lists, I've learned more than I've ever learned in my life. > Alberta, > My daughter has problems related Acetyl- CoA. > She was suspected to have deficit ( acetoacetyl CoA thiolasa > mitocondrial deficit ) but we did a fibroblast study and it was normal , so > my doctor rule out this pathology but my daughter still has problems with > ketosis and hyper and hypo glycemias . > Can i email you offlist to comment it ?? > Could you help me to u derstand more about the relation between > neurotransmitters and this issue ?? > Thank you. > Isabel > > Enviado desde mi iPad > > El 18/03/2012, a las 07:47, Alberta escribió: > >> I think I know the answer to this question. >> >> Try upping their B1 and see if it gets worse. If so, I'd look at GABA >> toxicity. >> >> I saw a re-emergence of this recently with Maia when I upped her >> benfotiamine. The pathway to make acetylcholine has been >> "short-circuited" (because of issues with not being able to produce >> Acetyl-CoA). >> >> I looked up why I suddenly saw drooling in her again. B1 isn't >> supposed to be "toxic", especially with oral supplementation. When I >> looked up the two neurotransmitters that B1 primarily makes: >> acetylcholine and GABA. Acetylcholine is an excitatory >> neurotransmitter. GABA is an inhibitory one. If the supply of B1 >> increases, and the body thinks it does not need acetylcholine (it >> could be that the receptors -- choline acetyltransferase -- are >> binding to mercury and cannot bind to acetylcholine) or there could >> have been a B2 deficiency long enough where it shut down the mito >> function to produce Acetyl-CoA (which is needed to make acetylcholine >> -- at which time to re-start this pathway, you'll need to jumpstart it >> with ALCAR). Whatever the reason, when more resources for either of >> these two pathways become more available but one of the pathways is >> shut down, then it will produce more of the neurotransmitter where the >> pathway isn't blocked...in my daughter's case, it was GABA. >> >> With too much inhibitory neurotransmitters going around, a lot of >> neurons are locked in the "off" (inhibitory) state and don't fire >> messages between the mouth and the brain. One of the symptoms of GABA >> toxicity is numbness around the mouth. >> >> I would start ALCAR to eliminate the excessive drooling problem. It >> has worked for both of my kids. (eliminating soy also worked for my >> daughter...but when the problem was triggered by B1 -- and it's not >> that she doesn't need B1 -- she does need B1 but it's just not >> properly channeled on its own and needs some carnitine support and >> chelation to remove the mercury -- and when B1 is improperly >> channeled, it sometimes can make too much inhibitory neurotransmitter >> -- GABA). >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 It was pretty easy to find out what neurotransmitters B1 makes on wikipedia. Here was the article I read and I found out that a prolonged riboflavin deficiency can result in dysfunctions with making acetyl-CoA, which then affects the choline pathways. I also found out from here that my daughter's underlying riboflavin deficiency (or inability to convert riboflavin into a form she can use) is a potential underlying cause of her mito dysfunction and that even if I make up for the riboflavin deficiency now, I still need to jumpstart the mito function with ALCAR. http://www.nrcresearchpress.com/doi/abs/10.1139/y97-078 The first thing I observed firsthand with my daughter was that as soon as I increased benfotiamine, her apraxia symptoms got worse - and this definitely something that shouldn't have happened. I found it more helpful to " reverse think " about everything to do with treating autism to thinking about how any given diet or supplement relates to neurotransmitters. I think that any effect we see on our kids are all effects of fluctuating neurotransmitter levels. Think about it -- when they visual stim, what is that -- why? Because of neurotransmitters that interface with the visual parts of the brain. When they have sound sensitivities -- why? Neurotransmitters that affect the auditory parts of the brain. Neurotransmitters are how animals communicate things to and from the senses to the brain. They turn the messages on and off in the synapse (the place between neurons) -- other living things have neurotransmitters, too, but they don't necessarily communicate things to a " brain " . Ever wonder why some of our kids don't feel pain? Not enough excitatory neurotransmitters to quickly carry the " pain " message to the brain or too much inhibitory neurotransmitters that leave the neurons in the " off " position and not firing messages between neurons (looking back, I think this is the case with my daughter). I'm not certain why your daughter needs the carbs that badly. My son is a little bit the same way -- although he doesn't need to be hospitalized or anything -- but he goes absolutely apesh*t the moment he gets hungry...or, more that he used to. We've put him on a few supplements lately (b-complex, carnitine, taurine, Vit C, zinc) but he gets antsy without carbs. He definitely has some mito dysfunction, too, but we just found out lately that he has slightly elevated lead in his blood from recent lead exposure (which means that he may have been exposed to it for some time and the levels are only " slightly " elevated in his blood because the rest of the accumulation has settled into his bones). He isn't as tall as he should be and I've been noticing that although his movements now are closer to that of his peers than before, they're still not quite at age-appropriate levels -- don't know how to describe it...his movements just look immature with his lack of steadiness. I honestly think that both my kids have different types of mito dysfunction (different than a mito " disease " ) -- I think of mito dysfunction as a type of impairment at the mitochondrial level whereas a mito disease involves enzymes that are unable to be made at all because of something that's missing at the genetic level. That's just how I look at it, though. I'm not sure how the medical community defines it. But it sounds like your daughter might have some kind of mito impairment, which is why maybe the mito docs can't find anything " wrong " . From what you're describing, it sounds like she has the opposite problem that my daughter has -- that maybe she's making too much acetylcholine and not enough GABA and that's why you see her responding to GABA supplementation? I'd say to increase B1 to see the effect, but if she's producing to much acetylcholine and not enough GABA, that might not be a great thing to try because it could backfire, leaving her with pretty bad excitotoxicity. I don't know what to make of her response to the no carb diet. That's not something that should happen after 28 hours of no carbs if the human body is functioning normally. I think that's a pretty big clue there and I think I would start there and work my way back. Pay special attention to anything on those pathways that can affect neurotransmitters. I would maybe also look the GABA pathways and start looking there for bottlenecks. I would also look at your GABA receptors and see how they work. I'll bet that some kind of heavy metal toxicity affects the functioning of GABA receptors. I know mercury affects the functioning of the acetylcholine receptors. I think most heavy metals will interfere with the functioning of the receptors of any neurotransmitters. I won't pretend to be an expert on it...I only found out about this recently and I'm still trying to understand it. It's really fascinating when you look at biomed from the neurotransmitter standpoint. I been mainly looking at the choline part of it and I haven't had a chance yet to look into how GABA works (and more details about how all receptors and neurotransmitters work) and I still don't fully understand it all yet. Are you chelating yet? IMHO, for my kids, I think I can make " bandaids " with supplements, but I'm only going to get so far as long as the heavy metals are still inside my kids. I'm not bold enough to make the " chelate chelate chelate " statement for all kids with ASD, but I'm beginning to see that it does apply to my kids and at the same time, I need to fix the underlying causes of their mito dysfunction. I need to get the heavy metals out and I need to jumpstart my kids' mito functions and I really need to do all of it at the same time. > > In our case it was our endocronologist . > A year ago , we tried a cetogemic diet with my daughter . After 28 hours on > this diet ( without any carb ) my daughter was letargic and very bad look. > We went quickly to the hospital and was with 325 glucose and almost 5 of > ketone in blood . > Inmediatly ,They give my daughter only phisiolgical serum and in a few > minutes the girl was recovered . > It was so surprising for all the doctor at hospital that they started doing > several test to study mitochondrial issues . But everything seemed to be ok > , or at least ok for the disseases they suspected. > My daughter cant be more than 6-8 hours without eating a litlle amount of > carbs , because she tends to have hypoglycemia . When she has very low sugar > in blood , then she started to do ketone and at the same time her glucose > level begins to rise too. And very rapidly... > We tried high doses of acetyl l carnitine , but it didnt work . no > improvements. My daughter becomes very excited with all kind of aminos , > with carnitine too. > the only recomendation they gave us is giving at midnight some food with > carb or starch , and going to hospital when she would have vomiting , > diarrhea or fever to put serum " in blood " . > I was very impresed when i have read what Alberta wrote about the > relationship between acetyl CoA and eurotransmittiers , because my daughter > has also problems with it. > When she get excited for any reason ( for example when she is watching tv or > listening her favourite songs ...) she gets very excited . Then she starts > to swing her body and having bocal stimms . She is happy , but her body > start to have movements under control . And she can not control it , and it > takes a lot of time to come back to normalilty . > I gave her GABA everyday (750 in the morning and 750 mg at night ) , b > complex and a long list of supp ,we started with b6 two mounths ago , but > this problem never improve . > Alberta , could you give me any advise ? > I am impresed with all the knowledge you have about the chemical process and > Its implications and procedures .I have not training in this subjet almost > and our physicians never have seen another case similar to my daughter . > Could you recomend me a link where i could have information about it ? > Could you help me to find where could be the " fault " in my daughter > metabolism and Trying to solve it ? > I would be deeply grateful , Alberta . > > > > > > Enviado desde mi iPad > > El 19/03/2012, a las 05:37, Yarkoni > escribió: > >> what kinds of doctors do all these incredible tests on your kids? thank u >> for all your suggestions. >> >> >> >> Sent from Yahoo! Mail on Android >> >> >> ; >> To: <mb12valtrex >; >> Subject: Re: hands in mouth >> Sent: Mon, Mar 19, 2012 12:18:26 AM >> >> >> Definitely, Isabel! If you even want to comment on the list, that >> would be ok with me, too. Heavens knows, I've learned so much from >> the conversations that people have on list too. I so love all the >> biomed parents on these lists, I've learned more than I've ever >> learned in my life. >> >> >> > Alberta, >> > My daughter has problems related Acetyl- CoA. >> > She was suspected to have deficit ( acetoacetyl CoA thiolasa >> > mitocondrial deficit ) but we did a fibroblast study and it was normal , >> > so >> > my doctor rule out this pathology but my daughter still has problems >> > with >> > ketosis and hyper and hypo glycemias . >> > Can i email you offlist to comment it ?? >> > Could you help me to u derstand more about the relation between >> > neurotransmitters and this issue ?? >> > Thank you. >> > Isabel >> > >> > Enviado desde mi iPad >> > >> > El 18/03/2012, a las 07:47, Alberta escribió: >> > >> >> I think I know the answer to this question. >> >> >> >> Try upping their B1 and see if it gets worse. If so, I'd look at GABA >> >> toxicity. >> >> >> >> I saw a re-emergence of this recently with Maia when I upped her >> >> benfotiamine. The pathway to make acetylcholine has been >> >> " short-circuited " (because of issues with not being able to produce >> >> Acetyl-CoA). >> >> >> >> I looked up why I suddenly saw drooling in her again. B1 isn't >> >> supposed to be " toxic " , especially with oral supplementation. When I >> >> looked up the two neurotransmitters that B1 primarily makes: >> >> acetylcholine and GABA. Acetylcholine is an excitatory >> >> neurotransmitter. GABA is an inhibitory one. If the supply of B1 >> >> increases, and the body thinks it does not need acetylcholine (it >> >> could be that the receptors -- choline acetyltransferase -- are >> >> binding to mercury and cannot bind to acetylcholine) or there could >> >> have been a B2 deficiency long enough where it shut down the mito >> >> function to produce Acetyl-CoA (which is needed to make acetylcholine >> >> -- at which time to re-start this pathway, you'll need to jumpstart it >> >> with ALCAR). Whatever the reason, when more resources for either of >> >> these two pathways become more available but one of the pathways is >> >> shut down, then it will produce more of the neurotransmitter where the >> >> pathway isn't blocked...in my daughter's case, it was GABA. >> >> >> >> With too much inhibitory neurotransmitters going around, a lot of >> >> neurons are locked in the " off " (inhibitory) state and don't fire >> >> messages between the mouth and the brain. One of the symptoms of GABA >> >> toxicity is numbness around the mouth. >> >> >> >> I would start ALCAR to eliminate the excessive drooling problem. It >> >> has worked for both of my kids. (eliminating soy also worked for my >> >> daughter...but when the problem was triggered by B1 -- and it's not >> >> that she doesn't need B1 -- she does need B1 but it's just not >> >> properly channeled on its own and needs some carnitine support and >> >> chelation to remove the mercury -- and when B1 is improperly >> >> channeled, it sometimes can make too much inhibitory neurotransmitter >> >> -- GABA). >> >> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2012 Report Share Posted March 19, 2012 My daughter has one filling and two stainless steel caps - I am also the one who wrote about my daughter's chronic use of her hands in her mouth. If I am to assume that the metal in her mouth is also causing problems then the correct approach would be to take the metal out. The dentists however are saying it may do more damage than good. I have found a dentist in israel where i live who is working on some new technology that is still in its trial phases that enables you to replace caps/fillings with a totally non metal solution. Not only will i need to put my daughter to sleep to perform the operation but will also put her at risk with more mercury exposure. What do you think about this? Should I push forward? To: mb12valtrex Sent: Monday, March 19, 2012 12:49 PMSubject: Re: hands in mouth It was pretty easy to find out what neurotransmitters B1 makes on wikipedia.Here was the article I read and I found out that a prolongedriboflavin deficiency can result in dysfunctions with makingacetyl-CoA, which then affects the choline pathways. I also found outfrom here that my daughter's underlying riboflavin deficiency (orinability to convert riboflavin into a form she can use) is apotential underlying cause of her mito dysfunction and that even if Imake up for the riboflavin deficiency now, I still need to jumpstartthe mito function with ALCAR.http://www.nrcresearchpress.com/doi/abs/10.1139/y97-078The first thing I observed firsthand with my daughter was that as soonas I increased benfotiamine, her apraxia symptoms got worse - and thisdefinitely something that shouldn't have happened.I found it more helpful to "reverse think" about everything to do withtreating autism to thinking about how any given diet or supplementrelates to neurotransmitters. I think that any effect we see on ourkids are all effects of fluctuating neurotransmitter levels. Thinkabout it -- when they visual stim, what is that -- why? Because ofneurotransmitters that interface with the visual parts of the brain.When they have sound sensitivities -- why? Neurotransmitters thataffect the auditory parts of the brain. Neurotransmitters are howanimals communicate things to and from the senses to the brain. Theyturn the messages on and off in the synapse (the place betweenneurons) -- other living things have neurotransmitters, too, but theydon't necessarily communicate things to a "brain". Ever wonder whysome of our kids don't feel pain? Not enough excitatoryneurotransmitters to quickly carry the "pain" message to the brain ortoo much inhibitory neurotransmitters that leave the neurons in the"off" position and not firing messages between neurons (looking back,I think this is the case with my daughter).I'm not certain why your daughter needs the carbs that badly. My sonis a little bit the same way -- although he doesn't need to behospitalized or anything -- but he goes absolutely apesh*t the momenthe gets hungry...or, more that he used to. We've put him on a fewsupplements lately (b-complex, carnitine, taurine, Vit C, zinc) but hegets antsy without carbs. He definitely has some mito dysfunction,too, but we just found out lately that he has slightly elevated leadin his blood from recent lead exposure (which means that he may havebeen exposed to it for some time and the levels are only "slightly"elevated in his blood because the rest of the accumulation has settledinto his bones). He isn't as tall as he should be and I've beennoticing that although his movements now are closer to that of hispeers than before, they're still not quite at age-appropriate levels-- don't know how to describe it...his movements just look immaturewith his lack of steadiness. I honestly think that both my kids havedifferent types of mito dysfunction (different than a mito "disease")-- I think of mito dysfunction as a type of impairment at themitochondrial level whereas a mito disease involves enzymes that areunable to be made at all because of something that's missing at thegenetic level. That's just how I look at it, though. I'm not surehow the medical community defines it. But it sounds like yourdaughter might have some kind of mito impairment, which is why maybethe mito docs can't find anything "wrong".From what you're describing, it sounds like she has the oppositeproblem that my daughter has -- that maybe she's making too muchacetylcholine and not enough GABA and that's why you see herresponding to GABA supplementation? I'd say to increase B1 to see theeffect, but if she's producing to much acetylcholine and not enoughGABA, that might not be a great thing to try because it couldbackfire, leaving her with pretty bad excitotoxicity.I don't know what to make of her response to the no carb diet. That'snot something that should happen after 28 hours of no carbs if thehuman body is functioning normally. I think that's a pretty big cluethere and I think I would start there and work my way back. Payspecial attention to anything on those pathways that can affectneurotransmitters. I would maybe also look the GABA pathways andstart looking there for bottlenecks. I would also look at your GABAreceptors and see how they work. I'll bet that some kind of heavymetal toxicity affects the functioning of GABA receptors. I knowmercury affects the functioning of the acetylcholine receptors. Ithink most heavy metals will interfere with the functioning of thereceptors of any neurotransmitters.I won't pretend to be an expert on it...I only found out about thisrecently and I'm still trying to understand it. It's reallyfascinating when you look at biomed from the neurotransmitterstandpoint. I been mainly looking at the choline part of it and Ihaven't had a chance yet to look into how GABA works (and more detailsabout how all receptors and neurotransmitters work) and I still don'tfully understand it all yet.Are you chelating yet? IMHO, for my kids, I think I can make"bandaids" with supplements, but I'm only going to get so far as longas the heavy metals are still inside my kids. I'm not bold enough tomake the "chelate chelate chelate" statement for all kids with ASD,but I'm beginning to see that it does apply to my kids and at the sametime, I need to fix the underlying causes of their mito dysfunction.I need to get the heavy metals out and I need to jumpstart my kids'mito functions and I really need to do all of it at the same time.>> In our case it was our endocronologist .> A year ago , we tried a cetogemic diet with my daughter . After 28 hours on> this diet ( without any carb ) my daughter was letargic and very bad look.> We went quickly to the hospital and was with 325 glucose and almost 5 of> ketone in blood .> Inmediatly ,They give my daughter only phisiolgical serum and in a few> minutes the girl was recovered .> It was so surprising for all the doctor at hospital that they started doing> several test to study mitochondrial issues . But everything seemed to be ok> , or at least ok for the disseases they suspected.> My daughter cant be more than 6-8 hours without eating a litlle amount of> carbs , because she tends to have hypoglycemia . When she has very low sugar> in blood , then she started to do ketone and at the same time her glucose> level begins to rise too. And very rapidly...> We tried high doses of acetyl l carnitine , but it didnt work . no> improvements. My daughter becomes very excited with all kind of aminos ,> with carnitine too.> the only recomendation they gave us is giving at midnight some food with> carb or starch , and going to hospital when she would have vomiting ,> diarrhea or fever to put serum "in blood".> I was very impresed when i have read what Alberta wrote about the> relationship between acetyl CoA and eurotransmittiers , because my daughter> has also problems with it.> When she get excited for any reason ( for example when she is watching tv or> listening her favourite songs ...) she gets very excited . Then she starts> to swing her body and having bocal stimms . She is happy , but her body> start to have movements under control . And she can not control it , and it> takes a lot of time to come back to normalilty .> I gave her GABA everyday (750 in the morning and 750 mg at night ) , b> complex and a long list of supp ,we started with b6 two mounths ago , but> this problem never improve .> Alberta , could you give me any advise ?> I am impresed with all the knowledge you have about the chemical process and> Its implications and procedures .I have not training in this subjet almost> and our physicians never have seen another case similar to my daughter .> Could you recomend me a link where i could have information about it ?> Could you help me to find where could be the "fault" in my daughter> metabolism and Trying to solve it ?> I would be deeply grateful , Alberta .>>>>>> Enviado desde mi iPad>> El 19/03/2012, a las 05:37, Yarkoni > escribió:>>> what kinds of doctors do all these incredible tests on your kids? thank u>> for all your suggestions.>>>>>>>> Sent from Yahoo! Mail on Android>>>>>> ;>> To: <mb12valtrex >;>> Subject: Re: hands in mouth>> Sent: Mon, Mar 19, 2012 12:18:26 AM>>>>>> Definitely, Isabel! If you even want to comment on the list, that>> would be ok with me, too. Heavens knows, I've learned so much from>> the conversations that people have on list too. I so love all the>> biomed parents on these lists, I've learned more than I've ever>> learned in my life.>>>> >> > Alberta,>> > My daughter has problems related Acetyl- CoA.>> > She was suspected to have deficit ( acetoacetyl CoA thiolasa>> > mitocondrial deficit ) but we did a fibroblast study and it was normal ,>> > so>> > my doctor rule out this pathology but my daughter still has problems>> > with>> > ketosis and hyper and hypo glycemias .>> > Can i email you offlist to comment it ??>> > Could you help me to u derstand more about the relation between>> > neurotransmitters and this issue ??>> > Thank you.>> > Isabel>> >>> > Enviado desde mi iPad>> >>> > El 18/03/2012, a las 07:47, Alberta escribió:>> >>> >> I think I know the answer to this question.>> >>>> >> Try upping their B1 and see if it gets worse. If so, I'd look at GABA>> >> toxicity.>> >>>> >> I saw a re-emergence of this recently with Maia when I upped her>> >> benfotiamine. The pathway to make acetylcholine has been>> >> "short-circuited" (because of issues with not being able to produce>> >> Acetyl-CoA).>> >>>> >> I looked up why I suddenly saw drooling in her again. B1 isn't>> >> supposed to be "toxic", especially with oral supplementation. When I>> >> looked up the two neurotransmitters that B1 primarily makes:>> >> acetylcholine and GABA. Acetylcholine is an excitatory>> >> neurotransmitter. GABA is an inhibitory one. If the supply of B1>> >> increases, and the body thinks it does not need acetylcholine (it>> >> could be that the receptors -- choline acetyltransferase -- are>> >> binding to mercury and cannot bind to acetylcholine) or there could>> >> have been a B2 deficiency long enough where it shut down the mito>> >> function to produce Acetyl-CoA (which is needed to make acetylcholine>> >> -- at which time to re-start this pathway, you'll need to jumpstart it>> >> with ALCAR). Whatever the reason, when more resources for either of>> >> these two pathways become more available but one of the pathways is>> >> shut down, then it will produce more of the neurotransmitter where the>> >> pathway isn't blocked...in my daughter's case, it was GABA.>> >>>> >> With too much inhibitory neurotransmitters going around, a lot of>> >> neurons are locked in the "off" (inhibitory) state and don't fire>> >> messages between the mouth and the brain. One of the symptoms of GABA>> >> toxicity is numbness around the mouth.>> >>>> >> I would start ALCAR to eliminate the excessive drooling problem. It>> >> has worked for both of my kids. (eliminating soy also worked for my>> >> daughter...but when the problem was triggered by B1 -- and it's not>> >> that she doesn't need B1 -- she does need B1 but it's just not>> >> properly channeled on its own and needs some carnitine support and>> >> chelation to remove the mercury -- and when B1 is improperly>> >> channeled, it sometimes can make too much inhibitory neurotransmitter>> >> -- GABA).>> >>>> >>>>abo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2012 Report Share Posted March 22, 2012 Thank you very much for your kindy answer , Alberta .Very interesting .I apreciate very much all the information and advises you give me !!!There is a lot of information in all you explain .Do you think would be a good idea making a neurotransmitters urine test ??I would like to do it , but it could be difficult for my daughter because it is necessary to do it with fasting of 12 hours , and we have problems with more than 6-7 hours fasting...Thans again , this group is always a great help for me .isabelEnviado desde mi iPadEl 19/03/2012, a las 11:49, Alberta escribió: It was pretty easy to find out what neurotransmitters B1 makes on wikipedia. Here was the article I read and I found out that a prolonged riboflavin deficiency can result in dysfunctions with making acetyl-CoA, which then affects the choline pathways. I also found out from here that my daughter's underlying riboflavin deficiency (or inability to convert riboflavin into a form she can use) is a potential underlying cause of her mito dysfunction and that even if I make up for the riboflavin deficiency now, I still need to jumpstart the mito function with ALCAR. http://www.nrcresearchpress.com/doi/abs/10.1139/y97-078 The first thing I observed firsthand with my daughter was that as soon as I increased benfotiamine, her apraxia symptoms got worse - and this definitely something that shouldn't have happened. I found it more helpful to "reverse think" about everything to do with treating autism to thinking about how any given diet or supplement relates to neurotransmitters. I think that any effect we see on our kids are all effects of fluctuating neurotransmitter levels. Think about it -- when they visual stim, what is that -- why? Because of neurotransmitters that interface with the visual parts of the brain. When they have sound sensitivities -- why? Neurotransmitters that affect the auditory parts of the brain. Neurotransmitters are how animals communicate things to and from the senses to the brain. They turn the messages on and off in the synapse (the place between neurons) -- other living things have neurotransmitters, too, but they don't necessarily communicate things to a "brain". Ever wonder why some of our kids don't feel pain? Not enough excitatory neurotransmitters to quickly carry the "pain" message to the brain or too much inhibitory neurotransmitters that leave the neurons in the "off" position and not firing messages between neurons (looking back, I think this is the case with my daughter). I'm not certain why your daughter needs the carbs that badly. My son is a little bit the same way -- although he doesn't need to be hospitalized or anything -- but he goes absolutely apesh*t the moment he gets hungry...or, more that he used to. We've put him on a few supplements lately (b-complex, carnitine, taurine, Vit C, zinc) but he gets antsy without carbs. He definitely has some mito dysfunction, too, but we just found out lately that he has slightly elevated lead in his blood from recent lead exposure (which means that he may have been exposed to it for some time and the levels are only "slightly" elevated in his blood because the rest of the accumulation has settled into his bones). He isn't as tall as he should be and I've been noticing that although his movements now are closer to that of his peers than before, they're still not quite at age-appropriate levels -- don't know how to describe it...his movements just look immature with his lack of steadiness. I honestly think that both my kids have different types of mito dysfunction (different than a mito "disease") -- I think of mito dysfunction as a type of impairment at the mitochondrial level whereas a mito disease involves enzymes that are unable to be made at all because of something that's missing at the genetic level. That's just how I look at it, though. I'm not sure how the medical community defines it. But it sounds like your daughter might have some kind of mito impairment, which is why maybe the mito docs can't find anything "wrong". From what you're describing, it sounds like she has the opposite problem that my daughter has -- that maybe she's making too much acetylcholine and not enough GABA and that's why you see her responding to GABA supplementation? I'd say to increase B1 to see the effect, but if she's producing to much acetylcholine and not enough GABA, that might not be a great thing to try because it could backfire, leaving her with pretty bad excitotoxicity. I don't know what to make of her response to the no carb diet. That's not something that should happen after 28 hours of no carbs if the human body is functioning normally. I think that's a pretty big clue there and I think I would start there and work my way back. Pay special attention to anything on those pathways that can affect neurotransmitters. I would maybe also look the GABA pathways and start looking there for bottlenecks. I would also look at your GABA receptors and see how they work. I'll bet that some kind of heavy metal toxicity affects the functioning of GABA receptors. I know mercury affects the functioning of the acetylcholine receptors. I think most heavy metals will interfere with the functioning of the receptors of any neurotransmitters. I won't pretend to be an expert on it...I only found out about this recently and I'm still trying to understand it. It's really fascinating when you look at biomed from the neurotransmitter standpoint. I been mainly looking at the choline part of it and I haven't had a chance yet to look into how GABA works (and more details about how all receptors and neurotransmitters work) and I still don't fully understand it all yet. Are you chelating yet? IMHO, for my kids, I think I can make "bandaids" with supplements, but I'm only going to get so far as long as the heavy metals are still inside my kids. I'm not bold enough to make the "chelate chelate chelate" statement for all kids with ASD, but I'm beginning to see that it does apply to my kids and at the same time, I need to fix the underlying causes of their mito dysfunction. I need to get the heavy metals out and I need to jumpstart my kids' mito functions and I really need to do all of it at the same time. > > In our case it was our endocronologist . > A year ago , we tried a cetogemic diet with my daughter . After 28 hours on > this diet ( without any carb ) my daughter was letargic and very bad look. > We went quickly to the hospital and was with 325 glucose and almost 5 of > ketone in blood . > Inmediatly ,They give my daughter only phisiolgical serum and in a few > minutes the girl was recovered . > It was so surprising for all the doctor at hospital that they started doing > several test to study mitochondrial issues . But everything seemed to be ok > , or at least ok for the disseases they suspected. > My daughter cant be more than 6-8 hours without eating a litlle amount of > carbs , because she tends to have hypoglycemia . When she has very low sugar > in blood , then she started to do ketone and at the same time her glucose > level begins to rise too. And very rapidly... > We tried high doses of acetyl l carnitine , but it didnt work . no > improvements. My daughter becomes very excited with all kind of aminos , > with carnitine too. > the only recomendation they gave us is giving at midnight some food with > carb or starch , and going to hospital when she would have vomiting , > diarrhea or fever to put serum "in blood". > I was very impresed when i have read what Alberta wrote about the > relationship between acetyl CoA and eurotransmittiers , because my daughter > has also problems with it. > When she get excited for any reason ( for example when she is watching tv or > listening her favourite songs ...) she gets very excited . Then she starts > to swing her body and having bocal stimms . She is happy , but her body > start to have movements under control . And she can not control it , and it > takes a lot of time to come back to normalilty . > I gave her GABA everyday (750 in the morning and 750 mg at night ) , b > complex and a long list of supp ,we started with b6 two mounths ago , but > this problem never improve . > Alberta , could you give me any advise ? > I am impresed with all the knowledge you have about the chemical process and > Its implications and procedures .I have not training in this subjet almost > and our physicians never have seen another case similar to my daughter . > Could you recomend me a link where i could have information about it ? > Could you help me to find where could be the "fault" in my daughter > metabolism and Trying to solve it ? > I would be deeply grateful , Alberta . > > > > > > Enviado desde mi iPad > > El 19/03/2012, a las 05:37, Yarkoni > escribió: > >> what kinds of doctors do all these incredible tests on your kids? thank u >> for all your suggestions. >> >> >> >> Sent from Yahoo! Mail on Android >> >> >> ; >> To: <mb12valtrex >; >> Subject: Re: hands in mouth >> Sent: Mon, Mar 19, 2012 12:18:26 AM >> >> >> Definitely, Isabel! If you even want to comment on the list, that >> would be ok with me, too. Heavens knows, I've learned so much from >> the conversations that people have on list too. I so love all the >> biomed parents on these lists, I've learned more than I've ever >> learned in my life. >> >> >> > Alberta, >> > My daughter has problems related Acetyl- CoA. >> > She was suspected to have deficit ( acetoacetyl CoA thiolasa >> > mitocondrial deficit ) but we did a fibroblast study and it was normal , >> > so >> > my doctor rule out this pathology but my daughter still has problems >> > with >> > ketosis and hyper and hypo glycemias . >> > Can i email you offlist to comment it ?? >> > Could you help me to u derstand more about the relation between >> > neurotransmitters and this issue ?? >> > Thank you. >> > Isabel >> > >> > Enviado desde mi iPad >> > >> > El 18/03/2012, a las 07:47, Alberta escribió: >> > >> >> I think I know the answer to this question. >> >> >> >> Try upping their B1 and see if it gets worse. If so, I'd look at GABA >> >> toxicity. >> >> >> >> I saw a re-emergence of this recently with Maia when I upped her >> >> benfotiamine. The pathway to make acetylcholine has been >> >> "short-circuited" (because of issues with not being able to produce >> >> Acetyl-CoA). >> >> >> >> I looked up why I suddenly saw drooling in her again. B1 isn't >> >> supposed to be "toxic", especially with oral supplementation. When I >> >> looked up the two neurotransmitters that B1 primarily makes: >> >> acetylcholine and GABA. Acetylcholine is an excitatory >> >> neurotransmitter. GABA is an inhibitory one. If the supply of B1 >> >> increases, and the body thinks it does not need acetylcholine (it >> >> could be that the receptors -- choline acetyltransferase -- are >> >> binding to mercury and cannot bind to acetylcholine) or there could >> >> have been a B2 deficiency long enough where it shut down the mito >> >> function to produce Acetyl-CoA (which is needed to make acetylcholine >> >> -- at which time to re-start this pathway, you'll need to jumpstart it >> >> with ALCAR). Whatever the reason, when more resources for either of >> >> these two pathways become more available but one of the pathways is >> >> shut down, then it will produce more of the neurotransmitter where the >> >> pathway isn't blocked...in my daughter's case, it was GABA. >> >> >> >> With too much inhibitory neurotransmitters going around, a lot of >> >> neurons are locked in the "off" (inhibitory) state and don't fire >> >> messages between the mouth and the brain. One of the symptoms of GABA >> >> toxicity is numbness around the mouth. >> >> >> >> I would start ALCAR to eliminate the excessive drooling problem. It >> >> has worked for both of my kids. (eliminating soy also worked for my >> >> daughter...but when the problem was triggered by B1 -- and it's not >> >> that she doesn't need B1 -- she does need B1 but it's just not >> >> properly channeled on its own and needs some carnitine support and >> >> chelation to remove the mercury -- and when B1 is improperly >> >> channeled, it sometimes can make too much inhibitory neurotransmitter >> >> -- GABA). >> >> >> > >> > = Quote Link to comment Share on other sites More sharing options...
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