Guest guest Posted November 28, 2005 Report Share Posted November 28, 2005 hope he is better soon hugs, maria mom to tim 10 ChARGE, keegan 7, liam 5 wife topat > Hi all, > Just a note to let all know that went into the > hospital last night and has pneumonia. He had been > sick since Thanksgiving and was not getting better. > Last night his temp reached 102.5 so we took him in to > Primary Childrens and the resident who saw him had > worked with him before so she was familiar with his > history which is nice not to have to explain him over > and over. Anyway she said his chest x-ray looked much > worse than normal. He is in room 3024. So I will keep > all updated as to how he is doing and when he gets > out. > a mom to 8yr CHARGEr and Quintin 5yr > > > > __________________________________ > Yahoo! Music Unlimited > Access over 1 million songs. Try it free. > http://music.yahoo.com/unlimited/ > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 I hear ya . It can be SO frustrating. The leaky gut thing seems to make sense as far as nutrition leaving them so quickly. I guess the hope is that the gut will heal eventually with diet/supps and then things will be better overall? I'm still learning about all of this (and god, has it been a learning process). Just when I think I understand, and things seem to be going better, I find out something I'm giving them is no good, or shouldn't be combined with something, etc, etc. I feel your pain!That said, that is really exciting that those products had such a positive impact. Did your daughter have articulation issues that got better, or was it more the quantity of speech that improved? My daughter has artic issues and immature speech patterns. She has plenty of words - just very hard to understand. I'm told that this has to do with brain development, lack of nutrients, fats, etc getting through. Just a couple questions about Syntol/Candex - what other supps did you give at the same time? Should I stop probiotics, CLO any of that while giving them? Did you notice and changes with digestive stuff? My girls ahve been having so many digestive issues - they are sort of starting to get better. Just wondering what I'm in for there. Also, are both products 100% GFCFSF and strep-free? I will probably wait a bit until the supps they are on even them out a bit, but I'm very interested in these products Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 , have you looked into the scd diet? Its not for everyone, but it might be worth looking into. check out pecanbread.com. Basically, you start at scratch and work your way up to different foods and when you're done, you should be able to tolerate just about anything. There are people here who know alot more about it, but I thought it was worth mentioning. ugh. snow. tons of it.....blech! I just informed my husband that I will NOT do this in my old age. To: mb12 valtrex Sent: Wed, January 12, 2011 10:15:09 AMSubject: RE: I hear ya . It can be SO frustrating. The leaky gut thing seems to make sense as far as nutrition leaving them so quickly. I guess the hope is that the gut will heal eventually with diet/supps and then things will be better overall? I'm still learning about all of this (and god, has it been a learning process). Just when I think I understand, and things seem to be going better, I find out something I'm giving them is no good, or shouldn't be combined with something, etc, etc. I feel your pain!That said, that is really exciting that those products had such a positive impact. Did your daughter have articulation issues that got better, or was it more the quantity of speech that improved? My daughter has artic issues and immature speech patterns. She has plenty of words - just very hard to understand. I'm told that this has to do with brain development, lack of nutrients, fats, etc getting through. Just a couple questions about Syntol/Candex - what other supps did you give at the same time? Should I stop probiotics, CLO any of that while giving them? Did you notice and changes with digestive stuff? My girls ahve been having so many digestive issues - they are sort of starting to get better. Just wondering what I'm in for there. Also, are both products 100% GFCFSF and strep-free? I will probably wait a bit until the supps they are on even them out a bit, but I'm very interested in these products Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2011 Report Share Posted January 12, 2011 It's funny that you ask that b/c I just ordered the SCD book yesterday. It gets confusing b/c the low oxalate diet says no nuts, but that is one of the staples on SCD. My head is in a constant state of spinning these days. - Kirk-To: mb12 valtrex From: t.lynn28@...Date: Wed, 12 Jan 2011 07:38:07 -0800Subject: Re: RE: , have you looked into the scd diet? Its not for everyone, but it might be worth looking into. check out pecanbread.com. Basically, you start at scratch and work your way up to different foods and when you're done, you should be able to tolerate just about anything. There are people here who know alot more about it, but I thought it was worth mentioning. ugh. snow. tons of it.....blech! I just informed my husband that I will NOT do this in my old age. To: mb12 valtrex Sent: Wed, January 12, 2011 10:15:09 AMSubject: RE: I hear ya . It can be SO frustrating. The leaky gut thing seems to make sense as far as nutrition leaving them so quickly. I guess the hope is that the gut will heal eventually with diet/supps and then things will be better overall? I'm still learning about all of this (and god, has it been a learning process). Just when I think I understand, and things seem to be going better, I find out something I'm giving them is no good, or shouldn't be combined with something, etc, etc. I feel your pain!That said, that is really exciting that those products had such a positive impact. Did your daughter have articulation issues that got better, or was it more the quantity of speech that improved? My daughter has artic issues and immature speech patterns. She has plenty of words - just very hard to understand. I'm told that this has to do with brain development, lack of nutrients, fats, etc getting through. Just a couple questions about Syntol/Candex - what other supps did you give at the same time? Should I stop probiotics, CLO any of that while giving them? Did you notice and changes with digestive stuff? My girls ahve been having so many digestive issues - they are sort of starting to get better. Just wondering what I'm in for there. Also, are both products 100% GFCFSF and strep-free? I will probably wait a bit until the supps they are on even them out a bit, but I'm very interested in these products Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 How much diflucan do you give to your kids? and how long a trial should last? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2011 Report Share Posted February 4, 2011 oops... just read the post on transdermal LDN. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 we tried kirkmans and it did nothing, switched to food science of vemont and had 8 words in 8 hours From: l h Sent: Monday, February 07, 2011 10:03 AM To: mb12 valtrex Subject: RE: Re: dmg at Kirkmans Re:how does one get stuff retail? made the rounds yesterday, and found pharmacists hadn't even heard of LDN, DMG, syntol, lugol's iodine (( happen to be in the states, but a whirlwind trip, so can't order stuff online. stan the frustrated man Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Awesome! I'll have to try that.To: mb12 valtrex Sent: Mon, February 7, 2011 2:20:26 PMSubject: Re: Re: we tried kirkmans and it did nothing, switched to food science of vemont and had 8 words in 8 hours From: l h Sent: Monday, February 07, 2011 10:03 AM To: mb12 valtrex Subject: RE: Re: dmg at Kirkmans Re:how does one get stuff retail? made the rounds yesterday, and found pharmacists hadn't even heard of LDN, DMG, syntol, lugol's iodine (( happen to be in the states, but a whirlwind trip, so can't order stuff online. stan the frustrated man Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 you can get DMG at almost any health food store. The original company was foodscience I believe. Several companies put it out. I am also looking for lugols Iodine and several online companies offer it but I have yet to find in a local store. Thanks, Alice > > dmg at Kirkmans > Re: > > how does one get stuff retail? made the rounds yesterday, and found pharmacists > hadn't even heard of LDN, DMG, syntol, lugol's iodine (( > happen to be in the states, but a whirlwind trip, so can't order stuff online. > stan the frustrated man > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 LDN requires a prescription in the States. Pamela From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of stan batesSent: Monday, February 07, 2011 6:49 AMTo: mb12 valtrex Subject: Re: how does one get stuff retail? made the rounds yesterday, and found pharmacists hadn't even heard of LDN, DMG, syntol, lugol's iodine ((happen to be in the states, but a whirlwind trip, so can't order stuff online.stan the frustrated man Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 I found Syntol at my local Vitamin Shoppe. > > how does one get stuff retail? made the rounds yesterday, and found pharmacists > hadn't even heard of LDN, DMG, syntol, lugol's iodine (( > happen to be in the states, but a whirlwind trip, so can't order stuff online. > stan the frustrated man > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 This is the DMG that we use: http://www.fslabs.com/vitamins-supplements/aangamik-dmg-300mg-liquid.php Here is a page that tells you where you can buy it: http://www.fslabs.com/where-to-buy-vitamins.php > > > how does one get stuff retail? made the rounds yesterday, and found pharmacists hadn't even heard of LDN, DMG, syntol, lugol's iodine (( > > happen to be in the states, but a whirlwind trip, so can't order stuff online. > > stan the frustrated man > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 We had no results w/Kirkman's or Behavior Balance DMG. But, Aangamik® DMG. Whoo! Hoo! I posted a link earlier. > > we tried kirkmans and it did nothing, switched to food science of vemont and had 8 words in 8 hours > > > > From: l h > Sent: Monday, February 07, 2011 10:03 AM > To: mb12 valtrex > Subject: RE: Re: > > > > dmg at Kirkmans > Re: > > how does one get stuff retail? made the rounds yesterday, and found pharmacists > hadn't even heard of LDN, DMG, syntol, lugol's iodine (( > happen to be in the states, but a whirlwind trip, so can't order stuff online. > stan the frustrated man > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Jo,I have a viral son (I believe) who started seizures at 32 months, 2.5 weeks after DT shot (no pertussis, shot supposed to be single dosed, not sure)We have not done anti-seizure meds because in 2 years, he has had 6 major seizure episodes (I guess these are grand mal? foaming and convulsions) all with fevers, and a handful of absence issues. So it didn't seem to me to be severe enough to put him on meds. We do GABA, magnesium, other biomed stuff.We are drawing the NIDS proposed blood work thru a DAN doctor.We decided to try homeopathy before moving onto anti-virals. We've been doing homeopathy about 2.5 weeks. I would try to find an in-network open-minded doctor who might run the NIDS bloodwork for you. Then, you can look for a DAN or someone who will prescribe anti-virals for your child. Also, have you looked at the keto diet for seizures? Â Hi all! I have decided to get rid of the viruses in my son. I have some decisions to make though and I need some help. I know I don't know any of you on this group, other than popping on once in awhile, but this is something you have all been working on. I found dr goldberg yesterday and ended up here. I did research and read good and bad things about the dr. So I think I have 3 choices: See if my family dr will work with me, but still I will probably be going it somewhat alone as far as dosing goes, etc... although I know some of you would be able to help with that. He may not even be willing. Find a DAN, there goes alot of money again I am thinking. Been to 2 in my state so far. Go see dr goldberg. Let me tell you a brief history about my son though. The most important thing is his arachnoid cyst on his left temporal lobe. We have been thinking, quite a few years have gone by and we should see if it has grown. We have had 2 surgeons from 2 major hospitals say it was too small to be causing his seizures and didn't need surgery. Of course meds weren't helping the seizures either. Dr goldberg would be able to address this for us. I simply do not want to see a main steam neuro again, it was a nightmare. They tried 19 different anti seizure meds and at one point he was on 3 different ones, totaling 17 pills a day. He was a mass of bruises and his hair was falling out. His eeg was also showing a seizure every minute. He was having 17-25 grand mals a day. had his first seizure at age 3 and just turned 13. After we ditched the mainstream drs we started with holistic. We have been to probably 15 and every single time they have sent us on our way, they could not help us. The monetary part was huge but most importantly was the time wasted. Every person we saw claimed they knew how to get better and we had to stop what we were doing with him. He always regressed. I am afraid of this with dr goldrberg. We have come to far with to see this happen. I am afraid to relinquish control. One DAN treated me like I was stupid and even asked why I had my son on a b-complex. He also asked me who told me to put him on those supplements. o you can see why I hesitate. is moving along slowly. He has been on gaps/bed for the last year and we are seeing slow progress, we never have before. I do not want to give this up because a dr tells me to. has no speech, although on a good day he will try to talk. He sits, but on a good day he will walk around and on a really good day he will fit train track pieces together. He has zero bowel movements and we give him an enema every other day. He is not loud, he is never violent, rarely stims, he is very sweet. He wears a pull up and we feed him. He makes eye contact and he smiles. His seizures I think are a reaction to the wrong food. Although dr goldberg said it is an immune response. Maybe that is why his allergies seem to change. I rely on muscle testing to determine what to feed him. It is not accurate of course, so he does have seizures, from 0-3 a day. I would love some opinions and some feed back about the dr. Thank you so much for your time. No matter what I decide, I am sure I will be part of this group. jo -- 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 20, 2011 Report Share Posted February 20, 2011 Thank you for your thoughts. My son was not immunized by the way. We have done keto diet and we have done major amounts of supplements. The supplements are tricky because they trigger seizures, which is why it is taking us so many years to even get to this point. Best wishes with the homepoathy! Thanks again! MJ > > > > > > > Hi all! I have decided to get rid of the viruses in my son. I have some > > decisions to make though and I need some help. I know I don't know any of > > you on this group, other than popping on once in awhile, but this is > > something you have all been working on. > > > > I found dr goldberg yesterday and ended up here. I did research and read > > good and bad things about the dr. > > > > So I think I have 3 choices: > > > > See if my family dr will work with me, but still I will probably be going > > it somewhat alone as far as dosing goes, etc... although I know some of you > > would be able to help with that. He may not even be willing. > > > > Find a DAN, there goes alot of money again I am thinking. Been to 2 in my > > state so far. > > > > Go see dr goldberg. > > > > Let me tell you a brief history about my son though. > > > > The most important thing is his arachnoid cyst on his left temporal lobe. > > We have been thinking, quite a few years have gone by and we should see if > > it has grown. We have had 2 surgeons from 2 major hospitals say it was too > > small to be causing his seizures and didn't need surgery. Of course meds > > weren't helping the seizures either. Dr goldberg would be able to address > > this for us. I simply do not want to see a main steam neuro again, it was a > > nightmare. > > > > They tried 19 different anti seizure meds and at one point he was on 3 > > different ones, totaling 17 pills a day. He was a mass of bruises and his > > hair was falling out. His eeg was also showing a seizure every minute. He > > was having 17-25 grand mals a day. > > > > had his first seizure at age 3 and just turned 13. After we ditched > > the mainstream drs we started with holistic. We have been to probably 15 and > > every single time they have sent us on our way, they could not help us. The > > monetary part was huge but most importantly was the time wasted. > > > > Every person we saw claimed they knew how to get better and we had to > > stop what we were doing with him. He always regressed. I am afraid of this > > with dr goldrberg. We have come to far with to see this happen. I am > > afraid to relinquish control. One DAN treated me like I was stupid and even > > asked why I had my son on a b-complex. He also asked me who told me to put > > him on those supplements. o you can see why I hesitate. > > > > is moving along slowly. He has been on gaps/bed for the last year and > > we are seeing slow progress, we never have before. I do not want to give > > this up because a dr tells me to. > > > > has no speech, although on a good day he will try to talk. He sits, > > but on a good day he will walk around and on a really good day he will fit > > train track pieces together. He has zero bowel movements and we give him an > > enema every other day. He is not loud, he is never violent, rarely stims, he > > is very sweet. He wears a pull up and we feed him. He makes eye contact and > > he smiles. His seizures I think are a reaction to the wrong food. Although > > dr goldberg said it is an immune response. Maybe that is why his allergies > > seem to change. I rely on muscle testing to determine what to feed him. It > > is not accurate of course, so he does have seizures, from 0-3 a day. > > > > I would love some opinions and some feed back about the dr. > > > > Thank you so much for your time. No matter what I decide, I am sure I will > > be part of this group. > > > > jo > > > > > > > > > > -- > 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 20, 2011 Report Share Posted February 20, 2011 How did you do with the keto diet? We have considered it due the his EEG issues (show consistent epilitiform activity)We started the Low Oxalate Diet in the spring last year because oxalate can trigger seizures. Last absence seizures he had were following me trying to add a supp for ADHD... didn't read the label, it's contraindicated in those with seizures. Doh. So I know how you feel! Â Thank you for your thoughts. My son was not immunized by the way. We have done keto diet and we have done major amounts of supplements. The supplements are tricky because they trigger seizures, which is why it is taking us so many years to even get to this point. Best wishes with the homepoathy! Thanks again! MJ > > > > > > > Hi all! I have decided to get rid of the viruses in my son. I have some > > decisions to make though and I need some help. I know I don't know any of > > you on this group, other than popping on once in awhile, but this is > > something you have all been working on. > > > > I found dr goldberg yesterday and ended up here. I did research and read > > good and bad things about the dr. > > > > So I think I have 3 choices: > > > > See if my family dr will work with me, but still I will probably be going > > it somewhat alone as far as dosing goes, etc... although I know some of you > > would be able to help with that. He may not even be willing. > > > > Find a DAN, there goes alot of money again I am thinking. Been to 2 in my > > state so far. > > > > Go see dr goldberg. > > > > Let me tell you a brief history about my son though. > > > > The most important thing is his arachnoid cyst on his left temporal lobe. > > We have been thinking, quite a few years have gone by and we should see if > > it has grown. We have had 2 surgeons from 2 major hospitals say it was too > > small to be causing his seizures and didn't need surgery. Of course meds > > weren't helping the seizures either. Dr goldberg would be able to address > > this for us. I simply do not want to see a main steam neuro again, it was a > > nightmare. > > > > They tried 19 different anti seizure meds and at one point he was on 3 > > different ones, totaling 17 pills a day. He was a mass of bruises and his > > hair was falling out. His eeg was also showing a seizure every minute. He > > was having 17-25 grand mals a day. > > > > had his first seizure at age 3 and just turned 13. After we ditched > > the mainstream drs we started with holistic. We have been to probably 15 and > > every single time they have sent us on our way, they could not help us. The > > monetary part was huge but most importantly was the time wasted. > > > > Every person we saw claimed they knew how to get better and we had to > > stop what we were doing with him. He always regressed. I am afraid of this > > with dr goldrberg. We have come to far with to see this happen. I am > > afraid to relinquish control. One DAN treated me like I was stupid and even > > asked why I had my son on a b-complex. He also asked me who told me to put > > him on those supplements. o you can see why I hesitate. > > > > is moving along slowly. He has been on gaps/bed for the last year and > > we are seeing slow progress, we never have before. I do not want to give > > this up because a dr tells me to. > > > > has no speech, although on a good day he will try to talk. He sits, > > but on a good day he will walk around and on a really good day he will fit > > train track pieces together. He has zero bowel movements and we give him an > > enema every other day. He is not loud, he is never violent, rarely stims, he > > is very sweet. He wears a pull up and we feed him. He makes eye contact and > > he smiles. His seizures I think are a reaction to the wrong food. Although > > dr goldberg said it is an immune response. Maybe that is why his allergies > > seem to change. I rely on muscle testing to determine what to feed him. It > > is not accurate of course, so he does have seizures, from 0-3 a day. > > > > I would love some opinions and some feed back about the dr. > > > > Thank you so much for your time. No matter what I decide, I am sure I will > > be part of this group. > > > > jo > > > > > > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > -- 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 20, 2011 Report Share Posted February 20, 2011 Toni, off the top of your head would you care to list any supps you know that are not good choices for kids with seizure activity?Thanks much!To: mb12 valtrex Sent: Sun, February 20, 2011 5:38:47 PMSubject: Re: How did you do with the keto diet? We have considered it due the his EEG issues (show consistent epilitiform activity)We started the Low Oxalate Diet in the spring last year because oxalate can trigger seizures. Last absence seizures he had were following me trying to add a supp for ADHD... didn't read the label, it's contraindicated in those with seizures. Doh. So I know how you feel! Thank you for your thoughts. My son was not immunized by the way. We have done keto diet and we have done major amounts of supplements. The supplements are tricky because they trigger seizures, which is why it is taking us so many years to even get to this point. Best wishes with the homepoathy! Thanks again! MJ > > > > > > > Hi all! I have decided to get rid of the viruses in my son. I have some > > decisions to make though and I need some help. I know I don't know any of > > you on this group, other than popping on once in awhile, but this is > > something you have all been working on. > > > > I found dr goldberg yesterday and ended up here. I did research and read > > good and bad things about the dr. > > > > So I think I have 3 choices: > > > > See if my family dr will work with me, but still I will probably be going > > it somewhat alone as far as dosing goes, etc... although I know some of you > > would be able to help with that. He may not even be willing. > > > > Find a DAN, there goes alot of money again I am thinking. Been to 2 in my > > state so far. > > > > Go see dr goldberg. > > > > Let me tell you a brief history about my son though. > > > > The most important thing is his arachnoid cyst on his left temporal lobe. > > We have been thinking, quite a few years have gone by and we should see if > > it has grown. We have had 2 surgeons from 2 major hospitals say it was too > > small to be causing his seizures and didn't need surgery. Of course meds > > weren't helping the seizures either. Dr goldberg would be able to address > > this for us. I simply do not want to see a main steam neuro again, it was a > > nightmare. > > > > They tried 19 different anti seizure meds and at one point he was on 3 > > different ones, totaling 17 pills a day. He was a mass of bruises and his > > hair was falling out. His eeg was also showing a seizure every minute. He > > was having 17-25 grand mals a day. > > > > had his first seizure at age 3 and just turned 13. After we ditched > > the mainstream drs we started with holistic. We have been to probably 15 and > > every single time they have sent us on our way, they could not help us. The > > monetary part was huge but most importantly was the time wasted. > > > > Every person we saw claimed they knew how to get better and we had to > > stop what we were doing with him. He always regressed. I am afraid of this > > with dr goldrberg. We have come to far with to see this happen. I am > > afraid to relinquish control. One DAN treated me like I was stupid and even > > asked why I had my son on a b-complex. He also asked me who told me to put > > him on those supplements. o you can see why I hesitate. > > > > is moving along slowly. He has been on gaps/bed for the last year and > > we are seeing slow progress, we never have before. I do not want to give > > this up because a dr tells me to. > > > > has no speech, although on a good day he will try to talk. He sits, > > but on a good day he will walk around and on a really good day he will fit > > train track pieces together. He has zero bowel movements and we give him an > > enema every other day. He is not loud, he is never violent, rarely stims, he > > is very sweet. He wears a pull up and we feed him. He makes eye contact and > > he smiles. His seizures I think are a reaction to the wrong food. Although > > dr goldberg said it is an immune response. Maybe that is why his allergies > > seem to change. I rely on muscle testing to determine what to feed him. It > > is not accurate of course, so he does have seizures, from 0-3 a day. > > > > I would love some opinions and some feed back about the dr. > > > > Thank you so much for your time. No matter what I decide, I am sure I will > > be part of this group. > > > > jo > > > > > > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > -- 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 20, 2011 Report Share Posted February 20, 2011 Off the top of my head, it was DMAE we used. It's in this Brain Toniq drink I have given/shared with my son, with no issues. I bought a bottle of straight DMAE supp, gave him one without really doing any research on it (since he's had the drink with me a few times) The next day, big issues at school... fighting and absence seizure(s). Â Toni, off the top of your head would you care to list any supps you know that are not good choices for kids with seizure activity? Thanks much! To: mb12 valtrex Sent: Sun, February 20, 2011 5:38:47 PMSubject: Re: Â How did you do with the keto diet? We have considered it due the his EEG issues (show consistent epilitiform activity)We started the Low Oxalate Diet in the spring last year because oxalate can trigger seizures. Last absence seizures he had were following me trying to add a supp for ADHD... didn't read the label, it's contraindicated in those with seizures. Doh. So I know how you feel! Â Thank you for your thoughts. My son was not immunized by the way. We have done keto diet and we have done major amounts of supplements. The supplements are tricky because they trigger seizures, which is why it is taking us so many years to even get to this point. Best wishes with the homepoathy! Thanks again! MJ > > > > > > > Hi all! I have decided to get rid of the viruses in my son. I have some > > decisions to make though and I need some help. I know I don't know any of > > you on this group, other than popping on once in awhile, but this is > > something you have all been working on. > > > > I found dr goldberg yesterday and ended up here. I did research and read > > good and bad things about the dr. > > > > So I think I have 3 choices: > > > > See if my family dr will work with me, but still I will probably be going > > it somewhat alone as far as dosing goes, etc... although I know some of you > > would be able to help with that. He may not even be willing. > > > > Find a DAN, there goes alot of money again I am thinking. Been to 2 in my > > state so far. > > > > Go see dr goldberg. > > > > Let me tell you a brief history about my son though. > > > > The most important thing is his arachnoid cyst on his left temporal lobe. > > We have been thinking, quite a few years have gone by and we should see if > > it has grown. We have had 2 surgeons from 2 major hospitals say it was too > > small to be causing his seizures and didn't need surgery. Of course meds > > weren't helping the seizures either. Dr goldberg would be able to address > > this for us. I simply do not want to see a main steam neuro again, it was a > > nightmare. > > > > They tried 19 different anti seizure meds and at one point he was on 3 > > different ones, totaling 17 pills a day. He was a mass of bruises and his > > hair was falling out. His eeg was also showing a seizure every minute. He > > was having 17-25 grand mals a day. > > > > had his first seizure at age 3 and just turned 13. After we ditched > > the mainstream drs we started with holistic. We have been to probably 15 and > > every single time they have sent us on our way, they could not help us. The > > monetary part was huge but most importantly was the time wasted. > > > > Every person we saw claimed they knew how to get better and we had to > > stop what we were doing with him. He always regressed. I am afraid of this > > with dr goldrberg. We have come to far with to see this happen. I am > > afraid to relinquish control. One DAN treated me like I was stupid and even > > asked why I had my son on a b-complex. He also asked me who told me to put > > him on those supplements. o you can see why I hesitate. > > > > is moving along slowly. He has been on gaps/bed for the last year and > > we are seeing slow progress, we never have before. I do not want to give > > this up because a dr tells me to. > > > > has no speech, although on a good day he will try to talk. He sits, > > but on a good day he will walk around and on a really good day he will fit > > train track pieces together. He has zero bowel movements and we give him an > > enema every other day. He is not loud, he is never violent, rarely stims, he > > is very sweet. He wears a pull up and we feed him. He makes eye contact and > > he smiles. His seizures I think are a reaction to the wrong food. Although > > dr goldberg said it is an immune response. Maybe that is why his allergies > > seem to change. I rely on muscle testing to determine what to feed him. It > > is not accurate of course, so he does have seizures, from 0-3 a day. > > > > I would love some opinions and some feed back about the dr. > > > > Thank you so much for your time. No matter what I decide, I am sure I will > > be part of this group. > > > > jo > > > > > > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. -- 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 20, 2011 Report Share Posted February 20, 2011 Toni, Which ADHD medicine triggered the seizure? That could be a huge clue. Now that we know about the IL-1 connection to oxalate, now I wonder if some of the " febrile seizures " are really oxalate related seizures that get IL-1 in the mix causing the fever because the crystals of oxalate triggered the IL-1 response. IF that is the mechanism for the fever and seizure happening together, then it might be that taking B6 and biotin and maybe TTFD would be the way to help the body get reduce the oxalate and protect from the seizure. Toni, maybe you are aware that there are " B6-dependent seizures " (and B6-deficiency can drive oxalate production from the intermediate glyoxylate) and biotin-dependent seizures (and biotin mitigates one consequence of elevated oxalate: the inhibition of carboxylases responsible for mitochondrial energy functions). At the mito conference last summer, I asked one of the speakers WHEN biotin was considered as a treatment for seizures, and the speaker said that they assumed that perinatal blood testing for biotinidase deficiency would be sufficient for identifying those at risk kids. If that is ALL that is being done, they would be missing those children with oxalate issues or other reasons for biotin deficiency that might respond to high doses of biotin. (Biotin is made by our flora, and many popularly used antibiotics kill these microbes.) I'm also in discussions with one of those mito scientists with the thought that they might be able to use higher doses of biotin than they've been using because the effective dose in thiamine transport deficiencies is HUGE: 5-10 mgs/kg/day of biotin. Thiamine deficiencies in these children with dystonia may have led to high endogenous production of oxalate all over the body that got to affecting the function of the brain and peripheral nervous system. I have not been able to find out how the doctors that cured dystonia in three days with this dose of biotin arrived at that dose, especially since they were not dealing with a biotin transport problem, but instead a thiamine transport problem. The scientist I talked to said that his colleagues were reluctant to use more than 10 mgs/day, a much lower dose, for mito kids because these doctors were concerned about not being able to identify children who might have adverse allergic reaction to higher doses. We're still talking about this because it would be a shame if they never used enough biotin to identify a " curing " dose because of reluctance to get high enough to find what would be an effective dose. Right now they may be erring on the side of conservatism. > > How did you do with the keto diet? We have considered it due the his EEG > issues (show consistent epilitiform activity) > > We started the Low Oxalate Diet in the spring last year because oxalate can > trigger seizures. > > Last absence seizures he had were following me trying to add a supp for > ADHD... didn't read the label, it's contraindicated in those with seizures. > Doh. So I know how you feel! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Oh it wasn't an ADHD med (did I say med, if so I mispoke) it was a supplement - DMAE. Â Toni, Which ADHD medicine triggered the seizure? That could be a huge clue. Now that we know about the IL-1 connection to oxalate, now I wonder if some of the " febrile seizures " are really oxalate related seizures that get IL-1 in the mix causing the fever because the crystals of oxalate triggered the IL-1 response. IF that is the mechanism for the fever and seizure happening together, then it might be that taking B6 and biotin and maybe TTFD would be the way to help the body get reduce the oxalate and protect from the seizure. Toni, maybe you are aware that there are " B6-dependent seizures " (and B6-deficiency can drive oxalate production from the intermediate glyoxylate) and biotin-dependent seizures (and biotin mitigates one consequence of elevated oxalate: the inhibition of carboxylases responsible for mitochondrial energy functions). At the mito conference last summer, I asked one of the speakers WHEN biotin was considered as a treatment for seizures, and the speaker said that they assumed that perinatal blood testing for biotinidase deficiency would be sufficient for identifying those at risk kids. If that is ALL that is being done, they would be missing those children with oxalate issues or other reasons for biotin deficiency that might respond to high doses of biotin. (Biotin is made by our flora, and many popularly used antibiotics kill these microbes.) I'm also in discussions with one of those mito scientists with the thought that they might be able to use higher doses of biotin than they've been using because the effective dose in thiamine transport deficiencies is HUGE: 5-10 mgs/kg/day of biotin. Thiamine deficiencies in these children with dystonia may have led to high endogenous production of oxalate all over the body that got to affecting the function of the brain and peripheral nervous system. I have not been able to find out how the doctors that cured dystonia in three days with this dose of biotin arrived at that dose, especially since they were not dealing with a biotin transport problem, but instead a thiamine transport problem. The scientist I talked to said that his colleagues were reluctant to use more than 10 mgs/day, a much lower dose, for mito kids because these doctors were concerned about not being able to identify children who might have adverse allergic reaction to higher doses. We're still talking about this because it would be a shame if they never used enough biotin to identify a " curing " dose because of reluctance to get high enough to find what would be an effective dose. Right now they may be erring on the side of conservatism. > > How did you do with the keto diet? We have considered it due the his EEG > issues (show consistent epilitiform activity) > > We started the Low Oxalate Diet in the spring last year because oxalate can > trigger seizures. > > Last absence seizures he had were following me trying to add a supp for > ADHD... didn't read the label, it's contraindicated in those with seizures. > Doh. So I know how you feel! > -- 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 20, 2011 Report Share Posted February 20, 2011 Oh yeah, I also considered that it may have been all coincidental with a dump. He had dumping symptoms that week too. I REALLY do think the oxalates are involved with his seizure issues but it's hard when I am throwing all these supp his way. I'm trying not to do this at much, but it's hard... what usually happens is I start a supp, run out, stop giving it, go to the store, buy what I was missing, find something else, add them both at the same time (one being what he'd had before) and then not know if this is a new reaction to the old thing, a reaction to the new thing, or just a stupid oxalate dump. Sigh!!! Â Toni, Which ADHD medicine triggered the seizure? That could be a huge clue. Now that we know about the IL-1 connection to oxalate, now I wonder if some of the " febrile seizures " are really oxalate related seizures that get IL-1 in the mix causing the fever because the crystals of oxalate triggered the IL-1 response. IF that is the mechanism for the fever and seizure happening together, then it might be that taking B6 and biotin and maybe TTFD would be the way to help the body get reduce the oxalate and protect from the seizure. Toni, maybe you are aware that there are " B6-dependent seizures " (and B6-deficiency can drive oxalate production from the intermediate glyoxylate) and biotin-dependent seizures (and biotin mitigates one consequence of elevated oxalate: the inhibition of carboxylases responsible for mitochondrial energy functions). At the mito conference last summer, I asked one of the speakers WHEN biotin was considered as a treatment for seizures, and the speaker said that they assumed that perinatal blood testing for biotinidase deficiency would be sufficient for identifying those at risk kids. If that is ALL that is being done, they would be missing those children with oxalate issues or other reasons for biotin deficiency that might respond to high doses of biotin. (Biotin is made by our flora, and many popularly used antibiotics kill these microbes.) I'm also in discussions with one of those mito scientists with the thought that they might be able to use higher doses of biotin than they've been using because the effective dose in thiamine transport deficiencies is HUGE: 5-10 mgs/kg/day of biotin. Thiamine deficiencies in these children with dystonia may have led to high endogenous production of oxalate all over the body that got to affecting the function of the brain and peripheral nervous system. I have not been able to find out how the doctors that cured dystonia in three days with this dose of biotin arrived at that dose, especially since they were not dealing with a biotin transport problem, but instead a thiamine transport problem. The scientist I talked to said that his colleagues were reluctant to use more than 10 mgs/day, a much lower dose, for mito kids because these doctors were concerned about not being able to identify children who might have adverse allergic reaction to higher doses. We're still talking about this because it would be a shame if they never used enough biotin to identify a " curing " dose because of reluctance to get high enough to find what would be an effective dose. Right now they may be erring on the side of conservatism. > > How did you do with the keto diet? We have considered it due the his EEG > issues (show consistent epilitiform activity) > > We started the Low Oxalate Diet in the spring last year because oxalate can > trigger seizures. > > Last absence seizures he had were following me trying to add a supp for > ADHD... didn't read the label, it's contraindicated in those with seizures. > Doh. So I know how you feel! > -- 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 20, 2011 Report Share Posted February 20, 2011 We did terrible with keto. I heard there are healthy versions though. jo > > > > > > > > > > > > > > > Hi all! I have decided to get rid of the viruses in my son. I have some > > > > decisions to make though and I need some help. I know I don't know any > > of > > > > you on this group, other than popping on once in awhile, but this is > > > > something you have all been working on. > > > > > > > > I found dr goldberg yesterday and ended up here. I did research and > > read > > > > good and bad things about the dr. > > > > > > > > So I think I have 3 choices: > > > > > > > > See if my family dr will work with me, but still I will probably be > > going > > > > it somewhat alone as far as dosing goes, etc... although I know some of > > you > > > > would be able to help with that. He may not even be willing. > > > > > > > > Find a DAN, there goes alot of money again I am thinking. Been to 2 in > > my > > > > state so far. > > > > > > > > Go see dr goldberg. > > > > > > > > Let me tell you a brief history about my son though. > > > > > > > > The most important thing is his arachnoid cyst on his left temporal > > lobe. > > > > We have been thinking, quite a few years have gone by and we should see > > if > > > > it has grown. We have had 2 surgeons from 2 major hospitals say it was > > too > > > > small to be causing his seizures and didn't need surgery. Of course > > meds > > > > weren't helping the seizures either. Dr goldberg would be able to > > address > > > > this for us. I simply do not want to see a main steam neuro again, it > > was a > > > > nightmare. > > > > > > > > They tried 19 different anti seizure meds and at one point he was on 3 > > > > different ones, totaling 17 pills a day. He was a mass of bruises and > > his > > > > hair was falling out. His eeg was also showing a seizure every minute. > > He > > > > was having 17-25 grand mals a day. > > > > > > > > had his first seizure at age 3 and just turned 13. After we > > ditched > > > > the mainstream drs we started with holistic. We have been to probably > > 15 and > > > > every single time they have sent us on our way, they could not help us. > > The > > > > monetary part was huge but most importantly was the time wasted. > > > > > > > > Every person we saw claimed they knew how to get better and we had > > to > > > > stop what we were doing with him. He always regressed. I am afraid of > > this > > > > with dr goldrberg. We have come to far with to see this happen. I > > am > > > > afraid to relinquish control. One DAN treated me like I was stupid and > > even > > > > asked why I had my son on a b-complex. He also asked me who told me to > > put > > > > him on those supplements. o you can see why I hesitate. > > > > > > > > is moving along slowly. He has been on gaps/bed for the last year > > and > > > > we are seeing slow progress, we never have before. I do not want to > > give > > > > this up because a dr tells me to. > > > > > > > > has no speech, although on a good day he will try to talk. He > > sits, > > > > but on a good day he will walk around and on a really good day he will > > fit > > > > train track pieces together. He has zero bowel movements and we give > > him an > > > > enema every other day. He is not loud, he is never violent, rarely > > stims, he > > > > is very sweet. He wears a pull up and we feed him. He makes eye contact > > and > > > > he smiles. His seizures I think are a reaction to the wrong food. > > Although > > > > dr goldberg said it is an immune response. Maybe that is why his > > allergies > > > > seem to change. I rely on muscle testing to determine what to feed him. > > It > > > > is not accurate of course, so he does have seizures, from 0-3 a day. > > > > > > > > I would love some opinions and some feed back about the dr. > > > > > > > > Thank you so much for your time. No matter what I decide, I am sure I > > will > > > > be part of this group. > > > > > > > > jo > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Toni > > > > > > ------ > > > Mind like a steel trap... > > > Rusty and illegal in 37 states. > > > > > > > > > > > > > -- > 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 20, 2011 Report Share Posted February 20, 2011 Dr bernard rimland has a good seizure protocol. You can find it if you look it up. I may have it somewhere and will look. jo > >> > > >> > > > >> > > > >> > > Hi all! I have decided to get rid of the viruses in my son. I have > >> some > >> > > decisions to make though and I need some help. I know I don't know any > >> of > >> > > you on this group, other than popping on once in awhile, but this is > >> > > something you have all been working on. > >> > > > >> > > I found dr goldberg yesterday and ended up here. I did research and > >> read > >> > > good and bad things about the dr. > >> > > > >> > > So I think I have 3 choices: > >> > > > >> > > See if my family dr will work with me, but still I will probably be > >> going > >> > > it somewhat alone as far as dosing goes, etc... although I know some > >> of you > >> > > would be able to help with that. He may not even be willing. > >> > > > >> > > Find a DAN, there goes alot of money again I am thinking. Been to 2 in > >> my > >> > > state so far. > >> > > > >> > > Go see dr goldberg. > >> > > > >> > > Let me tell you a brief history about my son though. > >> > > > >> > > The most important thing is his arachnoid cyst on his left temporal > >> lobe. > >> > > We have been thinking, quite a few years have gone by and we should > >> see if > >> > > it has grown. We have had 2 surgeons from 2 major hospitals say it was > >> too > >> > > small to be causing his seizures and didn't need surgery. Of course > >> meds > >> > > weren't helping the seizures either. Dr goldberg would be able to > >> address > >> > > this for us. I simply do not want to see a main steam neuro again, it > >> was a > >> > > nightmare. > >> > > > >> > > They tried 19 different anti seizure meds and at one point he was on 3 > >> > > different ones, totaling 17 pills a day. He was a mass of bruises and > >> his > >> > > hair was falling out. His eeg was also showing a seizure every minute. > >> He > >> > > was having 17-25 grand mals a day. > >> > > > >> > > had his first seizure at age 3 and just turned 13. After we > >> ditched > >> > > the mainstream drs we started with holistic. We have been to probably > >> 15 and > >> > > every single time they have sent us on our way, they could not help > >> us. The > >> > > monetary part was huge but most importantly was the time wasted. > >> > > > >> > > Every person we saw claimed they knew how to get better and we > >> had to > >> > > stop what we were doing with him. He always regressed. I am afraid of > >> this > >> > > with dr goldrberg. We have come to far with to see this happen. I > >> am > >> > > afraid to relinquish control. One DAN treated me like I was stupid and > >> even > >> > > asked why I had my son on a b-complex. He also asked me who told me to > >> put > >> > > him on those supplements. o you can see why I hesitate. > >> > > > >> > > is moving along slowly. He has been on gaps/bed for the last year > >> and > >> > > we are seeing slow progress, we never have before. I do not want to > >> give > >> > > this up because a dr tells me to. > >> > > > >> > > has no speech, although on a good day he will try to talk. He > >> sits, > >> > > but on a good day he will walk around and on a really good day he will > >> fit > >> > > train track pieces together. He has zero bowel movements and we give > >> him an > >> > > enema every other day. He is not loud, he is never violent, rarely > >> stims, he > >> > > is very sweet. He wears a pull up and we feed him. He makes eye > >> contact and > >> > > he smiles. His seizures I think are a reaction to the wrong food. > >> Although > >> > > dr goldberg said it is an immune response. Maybe that is why his > >> allergies > >> > > seem to change. I rely on muscle testing to determine what to feed > >> him. It > >> > > is not accurate of course, so he does have seizures, from 0-3 a day. > >> > > > >> > > I would love some opinions and some feed back about the dr. > >> > > > >> > > Thank you so much for your time. No matter what I decide, I am sure I > >> will > >> > > be part of this group. > >> > > > >> > > jo > >> > > > >> > > > >> > > > >> > > >> > > >> > > >> > -- > >> > Toni > >> > > >> > ------ > >> > Mind like a steel trap... > >> > Rusty and illegal in 37 states. > >> > > >> > >> > > > > > > -- > > Toni > > > > ------ > > Mind like a steel trap... > > Rusty and illegal in 37 states. > > > > > > > > > > -- > 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 January 11, 2012 Report Share Posted January 11, 2012 Hi, here is what I have used;however I have stuck with Advance Diabetes Supplies. here is the info: Advance Diabetes Supply program supplies are delivered every 3 months, and I get a call in advance to make sure I am home to sign off. Am med Direct P.O box 292 369 Nashville Tn, 37229 Direct department for customer service: 1- Fax: good luck sugar 'Real tears are not those that fall from your eyes and cover your face, but that fall from your heart and cover your soul.' ~Be Blessed, Sugar Hello All: Could someone please tell me what company is best recommended for providing the Prodigy Voice meter and its testing strips? A phone number or website would be most appreciated. Many thanks. -- Peace, love and empathy, Nefertiti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2012 Report Share Posted January 11, 2012 I have diabetes care club. Becky > > > > Hello All: > > Could someone please tell me what company is best recommended for > providing the Prodigy Voice meter and its testing strips? A phone > number or website would be most appreciated. > > Many thanks. > > -- > Peace, love and empathy, > > Nefertiti > > > > > Quote Link to comment Share on other sites More sharing options...
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