Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 not Stan but I could not tell if you have any methylation or sulphation supports in place. I am guessing the LDN is taking care of the immune support. If he is showing any red ears (sign of more than the usual sulphation deficit in my son) then try epsom salt baths and more glutathione. For methylation ask your DAN for a fair amount of B-12s, some folapro and maybe some BH4. Seems like the methylation cycle might be stuck somewhere. Throw in some mild chelator - like 1/4 of an EDTA capsule to begin with going upto maybe 1. The Yasko website is good for suggesting overall body support www.autismanswer.com. Use some other microbial agents as well. I think you need to hit the virus with a couple of other agents whilst keeping the body supported. Ask your DAN for specifics but this is just to give a general idea. The loss of appetite is probably coming from his body using its reserves to fight the virus. I would get more probiotics and rotate them, see if you can get at least 3 different ones per week. Lastly if nothing works you may want to drop the dosage. He is obviously having a hard time. Hope it gets better soon. Gayatri > > stan (or anyone who can help, i'm desperate), > > my son,nick (4 1/2 yrs. old) has been on valtrex since july 10th. i > also switched from nystatin to diflucan about a week prior to that. > he had an initial regression period that lasted for about 10 days. > he became stimmy, aggressive, hard to transistion and has had his > hands in his mouth a lot (even after upping his zinc dosage). after > the ten day period, he seemed to even out a bit except for the oral > fixation. on the 24th, i upped his dosage to 3x a day (250mg, 3x a > day) based on stan's advice. i didn't notice any noticable > regressions until the last few days. he's been very emotional, > aggressive, teary and angry at times. his yeast seems to be under > control because nick's first sign of yeast is trouble sleeping. > he's actually sleeping best right now... approx. 12 hours. he's > asleep by 8:15pm and i've had to wake him almost every morning for > school by 7:45. he wakes very happy and ready to go. > > another big concern of mine is his loss of appetite. he already has > a very self-restricting diet and has begun to eliminate even more > foods. i'm not sure if the valtrex is upsetting his stomach or just > causing a loss of appetite. i've also started him on milk thistle > in order to help support his liver throughout his treatment. > > what is going on with my son? i know that aggression is usually > bacteria for nick but he has been taking primal defense in place of > his usual culturelle since july 3rd. he seems to be doing well on > it. not sure if i should try upping his dosage of that or not.. i > know that sometimes when the yeast moves out, the bacteria moves > in. help? is this just the usual adjustment period?? i must say, > i haven't seen any gains to speak of. there could possibly be some > increase in speech but i'm not sure if that's because i'm trying > desperately to find some gains. > > i feel terrible. i hate to see him so out of sorts. he has become > terribly visually stimmy which had tapered off for some time until > now. tonight, i took him to the park which he usually loves. he > went down the slide once and just lost it. he started crying and > sobbing for no apparent reason. he was smacking me, punching me and > pulling my hair. this child is usually so gentle and loving. it's > so upsetting. he has had his hand in his mouth, playing with his > tongue and his spit constantly. for a while there, he seemed to do > these things and after about a week of upping his zinc dosage, the > symtoms seemed to subside. it doesn't seem to be working this time. > > nick currently takes: > all 3 of houston's enzymes for 2yrs.as an alternative to diet. > diflucan 1x a day > primal defense 2x a day > magnesium citrate for constipation since starting LDN 1x a day > LDN, 3mg. at 11pm every night > coromega 1x a day > milk thistle 1x a day > valtrex 3x a day > brainchild's minerals and liquizinc. > he currently cannot tolerate any vitamins but will try again this > month. > > please help. i am beside myself. it's completely heartwrenching. > > thanks in advance, > tracey, proud mom to nick, 4 1/2 years old. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 not Stan but I could not tell if you have any methylation or sulphation supports in place. I am guessing the LDN is taking care of the immune support. If he is showing any red ears (sign of more than the usual sulphation deficit in my son) then try epsom salt baths and more glutathione. For methylation ask your DAN for a fair amount of B-12s, some folapro and maybe some BH4. Seems like the methylation cycle might be stuck somewhere. Throw in some mild chelator - like 1/4 of an EDTA capsule to begin with going upto maybe 1. The Yasko website is good for suggesting overall body support www.autismanswer.com. Use some other microbial agents as well. I think you need to hit the virus with a couple of other agents whilst keeping the body supported. Ask your DAN for specifics but this is just to give a general idea. The loss of appetite is probably coming from his body using its reserves to fight the virus. I would get more probiotics and rotate them, see if you can get at least 3 different ones per week. Lastly if nothing works you may want to drop the dosage. He is obviously having a hard time. Hope it gets better soon. Gayatri > > stan (or anyone who can help, i'm desperate), > > my son,nick (4 1/2 yrs. old) has been on valtrex since july 10th. i > also switched from nystatin to diflucan about a week prior to that. > he had an initial regression period that lasted for about 10 days. > he became stimmy, aggressive, hard to transistion and has had his > hands in his mouth a lot (even after upping his zinc dosage). after > the ten day period, he seemed to even out a bit except for the oral > fixation. on the 24th, i upped his dosage to 3x a day (250mg, 3x a > day) based on stan's advice. i didn't notice any noticable > regressions until the last few days. he's been very emotional, > aggressive, teary and angry at times. his yeast seems to be under > control because nick's first sign of yeast is trouble sleeping. > he's actually sleeping best right now... approx. 12 hours. he's > asleep by 8:15pm and i've had to wake him almost every morning for > school by 7:45. he wakes very happy and ready to go. > > another big concern of mine is his loss of appetite. he already has > a very self-restricting diet and has begun to eliminate even more > foods. i'm not sure if the valtrex is upsetting his stomach or just > causing a loss of appetite. i've also started him on milk thistle > in order to help support his liver throughout his treatment. > > what is going on with my son? i know that aggression is usually > bacteria for nick but he has been taking primal defense in place of > his usual culturelle since july 3rd. he seems to be doing well on > it. not sure if i should try upping his dosage of that or not.. i > know that sometimes when the yeast moves out, the bacteria moves > in. help? is this just the usual adjustment period?? i must say, > i haven't seen any gains to speak of. there could possibly be some > increase in speech but i'm not sure if that's because i'm trying > desperately to find some gains. > > i feel terrible. i hate to see him so out of sorts. he has become > terribly visually stimmy which had tapered off for some time until > now. tonight, i took him to the park which he usually loves. he > went down the slide once and just lost it. he started crying and > sobbing for no apparent reason. he was smacking me, punching me and > pulling my hair. this child is usually so gentle and loving. it's > so upsetting. he has had his hand in his mouth, playing with his > tongue and his spit constantly. for a while there, he seemed to do > these things and after about a week of upping his zinc dosage, the > symtoms seemed to subside. it doesn't seem to be working this time. > > nick currently takes: > all 3 of houston's enzymes for 2yrs.as an alternative to diet. > diflucan 1x a day > primal defense 2x a day > magnesium citrate for constipation since starting LDN 1x a day > LDN, 3mg. at 11pm every night > coromega 1x a day > milk thistle 1x a day > valtrex 3x a day > brainchild's minerals and liquizinc. > he currently cannot tolerate any vitamins but will try again this > month. > > please help. i am beside myself. it's completely heartwrenching. > > thanks in advance, > tracey, proud mom to nick, 4 1/2 years old. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Tracey - I have a question about the " hands in the mouth " comment. My son does that constantly but I have never heard of adding zinc for it. Has anyone else successfully dealt with this issue using zinc or other supplements???? Our hands in the mouth is also worse since starting Valtrex. Thanks. . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Tracey - I have a question about the " hands in the mouth " comment. My son does that constantly but I have never heard of adding zinc for it. Has anyone else successfully dealt with this issue using zinc or other supplements???? Our hands in the mouth is also worse since starting Valtrex. Thanks. . __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Hi Tracey, My son is 2.5 and started 250 mg of Valtrex, 3 times a day - 6 days ago. He is having the emotional episodes as well. The hands in the mouth - playing with spit really caught my eye. He is doing this too, having never done it before. His zinc levels are good. We are also not seeing any gains from Valtrex yet. No rash, fever, etc. I think we'll stay with it about a month and drop it if we don't see improvement by that time. I wanted to mention that we gave LDN a try. After about 3 months being on a very low dose - my son lost his appetite. It is known to have this side effect in non-autistic patients. It was odd how it happened after being on it for 3 months with no problem. However, once we stopped - appetite came back within 3 days. McCandless told me that she does not see appetite loss in most autistic kids on LDN - and when she does, she thinks it is a sign that they do not need to be on it. So, we are not. You may want to look into the LDN as the source of the appetite problem. Best wishes, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Hi Tracey, My son is 2.5 and started 250 mg of Valtrex, 3 times a day - 6 days ago. He is having the emotional episodes as well. The hands in the mouth - playing with spit really caught my eye. He is doing this too, having never done it before. His zinc levels are good. We are also not seeing any gains from Valtrex yet. No rash, fever, etc. I think we'll stay with it about a month and drop it if we don't see improvement by that time. I wanted to mention that we gave LDN a try. After about 3 months being on a very low dose - my son lost his appetite. It is known to have this side effect in non-autistic patients. It was odd how it happened after being on it for 3 months with no problem. However, once we stopped - appetite came back within 3 days. McCandless told me that she does not see appetite loss in most autistic kids on LDN - and when she does, she thinks it is a sign that they do not need to be on it. So, we are not. You may want to look into the LDN as the source of the appetite problem. Best wishes, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I'm not sure what day you are on at this point Tracey, but if you've gone past 40 days you may want to consider taking down the dosage... especially if you don't see any gains. When it's working you typically see some gains mixed in and you get a feel for it working. If you you decide to press on I would take a few days off and consider 125mg (or less) three times a day and see what happens. - Stan > > stan (or anyone who can help, i'm desperate), > > my son,nick (4 1/2 yrs. old) has been on valtrex since july 10th. i > also switched from nystatin to diflucan about a week prior to that. > he had an initial regression period that lasted for about 10 days. > he became stimmy, aggressive, hard to transistion and has had his > hands in his mouth a lot (even after upping his zinc dosage). after > the ten day period, he seemed to even out a bit except for the oral > fixation. on the 24th, i upped his dosage to 3x a day (250mg, 3x a > day) based on stan's advice. i didn't notice any noticable > regressions until the last few days. he's been very emotional, > aggressive, teary and angry at times. his yeast seems to be under > control because nick's first sign of yeast is trouble sleeping. > he's actually sleeping best right now... approx. 12 hours. he's > asleep by 8:15pm and i've had to wake him almost every morning for > school by 7:45. he wakes very happy and ready to go. > > another big concern of mine is his loss of appetite. he already has > a very self-restricting diet and has begun to eliminate even more > foods. i'm not sure if the valtrex is upsetting his stomach or just > causing a loss of appetite. i've also started him on milk thistle > in order to help support his liver throughout his treatment. > > what is going on with my son? i know that aggression is usually > bacteria for nick but he has been taking primal defense in place of > his usual culturelle since july 3rd. he seems to be doing well on > it. not sure if i should try upping his dosage of that or not.. i > know that sometimes when the yeast moves out, the bacteria moves > in. help? is this just the usual adjustment period?? i must say, > i haven't seen any gains to speak of. there could possibly be some > increase in speech but i'm not sure if that's because i'm trying > desperately to find some gains. > > i feel terrible. i hate to see him so out of sorts. he has become > terribly visually stimmy which had tapered off for some time until > now. tonight, i took him to the park which he usually loves. he > went down the slide once and just lost it. he started crying and > sobbing for no apparent reason. he was smacking me, punching me and > pulling my hair. this child is usually so gentle and loving. it's > so upsetting. he has had his hand in his mouth, playing with his > tongue and his spit constantly. for a while there, he seemed to do > these things and after about a week of upping his zinc dosage, the > symtoms seemed to subside. it doesn't seem to be working this time. > > nick currently takes: > all 3 of houston's enzymes for 2yrs.as an alternative to diet. > diflucan 1x a day > primal defense 2x a day > magnesium citrate for constipation since starting LDN 1x a day > LDN, 3mg. at 11pm every night > coromega 1x a day > milk thistle 1x a day > valtrex 3x a day > brainchild's minerals and liquizinc. > he currently cannot tolerate any vitamins but will try again this > month. > > please help. i am beside myself. it's completely heartwrenching. > > thanks in advance, > tracey, proud mom to nick, 4 1/2 years old. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I'm not sure what day you are on at this point Tracey, but if you've gone past 40 days you may want to consider taking down the dosage... especially if you don't see any gains. When it's working you typically see some gains mixed in and you get a feel for it working. If you you decide to press on I would take a few days off and consider 125mg (or less) three times a day and see what happens. - Stan > > stan (or anyone who can help, i'm desperate), > > my son,nick (4 1/2 yrs. old) has been on valtrex since july 10th. i > also switched from nystatin to diflucan about a week prior to that. > he had an initial regression period that lasted for about 10 days. > he became stimmy, aggressive, hard to transistion and has had his > hands in his mouth a lot (even after upping his zinc dosage). after > the ten day period, he seemed to even out a bit except for the oral > fixation. on the 24th, i upped his dosage to 3x a day (250mg, 3x a > day) based on stan's advice. i didn't notice any noticable > regressions until the last few days. he's been very emotional, > aggressive, teary and angry at times. his yeast seems to be under > control because nick's first sign of yeast is trouble sleeping. > he's actually sleeping best right now... approx. 12 hours. he's > asleep by 8:15pm and i've had to wake him almost every morning for > school by 7:45. he wakes very happy and ready to go. > > another big concern of mine is his loss of appetite. he already has > a very self-restricting diet and has begun to eliminate even more > foods. i'm not sure if the valtrex is upsetting his stomach or just > causing a loss of appetite. i've also started him on milk thistle > in order to help support his liver throughout his treatment. > > what is going on with my son? i know that aggression is usually > bacteria for nick but he has been taking primal defense in place of > his usual culturelle since july 3rd. he seems to be doing well on > it. not sure if i should try upping his dosage of that or not.. i > know that sometimes when the yeast moves out, the bacteria moves > in. help? is this just the usual adjustment period?? i must say, > i haven't seen any gains to speak of. there could possibly be some > increase in speech but i'm not sure if that's because i'm trying > desperately to find some gains. > > i feel terrible. i hate to see him so out of sorts. he has become > terribly visually stimmy which had tapered off for some time until > now. tonight, i took him to the park which he usually loves. he > went down the slide once and just lost it. he started crying and > sobbing for no apparent reason. he was smacking me, punching me and > pulling my hair. this child is usually so gentle and loving. it's > so upsetting. he has had his hand in his mouth, playing with his > tongue and his spit constantly. for a while there, he seemed to do > these things and after about a week of upping his zinc dosage, the > symtoms seemed to subside. it doesn't seem to be working this time. > > nick currently takes: > all 3 of houston's enzymes for 2yrs.as an alternative to diet. > diflucan 1x a day > primal defense 2x a day > magnesium citrate for constipation since starting LDN 1x a day > LDN, 3mg. at 11pm every night > coromega 1x a day > milk thistle 1x a day > valtrex 3x a day > brainchild's minerals and liquizinc. > he currently cannot tolerate any vitamins but will try again this > month. > > please help. i am beside myself. it's completely heartwrenching. > > thanks in advance, > tracey, proud mom to nick, 4 1/2 years old. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Tracey, Your description of what your son is going through fits my five year old daughter to a T ever since we started acylcovir two weeks ago-- loss of appetite, irritability, hand in mouth and all! (And here I thought the hand in mouth was because she just lost a baby tooth). WE have been on acyclovir for two weeks, but I just switched as of this evening to Valtrex (250 mg 2x/day for starters), because I was getting frustrated at the lack of gains and lots of regression we have seen since starting the acylcovir. My daughter was close to recovery, but in the last two weeks she has gone back about two years! (SHe even reversed her pronouns today.) We are about to spend vacation with my judgmental in-laws and I am very anxious about them seeing my daughter like this. Please let me know waht you decide to do, and what, if anything, helps. Please feel free to email me directly. IF you like, I will keep you posted as well. I am intrigued by the suggestion posted that LDN could cause loss of appetitite. My daughter has been on LDN since January. However, her appetite was fine until we started the acyclovir. Does anyoen know if the acyclovir (or Vlatrex) coudl somehow cause the LDN to work in a different way or be not needed, so that suddenly the LDN causes a loss of appetite? I am also intrigued by teh suggestion that excess calcium could cause the hand in mouth issue, by interfering with zinc. We have upped my daughter's calcium recenlty and changed to calcium citrate, as we are following hte LOD diet. So I guess I could try reducing her calcium to see if that gest her hand out of her mouth. (On the other hand, the hadn in mouth stim started with the acyclvoir, not with the increase of calcium). Have you done anything to increase NIck's calcium lately? Good luck to you. I really hope we get a breakthru! > > stan (or anyone who can help, i'm desperate), > > my son,nick (4 1/2 yrs. old) has been on valtrex since july 10th. i > also switched from nystatin to diflucan about a week prior to that. > he had an initial regression period that lasted for about 10 days. > he became stimmy, aggressive, hard to transistion and has had his > hands in his mouth a lot (even after upping his zinc dosage). after > the ten day period, he seemed to even out a bit except for the oral > fixation. on the 24th, i upped his dosage to 3x a day (250mg, 3x a > day) based on stan's advice. i didn't notice any noticable > regressions until the last few days. he's been very emotional, > aggressive, teary and angry at times. his yeast seems to be under > control because nick's first sign of yeast is trouble sleeping. > he's actually sleeping best right now... approx. 12 hours. he's > asleep by 8:15pm and i've had to wake him almost every morning for > school by 7:45. he wakes very happy and ready to go. > > another big concern of mine is his loss of appetite. he already has > a very self-restricting diet and has begun to eliminate even more > foods. i'm not sure if the valtrex is upsetting his stomach or just > causing a loss of appetite. i've also started him on milk thistle > in order to help support his liver throughout his treatment. > > what is going on with my son? i know that aggression is usually > bacteria for nick but he has been taking primal defense in place of > his usual culturelle since july 3rd. he seems to be doing well on > it. not sure if i should try upping his dosage of that or not.. i > know that sometimes when the yeast moves out, the bacteria moves > in. help? is this just the usual adjustment period?? i must say, > i haven't seen any gains to speak of. there could possibly be some > increase in speech but i'm not sure if that's because i'm trying > desperately to find some gains. > > i feel terrible. i hate to see him so out of sorts. he has become > terribly visually stimmy which had tapered off for some time until > now. tonight, i took him to the park which he usually loves. he > went down the slide once and just lost it. he started crying and > sobbing for no apparent reason. he was smacking me, punching me and > pulling my hair. this child is usually so gentle and loving. it's > so upsetting. he has had his hand in his mouth, playing with his > tongue and his spit constantly. for a while there, he seemed to do > these things and after about a week of upping his zinc dosage, the > symtoms seemed to subside. it doesn't seem to be working this time. > > nick currently takes: > all 3 of houston's enzymes for 2yrs.as an alternative to diet. > diflucan 1x a day > primal defense 2x a day > magnesium citrate for constipation since starting LDN 1x a day > LDN, 3mg. at 11pm every night > coromega 1x a day > milk thistle 1x a day > valtrex 3x a day > brainchild's minerals and liquizinc. > he currently cannot tolerate any vitamins but will try again this > month. > > please help. i am beside myself. it's completely heartwrenching. > > thanks in advance, > tracey, proud mom to nick, 4 1/2 years old. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Tracey, Your description of what your son is going through fits my five year old daughter to a T ever since we started acylcovir two weeks ago-- loss of appetite, irritability, hand in mouth and all! (And here I thought the hand in mouth was because she just lost a baby tooth). WE have been on acyclovir for two weeks, but I just switched as of this evening to Valtrex (250 mg 2x/day for starters), because I was getting frustrated at the lack of gains and lots of regression we have seen since starting the acylcovir. My daughter was close to recovery, but in the last two weeks she has gone back about two years! (SHe even reversed her pronouns today.) We are about to spend vacation with my judgmental in-laws and I am very anxious about them seeing my daughter like this. Please let me know waht you decide to do, and what, if anything, helps. Please feel free to email me directly. IF you like, I will keep you posted as well. I am intrigued by the suggestion posted that LDN could cause loss of appetitite. My daughter has been on LDN since January. However, her appetite was fine until we started the acyclovir. Does anyoen know if the acyclovir (or Vlatrex) coudl somehow cause the LDN to work in a different way or be not needed, so that suddenly the LDN causes a loss of appetite? I am also intrigued by teh suggestion that excess calcium could cause the hand in mouth issue, by interfering with zinc. We have upped my daughter's calcium recenlty and changed to calcium citrate, as we are following hte LOD diet. So I guess I could try reducing her calcium to see if that gest her hand out of her mouth. (On the other hand, the hadn in mouth stim started with the acyclvoir, not with the increase of calcium). Have you done anything to increase NIck's calcium lately? Good luck to you. I really hope we get a breakthru! > > stan (or anyone who can help, i'm desperate), > > my son,nick (4 1/2 yrs. old) has been on valtrex since july 10th. i > also switched from nystatin to diflucan about a week prior to that. > he had an initial regression period that lasted for about 10 days. > he became stimmy, aggressive, hard to transistion and has had his > hands in his mouth a lot (even after upping his zinc dosage). after > the ten day period, he seemed to even out a bit except for the oral > fixation. on the 24th, i upped his dosage to 3x a day (250mg, 3x a > day) based on stan's advice. i didn't notice any noticable > regressions until the last few days. he's been very emotional, > aggressive, teary and angry at times. his yeast seems to be under > control because nick's first sign of yeast is trouble sleeping. > he's actually sleeping best right now... approx. 12 hours. he's > asleep by 8:15pm and i've had to wake him almost every morning for > school by 7:45. he wakes very happy and ready to go. > > another big concern of mine is his loss of appetite. he already has > a very self-restricting diet and has begun to eliminate even more > foods. i'm not sure if the valtrex is upsetting his stomach or just > causing a loss of appetite. i've also started him on milk thistle > in order to help support his liver throughout his treatment. > > what is going on with my son? i know that aggression is usually > bacteria for nick but he has been taking primal defense in place of > his usual culturelle since july 3rd. he seems to be doing well on > it. not sure if i should try upping his dosage of that or not.. i > know that sometimes when the yeast moves out, the bacteria moves > in. help? is this just the usual adjustment period?? i must say, > i haven't seen any gains to speak of. there could possibly be some > increase in speech but i'm not sure if that's because i'm trying > desperately to find some gains. > > i feel terrible. i hate to see him so out of sorts. he has become > terribly visually stimmy which had tapered off for some time until > now. tonight, i took him to the park which he usually loves. he > went down the slide once and just lost it. he started crying and > sobbing for no apparent reason. he was smacking me, punching me and > pulling my hair. this child is usually so gentle and loving. it's > so upsetting. he has had his hand in his mouth, playing with his > tongue and his spit constantly. for a while there, he seemed to do > these things and after about a week of upping his zinc dosage, the > symtoms seemed to subside. it doesn't seem to be working this time. > > nick currently takes: > all 3 of houston's enzymes for 2yrs.as an alternative to diet. > diflucan 1x a day > primal defense 2x a day > magnesium citrate for constipation since starting LDN 1x a day > LDN, 3mg. at 11pm every night > coromega 1x a day > milk thistle 1x a day > valtrex 3x a day > brainchild's minerals and liquizinc. > he currently cannot tolerate any vitamins but will try again this > month. > > please help. i am beside myself. it's completely heartwrenching. > > thanks in advance, > tracey, proud mom to nick, 4 1/2 years old. > Quote Link to comment Share on other sites More sharing options...
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