Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 My son does this too. I call it Strike a Pose stimming. I believe it’s a visual stim. Many people have seen CLO help this behavior although I am not able to get enough in him yet. Every time I am able to move it up a little the strike a pose does diminish some. Crainosacral therapy has also helped us with this in the past and I can totally see my son needs it again. Good luck, From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of curemyreed Sent: Friday, August 18, 2006 11:41 AM mb12 valtrex Subject: Hand Gazing Several people on another group suggested this might be viral in cause, so I thought I would ask if any listmates here have any thoughts on this.... BTW, my daughter has been on Valtrex 500 mg. twice a day since May 7th. (I know 250 mg. 3x daily is better, but this is the best we can get compliance with.) My daughter brings her palm up to about 8 inches in front of her face and stares at it for a moment or two. This has increased drastically recently. It's like she can see something there no one else can see! I think this point is significant....she had NEVER done this behavior prior to starting chelation one year ago and the behavior started right when chelation started. To me it must be related somehow, I just don't know how or WHY it would increase. I've been patiently ignoring it as I figured when all the metals have moved out she will stop. But we went to an event last weekend and she could hardly walk because the hand was coming up so, so often and blocking her field of vision! Anyone have thoughts on this? Anyone else's child do this? Thanks, Penni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 My son does this too. I call it Strike a Pose stimming. I believe it’s a visual stim. Many people have seen CLO help this behavior although I am not able to get enough in him yet. Every time I am able to move it up a little the strike a pose does diminish some. Crainosacral therapy has also helped us with this in the past and I can totally see my son needs it again. Good luck, From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of curemyreed Sent: Friday, August 18, 2006 11:41 AM mb12 valtrex Subject: Hand Gazing Several people on another group suggested this might be viral in cause, so I thought I would ask if any listmates here have any thoughts on this.... BTW, my daughter has been on Valtrex 500 mg. twice a day since May 7th. (I know 250 mg. 3x daily is better, but this is the best we can get compliance with.) My daughter brings her palm up to about 8 inches in front of her face and stares at it for a moment or two. This has increased drastically recently. It's like she can see something there no one else can see! I think this point is significant....she had NEVER done this behavior prior to starting chelation one year ago and the behavior started right when chelation started. To me it must be related somehow, I just don't know how or WHY it would increase. I've been patiently ignoring it as I figured when all the metals have moved out she will stop. But we went to an event last weekend and she could hardly walk because the hand was coming up so, so often and blocking her field of vision! Anyone have thoughts on this? Anyone else's child do this? Thanks, Penni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 My youngest, age 3, started doing this quite a few weeks ago. He was also spinning more and looking at his fingers. In our case, I think it has to do w/chelation. He is on DMSA suppositories and NDF Plus. I removed the NDF Plus and the hand gazing and spinning has decreased significantly. I think his little body was just detoxing too fast. By the way, he also has been chewing everything in sight lately, his hands, books, my hair, his clothes, etc. We had per our DAN decreased his zinc because he was very high. Well, I think he's low again because I increased it and this has improved also. He's still mouthy but nowhere near the intensity as before. Dana R. -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of curemyreedSent: Friday, August 18, 2006 11:41 AMmb12 valtrex Subject: Hand Gazing Several people on another group suggested this might be viral in cause, so I thought I would ask if any listmates here have any thoughts on this....BTW, my daughter has been on Valtrex 500 mg. twice a day since May 7th. (I know 250 mg. 3x daily is better, but this is the best we can get compliance with.)My daughter brings her palm up to about 8 inches in front of her face and stares at it for a moment or two. This has increased drastically recently. It's like she can see something there no one else can see! I think this point is significant....she had NEVER done this behavior prior to starting chelation one year ago and the behavior started right when chelation started. To me it must be related somehow, I just don't know how or WHY it would increase. I've been patiently ignoring it as I figured when all the metals have moved out she will stop. But we went to an event last weekend and she could hardly walk because the hand was coming up so, so often and blocking her field of vision!Anyone have thoughts on this? Anyone else's child do this?Thanks,Penni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 My youngest, age 3, started doing this quite a few weeks ago. He was also spinning more and looking at his fingers. In our case, I think it has to do w/chelation. He is on DMSA suppositories and NDF Plus. I removed the NDF Plus and the hand gazing and spinning has decreased significantly. I think his little body was just detoxing too fast. By the way, he also has been chewing everything in sight lately, his hands, books, my hair, his clothes, etc. We had per our DAN decreased his zinc because he was very high. Well, I think he's low again because I increased it and this has improved also. He's still mouthy but nowhere near the intensity as before. Dana R. -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of curemyreedSent: Friday, August 18, 2006 11:41 AMmb12 valtrex Subject: Hand Gazing Several people on another group suggested this might be viral in cause, so I thought I would ask if any listmates here have any thoughts on this....BTW, my daughter has been on Valtrex 500 mg. twice a day since May 7th. (I know 250 mg. 3x daily is better, but this is the best we can get compliance with.)My daughter brings her palm up to about 8 inches in front of her face and stares at it for a moment or two. This has increased drastically recently. It's like she can see something there no one else can see! I think this point is significant....she had NEVER done this behavior prior to starting chelation one year ago and the behavior started right when chelation started. To me it must be related somehow, I just don't know how or WHY it would increase. I've been patiently ignoring it as I figured when all the metals have moved out she will stop. But we went to an event last weekend and she could hardly walk because the hand was coming up so, so often and blocking her field of vision!Anyone have thoughts on this? Anyone else's child do this?Thanks,Penni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Yes, yes, our son is doing that too! And I associate it with anti-viral treatment as well. I cannot relate to experiences with Valtrex, because our Dan! doctor has that in out "Things to try next" list, among HBOT and others. We do give him natural agents though, and I have observed that he is doing this about an hour or two after taking GSE. Sorry if this might not be of much help, but just to let you know that I second your opinion about it being related to a viral issue. Best wishes, Hand Gazing Several people on another group suggested this might be viral in cause, so I thought I would ask if any listmates here have any thoughts on this....BTW, my daughter has been on Valtrex 500 mg. twice a day since May 7th. (I know 250 mg. 3x daily is better, but this is the best we can get compliance with.)My daughter brings her palm up to about 8 inches in front of her face and stares at it for a moment or two. This has increased drastically recently. It's like she can see something there no one else can see! I think this point is significant....she had NEVER done this behavior prior to starting chelation one year ago and the behavior started right when chelation started. To me it must be related somehow, I just don't know how or WHY it would increase. I've been patiently ignoring it as I figured when all the metals have moved out she will stop. But we went to an event last weekend and she could hardly walk because the hand was coming up so, so often and blocking her field of vision!Anyone have thoughts on this? Anyone else's child do this?Thanks,Penni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Yes, yes, our son is doing that too! And I associate it with anti-viral treatment as well. I cannot relate to experiences with Valtrex, because our Dan! doctor has that in out "Things to try next" list, among HBOT and others. We do give him natural agents though, and I have observed that he is doing this about an hour or two after taking GSE. Sorry if this might not be of much help, but just to let you know that I second your opinion about it being related to a viral issue. Best wishes, Hand Gazing Several people on another group suggested this might be viral in cause, so I thought I would ask if any listmates here have any thoughts on this....BTW, my daughter has been on Valtrex 500 mg. twice a day since May 7th. (I know 250 mg. 3x daily is better, but this is the best we can get compliance with.)My daughter brings her palm up to about 8 inches in front of her face and stares at it for a moment or two. This has increased drastically recently. It's like she can see something there no one else can see! I think this point is significant....she had NEVER done this behavior prior to starting chelation one year ago and the behavior started right when chelation started. To me it must be related somehow, I just don't know how or WHY it would increase. I've been patiently ignoring it as I figured when all the metals have moved out she will stop. But we went to an event last weekend and she could hardly walk because the hand was coming up so, so often and blocking her field of vision!Anyone have thoughts on this? Anyone else's child do this?Thanks,Penni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim. This is one of those things where I so deeply wish someone would say, " OH! That is because of so-and-so. Here's what will correct it. " It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time. Penni > > Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this.... > > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.) > > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision! > > Anyone have thoughts on this? Anyone else's child do this? > Thanks, > Penni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim. This is one of those things where I so deeply wish someone would say, " OH! That is because of so-and-so. Here's what will correct it. " It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time. Penni > > Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this.... > > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.) > > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision! > > Anyone have thoughts on this? Anyone else's child do this? > Thanks, > Penni > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Hi guys, I am a newbie here. Just went to our first conference in Utah last week, and currently my 6 year old son is not on any treatments. We will be seeing a DAN doc soon. Adam has done this on and off for a long time, but it is not the palm he stares at, it is the back of his hand. (as if he were admiring his manicure.) We are excited to see the doc and start to help him. Peace, Tina Re: Hand Gazing Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim.This is one of those things where I so deeply wish someone would say, "OH! That is because of so-and-so. Here's what will correct it." It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time.Penni>> Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this....> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.)> > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision!> > Anyone have thoughts on this? Anyone else's child do this?> Thanks,> Penni> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Hi guys, I am a newbie here. Just went to our first conference in Utah last week, and currently my 6 year old son is not on any treatments. We will be seeing a DAN doc soon. Adam has done this on and off for a long time, but it is not the palm he stares at, it is the back of his hand. (as if he were admiring his manicure.) We are excited to see the doc and start to help him. Peace, Tina Re: Hand Gazing Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim.This is one of those things where I so deeply wish someone would say, "OH! That is because of so-and-so. Here's what will correct it." It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time.Penni>> Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this....> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.)> > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision!> > Anyone have thoughts on this? Anyone else's child do this?> Thanks,> Penni> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Penni, We are thinking of starting our son on Bethanacol too, as he has hand/eye stims too. How is it administered for your daughter? Is it oral? I have heard that you have to be observed in the doctors office for an hour after the first dose is given. Is this what you do or do you just have a prescription for oral. I am asking, as our next appointment is scheduled to be a phone appointment and I'm wondering if I should just take him up there. It seems like someone else on some group said their DAN just gave them a prescription. Thanks for any info. Nickie -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of curemyreedSent: Friday, August 18, 2006 12:15 PMmb12 valtrex Subject: Re: Hand Gazing Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim.This is one of those things where I so deeply wish someone would say, "OH! That is because of so-and-so. Here's what will correct it." It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time.Penni>> Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this....> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.)> > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision!> > Anyone have thoughts on this? Anyone else's child do this?> Thanks,> Penni> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Penni, We are thinking of starting our son on Bethanacol too, as he has hand/eye stims too. How is it administered for your daughter? Is it oral? I have heard that you have to be observed in the doctors office for an hour after the first dose is given. Is this what you do or do you just have a prescription for oral. I am asking, as our next appointment is scheduled to be a phone appointment and I'm wondering if I should just take him up there. It seems like someone else on some group said their DAN just gave them a prescription. Thanks for any info. Nickie -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of curemyreedSent: Friday, August 18, 2006 12:15 PMmb12 valtrex Subject: Re: Hand Gazing Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim.This is one of those things where I so deeply wish someone would say, "OH! That is because of so-and-so. Here's what will correct it." It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time.Penni>> Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this....> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.)> > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision!> > Anyone have thoughts on this? Anyone else's child do this?> Thanks,> Penni> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi, Nickie. Here's is a good website to understand about G-alpha protein abnormalities and Dr. Megson's Bethanechol and CLO protocol. www.springboard4health.com/notebook/health_autism2.html Our DAN! felt a trial of Bethanechol was appropriate since my daughter had significant visual stimming. Please note that the developer of the protocol, Dr. Megson, is firm that the child be established on cod liver oil for 2-3 months BEFORE starting the Bethanechol. (We didn't need to wait as she had been taking it for the previous year.) The prescription was written to titrate up over about a 10 day period; i.e. " .25 ml once daily x 3 days, then twice daily, then increase by .25 ml x 5 days " . The doc gave me the caveat that on the day I noted the stims had stopped, stay at that dose and don't move up---that would be the dose necessary for her. It is one of the very few supps/meds that either works, or it doesn't. If your child hasn't lost the visual stims after titrating up to full dose, then the medication is not effective for your child. Many do not need to go to the maximum dose because the behavior stops on one of the days earlier in the 10 day period. I think that is why it is so important to have been on the CLO in a pre-loading phase...you do not want to be wondering if it had worked had you done it " right " . We did not do the initial dose in his office, but I am a nurse and he is aware and works with me in shorthand sorta---don't know what the standard is for that. Bethanechol is cheap. (WHAT?!!! A CHEAP MED FOR OUR KIDS?!!!) I use a liquid as mine doesn't swallow pills yet. I order it with tangerine flavor from Wellness Pharmacy. Theirs is GFCF...don't know about other pharmacies. It is $15 per month. HTH! Penni > > > > Several people on another group suggested this might be viral in > > cause, so I thought I would ask if any listmates here have any > > thoughts on this.... > > > > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > > 7th. (I know 250 mg. 3x daily is better, but this is the best we > can > > get compliance with.) > > > > My daughter brings her palm up to about 8 inches in front of her > face > > and stares at it for a moment or two. This has increased > drastically > > recently. It's like she can see something there no one else can > see! > > I think this point is significant....she had NEVER done this > behavior > > prior to starting chelation one year ago and the behavior started > > right when chelation started. To me it must be related somehow, I > > just don't know how or WHY it would increase. I've been patiently > > ignoring it as I figured when all the metals have moved out she > will > > stop. But we went to an event last weekend and she could hardly > walk > > because the hand was coming up so, so often and blocking her field > of > > vision! > > > > Anyone have thoughts on this? Anyone else's child do this? > > Thanks, > > Penni > > > > > > > -- > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: 8/17/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Who did you find to presecribe the bethanechol? We have just started the vit A protocol. Thanks, Re: Hand Gazing Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim.This is one of those things where I so deeply wish someone would say, "OH! That is because of so-and-so. Here's what will correct it." It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time.Penni>> Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this....> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.)> > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision!> > Anyone have thoughts on this? Anyone else's child do this?> Thanks,> Penni> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Who did you find to presecribe the bethanechol? We have just started the vit A protocol. Thanks, Re: Hand Gazing Sheeew! I'm not the only person on this planet with a child doing this...what a relief! I am reading everyone's posts with interest, thank you for sharing. BTW, for us it is not a visual stim. She had the distinct cutting eyes sideways, putting things right up to her eyes, etc. She has been on CLO forever, but we added Bethanechol and titrated it up over a week. At the end of the week ALL of those visual stims were gone and have stayed away while maintaining the daily med since this spring. The hand gazing was there before, during, and since which leads me to guess it is not a visual stim.This is one of those things where I so deeply wish someone would say, "OH! That is because of so-and-so. Here's what will correct it." It is the frustrating unknown and blazing new pathways of autism that I get fed up with from time to time.Penni>> Several people on another group suggested this might be viral in > cause, so I thought I would ask if any listmates here have any > thoughts on this....> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May > 7th. (I know 250 mg. 3x daily is better, but this is the best we can > get compliance with.)> > My daughter brings her palm up to about 8 inches in front of her face > and stares at it for a moment or two. This has increased drastically > recently. It's like she can see something there no one else can see! > I think this point is significant....she had NEVER done this behavior > prior to starting chelation one year ago and the behavior started > right when chelation started. To me it must be related somehow, I > just don't know how or WHY it would increase. I've been patiently > ignoring it as I figured when all the metals have moved out she will > stop. But we went to an event last weekend and she could hardly walk > because the hand was coming up so, so often and blocking her field of > vision!> > Anyone have thoughts on this? Anyone else's child do this?> Thanks,> Penni> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 thanks penni for that great explanation. who is your DAn dr? Re: Hand Gazing Hi, Nickie. Here's is a good website to understand about G-alpha protein abnormalities and Dr. Megson's Bethanechol and CLO protocol.www.springboard4health.com/notebook/health_autism2.htmlOur DAN! felt a trial of Bethanechol was appropriate since my daughter had significant visual stimming. Please note that the developer of the protocol, Dr. Megson, is firm that the child be established on cod liver oil for 2-3 months BEFORE starting the Bethanechol. (We didn't need to wait as she had been taking it for the previous year.) The prescription was written to titrate up over about a 10 day period; i.e. ".25 ml once daily x 3 days, then twice daily, then increase by .25 ml x 5 days". The doc gave me the caveat that on the day I noted the stims had stopped, stay at that dose and don't move up---that would be the dose necessary for her. It is one of the very few supps/meds that either works, or it doesn't. If your child hasn't lost the visual stims after titrating up to full dose, then the medication is not effective for your child. Many do not need to go to the maximum dose because the behavior stops on one of the days earlier in the 10 day period. I think that is why it is so important to have been on the CLO in a pre-loading phase...you do not want to be wondering if it had worked had you done it "right". We did not do the initial dose in his office, but I am a nurse and he is aware and works with me in shorthand sorta---don't know what the standard is for that.Bethanechol is cheap. (WHAT?!!! A CHEAP MED FOR OUR KIDS?!!!) I use a liquid as mine doesn't swallow pills yet. I order it with tangerine flavor from Wellness Pharmacy. Theirs is GFCF...don't know about other pharmacies. It is $15 per month.HTH! Penni> >> > Several people on another group suggested this might be viral in> > cause, so I thought I would ask if any listmates here have any> > thoughts on this....> >> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May> > 7th. (I know 250 mg. 3x daily is better, but this is the best we> can> > get compliance with.)> >> > My daughter brings her palm up to about 8 inches in front of her> face> > and stares at it for a moment or two. This has increased> drastically> > recently. It's like she can see something there no one else can> see!> > I think this point is significant....she had NEVER done this> behavior> > prior to starting chelation one year ago and the behavior started> > right when chelation started. To me it must be related somehow, I> > just don't know how or WHY it would increase. I've been patiently> > ignoring it as I figured when all the metals have moved out she> will> > stop. But we went to an event last weekend and she could hardly> walk> > because the hand was coming up so, so often and blocking her field> of> > vision!> >> > Anyone have thoughts on this? Anyone else's child do this?> > Thanks,> > Penni> >> > > > > --> No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: 8/17/2006> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 thanks penni for that great explanation. who is your DAn dr? Re: Hand Gazing Hi, Nickie. Here's is a good website to understand about G-alpha protein abnormalities and Dr. Megson's Bethanechol and CLO protocol.www.springboard4health.com/notebook/health_autism2.htmlOur DAN! felt a trial of Bethanechol was appropriate since my daughter had significant visual stimming. Please note that the developer of the protocol, Dr. Megson, is firm that the child be established on cod liver oil for 2-3 months BEFORE starting the Bethanechol. (We didn't need to wait as she had been taking it for the previous year.) The prescription was written to titrate up over about a 10 day period; i.e. ".25 ml once daily x 3 days, then twice daily, then increase by .25 ml x 5 days". The doc gave me the caveat that on the day I noted the stims had stopped, stay at that dose and don't move up---that would be the dose necessary for her. It is one of the very few supps/meds that either works, or it doesn't. If your child hasn't lost the visual stims after titrating up to full dose, then the medication is not effective for your child. Many do not need to go to the maximum dose because the behavior stops on one of the days earlier in the 10 day period. I think that is why it is so important to have been on the CLO in a pre-loading phase...you do not want to be wondering if it had worked had you done it "right". We did not do the initial dose in his office, but I am a nurse and he is aware and works with me in shorthand sorta---don't know what the standard is for that.Bethanechol is cheap. (WHAT?!!! A CHEAP MED FOR OUR KIDS?!!!) I use a liquid as mine doesn't swallow pills yet. I order it with tangerine flavor from Wellness Pharmacy. Theirs is GFCF...don't know about other pharmacies. It is $15 per month.HTH! Penni> >> > Several people on another group suggested this might be viral in> > cause, so I thought I would ask if any listmates here have any> > thoughts on this....> >> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May> > 7th. (I know 250 mg. 3x daily is better, but this is the best we> can> > get compliance with.)> >> > My daughter brings her palm up to about 8 inches in front of her> face> > and stares at it for a moment or two. This has increased> drastically> > recently. It's like she can see something there no one else can> see!> > I think this point is significant....she had NEVER done this> behavior> > prior to starting chelation one year ago and the behavior started> > right when chelation started. To me it must be related somehow, I> > just don't know how or WHY it would increase. I've been patiently> > ignoring it as I figured when all the metals have moved out she> will> > stop. But we went to an event last weekend and she could hardly> walk> > because the hand was coming up so, so often and blocking her field> of> > vision!> >> > Anyone have thoughts on this? Anyone else's child do this?> > Thanks,> > Penni> >> > > > > --> No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: 8/17/2006> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi, . You & I are both in the Houston area, and I wish I could say it was someone in driving range, but it isn't. We use Dr. Kucera who is in Colorado Springs. We fly there once a year, then do everything further by phone. I took to the traditional pedi in Houston that I had heard such good things about yesterday and he was WONDERFUL, if you need a good doc for regular kid things & not autism treatment. He was accepting of our choice not to immunize further and is willing to do routine, standard labs as well as draw & spin the blood we need to send off to the specialized labs. If you are interested in knowing his contact info, let me know. Penni > > > > > > Several people on another group suggested this might be viral > in > > > cause, so I thought I would ask if any listmates here have any > > > thoughts on this.... > > > > > > BTW, my daughter has been on Valtrex 500 mg. twice a day since > May > > > 7th. (I know 250 mg. 3x daily is better, but this is the best > we > > can > > > get compliance with.) > > > > > > My daughter brings her palm up to about 8 inches in front of > her > > face > > > and stares at it for a moment or two. This has increased > > drastically > > > recently. It's like she can see something there no one else can > > see! > > > I think this point is significant....she had NEVER done this > > behavior > > > prior to starting chelation one year ago and the behavior > started > > > right when chelation started. To me it must be related > somehow, I > > > just don't know how or WHY it would increase. I've been > patiently > > > ignoring it as I figured when all the metals have moved out she > > will > > > stop. But we went to an event last weekend and she could hardly > > walk > > > because the hand was coming up so, so often and blocking her > field > > of > > > vision! > > > > > > Anyone have thoughts on this? Anyone else's child do this? > > > Thanks, > > > Penni > > > > > > > > > > > > > -- > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: > 8/17/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi, . You & I are both in the Houston area, and I wish I could say it was someone in driving range, but it isn't. We use Dr. Kucera who is in Colorado Springs. We fly there once a year, then do everything further by phone. I took to the traditional pedi in Houston that I had heard such good things about yesterday and he was WONDERFUL, if you need a good doc for regular kid things & not autism treatment. He was accepting of our choice not to immunize further and is willing to do routine, standard labs as well as draw & spin the blood we need to send off to the specialized labs. If you are interested in knowing his contact info, let me know. Penni > > > > > > Several people on another group suggested this might be viral > in > > > cause, so I thought I would ask if any listmates here have any > > > thoughts on this.... > > > > > > BTW, my daughter has been on Valtrex 500 mg. twice a day since > May > > > 7th. (I know 250 mg. 3x daily is better, but this is the best > we > > can > > > get compliance with.) > > > > > > My daughter brings her palm up to about 8 inches in front of > her > > face > > > and stares at it for a moment or two. This has increased > > drastically > > > recently. It's like she can see something there no one else can > > see! > > > I think this point is significant....she had NEVER done this > > behavior > > > prior to starting chelation one year ago and the behavior > started > > > right when chelation started. To me it must be related > somehow, I > > > just don't know how or WHY it would increase. I've been > patiently > > > ignoring it as I figured when all the metals have moved out she > > will > > > stop. But we went to an event last weekend and she could hardly > > walk > > > because the hand was coming up so, so often and blocking her > field > > of > > > vision! > > > > > > Anyone have thoughts on this? Anyone else's child do this? > > > Thanks, > > > Penni > > > > > > > > > > > > > -- > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: > 8/17/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Thanks for the information Penni. Our son has been on CLO for almost 2 1/2 years now, so we would probably be able to jump right on board. We have our appointment on Wednesday, so I will talk to her about it. If we can stop some of his visual stims, it would make such a difference. Thanks again. Nickie -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of curemyreedSent: Saturday, August 19, 2006 2:18 AMmb12 valtrex Subject: Re: Hand Gazing Hi, Nickie. Here's is a good website to understand about G-alpha protein abnormalities and Dr. Megson's Bethanechol and CLO protocol.www.springboard4health.com/notebook/health_autism2.htmlOur DAN! felt a trial of Bethanechol was appropriate since my daughter had significant visual stimming. Please note that the developer of the protocol, Dr. Megson, is firm that the child be established on cod liver oil for 2-3 months BEFORE starting the Bethanechol. (We didn't need to wait as she had been taking it for the previous year.) The prescription was written to titrate up over about a 10 day period; i.e. ".25 ml once daily x 3 days, then twice daily, then increase by .25 ml x 5 days". The doc gave me the caveat that on the day I noted the stims had stopped, stay at that dose and don't move up---that would be the dose necessary for her. It is one of the very few supps/meds that either works, or it doesn't. If your child hasn't lost the visual stims after titrating up to full dose, then the medication is not effective for your child. Many do not need to go to the maximum dose because the behavior stops on one of the days earlier in the 10 day period. I think that is why it is so important to have been on the CLO in a pre-loading phase...you do not want to be wondering if it had worked had you done it "right". We did not do the initial dose in his office, but I am a nurse and he is aware and works with me in shorthand sorta---don't know what the standard is for that.Bethanechol is cheap. (WHAT?!!! A CHEAP MED FOR OUR KIDS?!!!) I use a liquid as mine doesn't swallow pills yet. I order it with tangerine flavor from Wellness Pharmacy. Theirs is GFCF...don't know about other pharmacies. It is $15 per month.HTH! Penni> >> > Several people on another group suggested this might be viral in> > cause, so I thought I would ask if any listmates here have any> > thoughts on this....> >> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May> > 7th. (I know 250 mg. 3x daily is better, but this is the best we> can> > get compliance with.)> >> > My daughter brings her palm up to about 8 inches in front of her> face> > and stares at it for a moment or two. This has increased> drastically> > recently. It's like she can see something there no one else can> see!> > I think this point is significant....she had NEVER done this> behavior> > prior to starting chelation one year ago and the behavior started> > right when chelation started. To me it must be related somehow, I> > just don't know how or WHY it would increase. I've been patiently> > ignoring it as I figured when all the metals have moved out she> will> > stop. But we went to an event last weekend and she could hardly> walk> > because the hand was coming up so, so often and blocking her field> of> > vision!> >> > Anyone have thoughts on this? Anyone else's child do this?> > Thanks,> > Penni> >> > > > > --> No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: 8/17/2006> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Thanks for the information Penni. Our son has been on CLO for almost 2 1/2 years now, so we would probably be able to jump right on board. We have our appointment on Wednesday, so I will talk to her about it. If we can stop some of his visual stims, it would make such a difference. Thanks again. Nickie -----Original Message-----From: mb12 valtrex [mailto:mb12 valtrex ]On Behalf Of curemyreedSent: Saturday, August 19, 2006 2:18 AMmb12 valtrex Subject: Re: Hand Gazing Hi, Nickie. Here's is a good website to understand about G-alpha protein abnormalities and Dr. Megson's Bethanechol and CLO protocol.www.springboard4health.com/notebook/health_autism2.htmlOur DAN! felt a trial of Bethanechol was appropriate since my daughter had significant visual stimming. Please note that the developer of the protocol, Dr. Megson, is firm that the child be established on cod liver oil for 2-3 months BEFORE starting the Bethanechol. (We didn't need to wait as she had been taking it for the previous year.) The prescription was written to titrate up over about a 10 day period; i.e. ".25 ml once daily x 3 days, then twice daily, then increase by .25 ml x 5 days". The doc gave me the caveat that on the day I noted the stims had stopped, stay at that dose and don't move up---that would be the dose necessary for her. It is one of the very few supps/meds that either works, or it doesn't. If your child hasn't lost the visual stims after titrating up to full dose, then the medication is not effective for your child. Many do not need to go to the maximum dose because the behavior stops on one of the days earlier in the 10 day period. I think that is why it is so important to have been on the CLO in a pre-loading phase...you do not want to be wondering if it had worked had you done it "right". We did not do the initial dose in his office, but I am a nurse and he is aware and works with me in shorthand sorta---don't know what the standard is for that.Bethanechol is cheap. (WHAT?!!! A CHEAP MED FOR OUR KIDS?!!!) I use a liquid as mine doesn't swallow pills yet. I order it with tangerine flavor from Wellness Pharmacy. Theirs is GFCF...don't know about other pharmacies. It is $15 per month.HTH! Penni> >> > Several people on another group suggested this might be viral in> > cause, so I thought I would ask if any listmates here have any> > thoughts on this....> >> > BTW, my daughter has been on Valtrex 500 mg. twice a day since May> > 7th. (I know 250 mg. 3x daily is better, but this is the best we> can> > get compliance with.)> >> > My daughter brings her palm up to about 8 inches in front of her> face> > and stares at it for a moment or two. This has increased> drastically> > recently. It's like she can see something there no one else can> see!> > I think this point is significant....she had NEVER done this> behavior> > prior to starting chelation one year ago and the behavior started> > right when chelation started. To me it must be related somehow, I> > just don't know how or WHY it would increase. I've been patiently> > ignoring it as I figured when all the metals have moved out she> will> > stop. But we went to an event last weekend and she could hardly> walk> > because the hand was coming up so, so often and blocking her field> of> > vision!> >> > Anyone have thoughts on this? Anyone else's child do this?> > Thanks,> > Penni> >> > > > > --> No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.405 / Virus Database: 268.11.2/422 - Release Date: 8/17/2006> Quote Link to comment Share on other sites More sharing options...
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