Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Back arching is common with reflux, and is also common in children with neurological differences, such as CP or CHARGE. Dylan's CST has helped in many ways. We did not use it the first two years when his arching was most common, so I can't say from experience if it would help. Some CHARGE kids also arch when you hold them, because they want to change their position so they can see better, due to their colobomas (upside down, facing outwards instead of over the shoulder etc). The trick with Cranial sacral is finding someone who is really good at it, lives close by, works well for your child as well as finding insurance to pay for it. (Some therapists will do some CST work. Because Dylan's DO combines many forms of manipulations based on what he needs, I think he gets a better response.) Dylan sees his doctor at least once a month. Depending on what is happening he can go twice a month and RARELY weekly. We pay privately and it costs us $100 a visit. I wish insurance would pay, because I am convinced it would save money on other treatments they would be paying for down the road, such as scoliosis treatment, seizures, behavioral meds etc. I think the only risk for Dylan is overtaxing his nervous system. Kim L > I've sure learned lots of new " stuff " today. > > I'm realy interested in the cranial sacral therapy. Do you think or > have you had any experience with it as far as " back arching " ? After > reading about it on the internet and watchin the short video it sure > doesn't appear as though it would cause any harm. There are also > some sensory issues that appear to have a bearing on swallowing or > possibly a texture issue. > > How often do you have or need treatments? There are already so many > doctor appointments not sure my suggestion to try still something > else will " sit " with my daughter. > > Guess I should have mentioned to start off, I'm the grandma (long > distance grandma) and not the parent. > > Read the post everyday but since I'm not hands on it is hard to post > intellegent questions. > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Simon, What actually happens at this type of therapy? My son Mark has been really into the head slapping again. It is so frustrating to watch! He is now 20 and the behavior is not pleasant to say the least. He does it for a variety of triggers. And sometimes we have NO IDEA what provokes it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 Simon, What actually happens at this type of therapy? My son Mark has been really into the head slapping again. It is so frustrating to watch! He is now 20 and the behavior is not pleasant to say the least. He does it for a variety of triggers. And sometimes we have NO IDEA what provokes it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Kim Your comments about Dylans tic reducing after cranial sacral therapy made me think about who recently has been slapping her face a little too much for comfort. She goes as Flo has posted before regularly for sacral cranial therapy. Since taking her yesterday morning for treatment her slapping has reduced dramatically and is purely token (she goes for a number of reasons which have varied over time). Hopefully this will continue. Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Kim Your comments about Dylans tic reducing after cranial sacral therapy made me think about who recently has been slapping her face a little too much for comfort. She goes as Flo has posted before regularly for sacral cranial therapy. Since taking her yesterday morning for treatment her slapping has reduced dramatically and is purely token (she goes for a number of reasons which have varied over time). Hopefully this will continue. Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Simon, Whatever it is that happens when Dylan is " wild " with spinning, hitting etc; I feel positive is neurologically driven in him. The cranial sacral therapy really helps him get back on track, but does not prevent the cycles. We have been going for 6 years. With the addition of the involuntary muscle movements, which they now think were ian seizures and not tics, I know we need to try to find something that will keep it happening in the first place. I will be contacting the Handle Institute on Monday and trying to get in ASAP. Adding seizures on top of his already vulnerable nervous system is just too much for him to have to cope with and still be able to be engaged with people and learn. Kim > Kim > > Your comments about Dylans tic reducing after cranial sacral therapy made me > think about who recently has been slapping her face a little too > much for comfort. She goes as Flo has posted before regularly for sacral > cranial therapy. Since taking her yesterday morning for treatment her > slapping has reduced dramatically and is purely token (she goes for a number > of reasons which have varied over time). Hopefully this will continue. > > Simon > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Simon, Whatever it is that happens when Dylan is " wild " with spinning, hitting etc; I feel positive is neurologically driven in him. The cranial sacral therapy really helps him get back on track, but does not prevent the cycles. We have been going for 6 years. With the addition of the involuntary muscle movements, which they now think were ian seizures and not tics, I know we need to try to find something that will keep it happening in the first place. I will be contacting the Handle Institute on Monday and trying to get in ASAP. Adding seizures on top of his already vulnerable nervous system is just too much for him to have to cope with and still be able to be engaged with people and learn. Kim > Kim > > Your comments about Dylans tic reducing after cranial sacral therapy made me > think about who recently has been slapping her face a little too > much for comfort. She goes as Flo has posted before regularly for sacral > cranial therapy. Since taking her yesterday morning for treatment her > slapping has reduced dramatically and is purely token (she goes for a number > of reasons which have varied over time). Hopefully this will continue. > > Simon > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 There was a good article in the Globe and Mail Jan 3 on this therapy,contact lmclaren@... for an electronic copy if she will. I witnessed craniosacral therapy in Michigan, when Judith Bluestone was doing HANDLE workshops. Micheal's MOM let me observe all his treatment sessions. Jill worked with Micheal (CHARGEer), and was " multi-therapist " trained in many disciplines, inluding HANDLE (neurodevelopmental exercises) and cranialsacral therapy. Many of the children with CHARGE have a funny-shaped cranial structure, with more of a frontal lobe cranial area and square looking skull. But the " lumpy " head seems common as well. Micheal had a few of these lumps. With the release of pressure through gentil manipulations by Jill, Micheal fell back, and for the fist time in the session was calm and you could see an effect on his energy and responsiveness. They let me feel his skull, and the lumps remarkably were flattened. I have experienced cranial therapy myself, by through a chiropractor/applied kinesiologist (totally different approach from the norm of chiropractic). They do gentil manipulation, slight pressure, gentil massage, laser, and muscle testing for efficiency throughout the body. This therapy also started in Michigan, and medical doctors in Austria are being trained in these approaches. Just a word of caution, I know from what is happening in Ontario (the push against natural therapy from mainstream medical doctors,pharmacutical companies AND Liberal gov't), don't expect a regular physician to recommend any of this type of therapy. Ann Gloyn Deafblind/Spec Ed Canada > Simon, > What actually happens at this type of therapy? My son Mark has > been really into the head slapping again. It is so frustrating to watch! He is > now 20 and the behavior is not pleasant to say the least. He does it for a > variety of triggers. And sometimes we have NO IDEA what provokes it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 One of my criteria for Dylan's pediatrician is they have to respect that I will look at alternative approaches. I feel Dylan needs a balance between the two approaches. I particularly value Dylan's MD for diagnosing problems, but because of the chronic effects of CHARGE, some things he can not easily fix, so I look to alternative areas for support in those areas. He knows he may recommend one thing and I may choose not to do it without an alternative try first. It is not that I discount his expertise, it is just that I look to many for advice, then find the match that I think best suits my child. It is a rare doctor who is comfortable with this, but they are worth their weight in gold. Rarely he will say we NEED to do this, and rarely I will say we NEED to do this and we respect each other and trust these times. Kim L > There was a good article in the Globe and Mail Jan 3 on this > therapy,contact lmclaren@... for an electronic copy if she > will. > I witnessed craniosacral therapy in Michigan, when Judith Bluestone > was doing HANDLE workshops. Micheal's MOM let me observe all his > treatment sessions. Jill worked with Micheal (CHARGEer), and was > " multi-therapist " trained in many disciplines, inluding HANDLE > (neurodevelopmental exercises) and cranialsacral therapy. Many of the > children with CHARGE have a funny-shaped cranial structure, with more > of a frontal lobe cranial area and square looking skull. But the > " lumpy " head seems common as well. Micheal had a few of these lumps. > With the release of pressure through gentil manipulations by Jill, > Micheal fell back, and for the fist time in the session was calm and > you could see an effect on his energy and responsiveness. They let me > feel his skull, and the lumps remarkably were flattened. > I have experienced cranial therapy myself, by through a > chiropractor/applied kinesiologist (totally different approach from > the norm of chiropractic). They do gentil manipulation, slight > pressure, gentil massage, laser, and muscle testing for efficiency > throughout the body. This therapy also started in Michigan, and > medical doctors in Austria are being trained in these approaches. > Just a word of caution, I know from what is happening in Ontario (the > push against natural therapy from mainstream medical > doctors,pharmacutical companies AND Liberal gov't), don't expect a > regular physician to recommend any of this type of therapy. > Ann Gloyn > Deafblind/Spec Ed > Canada > > > >> Simon, >> What actually happens at this type of therapy? My son > Mark has >> been really into the head slapping again. It is so frustrating to > watch! He is >> now 20 and the behavior is not pleasant to say the least. He does it > for a >> variety of triggers. And sometimes we have NO IDEA what provokes it. > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.