Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 Awesome!! It is so great to have a Doc that listens. Cranial Sacral therapy is wonderful. I am glad she responds so well and the therapist sounds fab. a mom to 8yr CHARGEr and Quintin 5yr --- Turk22082@... wrote: > I just wanted to share about Patty's new doctor. > She has had someone nearby > that has been driving me nuts. This is a doctor > for regular people. Patty > gets so frustrated when she has to teach doctors. > So, as Patty will > hopefully be living in the Boston area soon we are > changing her doctors to have them > all in one hospital, working together as a team > under her geneticist. > > We took her to her new internist (GP). I thought > we'd try him and if it > didn't work out we'd move on. Well,...... > > He never heard of CHARGE before. Like, what's new. > But he listened. At > first we met in his office, handed him Patty's > CHARGE info and this guy > listened. Patty then told him of her trials and > discriminations educationally. > This doctor then talked about his children who have > a " need " and is enthralled > Patty does so well. He knows the fight. OK, one > point for him. > > During the discussion he talked as a human but it > was also obvious he knew > his stuff. He even cracked jokes that were similar > to Patty's humor. Another > point! > > Then he evaluated Patty. He did a great and intense > job. Come to find out > she has a murmur again. Nothing big but back to > the cardiologist. He is > sending her for an MRI for her knee and is sending > her to a well known ENT. > Then he said it's a start and it will be a trial > and error time in finding the > right specialists for Patty. OK, two points! > > He also went over other stuff, cool guy. He made > Patty feel cared for and > comfortable. More points! > > And then ... he noticed Patty's motorical issues > within her speech. Her s > and ch sounds are really getting slurred lately. > There's more but this guy > then want's Patty to go to ---Speech! Yahoo! We > never had a doctor send her > to speech! Yea, yea, yea. Points galore! > > I think we finally found an adult doctor. > > Cool or what! > > The only thing that made Patty feel uneasy is he > measured her to be 4' 11 " > and 6/8ths. But he told her he'd round it off to > five feet! Nice! Ok, so > half a point for that. > > There are doctors out there who really are human. > We just have to keep > searching to find them. This one just might be the > one for Patty's life. Oh > yea, and he didn't rush her. We were there over an > hour. How many points for > that one! > > Then after that there's another important person we > met yesterday. We are > sending Patty to three sessions of Cranial Sacral > therapy again. We found > someone who is well known. After the doctor > appointment we went there. My oh > my. It was just one session but Patty's body was > in line better than it ever > has been. Finally when it was done the person who > did it told me she has > never seen anyone so in tune with their bodies and > their energy as Patty is. > She said at the moment she felt the energy Patty > did too. She told me that is > the greatest " sense " Patty has. Not only does > Patty know her " energy " she > knows others instantly too. She said Patty is a > natural. > > Great day yesterday! > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > > [Non-text portions of this message have been > removed] > > __________________________________ Yahoo! FareChase: Search multiple travel sites in one click. http://farechase.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2005 Report Share Posted November 5, 2005 What is Cranial Sacral therapy? Chantelle (CHARGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 oh bonnie i love yoru doctor my endos like that sos my gastro man he doesnt know cvharge but hes the best and sos my gp who also doesnt knwo charbgge but they knwo complacted peopel and thats what we all need not like my vision consultant at tafe who we have a meeting with on tues which i will let you all know how it goes but secreatly think she should meet christinese landlord hugs ellen > > What is Cranial Sacral therapy? > > > Chantelle (CHARGE) > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 Bonnie- My first thought is " Wow! -- with a big smile! What a fabulous Dr! Don't you wish there was a " good dr " network where they all had a list-serve or something and could refer patients around the country to each other?? Then on the CST -- wow again! I wish ours wasn't so far away. I really believe in the treatments, but you do have to find a practitioner you trust. Ours is 40 min away. When do I have time to make a trip that's basically 3 hours total?? It's not a town we go to for other things. I think our kids become so incredibly in tune with their own bodies and energy because they are trained to it from infancy. How many of us have had so much careful attention paid to our own bodies from such an early age?? Turk22082@... wrote: I just wanted to share about Patty's new doctor. She has had someone nearby that has been driving me nuts. This is a doctor for regular people. Patty gets so frustrated when she has to teach doctors. So, as Patty will hopefully be living in the Boston area soon we are changing her doctors to have them all in one hospital, working together as a team under her geneticist. We took her to her new internist (GP). I thought we'd try him and if it didn't work out we'd move on. Well,...... He never heard of CHARGE before. Like, what's new. But he listened. At first we met in his office, handed him Patty's CHARGE info and this guy listened. Patty then told him of her trials and discriminations educationally. This doctor then talked about his children who have a " need " and is enthralled Patty does so well. He knows the fight. OK, one point for him. During the discussion he talked as a human but it was also obvious he knew his stuff. He even cracked jokes that were similar to Patty's humor. Another point! Then he evaluated Patty. He did a great and intense job. Come to find out she has a murmur again. Nothing big but back to the cardiologist. He is sending her for an MRI for her knee and is sending her to a well known ENT. Then he said it's a start and it will be a trial and error time in finding the right specialists for Patty. OK, two points! He also went over other stuff, cool guy. He made Patty feel cared for and comfortable. More points! And then ... he noticed Patty's motorical issues within her speech. Her s and ch sounds are really getting slurred lately. There's more but this guy then want's Patty to go to ---Speech! Yahoo! We never had a doctor send her to speech! Yea, yea, yea. Points galore! I think we finally found an adult doctor. Cool or what! The only thing that made Patty feel uneasy is he measured her to be 4' 11 " and 6/8ths. But he told her he'd round it off to five feet! Nice! Ok, so half a point for that. There are doctors out there who really are human. We just have to keep searching to find them. This one just might be the one for Patty's life. Oh yea, and he didn't rush her. We were there over an hour. How many points for that one! Then after that there's another important person we met yesterday. We are sending Patty to three sessions of Cranial Sacral therapy again. We found someone who is well known. After the doctor appointment we went there. My oh my. It was just one session but Patty's body was in line better than it ever has been. Finally when it was done the person who did it told me she has never seen anyone so in tune with their bodies and their energy as Patty is. She said at the moment she felt the energy Patty did too. She told me that is the greatest " sense " Patty has. Not only does Patty know her " energy " she knows others instantly too. She said Patty is a natural. Great day yesterday! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2005 Report Share Posted November 6, 2005 Bonnie That great news for Patty. How many points did that Doctor score? Understanding is everything. Have left Flo and at hospital this evening for a sleep study. This young doctor (showing my age here) thought he would show off about his knowledge (or lack of) of CHARGE. Flo thought he was arrogant, I just thought he was ticking boxes. I did not have the energy to advise him that it is CHARGE Syndrome and not Association though. Sometimes it is pointless taking issue - there are bigger issues and battles to be had. Simon >From: Turk22082@... >Reply-To: CHARGE >To: CHARGE >Subject: Patty's new doctor >Date: Sat, 5 Nov 2005 09:33:20 EST > >I just wanted to share about Patty's new doctor. She has had someone >nearby >that has been driving me nuts. This is a doctor for regular people. >Patty >gets so frustrated when she has to teach doctors. So, as Patty will >hopefully be living in the Boston area soon we are changing her doctors to >have them >all in one hospital, working together as a team under her geneticist. > >We took her to her new internist (GP). I thought we'd try him and if it >didn't work out we'd move on. Well,...... > >He never heard of CHARGE before. Like, what's new. But he listened. At >first we met in his office, handed him Patty's CHARGE info and this guy >listened. Patty then told him of her trials and discriminations >educationally. >This doctor then talked about his children who have a " need " and is >enthralled >Patty does so well. He knows the fight. OK, one point for him. > >During the discussion he talked as a human but it was also obvious he knew >his stuff. He even cracked jokes that were similar to Patty's humor. >Another >point! > >Then he evaluated Patty. He did a great and intense job. Come to find >out >she has a murmur again. Nothing big but back to the cardiologist. He is >sending her for an MRI for her knee and is sending her to a well known >ENT. >Then he said it's a start and it will be a trial and error time in finding >the >right specialists for Patty. OK, two points! > >He also went over other stuff, cool guy. He made Patty feel cared for and >comfortable. More points! > >And then ... he noticed Patty's motorical issues within her speech. Her s >and ch sounds are really getting slurred lately. There's more but this >guy >then want's Patty to go to ---Speech! Yahoo! We never had a doctor send >her >to speech! Yea, yea, yea. Points galore! > >I think we finally found an adult doctor. > >Cool or what! > >The only thing that made Patty feel uneasy is he measured her to be 4' 11 " >and 6/8ths. But he told her he'd round it off to five feet! Nice! Ok, so >half a point for that. > >There are doctors out there who really are human. We just have to keep >searching to find them. This one just might be the one for Patty's life. >Oh >yea, and he didn't rush her. We were there over an hour. How many points >for >that one! > >Then after that there's another important person we met yesterday. We are >sending Patty to three sessions of Cranial Sacral therapy again. We found >someone who is well known. After the doctor appointment we went there. >My oh >my. It was just one session but Patty's body was in line better than it >ever >has been. Finally when it was done the person who did it told me she has >never seen anyone so in tune with their bodies and their energy as Patty >is. >She said at the moment she felt the energy Patty did too. She told me >that is >the greatest " sense " Patty has. Not only does Patty know her " energy " she >knows others instantly too. She said Patty is a natural. > >Great day yesterday! > > > >Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 thats great bonnie, and patty! Re: Patty's new doctor > Bonnie- > My first thought is " Wow! -- with a big smile! What a fabulous Dr! Don't > you wish there was a " good dr " network where they all had a list-serve or > something and could refer patients around the country to each other?? > > Then on the CST -- wow again! I wish ours wasn't so far away. I really > believe in the treatments, but you do have to find a practitioner you > trust. Ours is 40 min away. When do I have time to make a trip that's > basically 3 hours total?? It's not a town we go to for other things. > > I think our kids become so incredibly in tune with their own bodies and > energy because they are trained to it from infancy. How many of us have > had so much careful attention paid to our own bodies from such an early > age?? > > > > Turk22082@... wrote: > I just wanted to share about Patty's new doctor. She has had someone > nearby > that has been driving me nuts. This is a doctor for regular people. Patty > gets so frustrated when she has to teach doctors. So, as Patty will > hopefully be living in the Boston area soon we are changing her doctors to > have them > all in one hospital, working together as a team under her geneticist. > > We took her to her new internist (GP). I thought we'd try him and if it > didn't work out we'd move on. Well,...... > > He never heard of CHARGE before. Like, what's new. But he listened. At > first we met in his office, handed him Patty's CHARGE info and this guy > listened. Patty then told him of her trials and discriminations > educationally. > This doctor then talked about his children who have a " need " and is > enthralled > Patty does so well. He knows the fight. OK, one point for him. > > During the discussion he talked as a human but it was also obvious he knew > his stuff. He even cracked jokes that were similar to Patty's humor. > Another > point! > > Then he evaluated Patty. He did a great and intense job. Come to find out > she has a murmur again. Nothing big but back to the cardiologist. He is > sending her for an MRI for her knee and is sending her to a well known > ENT. > Then he said it's a start and it will be a trial and error time in finding > the > right specialists for Patty. OK, two points! > > He also went over other stuff, cool guy. He made Patty feel cared for and > comfortable. More points! > > And then ... he noticed Patty's motorical issues within her speech. Her s > and ch sounds are really getting slurred lately. There's more but this guy > then want's Patty to go to ---Speech! Yahoo! We never had a doctor send > her > to speech! Yea, yea, yea. Points galore! > > I think we finally found an adult doctor. > > Cool or what! > > The only thing that made Patty feel uneasy is he measured her to be 4' 11 " > and 6/8ths. But he told her he'd round it off to five feet! Nice! Ok, so > half a point for that. > > There are doctors out there who really are human. We just have to keep > searching to find them. This one just might be the one for Patty's life. > Oh > yea, and he didn't rush her. We were there over an hour. How many points > for > that one! > > Then after that there's another important person we met yesterday. We are > sending Patty to three sessions of Cranial Sacral therapy again. We found > someone who is well known. After the doctor appointment we went there. My > oh > my. It was just one session but Patty's body was in line better than it > ever > has been. Finally when it was done the person who did it told me she has > never seen anyone so in tune with their bodies and their energy as Patty > is. > She said at the moment she felt the energy Patty did too. She told me that > is > the greatest " sense " Patty has. Not only does Patty know her " energy " she > knows others instantly too. She said Patty is a natural. > > Great day yesterday! > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 yeah lol if they want to say asoitation they can but we have a sydrome dont we yay michlee the country bwhat bout the world lol > > Bonnie > > That great news for Patty. How many points did that Doctor score? > Understanding is everything. > > Have left Flo and at hospital this evening for a sleep study. This > young doctor (showing my age here) thought he would show off about his > knowledge (or lack of) of CHARGE. Flo thought he was arrogant, I just > thought he was ticking boxes. I did not have the energy to advise him that > it is CHARGE Syndrome and not Association though. Sometimes it is > pointless > taking issue - there are bigger issues and battles to be had. > > Simon > > > > > >From: Turk22082@... > >Reply-To: CHARGE > >To: CHARGE > >Subject: Patty's new doctor > >Date: Sat, 5 Nov 2005 09:33:20 EST > > > >I just wanted to share about Patty's new doctor. She has had someone > >nearby > >that has been driving me nuts. This is a doctor for regular people. > >Patty > >gets so frustrated when she has to teach doctors. So, as Patty will > >hopefully be living in the Boston area soon we are changing her doctors > to > >have them > >all in one hospital, working together as a team under her geneticist. > > > >We took her to her new internist (GP). I thought we'd try him and if it > >didn't work out we'd move on. Well,...... > > > >He never heard of CHARGE before. Like, what's new. But he listened. At > >first we met in his office, handed him Patty's CHARGE info and this guy > >listened. Patty then told him of her trials and discriminations > >educationally. > >This doctor then talked about his children who have a " need " and is > >enthralled > >Patty does so well. He knows the fight. OK, one point for him. > > > >During the discussion he talked as a human but it was also obvious he > knew > >his stuff. He even cracked jokes that were similar to Patty's humor. > >Another > >point! > > > >Then he evaluated Patty. He did a great and intense job. Come to find > >out > >she has a murmur again. Nothing big but back to the cardiologist. He is > >sending her for an MRI for her knee and is sending her to a well known > >ENT. > >Then he said it's a start and it will be a trial and error time in > finding > >the > >right specialists for Patty. OK, two points! > > > >He also went over other stuff, cool guy. He made Patty feel cared for and > >comfortable. More points! > > > >And then ... he noticed Patty's motorical issues within her speech. Her s > >and ch sounds are really getting slurred lately. There's more but this > >guy > >then want's Patty to go to ---Speech! Yahoo! We never had a doctor send > >her > >to speech! Yea, yea, yea. Points galore! > > > >I think we finally found an adult doctor. > > > >Cool or what! > > > >The only thing that made Patty feel uneasy is he measured her to be 4' > 11 " > >and 6/8ths. But he told her he'd round it off to five feet! Nice! Ok, so > >half a point for that. > > > >There are doctors out there who really are human. We just have to keep > >searching to find them. This one just might be the one for Patty's life. > >Oh > >yea, and he didn't rush her. We were there over an hour. How many points > >for > >that one! > > > >Then after that there's another important person we met yesterday. We are > >sending Patty to three sessions of Cranial Sacral therapy again. We found > >someone who is well known. After the doctor appointment we went there. > >My oh > >my. It was just one session but Patty's body was in line better than it > >ever > >has been. Finally when it was done the person who did it told me she has > >never seen anyone so in tune with their bodies and their energy as Patty > >is. > >She said at the moment she felt the energy Patty did too. She told me > >that is > >the greatest " sense " Patty has. Not only does Patty know her " energy " she > >knows others instantly too. She said Patty is a natural. > > > >Great day yesterday! > > > > > > > >Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 Bonnie, Hooray for a great day, hooray for Patty and hooray for Dr Great! You know it never bothers me that someone does not know about something. What bothers me is when they pretend they do know or when they are not willing to learn from you. I am so pleased this important area is finally coming together for Patty. And tell her not to worry too drastically about the height thing. I am 4ft 11-1/2 inches and have always rounded it off to 5ft! She's in good company. Smiling broadly on a sleepy day... Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2005 Report Share Posted November 7, 2005 glad it's all going well. maria Patty's new doctor >I just wanted to share about Patty's new doctor. She has had someone >nearby > that has been driving me nuts. This is a doctor for regular people. > Patty > gets so frustrated when she has to teach doctors. So, as Patty will > hopefully be living in the Boston area soon we are changing her doctors > to have them > all in one hospital, working together as a team under her geneticist. > > We took her to her new internist (GP). I thought we'd try him and if it > didn't work out we'd move on. Well,...... > > He never heard of CHARGE before. Like, what's new. But he listened. At > first we met in his office, handed him Patty's CHARGE info and this guy > listened. Patty then told him of her trials and discriminations > educationally. > This doctor then talked about his children who have a " need " and is > enthralled > Patty does so well. He knows the fight. OK, one point for him. > > During the discussion he talked as a human but it was also obvious he > knew > his stuff. He even cracked jokes that were similar to Patty's humor. > Another > point! > > Then he evaluated Patty. He did a great and intense job. Come to find > out > she has a murmur again. Nothing big but back to the cardiologist. He is > sending her for an MRI for her knee and is sending her to a well known > ENT. > Then he said it's a start and it will be a trial and error time in > finding the > right specialists for Patty. OK, two points! > > He also went over other stuff, cool guy. He made Patty feel cared for > and > comfortable. More points! > > And then ... he noticed Patty's motorical issues within her speech. Her > s > and ch sounds are really getting slurred lately. There's more but this > guy > then want's Patty to go to ---Speech! Yahoo! We never had a doctor send > her > to speech! Yea, yea, yea. Points galore! > > I think we finally found an adult doctor. > > Cool or what! > > The only thing that made Patty feel uneasy is he measured her to be 4' > 11 " > and 6/8ths. But he told her he'd round it off to five feet! Nice! Ok, > so > half a point for that. > > There are doctors out there who really are human. We just have to keep > searching to find them. This one just might be the one for Patty's life. > Oh > yea, and he didn't rush her. We were there over an hour. How many > points for > that one! > > Then after that there's another important person we met yesterday. We > are > sending Patty to three sessions of Cranial Sacral therapy again. We > found > someone who is well known. After the doctor appointment we went there. > My oh > my. It was just one session but Patty's body was in line better than it > ever > has been. Finally when it was done the person who did it told me she has > never seen anyone so in tune with their bodies and their energy as Patty > is. > She said at the moment she felt the energy Patty did too. She told me > that is > the greatest " sense " Patty has. Not only does Patty know her " energy " > she > knows others instantly too. She said Patty is a natural. > > Great day yesterday! > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
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