Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 I sent something to Mia and Gareth . Marie Children with NF2 Marie- Let us know your completed list? With the names rolling in, it's impressive! Would talking with Mia serve to do something about getting this info updated? Barbara B. In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.Reagan-Age 3 ()Adam - diagnosis age? (Barbara) - New YorkGarreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandsonP thought there are others I can't remember?Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 I sent something to Mia and Gareth . Marie Children with NF2 Marie- Let us know your completed list? With the names rolling in, it's impressive! Would talking with Mia serve to do something about getting this info updated? Barbara B. In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.Reagan-Age 3 ()Adam - diagnosis age? (Barbara) - New YorkGarreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandsonP thought there are others I can't remember?Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 I sent something to Mia and Gareth . Marie Children with NF2 Marie- Let us know your completed list? With the names rolling in, it's impressive! Would talking with Mia serve to do something about getting this info updated? Barbara B. In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list.Reagan-Age 3 ()Adam - diagnosis age? (Barbara) - New YorkGarreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandsonP thought there are others I can't remember?Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, My daughter, is 7 and has NF2 also. She was diagmosed at age 2 after an MRI showed a meningioma. She had surgery at age 3 to remove it. She now gets an MRI anually. Marcy > In the brochures, educational material, etc doctors are taught NF2 develops in " late teens, early adulthood " . From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of " kids " that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. > Reagan-Age 3 () > Adam - diagnosis age? (Barbara) > - New York > Garreth > Getz > T. Getz (mind blank, can't think of her first name) > - I need name of your grandson > P thought there are others I can't remember? > Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, My daughter, is 7 and has NF2 also. She was diagmosed at age 2 after an MRI showed a meningioma. She had surgery at age 3 to remove it. She now gets an MRI anually. Marcy > In the brochures, educational material, etc doctors are taught NF2 develops in " late teens, early adulthood " . From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of " kids " that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. > Reagan-Age 3 () > Adam - diagnosis age? (Barbara) > - New York > Garreth > Getz > T. Getz (mind blank, can't think of her first name) > - I need name of your grandson > P thought there are others I can't remember? > Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, My daughter, is 7 and has NF2 also. She was diagmosed at age 2 after an MRI showed a meningioma. She had surgery at age 3 to remove it. She now gets an MRI anually. Marcy > In the brochures, educational material, etc doctors are taught NF2 develops in " late teens, early adulthood " . From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of " kids " that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. > Reagan-Age 3 () > Adam - diagnosis age? (Barbara) > - New York > Garreth > Getz > T. Getz (mind blank, can't think of her first name) > - I need name of your grandson > P thought there are others I can't remember? > Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Thank you, I am assuming she was sporadic? Marie Re: Children with NF2 > Marie, > My daughter, is 7 and has NF2 also. She was diagmosed > at age 2 after an MRI showed a meningioma. She had surgery at age 3 > to remove it. She now gets an MRI anually. > Marcy > > > > > > In the brochures, educational material, etc doctors are taught NF2 > develops in " late teens, early adulthood " . From what I see on this > Crew, I do not think that is correct today, and I would like to > write a few doctors (play Doberman) and ask them about getting it > changed. To do that, I am going to give them the following list > of " kids " that I know; if there is anyone with a child that I do not > have listed, please let me know so I can add them to the list. > > Reagan-Age 3 () > > Adam - diagnosis age? (Barbara) > > - New York > > Garreth > > Getz > > T. Getz (mind blank, can't think of her first name) > > - I need name of your grandson > > P thought there are others I can't remember? > > Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Thank you, I am assuming she was sporadic? Marie Re: Children with NF2 > Marie, > My daughter, is 7 and has NF2 also. She was diagmosed > at age 2 after an MRI showed a meningioma. She had surgery at age 3 > to remove it. She now gets an MRI anually. > Marcy > > > > > > In the brochures, educational material, etc doctors are taught NF2 > develops in " late teens, early adulthood " . From what I see on this > Crew, I do not think that is correct today, and I would like to > write a few doctors (play Doberman) and ask them about getting it > changed. To do that, I am going to give them the following list > of " kids " that I know; if there is anyone with a child that I do not > have listed, please let me know so I can add them to the list. > > Reagan-Age 3 () > > Adam - diagnosis age? (Barbara) > > - New York > > Garreth > > Getz > > T. Getz (mind blank, can't think of her first name) > > - I need name of your grandson > > P thought there are others I can't remember? > > Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Thank you, I am assuming she was sporadic? Marie Re: Children with NF2 > Marie, > My daughter, is 7 and has NF2 also. She was diagmosed > at age 2 after an MRI showed a meningioma. She had surgery at age 3 > to remove it. She now gets an MRI anually. > Marcy > > > > > > In the brochures, educational material, etc doctors are taught NF2 > develops in " late teens, early adulthood " . From what I see on this > Crew, I do not think that is correct today, and I would like to > write a few doctors (play Doberman) and ask them about getting it > changed. To do that, I am going to give them the following list > of " kids " that I know; if there is anyone with a child that I do not > have listed, please let me know so I can add them to the list. > > Reagan-Age 3 () > > Adam - diagnosis age? (Barbara) > > - New York > > Garreth > > Getz > > T. Getz (mind blank, can't think of her first name) > > - I need name of your grandson > > P thought there are others I can't remember? > > Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, I also have NF2. I was a genetic mutation. (I love that term!) She was diagnosed because I had it. Marcy > > > In the brochures, educational material, etc doctors are taught NF2 > > develops in " late teens, early adulthood " . From what I see on this > > Crew, I do not think that is correct today, and I would like to > > write a few doctors (play Doberman) and ask them about getting it > > changed. To do that, I am going to give them the following list > > of " kids " that I know; if there is anyone with a child that I do not > > have listed, please let me know so I can add them to the list. > > > Reagan-Age 3 () > > > Adam - diagnosis age? (Barbara) > > > - New York > > > Garreth > > > Getz > > > T. Getz (mind blank, can't think of her first name) > > > - I need name of your grandson > > > P thought there are others I can't remember? > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, I also have NF2. I was a genetic mutation. (I love that term!) She was diagnosed because I had it. Marcy > > > In the brochures, educational material, etc doctors are taught NF2 > > develops in " late teens, early adulthood " . From what I see on this > > Crew, I do not think that is correct today, and I would like to > > write a few doctors (play Doberman) and ask them about getting it > > changed. To do that, I am going to give them the following list > > of " kids " that I know; if there is anyone with a child that I do not > > have listed, please let me know so I can add them to the list. > > > Reagan-Age 3 () > > > Adam - diagnosis age? (Barbara) > > > - New York > > > Garreth > > > Getz > > > T. Getz (mind blank, can't think of her first name) > > > - I need name of your grandson > > > P thought there are others I can't remember? > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, I also have NF2. I was a genetic mutation. (I love that term!) She was diagnosed because I had it. Marcy > > > In the brochures, educational material, etc doctors are taught NF2 > > develops in " late teens, early adulthood " . From what I see on this > > Crew, I do not think that is correct today, and I would like to > > write a few doctors (play Doberman) and ask them about getting it > > changed. To do that, I am going to give them the following list > > of " kids " that I know; if there is anyone with a child that I do not > > have listed, please let me know so I can add them to the list. > > > Reagan-Age 3 () > > > Adam - diagnosis age? (Barbara) > > > - New York > > > Garreth > > > Getz > > > T. Getz (mind blank, can't think of her first name) > > > - I need name of your grandson > > > P thought there are others I can't remember? > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 's diagnosis is a spontaneus gene mutation...even though my father 2 sisters and2 brothers have NF1 and I have nothing....Pam Lakeman Children with NF2 > > > > > > > > > In the brochures, educational material, etc doctors are taught NF2 > > develops in " late teens, early adulthood " . From what I see on this > > Crew, I do not think that is correct today, and I would like to write > > a few doctors (play Doberman) and ask them about getting it changed. > > To do that, I am going to give them the following list of " kids " that > > I know; if there is anyone with a child that I do not have listed, > > please let me know so I can add them to the list. > > > Reagan-Age 3 () > > > Adam - diagnosis age? (Barbara) > > > - New York > > > Garreth > > > Getz > > > T. Getz (mind blank, can't think of her first name) > > > - I need name of your grandson > > > P thought there are others I can't remember? > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 's diagnosis is a spontaneus gene mutation...even though my father 2 sisters and2 brothers have NF1 and I have nothing....Pam Lakeman Children with NF2 > > > > > > > > > In the brochures, educational material, etc doctors are taught NF2 > > develops in " late teens, early adulthood " . From what I see on this > > Crew, I do not think that is correct today, and I would like to write > > a few doctors (play Doberman) and ask them about getting it changed. > > To do that, I am going to give them the following list of " kids " that > > I know; if there is anyone with a child that I do not have listed, > > please let me know so I can add them to the list. > > > Reagan-Age 3 () > > > Adam - diagnosis age? (Barbara) > > > - New York > > > Garreth > > > Getz > > > T. Getz (mind blank, can't think of her first name) > > > - I need name of your grandson > > > P thought there are others I can't remember? > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 's diagnosis is a spontaneus gene mutation...even though my father 2 sisters and2 brothers have NF1 and I have nothing....Pam Lakeman Children with NF2 > > > > > > > > > In the brochures, educational material, etc doctors are taught NF2 > > develops in " late teens, early adulthood " . From what I see on this > > Crew, I do not think that is correct today, and I would like to write > > a few doctors (play Doberman) and ask them about getting it changed. > > To do that, I am going to give them the following list of " kids " that > > I know; if there is anyone with a child that I do not have listed, > > please let me know so I can add them to the list. > > > Reagan-Age 3 () > > > Adam - diagnosis age? (Barbara) > > > - New York > > > Garreth > > > Getz > > > T. Getz (mind blank, can't think of her first name) > > > - I need name of your grandson > > > P thought there are others I can't remember? > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, Garrett was misdiagnosed with NF1 at age 9 correct diagnosis of NF2 at age 11 should have been caught in MRIs at age 6 a case of doctors not knowing what to look for. Suzanne (off to Vegas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, Garrett was misdiagnosed with NF1 at age 9 correct diagnosis of NF2 at age 11 should have been caught in MRIs at age 6 a case of doctors not knowing what to look for. Suzanne (off to Vegas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 Marie, Garrett was misdiagnosed with NF1 at age 9 correct diagnosis of NF2 at age 11 should have been caught in MRIs at age 6 a case of doctors not knowing what to look for. Suzanne (off to Vegas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 GRANDSON IS ANTHONY SHELDON JOHNSON AGE 9 AN REMOVED IN OCT 2002 GRANDSON JEFFREY L GREER BILATERAL AN 'S REMOVED AT AGE 16 GRANDDAUGHTER HEATHER SUE GREER BILATERAL AN'S REMOVED AT AGE 18 Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 GRANDSON IS ANTHONY SHELDON JOHNSON AGE 9 AN REMOVED IN OCT 2002 GRANDSON JEFFREY L GREER BILATERAL AN 'S REMOVED AT AGE 16 GRANDDAUGHTER HEATHER SUE GREER BILATERAL AN'S REMOVED AT AGE 18 Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 GRANDSON IS ANTHONY SHELDON JOHNSON AGE 9 AN REMOVED IN OCT 2002 GRANDSON JEFFREY L GREER BILATERAL AN 'S REMOVED AT AGE 16 GRANDDAUGHTER HEATHER SUE GREER BILATERAL AN'S REMOVED AT AGE 18 Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 NOT SURE THIS SENT FIRST TIME MARIE SO WILL REPEAT: ANTHONY JOHNSON AGE 8 ONE AN REMOVED OCT 2002 HEATHER SUE GREER BILATERAL AN'S REMOVED AT AGE 18 JEFFREY L. GREER BILATERAL AN'S REMOVED AT AGE 15 OR 16 Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 NOT SURE THIS SENT FIRST TIME MARIE SO WILL REPEAT: ANTHONY JOHNSON AGE 8 ONE AN REMOVED OCT 2002 HEATHER SUE GREER BILATERAL AN'S REMOVED AT AGE 18 JEFFREY L. GREER BILATERAL AN'S REMOVED AT AGE 15 OR 16 Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 NOT SURE THIS SENT FIRST TIME MARIE SO WILL REPEAT: ANTHONY JOHNSON AGE 8 ONE AN REMOVED OCT 2002 HEATHER SUE GREER BILATERAL AN'S REMOVED AT AGE 18 JEFFREY L. GREER BILATERAL AN'S REMOVED AT AGE 15 OR 16 Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2003 Report Share Posted February 20, 2003 I THINK YOU HAVE IT CORRECT MARIE FIRST THE RADIOLOGIST SAID MULTIPLE TUMORS THEN SEVERAL DOCTORS COULDN'T AGREE AS TO WHAT THEY SEEN EXPERTS LIKE AT CLEVELAND CLINIC AND DR BRACKMANN REFERRED HIM TO A CHILD SPECIALIST AFTER ABOUT 2 YEARS THE MRI SHOWS POSITIVE AT LEAST ONE AN AND BRACKMAN SAID REMOVE SOON THEN THE SPECIALIST IN PGH. CONFIRMED HE HAD NF THEN THE OTHER DOCTORS ADMITTED THEY THOUGHT SO BUT DIDN'T WANT TO SAY. HE JUST TURNED 9 WHEN HE HAD THE SURGERY STILL HAS PROBLEMS WITH HIS EYE CATHERINE Children with NF2 In the brochures, educational material, etc doctors are taught NF2 develops in "late teens, early adulthood". From what I see on this Crew, I do not think that is correct today, and I would like to write a few doctors (play Doberman) and ask them about getting it changed. To do that, I am going to give them the following list of "kids" that I know; if there is anyone with a child that I do not have listed, please let me know so I can add them to the list. Reagan-Age 3 () Adam - diagnosis age? (Barbara) - New York Garreth Getz T. Getz (mind blank, can't think of her first name) - I need name of your grandson P thought there are others I can't remember? Marie Quote Link to comment Share on other sites More sharing options...
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