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...
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...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Marie, Adam is a spontaneous mutation. Diagnosed at 11. Barbara F Quote Link to comment Share on other sites More sharing options...
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