Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 heather, i wanted to let you know that i ended up finding gail's phone # by other means so that is why i haven't called you back. there was a woman on the nsf board whose son was diagnosed at 6 mos with infantile scoliosis. she ended up being told to wait and see. sometime around 18 mos his curve was getting high and they braced him. grew out of the brace and then went into an awful brace that didn't fit. she went for a 2nd opinion. just wait. he'll need surgery. now at 3 yrs old his curve is around 120o. she went to st. louis and the ortho there said halo traction then grow rods, but then proceeded to send her home without anything and the ortho is too busy and has put it off for 3 mos. she is now going to cincinnati children's hospital to see about veptr. i wanted her and gail to touch base for support. anyway, long story short -- this just breaks my heart especially since this should not be happening!!! you experienced the same thing with olivia, and if it weren't for the early treatment option, lucas also might be at that point. i was sort of hoping that she might be willing to travel to erie to see dr. sanders -- maybe his curve is still flexible, but i can only suggest . . . thanks for letting me ramble! deshea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 Deshea, I read that post on the NSF board and it completely broke my heart! I am glad to hear that she is looking elsewhere. Noelle (12-2-01) Ian (8-15-04) heather heather, i wanted to let you know that i ended up finding gail's phone # by other means so that is why i haven't called you back. there was a woman on the nsf board whose son was diagnosed at 6 mos with infantile scoliosis. she ended up being told to wait and see. sometime around 18 mos his curve was getting high and they braced him. grew out of the brace and then went into an awful brace that didn't fit. she went for a 2nd opinion. just wait. he'll need surgery. now at 3 yrs old his curve is around 120o. she went to st. louis and the ortho there said halo traction then grow rods, but then proceeded to send her home without anything and the ortho is too busy and has put it off for 3 mos. she is now going to cincinnati children's hospital to see about veptr. i wanted her and gail to touch base for support. anyway, long story short -- this just breaks my heart especially since this should not be happening!!! you experienced the same thing with olivia, and if it weren't for the early treatment option, lucas also might be at that point. i was sort of hoping that she might be willing to travel to erie to see dr. sanders -- maybe his curve is still flexible, but i can only suggest . . . thanks for letting me ramble! deshea Quote Link to comment Share on other sites More sharing options...
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