hello-
My son is 3 he now has a 98 curvature he was first diagnosed when he was 16 months old. We went through countless doctors trying to figure out what was wrong we first started to notice his chest sticking out when he was about 4 months old. we asked our ped he recomended an ortho surgion he said that it was just a normal groth problem and that he would grow out of it.
we then saw another specialist when khyler was 16 months old he ordered an mri and a brace for khyler he wore that for quiet a few months and everything was going well he loved it. then the brace started to get too small and they made him another one. this one was unberable he would scream and cry every time you put it on him. when he had it on he would just lay on the floor and cry mommy help me!!!! it broke my heart. we took him back several times to adjust it and try to make it more comfortable. during this whole time i was never told about the degree of curve. Khyler also started to have trouble breathing he would make this strange noise when he was active or sitting. the first doctor we went to said he was doing it to get attention!the second wanted a lung capacity test. which they couldn't do because they have to sedate you for it and every time that khyler would get into a deep enough sleep he would stop breathing and wake himself up. so then they decided that he should have a sleep study and all the while he still can't get into his brace because they want to make sure his breathing is on track and deal with that first. they even talked about doing a surgery to expand his chest wall and make it eaisier for him to breathe but never mentioned surgery on his back except to say that when he was older he might need it. we decided to get yet another opinion and we took him to akron childrens hospital. they were astonished that my other doctors hadn't sugested surgery right away they said khy had a 98 degree curve and that he would need traction/halo and surgery right away. they also recomended a specialist at st. louis childrens hospital a Dr. Lawrence Lenke i was wondering if anyone had heard of him we've just gotten the run around so much and i want to make sure Khy gets the best care possible........Thanks Corina
mother of Adam 10 Khyler 3 and Cayden 4 months
My son is 3 he now has a 98 curvature he was first diagnosed when he was 16 months old. We went through countless doctors trying to figure out what was wrong we first started to notice his chest sticking out when he was about 4 months old. we asked our ped he recomended an ortho surgion he said that it was just a normal groth problem and that he would grow out of it.
we then saw another specialist when khyler was 16 months old he ordered an mri and a brace for khyler he wore that for quiet a few months and everything was going well he loved it. then the brace started to get too small and they made him another one. this one was unberable he would scream and cry every time you put it on him. when he had it on he would just lay on the floor and cry mommy help me!!!! it broke my heart. we took him back several times to adjust it and try to make it more comfortable. during this whole time i was never told about the degree of curve. Khyler also started to have trouble breathing he would make this strange noise when he was active or sitting. the first doctor we went to said he was doing it to get attention!the second wanted a lung capacity test. which they couldn't do because they have to sedate you for it and every time that khyler would get into a deep enough sleep he would stop breathing and wake himself up. so then they decided that he should have a sleep study and all the while he still can't get into his brace because they want to make sure his breathing is on track and deal with that first. they even talked about doing a surgery to expand his chest wall and make it eaisier for him to breathe but never mentioned surgery on his back except to say that when he was older he might need it. we decided to get yet another opinion and we took him to akron childrens hospital. they were astonished that my other doctors hadn't sugested surgery right away they said khy had a 98 degree curve and that he would need traction/halo and surgery right away. they also recomended a specialist at st. louis childrens hospital a Dr. Lawrence Lenke i was wondering if anyone had heard of him we've just gotten the run around so much and i want to make sure Khy gets the best care possible........Thanks Corina
mother of Adam 10 Khyler 3 and Cayden 4 months
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