Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 In a message dated 5/16/2005 6:21:46 P.M. Eastern Standard Time, jtesmer799@... writes: You could check Len's site probably and find out for sure. but they do recommend a second xray now. Yeah but then what is the purpose of the first. If there is a problem with the neck and they don'f find it then can't your child have a problem with doing certain activities? My son was 3 when they checked him said he was fine and had no restrictions. Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 In a message dated 5/16/2005 6:21:46 P.M. Eastern Standard Time, jtesmer799@... writes: You could check Len's site probably and find out for sure. but they do recommend a second xray now. Yeah but then what is the purpose of the first. If there is a problem with the neck and they don'f find it then can't your child have a problem with doing certain activities? My son was 3 when they checked him said he was fine and had no restrictions. Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 > Our daughter, , who is about to turn 3 just had the cervical > spine x-rays to screen for atlantoaxial instability. The preliminary > results are that she seems to have laxity upon extension of the neck. > Have any of you had any experience with this? Her pediatrician wants > the geneticist to follow-up on this, but should we be seeing an > orthopedist? Do I need to panic about every rough tumble she takes? > > Any advice you have would be appreciated! > > Thanks! > > > Mom to -7, -4, -2 DS > 11 yrs. DS, was also diagnosed at 3. I don't know what good a geneticist would be. sees a Dr. that is an Pediatric Orthopedist & Spinal Surgeon once a year to have x-rays & be examined, to make sure that it hasn't gotten any worse. I would just try to keep her from doing any somer saults or high climbing until you see someone to make sure. wears a soft cervical collar when she's doing anything where she could have an accident. There are activities that she's not allowed to do. She's had lots of falls & even a bad car accident, but came out OK. The book Medical & Surgical Care for Children with DS has a good section on it. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 > Our daughter, , who is about to turn 3 just had the cervical > spine x-rays to screen for atlantoaxial instability. The preliminary > results are that she seems to have laxity upon extension of the neck. > Have any of you had any experience with this? Her pediatrician wants > the geneticist to follow-up on this, but should we be seeing an > orthopedist? Do I need to panic about every rough tumble she takes? > > Any advice you have would be appreciated! > > Thanks! > > > Mom to -7, -4, -2 DS > 11 yrs. DS, was also diagnosed at 3. I don't know what good a geneticist would be. sees a Dr. that is an Pediatric Orthopedist & Spinal Surgeon once a year to have x-rays & be examined, to make sure that it hasn't gotten any worse. I would just try to keep her from doing any somer saults or high climbing until you see someone to make sure. wears a soft cervical collar when she's doing anything where she could have an accident. There are activities that she's not allowed to do. She's had lots of falls & even a bad car accident, but came out OK. The book Medical & Surgical Care for Children with DS has a good section on it. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 In a message dated 5/16/2005 7:57:12 P.M. Eastern Standard Time, leslie-kerrigan@... writes: but he was tall, smart, and handsome, LOL). Too funny!!! I am glad I found this out, I thought we were good and didn't have to worry about this anymore. Wil ask my ped about it. Thanks!!! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 In a message dated 5/16/2005 7:57:12 P.M. Eastern Standard Time, leslie-kerrigan@... writes: but he was tall, smart, and handsome, LOL). Too funny!!! I am glad I found this out, I thought we were good and didn't have to worry about this anymore. Wil ask my ped about it. Thanks!!! Loree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 I believe the recommendation is to redo the xray around puberty? 10-13? maybe? You could check Len's site probably and find out for sure. but they do recommend a second xray now. Joy Re: atlantoaxial instability Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 I believe the recommendation is to redo the xray around puberty? 10-13? maybe? You could check Len's site probably and find out for sure. but they do recommend a second xray now. Joy Re: atlantoaxial instability Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 had the X-rays when they first came out with this and the doctor said it was inconclusive, but since he was using a wheelchair and not involved in any activities that were dangerous we didn't follow up on it any more. Doctor's recommendation and our decision. Then recently, at age 40 he was acting like his neck was stiff quite often, so we had the follow up. He saw an ortho and he said it was fine, no sign of any problems. This was the doctor that asked if he worked and R. told him he is retired. Really cracked him up. Also seems to have cured the stiff neck. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Karrie's AAI didn't show up until she was 5. When she was around 6-7, she was placed on restricted activity, because she'd moved into the at risk measurement. At 8, she was released from restricted, but unfortunately, she s symptomatic again. She sees a neurosurgeon every 6 months. Sue mom to Kate 15 and Karrie 9 w/ds and other issues -- Re: atlantoaxial instability Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Karrie's AAI didn't show up until she was 5. When she was around 6-7, she was placed on restricted activity, because she'd moved into the at risk measurement. At 8, she was released from restricted, but unfortunately, she s symptomatic again. She sees a neurosurgeon every 6 months. Sue mom to Kate 15 and Karrie 9 w/ds and other issues -- Re: atlantoaxial instability Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 No, this test has to be done every 3 years. just had another one to be able to participate in SO swimming.. Jackie, Mom to 17ds, 14, and Bradley 11 -------------- Original message -------------- > Hi, My son had all his x-rays come back negative but a friends son is in his > 30's and just showed up with this. I understood that once they got past 3 we > didn't have to worry any more. Anyone know anything about x-rays when they > get older? > Jean > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 No, this test has to be done every 3 years. just had another one to be able to participate in SO swimming.. Jackie, Mom to 17ds, 14, and Bradley 11 -------------- Original message -------------- > Hi, My son had all his x-rays come back negative but a friends son is in his > 30's and just showed up with this. I understood that once they got past 3 we > didn't have to worry any more. Anyone know anything about x-rays when they > get older? > Jean > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 I can't see what a geneticist would have to do with it either. We recently saw an orthopedist and that makes a lot more sense. had no problem. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 I was told by the spine ortho at Childrens that although 's Xrays from age 3 looked fine, that we should repeat them every 3-4 years, as AI can develop at any time. We were actually there to discuss the mild scoliosis that was noted on an earlier chest Xray (to rule out pneumnoia.) Spine doc did a comprehensive set of spine/neck Xrays and her neck is still fine (no AI) and the scoliosis is so mild he doesn't want to do anything except recheck in 1 year. Too bad..... this was one doc I really liked, and so did (not that I want her to have a spine problem, but he was tall, smart, and handsome, LOL). , mom to (9), ( 7DS), and (5) Loree5@... wrote: > >In a message dated 5/16/2005 6:21:46 P.M. Eastern Standard Time, >jtesmer799@... writes: > >You could check Len's site probably and find out for sure. but they do >recommend a second xray now. > > > >Yeah but then what is the purpose of the first. If there is a problem with >the neck and they don'f find it then can't your child have a problem with >doing certain activities? My son was 3 when they checked him said he was fine >and had no restrictions. > >Loree > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 I was told by the spine ortho at Childrens that although 's Xrays from age 3 looked fine, that we should repeat them every 3-4 years, as AI can develop at any time. We were actually there to discuss the mild scoliosis that was noted on an earlier chest Xray (to rule out pneumnoia.) Spine doc did a comprehensive set of spine/neck Xrays and her neck is still fine (no AI) and the scoliosis is so mild he doesn't want to do anything except recheck in 1 year. Too bad..... this was one doc I really liked, and so did (not that I want her to have a spine problem, but he was tall, smart, and handsome, LOL). , mom to (9), ( 7DS), and (5) Loree5@... wrote: > >In a message dated 5/16/2005 6:21:46 P.M. Eastern Standard Time, >jtesmer799@... writes: > >You could check Len's site probably and find out for sure. but they do >recommend a second xray now. > > > >Yeah but then what is the purpose of the first. If there is a problem with >the neck and they don'f find it then can't your child have a problem with >doing certain activities? My son was 3 when they checked him said he was fine >and had no restrictions. > >Loree > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 My son, Evan (9, DS) was x-rayed at age 3 and was found to have a " mild " case of Alantoaxial Instability (AOI). We were advised to just be careful with him and not to let him do things like summersaults and tumbles. The orthopaedist told us to come back for a re-check in about 3-4 years. At age 7 he was re-xrayed (Special Olympics required this) and his AOI had actually improved. The orthopaedist said it was because Evan's muscle tone had improved and the muscles in his neck were supporting him better. The orthopaedist again advised us to re-xray every 3-4 years. Terry Mom to Evan and Kohl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 My son, Evan (9, DS) was x-rayed at age 3 and was found to have a " mild " case of Alantoaxial Instability (AOI). We were advised to just be careful with him and not to let him do things like summersaults and tumbles. The orthopaedist told us to come back for a re-check in about 3-4 years. At age 7 he was re-xrayed (Special Olympics required this) and his AOI had actually improved. The orthopaedist said it was because Evan's muscle tone had improved and the muscles in his neck were supporting him better. The orthopaedist again advised us to re-xray every 3-4 years. Terry Mom to Evan and Kohl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 This is exactly what happened with Kaitlyn. Also, we had a doctor speak to our DS group, he recommended rechecks every three years unless there was a problem or symptoms appeared. Darcy Re: atlantoaxial instability My son, Evan (9, DS) was x-rayed at age 3 and was found to have a " mild " case of Alantoaxial Instability (AOI). We were advised to just be careful with him and not to let him do things like summersaults and tumbles. The orthopaedist told us to come back for a re-check in about 3-4 years. At age 7 he was re-xrayed (Special Olympics required this) and his AOI had actually improved. The orthopaedist said it was because Evan's muscle tone had improved and the muscles in his neck were supporting him better. The orthopaedist again advised us to re-xray every 3-4 years. Terry Mom to Evan and Kohl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 This is exactly what happened with Kaitlyn. Also, we had a doctor speak to our DS group, he recommended rechecks every three years unless there was a problem or symptoms appeared. Darcy Re: atlantoaxial instability My son, Evan (9, DS) was x-rayed at age 3 and was found to have a " mild " case of Alantoaxial Instability (AOI). We were advised to just be careful with him and not to let him do things like summersaults and tumbles. The orthopaedist told us to come back for a re-check in about 3-4 years. At age 7 he was re-xrayed (Special Olympics required this) and his AOI had actually improved. The orthopaedist said it was because Evan's muscle tone had improved and the muscles in his neck were supporting him better. The orthopaedist again advised us to re-xray every 3-4 years. Terry Mom to Evan and Kohl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 I have heard many times that children can be checked every couple of years and the AAI isn't found until later. Di Re: atlantoaxial instability Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 I have heard many times that children can be checked every couple of years and the AAI isn't found until later. Di Re: atlantoaxial instability Hi, My son had all his x-rays come back negative but a friends son is in his 30's and just showed up with this. I understood that once they got past 3 we didn't have to worry any more. Anyone know anything about x-rays when they get older? Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2005 Report Share Posted May 18, 2005 If your child does not present with AAI at the first measurement, Special Olympics does not requrie further testing, at least in the many years Janet was in SO gymnastics. My guess is that if your child doesn't have AAI and is physically active (as Jan was), re-testing isn't required. If your child has AAI, it might improve over the years and testing might bring good news and a release in restrictions. Rick .. dad to Jan Quote Link to comment Share on other sites More sharing options...
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