Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 My son is treated in the Shriner's network with a 70° curve. Let me know what I can do for you. Sandi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 My son is now 12yrs old. He has been treated at PCMC in SLC, but we have visited Shriners often. Braydon has congenital scoliosis - was 75 degrees at 9 months old. I see you are in Canada? Is that right? We'd love an intro from you, if you'd like to share. Carmell dmcmow wrote: Hi New to this forum but not new to small child with scoliosis. Would like to chat with anyone who has been seen at Saltlake Shriners Hospital with a child with high degree of curvature 60* +. Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ --------------------------------- Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hello, My son is also 2 yrs old and is being seen at Salt Lake Shriners. His curve was not that high, but I'd be glad to help with any questions that you have. ~ > > Hi > New to this forum but not new to small child with scoliosis. > > Would like to chat with anyone who has been seen at Saltlake Shriners > Hospital with a child with high degree of curvature 60* +. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hi Carmell Ive read so much of what you have posted Id like to send you the details if you have the time. So when i Get home from work i'll do that. I have to get our passports today so im kind of busy but i will have more time tonight. Yes we are from Edmonton Alberta. My son's name is Dylan he's a great kid he just has a problem and i will do everything in my power to help him. Our biggest problem is that we thought we were doing the best for him and sadly we fell through the cracks in our health care system. Right now we are just so mad i really need to talk to anyone willing to listen. To ease my own mind really havent slept much lately. Thanks so much Darrell Re: 2 year old My son is now 12yrs old. He has been treated at PCMC in SLC, but we have visited Shriners often. Braydon has congenital scoliosis - was 75 degrees at 9 months old. I see you are in Canada? Is that right? We'd love an intro from you, if you'd like to share. Carmell dmcmow wrote: Hi New to this forum but not new to small child with scoliosis. Would like to chat with anyone who has been seen at Saltlake Shriners Hospital with a child with high degree of curvature 60* +. Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ --------------------------------- Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hi Darrell, I am from Edmonton too!! Now we live in Dallas. Welcome to the group!! Everyone here is incredibly helpful and will give you very valuable information and advice. I know that you are not at the point of thinking about surgery, but I do know that they do the veptr surgery in Calgary, perhaps they are also well schooled in casting. Connie Re: 2 year old Hi Carmell Ive read so much of what you have posted Id like to send you the details if you have the time. So when i Get home from work i'll do that. I have to get our passports today so im kind of busy but i will have more time tonight. Yes we are from Edmonton Alberta. My son's name is Dylan he's a great kid he just has a problem and i will do everything in my power to help him. Our biggest problem is that we thought we were doing the best for him and sadly we fell through the cracks in our health care system. Right now we are just so mad i really need to talk to anyone willing to listen. To ease my own mind really havent slept much lately. Thanks so much Darrell Re: 2 year old My son is now 12yrs old. He has been treated at PCMC in SLC, but we have visited Shriners often. Braydon has congenital scoliosis - was 75 degrees at 9 months old. I see you are in Canada? Is that right? We'd love an intro from you, if you'd like to share. Carmell dmcmow wrote: Hi New to this forum but not new to small child with scoliosis. Would like to chat with anyone who has been seen at Saltlake Shriners Hospital with a child with high degree of curvature 60* +. Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ --------------------------------- Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 You might want to check this doctor out. 1820 Richmond Road S.W. Calgary, Alberta, Canada T2T 5C7 Dr. A. Harder - BSc, MD, FRCS© Clinical Associate Professor Pediatric Orthopedic Surgeon Fax - james.harder@... Dr. L. Parsons - MD, FRCS© Pediatric Orthopedic Surgeon Fax Connie Re: 2 year old Hi Carmell Ive read so much of what you have posted Id like to send you the details if you have the time. So when i Get home from work i'll do that. I have to get our passports today so im kind of busy but i will have more time tonight. Yes we are from Edmonton Alberta. My son's name is Dylan he's a great kid he just has a problem and i will do everything in my power to help him. Our biggest problem is that we thought we were doing the best for him and sadly we fell through the cracks in our health care system. Right now we are just so mad i really need to talk to anyone willing to listen. To ease my own mind really havent slept much lately. Thanks so much Darrell Re: 2 year old My son is now 12yrs old. He has been treated at PCMC in SLC, but we have visited Shriners often. Braydon has congenital scoliosis - was 75 degrees at 9 months old. I see you are in Canada? Is that right? We'd love an intro from you, if you'd like to share. Carmell dmcmow wrote: Hi New to this forum but not new to small child with scoliosis. Would like to chat with anyone who has been seen at Saltlake Shriners Hospital with a child with high degree of curvature 60* +. Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ --------------------------------- Be a better sports nut! Let your teams follow you with Yahoo Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hi Darrell, I look forward to hearing from you about Dylan. I know of a couple of families in Edmonton who may be able to help you - at least to let you know you are not alone. We'll talk more about that later. Carmell Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support group http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/ --------------------------------- Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Hi We take my daughter to Shriners, SLC - Her curves was 50 degrees before her VEPTR implant surgery. She is 8 yrs old now. Nice to 'meet' you. Jacki in Vancouver, BC, Canada > > Hi > New to this forum but not new to small child with scoliosis. > > Would like to chat with anyone who has been seen at Saltlake Shriners > Hospital with a child with high degree of curvature 60* +. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Hi, My 2 year old has an 80 degree curve and also treated within the Shriners organization both in Chicago and Erie. Welcome to the group and please let us know what we can do for you and any questions you have. Hang in there! Aekta > > Hi > New to this forum but not new to small child with scoliosis. > > Would like to chat with anyone who has been seen at Saltlake Shriners > Hospital with a child with high degree of curvature 60* +. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 Your child is 2 years are you still casting . Re: 2 year old Hi, My 2 year old has an 80 degree curve and also treated within the Shriners organization both in Chicago and Erie. Welcome to the group and please let us know what we can do for you and any questions you have. Hang in there! Aekta > > Hi > New to this forum but not new to small child with scoliosis. > > Would like to chat with anyone who has been seen at Saltlake Shriners > Hospital with a child with high degree of curvature 60* +. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2007 Report Share Posted December 1, 2007 Yes. Unfortunately Max's curve has still progressed despite casting, but Dr. Sturm feels it is related to a connective tissue disorder causing the curve to progress. We are in the process of getting this confirmed with a geneticist. My honest opinion about casting is that it will help some children, but not all children. Not all children with scoliosis have the same type of curvature and it's location can differ. Max has been casted 8 times for 15 months now with 12/18 being his 9th and final cast before surgery. Had we not found a doctor wanting to cast Max he would've had surgery at 13 months of age (with a 54 degree) instead of 30 months old (with an 84 degree curve). We were able to buy Max 17 months of growing time. Depsite having no correction from casting I strongly believe the cast helped decrease the rapid progression and bought Max time to grow. I am a firm believer in casting for many reason primarliy it is far less invasive than surgery and allows for consistent positioning compared to a brace. Our options were: 1. Do nothing " wait and see " 2. Brace-which we did and the curve double 3 months in cast woren 20 hours/day (my biggest regret, I wish we casted right away) 3. Casting 4. Surgery To many this may sound crazy, but I still have hope that maybe this next cast will provide correction or maybe when he is out of the cast for a few weeks before surgery a miracle will happen! I refuse to give up hope as Max continues to amaze me everyday! Please let me know if you have any other questions. Good Luck! Aekta > > > > Hi > > New to this forum but not new to small child with scoliosis. > > > > Would like to chat with anyone who has been seen at Saltlake > Shriners > > Hospital with a child with high degree of curvature 60* +. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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