Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Hi , Exercise is the BEST therapy our scoli kids can have! Doing something that helps strengthen their back/side muscles, and keep them well-balanced is the best thing they can do to keep their spines supported by their own body. I know some kids who are seemingly fragile, physically, who do very well in martial arts and fencing and other very physical sports. We have a gold-medal winner in the downhill ski competition (in the Utah Winter games in her age division) here. She is a VEPTR patient! Very cool. Braydon's ONLY restrictions with his VEPTR devices are no trampoline (I don't think any ortho approves of trampolines) and no full-contact football. He can do many other sports and other physically challenging things. I would imagine that Ian would have even fewer restrictions (maybe mother-imposed restrictions) because he doesn't have any foreign-body implants or anything that would potentially damage the spine from inside. Ask the ortho, but I'm sure as long as he stays healthy and strong (strong being the goal!) he'll be fine. Carmell mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Thanks for the input Carmell. Interesting about the trampoline, but it makes sense...I'm sure it jars the spine. I will be sure to see what Dr. K says the next time we are up there. Noelle (12-2-01)Ian (8-15-04) Re: contact sports Hi ,Exercise is the BEST therapy our scoli kids can have! Doing something that helps strengthen their back/sidemuscles, and keep them well-balanced is the best thingthey can do to keep their spines supported by theirown body. I know some kids who are seemingly fragile,physically, who do very well in martial arts andfencing and other very physical sports. We have agold-medal winner in the downhill ski competition (inthe Utah Winter games in her age division) here. Sheis a VEPTR patient! Very cool.Braydon's ONLY restrictions with his VEPTR devices areno trampoline (I don't think any ortho approves oftrampolines) and no full-contact football. He can domany other sports and other physically challengingthings. I would imagine that Ian would have evenfewer restrictions (maybe mother-imposed restrictions)because he doesn't have any foreign-body implants oranything that would potentially damage the spine frominside. Ask the ortho, but I'm sure as long as hestays healthy and strong (strong being the goal!)he'll be fine.Carmellmom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 We have been told no contact sports like football and hockey. Also, because has torticollis that has her head tipping the opposite direction of her spinal curve, no gymnastics. She swims and has started dance class. Gail Re: contact sports Hi ,Exercise is the BEST therapy our scoli kids can have! Doing something that helps strengthen their back/sidemuscles, and keep them well-balanced is the best thingthey can do to keep their spines supported by theirown body. I know some kids who are seemingly fragile,physically, who do very well in martial arts andfencing and other very physical sports. We have agold-medal winner in the downhill ski competition (inthe Utah Winter games in her age division) here. Sheis a VEPTR patient! Very cool.Braydon's ONLY restrictions with his VEPTR devices areno trampoline (I don't think any ortho approves oftrampolines) and no full-contact football. He can domany other sports and other physically challengingthings. I would imagine that Ian would have evenfewer restrictions (maybe mother-imposed restrictions)because he doesn't have any foreign-body implants oranything that would potentially damage the spine frominside. Ask the ortho, but I'm sure as long as hestays healthy and strong (strong being the goal!)he'll be fine.Carmellmom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Do you think she would have more restrictions since she has the VEPTR versus someone like Ian who has only been casted? Noelle (12-2-01)Ian (8-15-04) Re: contact sports Hi ,Exercise is the BEST therapy our scoli kids can have! Doing something that helps strengthen their back/sidemuscles, and keep them well-balanced is the best thingthey can do to keep their spines supported by theirown body. I know some kids who are seemingly fragile,physically, who do very well in martial arts andfencing and other very physical sports. We have agold-medal winner in the downhill ski competition (inthe Utah Winter games in her age division) here. Sheis a VEPTR patient! Very cool.Braydon's ONLY restrictions with his VEPTR devices areno trampoline (I don't think any ortho approves oftrampolines) and no full-contact football. He can domany other sports and other physically challengingthings. I would imagine that Ian would have evenfewer restrictions (maybe mother-imposed restrictions)because he doesn't have any foreign-body implants oranything that would potentially damage the spine frominside. Ask the ortho, but I'm sure as long as hestays healthy and strong (strong being the goal!)he'll be fine.Carmellmom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Possibly because with the VEPTR she has those rods that could potentially, although I think it would be difficult, break. I would ask your ortho. I can only go by what we have been told for . gAil Re: contact sports Hi ,Exercise is the BEST therapy our scoli kids can have! Doing something that helps strengthen their back/sidemuscles, and keep them well-balanced is the best thingthey can do to keep their spines supported by theirown body. I know some kids who are seemingly fragile,physically, who do very well in martial arts andfencing and other very physical sports. We have agold-medal winner in the downhill ski competition (inthe Utah Winter games in her age division) here. Sheis a VEPTR patient! Very cool.Braydon's ONLY restrictions with his VEPTR devices areno trampoline (I don't think any ortho approves oftrampolines) and no full-contact football. He can domany other sports and other physically challengingthings. I would imagine that Ian would have evenfewer restrictions (maybe mother-imposed restrictions)because he doesn't have any foreign-body implants oranything that would potentially damage the spine frominside. Ask the ortho, but I'm sure as long as hestays healthy and strong (strong being the goal!)he'll be fine.Carmellmom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Thanks Gail. I will definitely ask at our next appt. Noelle (12-2-01)Ian (8-15-04) Re: contact sports Hi ,Exercise is the BEST therapy our scoli kids can have! Doing something that helps strengthen their back/sidemuscles, and keep them well-balanced is the best thingthey can do to keep their spines supported by theirown body. I know some kids who are seemingly fragile,physically, who do very well in martial arts andfencing and other very physical sports. We have agold-medal winner in the downhill ski competition (inthe Utah Winter games in her age division) here. Sheis a VEPTR patient! Very cool.Braydon's ONLY restrictions with his VEPTR devices areno trampoline (I don't think any ortho approves oftrampolines) and no full-contact football. He can domany other sports and other physically challengingthings. I would imagine that Ian would have evenfewer restrictions (maybe mother-imposed restrictions)because he doesn't have any foreign-body implants oranything that would potentially damage the spine frominside. Ask the ortho, but I'm sure as long as hestays healthy and strong (strong being the goal!)he'll be fine.Carmellmom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Yes, yes, yes!! There is hope. Don't give up on this. Treatment can bring back the abilities to play and play well. I hope you find a treatment routine that works--but yes, don't give up. Keeping active is wonderful in helping the joints to stay active etc and much more fun than therapy is. e, mom to " joe " 21 poly/lupus smiless87 <smiless87@...> wrote: Hello, My son is almost 13 years old. He is waiting to see a Rheumatologist at Sick Kids in Toronto. His pediatrician thinks that he has Ankylosing Spondylitis. He's exhibiting all the symptoms. I know it it way too early to ask, but when (and if) can he play contact sports again. He is an elite hockey player and the last four months have been really hard on him. He loves to play contact sports. I realize that he is a long way from feeling better, however do children ever play contact sports who have jra or Ankylosing Spondylitis? He is currently in a lot of pain. His knees and chest are the worst areas for him. They initially thought he was having heart problems, then costochindritis, now jra. My road has been hard. A couple of doctor's more or less thought we were crazy until one doctor thought he was a classic case and had him seen by an eye doctor (he also can have sever eye pain) and put on the urgent waiting list for sick kids. Just trying to see if I can attempt to lift his spirits...he's normally a very active kid. This has been very hard on him. --------------------------------- You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Kids certainly can play sports with arthritis and I do know there was one boy at my son's high school who continued to play hockey. I did not know him personally, but I do know a mom whose son played with him. The young man did have some struggles and sometimes it was tough to continue, but he did. For my son, he was a baseball and volleyball player with aspirations of playing in high school, but the disease hit him in eighth grade and by the time we got some meds to get him under control, he had lost a lot of time and did not feel he could compete, as his school had a very competitive sports program. It was very hard for him to battle through and keep playing at the level he would have needed to be at. He probably would have made the volleyball team in junior/senior year, but he chose not to try. That was his choice. Your son, with proper control of the disease, should be able to continue to play hockey. Having had 3 kids involved in sports, and knowing the dedication involved in elite sports (both of my daughters played elite level volleyball), I do understand how hard it might be for your son. The only mention the dr made of restricting sports came when Chris complained of pain in his hips. At that point the rheumy said if he had arthritis in his hips, certain sports would have to be stopped as they caused too much damage to the joint. However, it was discovered that the pain actually was from his pelvic rim and sacroiliac, which is when spondylitis was diagnosed and the dr said it was fine to continue playing. did continue with baseball and volleyball at that point for a bit, but as I said he decided to stop because we could not get his meds right and it was just too painful at that time. He was around 14 then and he was finally under good control around 16. I would think that with good pain control your son should be able to play. There is really no reason not too, unless the pain is too severe and he just can't do it. But keeping active will definitely help the tendons and joints to stay flexible. If your son can still skate comfortably or at least get to a point where he can, hockey should be doable. Like I said, the dr never said my son could not play sports because he has spondylitis. Please keep us updated as to how your son is doing, and welcome to the group. There is lots of knowledge and compassion here, Michele ( 20, spondy) A website you might want to check out is www.spondylitis.org <http://www.spondylitis.org/> There is some good info about the disease there. ________________________________ From: [mailto: ] On Behalf Of smiless87 Sent: Monday, March 31, 2008 11:21 AM Subject: Contact Sports Hello, My son is almost 13 years old. He is waiting to see a Rheumatologist at Sick Kids in Toronto. His pediatrician thinks that he has Ankylosing Spondylitis. He's exhibiting all the symptoms. I know it it way too early to ask, but when (and if) can he play contact sports again. He is an elite hockey player and the last four months have been really hard on him. He loves to play contact sports. I realize that he is a long way from feeling better, however do children ever play contact sports who have jra or Ankylosing Spondylitis? He is currently in a lot of pain. His knees and chest are the worst areas for him. They initially thought he was having heart problems, then costochindritis, now jra. My road has been hard. A couple of doctor's more or less thought we were crazy until one doctor thought he was a classic case and had him seen by an eye doctor (he also can have sever eye pain) and put on the urgent waiting list for sick kids. Just trying to see if I can attempt to lift his spirits...he's normally a very active kid. This has been very hard on him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Our ped rheumy does not limit any activity. He says it is up to the child. If it isn't too painful or you can manage the pain you can play sports. My son has heel pain that we manage with heel pads in his shoe. He plays basketball and still has some pain with it but plays through it. Hope your son will be back to hockey soon! & Grant (11, PsA/Uveitis) > > Kids certainly can play sports with arthritis and I do know there was > one boy at my son's high school who continued to play hockey. I did not > know him personally, but I do know a mom whose son played with him. The > young man did have some struggles and sometimes it was tough to > continue, but he did. For my son, he was a baseball and volleyball > player with aspirations of playing in high school, but the disease hit > him in eighth grade and by the time we got some meds to get him under > control, he had lost a lot of time and did not feel he could compete, as > his school had a very competitive sports program. It was very hard for > him to battle through and keep playing at the level he would have needed > to be at. He probably would have made the volleyball team in > junior/senior year, but he chose not to try. That was his choice. Your > son, with proper control of the disease, should be able to continue to > play hockey. Having had 3 kids involved in sports, and knowing the > dedication involved in elite sports (both of my daughters played elite > level volleyball), I do understand how hard it might be for your son. > > The only mention the dr made of restricting sports came when Chris > complained of pain in his hips. At that point the rheumy said if he had > arthritis in his hips, certain sports would have to be stopped as they > caused too much damage to the joint. However, it was discovered that the > pain actually was from his pelvic rim and sacroiliac, which is when > spondylitis was diagnosed and the dr said it was fine to continue > playing. did continue with baseball and volleyball at that point > for a bit, but as I said he decided to stop because we could not get his > meds right and it was just too painful at that time. He was around 14 > then and he was finally under good control around 16. > > I would think that with good pain control your son should be able to > play. There is really no reason not too, unless the pain is too severe > and he just can't do it. But keeping active will definitely help the > tendons and joints to stay flexible. If your son can still skate > comfortably or at least get to a point where he can, hockey should be > doable. Like I said, the dr never said my son could not play sports > because he has spondylitis. > > Please keep us updated as to how your son is doing, and welcome to the > group. There is lots of knowledge and compassion here, Michele ( > 20, spondy) > > A website you might want to check out is www.spondylitis.org > <http://www.spondylitis.org/> There is some good info about the disease > there. > > > > > > ________________________________ > > From: [mailto: ] On > Behalf Of smiless87 > Sent: Monday, March 31, 2008 11:21 AM > > Subject: Contact Sports > > > > Hello, My son is almost 13 years old. He is waiting to see a > Rheumatologist at Sick Kids in Toronto. His pediatrician thinks > that he has Ankylosing Spondylitis. He's exhibiting all the > symptoms. > > I know it it way too early to ask, but when (and if) can he play > contact sports again. > > He is an elite hockey player and the last four months have been > really hard on him. He loves to play contact sports. I realize > that he is a long way from feeling better, however do children ever > play contact sports who have jra or Ankylosing Spondylitis? > > He is currently in a lot of pain. His knees and chest are the worst > areas for him. They initially thought he was having heart problems, > then costochindritis, now jra. My road has been hard. A couple of > doctor's more or less thought we were crazy until one doctor thought > he was a classic case and had him seen by an eye doctor (he also can > have sever eye pain) and put on the urgent waiting list for sick > kids. > > Just trying to see if I can attempt to lift his spirits...he's > normally a very active kid. This has been very hard on him. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 To add to that, our rheumy said that JRA is " self limiting " - meaning your symptoms dictate what you can and can't do.? With this said, I am not going to pretend that my son listens to what his body is telling him - he will play baseball through the pain - and push himself - and pay for it later.? But, when he is flaring and is unable to function it's a totally different story.? But all in all, I think that he knows how much he can take - and quite frankly, with a flare coming on, playing baseball or not in the last couple of days that he is functional before a flare has little to do with how bad his flare is or how long it lasts.? That has been our experience. would rather play baseball than do anything else.? Keeping mobile has it's benefits - even when it over-tires him, and with his bone density issues, the weight baring exercise is so very important for his health. Val Rob's Mom (10,systemic) Contact Sports > > > > Hello, My son is almost 13 years old. He is waiting to see a > Rheumatologist at Sick Kids in Toronto. His pediatrician thinks > that he has Ankylosing Spondylitis. He's exhibiting all the > symptoms. > > I know it it way too early to ask, but when (and if) can he play > contact sports again. > > He is an elite hockey player and the last four months have been > really hard on him. He loves to play contact sports. I realize > that he is a long way from feeling better, however do children ever > play contact sports who have jra or Ankylosing Spondylitis? > > He is currently in a lot of pain. His knees and chest are the worst > areas for him. They initially thought he was having heart problems, > then costochindritis, now jra. My road has been hard. A couple of > doctor's more or less thought we were crazy until one doctor thought > he was a classic case and had him seen by an eye doctor (he also can > have sever eye pain) and put on the urgent waiting list for sick > kids. > > Just trying to see if I can attempt to lift his spirits...he's > normally a very active kid. This has been very hard on him. > > > > > > Quote Link to comment Share on other sites More sharing options...
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