Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 Hey Keeley!- Welcome! There are a few mamas on here from Canada I think...or they go to places to be casted close to Canada. We are still new at this...we are in our 4th cast now. Im sure other moms and dads will agree when I say DONT WAIT!!!!! Especially sitting at 60 right now. Find a second opinion or go straight to one of hte places that does casting. Other parents have a great spill about what to do and look for.....but I would def get on the ball and not wait like your dr said. Logan was at 30 and we waited to see if it would "correct itself" <because we were told it could> and it quickly advanced to 45.....he wasnt even walking at this point in his life....just crawling. I can imagine how much more it would have progressed and not to mention..made our casting time potentially longer. Logan's mama (45 down to 0 in 4th cast, 14 months old) From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hopeHi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap. Mommy to Thaddeus Sent from my iPhone On Sep 3, 2010, at 9:33 AM, kfaul@... wrote: > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 Thanks. I have sent some requests for other hospitals . Hopefully we can get in quickly.Sent from my BlackBerry® wireless handheldFrom: Medlin <amanda.medlin@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:38:04 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hey Keeley!-Welcome! There are a few mamas on here from Canada I think...or they go to places to be casted close to Canada. We are still new at this...we are in our 4th cast now. Im sure other moms and dads will agree when I say DONT WAIT!!!!! Especially sitting at 60 right now. Find a second opinion or go straight to one of hte places that does casting. Other parents have a great spill about what to do and look for.....but I would def get on the ball and not wait like your dr said. Logan was at 30 and we waited to see if it would "correct itself" <because we were told it could> and it quickly advanced to 45.....he wasnt even walking at this point in his life....just crawling. I can imagine how much more it would have progressed and not to mention..made our casting time potentially longer. Logan's mama(45 down to 0 in 4th cast, 14 months old)From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 12:33:46 PMSubject: Looking for hopeHi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 I started casting Logan at 9 months old. From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 1:19:32 PMSubject: Re: Looking for hope I am in Saskatchewan. I have contacted the shriners in Montreal. Copper is 8 months old now. I hope that they get back to us soon. I will contact the Toronto children's hospital as well. I have heard lots about Mehta casting. My ortho said that she prefers casting to bracing with toddlers. Sent from my BlackBerry® wireless handheld From: <candice_welch85@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700 infantile scoliosis treatment <infantile scoliosis treatment > Replyinfantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 I am in Saskatchewan. I have contacted the shriners in Montreal. Copper is 8 months old now. I hope that they get back to us soon. I will contact the Toronto children's hospital as well. I have heard lots about Mehta casting. My ortho said that she prefers casting to bracing with toddlers. Sent from my BlackBerry® wireless handheldFrom: <candice_welch85@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 He would "army crawl" so to me....it was the harder way to crawl....on your belly...but that was his way. And yes he could sit up. He also learned to walk IN cast. I see him taking the "harder ways to do things" route in life....lol! From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 1:36:24 PMSubject: Re: Looking for hope Was he sitting and crawling when you had him casted? Copper is sitting with assistance, but not crawling Sent from my BlackBerry® wireless handheld From: Medlin <amanda.medlin@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 10:15:55 -0700 (PDT) <infantile scoliosis treatment > Replyinfantile scoliosis treatment Subject: Re: Looking for hope I started casting Logan at 9 months old. From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 1:19:32 PMSubject: Re: Looking for hope I am in Saskatchewan. I have contacted the shriners in Montreal. Copper is 8 months old now. I hope that they get back to us soon. I will contact the Toronto children's hospital as well. I have heard lots about Mehta casting. My ortho said that she prefers casting to bracing with toddlers. Sent from my BlackBerry® wireless handheld From: <candice_welch85@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700 infantile scoliosis treatment <infantile scoliosis treatment > Replyinfantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 Was he sitting and crawling when you had him casted? Copper is sitting with assistance, but not crawlingSent from my BlackBerry® wireless handheldFrom: Medlin <amanda.medlin@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 10:15:55 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope I started casting Logan at 9 months old. From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 1:19:32 PMSubject: Re: Looking for hope I am in Saskatchewan. I have contacted the shriners in Montreal. Copper is 8 months old now. I hope that they get back to us soon. I will contact the Toronto children's hospital as well. I have heard lots about Mehta casting. My ortho said that she prefers casting to bracing with toddlers. Sent from my BlackBerry® wireless handheldFrom: <candice_welch85@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Replyinfantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 Was he sitting and crawling when you had him casted? Copper is sitting with assistance, but not crawlingSent from my BlackBerry® wireless handheldFrom: Medlin <amanda.medlin@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 10:15:55 -0700 (PDT)<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope I started casting Logan at 9 months old. From: "kfaul@..." <kfaul@...>infantile scoliosis treatment Sent: Fri, September 3, 2010 1:19:32 PMSubject: Re: Looking for hope I am in Saskatchewan. I have contacted the shriners in Montreal. Copper is 8 months old now. I hope that they get back to us soon. I will contact the Toronto children's hospital as well. I have heard lots about Mehta casting. My ortho said that she prefers casting to bracing with toddlers. Sent from my BlackBerry® wireless handheldFrom: <candice_welch85@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Replyinfantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 Hi, We live in Toronto, Canada and did eventually receive a referral to Sick Kids where there are I believe 2 doctors that do casting (although I think only one of them actually does Mehta casting). Sick Kids would have been perfect for us, but I will warn you, the waiting times were insane for us. We waited 2 months for a referral appointment, and then were told minimum 3 months for an MRI and then after the results were received, it would be 3-6 months for OR time before they could cast. In the meantime we were watching our daughters back worsen by what felt like the week. There is one mom who did have a good experience at Sick Kids, but she saw a different doctor than us. We had to make the very difficult decision to pursue treatment in the States and were very fortunate to have a physician friend refer us to Shriners, Philadelphia. As Canadians are technically " uninsured " , they were still willing to treat us at no cost. Treatment in a different country has its pros and cons and I would be happy to chat offline about our experience. I guess my warning to you is that I'm not entirely sure how well the Canadian system handles this disease--considering it is rare to start with and our population is lower than the States. When were doing our research, Shriners came up consistently so I feel like they are a good option. Liz Hill (Mother of Olivia Hill, 1st cast 43 degree curve down to 25 degree curve but now have discovered tethered cord and looking a surgery). > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > I like hearing the success stories and and seeing that maybe there is hope. > > Keeley > > Sent from my BlackBerry® wireless handheld > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 How long did you wait to get into the shriners? Did you try Montreal? My Dr wants to wait and do the MRI at a year and then further treatment after that. I am afraid that it will be too late or his curvature will be to severe. Sent from my BlackBerry® wireless handheldFrom: grahamhill@...Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 20:17:00 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hi,We live in Toronto, Canada and did eventually receive a referral to Sick Kids where there are I believe 2 doctors that do casting (although I think only one of them actually does Mehta casting). Sick Kids would have been perfect for us, but I will warn you, the waiting times were insane for us. We waited 2 months for a referral appointment, and then were told minimum 3 months for an MRI and then after the results were received, it would be 3-6 months for OR time before they could cast. In the meantime we were watching our daughters back worsen by what felt like the week. There is one mom who did have a good experience at Sick Kids, but she saw a different doctor than us. We had to make the very difficult decision to pursue treatment in the States and were very fortunate to have a physician friend refer us to Shriners, Philadelphia. As Canadians are technically " uninsured " , they were still willing to treat us at no cost. Treatment in a different country has its pros and cons and I would be happy to chat offline about our experience. I guess my warning to you is that I'm not entirely sure how well the Canadian system handles this disease--considering it is rare to start with and our population is lower than the States. When were doing our research, Shriners came up consistently so I feel like they are a good option.Liz Hill(Mother of Olivia Hill, 1st cast 43 degree curve down to 25 degree curve but now have discovered tethered cord and looking a surgery).> > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > I like hearing the success stories and and seeing that maybe there is hope. > > Keeley > > Sent from my BlackBerry® wireless handheld> > > > ------------------------------------> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2010 Report Share Posted September 3, 2010 How long did you wait to get into the shriners? Did you try Montreal? My Dr wants to wait and do the MRI at a year and then further treatment after that. I am afraid that it will be too late or his curvature will be to severe. Sent from my BlackBerry® wireless handheldFrom: grahamhill@...Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 20:17:00 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hi,We live in Toronto, Canada and did eventually receive a referral to Sick Kids where there are I believe 2 doctors that do casting (although I think only one of them actually does Mehta casting). Sick Kids would have been perfect for us, but I will warn you, the waiting times were insane for us. We waited 2 months for a referral appointment, and then were told minimum 3 months for an MRI and then after the results were received, it would be 3-6 months for OR time before they could cast. In the meantime we were watching our daughters back worsen by what felt like the week. There is one mom who did have a good experience at Sick Kids, but she saw a different doctor than us. We had to make the very difficult decision to pursue treatment in the States and were very fortunate to have a physician friend refer us to Shriners, Philadelphia. As Canadians are technically " uninsured " , they were still willing to treat us at no cost. Treatment in a different country has its pros and cons and I would be happy to chat offline about our experience. I guess my warning to you is that I'm not entirely sure how well the Canadian system handles this disease--considering it is rare to start with and our population is lower than the States. When were doing our research, Shriners came up consistently so I feel like they are a good option.Liz Hill(Mother of Olivia Hill, 1st cast 43 degree curve down to 25 degree curve but now have discovered tethered cord and looking a surgery).> > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > I like hearing the success stories and and seeing that maybe there is hope. > > Keeley > > Sent from my BlackBerry® wireless handheld> > > > ------------------------------------> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Keely, Whatever you do DO NOT WAIT! I know there are some other Canadian families on here to tell you where to go. mom to Audrey, 3rd cast, Salt Lake City > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Keely, Whatever you do DO NOT WAIT! I know there are some other Canadian families on here to tell you where to go. mom to Audrey, 3rd cast, Salt Lake City > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Keeley, There is hope. There are other parents on post from Canada that come to the States for casting. 4 months old isn't too young to start casting and the earlier, the better. I believe that there was a family from Canada who went to SLC for casting and all the expenses, travel and all, were paid for. You could try calling their care coordinator about that to find out how that was possible. Please let me know if ther is anything I can do to help..... Hang in there. - Noelle's mommy, 3 1/2 years oldRochester NYCasted 8 times for 1 1/2 years9 months in braceRegressed and currently in cast 9reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: kfaul@... <kfaul@...>Subject: Looking for hopeinfantile scoliosis treatment Date: Friday, September 3, 2010, 4:33 PM Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. I like hearing the success stories and and seeing that maybe there is hope. Keeley Sent from my BlackBerry® wireless handheld------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 What kind of brace are you using? I have been looking into the spine cor braceSent from my BlackBerry® wireless handheldFrom: <candice_welch85@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 He is in a TLSO brace 20 hours a day. We have seen some correction in the brace but I know there are a bunch of kids that the brace didn't work at all and the curve got worse. There are many different types of braces our there. You need to find what works for you.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:07 PM, kfaul@... wrote: What kind of brace are you using? I have been looking into the spine cor braceSent from my BlackBerry® wireless handheldFrom: <candice_welch85@...> Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap. Mommy to Thaddeus Sent from my iPhone On Sep 3, 2010, at 9:33 AM, kfaul@... wrote: > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 We need to seek more medical help as well so that we can explore all of our options. I am finding that there is tons of information from the states and little from here. I am having a hard time processing the information and also deciding what the best course of action to take.Sent from my BlackBerry® wireless handheldFrom: <candice_welch85@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 21:11:40 -0700infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope He is in a TLSO brace 20 hours a day. We have seen some correction in the brace but I know there are a bunch of kids that the brace didn't work at all and the curve got worse. There are many different types of braces our there. You need to find what works for you.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:07 PM, kfaul@... wrote: What kind of brace are you using? I have been looking into the spine cor braceSent from my BlackBerry® wireless handheldFrom: <candice_welch85@...>Sender: infantile scoliosis treatment Date: Fri, 03 Sep 2010 09:52:49 -0700infantile scoliosis treatment <infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hello where in Canada do you live ? I live in Vancouver bc we currently arnt casting but my son is in a brace. The only hospital in Canada doing casting is Toronto sick kids. If you are in bc the closest hospital is Shriners Portland. We dicided to brace my son because he has other issues with his muscles. If we see any change in his curve we will be heading to Portland Shriners. I would say see another Dr because 60* is very high and any higher he may have problems with his lungs. I'm no. Sure about casting at 4 months.. I think there is a mom with a little one in a cast but not sure. If you can atleast get a brace for now if he's too young and in a few months cast asap.Mommy to Thaddeus Sent from my iPhoneOn Sep 3, 2010, at 9:33 AM, kfaul@... wrote:> Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > I like hearing the success stories and and seeing that maybe there is hope. > Keeley > Sent from my BlackBerry® wireless handheld> > ------------------------------------> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hello, The wait time to been seen by Shriner's in Philadelphia was very fast--2 weeks from the date the referral was made and then they actually offered to cast the next week (although at this point we were still waiting and hoping Sick Kids would work for us). Similary, we had an MRI within a couple of weeks of telling them that we were going to be pursuing treatment with them. It has been very eye-opening to me as we have spent half of Olivia's life " waiting " for medical appointments. We never looked at Montreal Shriners and to be honest, I actually didn't know about the Shriner's system until this happened. I haven't seen any information on casting out of Montreal, but I know they do handle scoliosis so it might be an option. I would be concerned about the " wait and see " approach with such a high curve. The only other thing that came to mind is that if you are in Saskatchewan, I have seen some information about a Dr. Heddon (sp?) out of University of Alberta who handles this condition, And there is always Salt Lake City Shriner's. Let me know how it goes. I'm sure this is very stressful for you. Liz Hill > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > I like hearing the success stories and and seeing that maybe there is hope. > > > Keeley > > > Sent from my BlackBerry® wireless handheld > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hello, The wait time to been seen by Shriner's in Philadelphia was very fast--2 weeks from the date the referral was made and then they actually offered to cast the next week (although at this point we were still waiting and hoping Sick Kids would work for us). Similary, we had an MRI within a couple of weeks of telling them that we were going to be pursuing treatment with them. It has been very eye-opening to me as we have spent half of Olivia's life " waiting " for medical appointments. We never looked at Montreal Shriners and to be honest, I actually didn't know about the Shriner's system until this happened. I haven't seen any information on casting out of Montreal, but I know they do handle scoliosis so it might be an option. I would be concerned about the " wait and see " approach with such a high curve. The only other thing that came to mind is that if you are in Saskatchewan, I have seen some information about a Dr. Heddon (sp?) out of University of Alberta who handles this condition, And there is always Salt Lake City Shriner's. Let me know how it goes. I'm sure this is very stressful for you. Liz Hill > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > I like hearing the success stories and and seeing that maybe there is hope. > > > Keeley > > > Sent from my BlackBerry® wireless handheld > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hello, The wait time to been seen by Shriner's in Philadelphia was very fast--2 weeks from the date the referral was made and then they actually offered to cast the next week (although at this point we were still waiting and hoping Sick Kids would work for us). Similary, we had an MRI within a couple of weeks of telling them that we were going to be pursuing treatment with them. It has been very eye-opening to me as we have spent half of Olivia's life " waiting " for medical appointments. We never looked at Montreal Shriners and to be honest, I actually didn't know about the Shriner's system until this happened. I haven't seen any information on casting out of Montreal, but I know they do handle scoliosis so it might be an option. I would be concerned about the " wait and see " approach with such a high curve. The only other thing that came to mind is that if you are in Saskatchewan, I have seen some information about a Dr. Heddon (sp?) out of University of Alberta who handles this condition, And there is always Salt Lake City Shriner's. Let me know how it goes. I'm sure this is very stressful for you. Liz Hill > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > I like hearing the success stories and and seeing that maybe there is hope. > > > Keeley > > > Sent from my BlackBerry® wireless handheld > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Thanks. It is very stressful. I am now just waiting for one of the hospitals to pick up our case. How did Olivia handle the cast initially?Sent from my BlackBerry® wireless handheldFrom: grahamhill@...Sender: infantile scoliosis treatment Date: Sat, 04 Sep 2010 14:15:57 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope Hello,The wait time to been seen by Shriner's in Philadelphia was very fast--2 weeks from the date the referral was made and then they actually offered to cast the next week (although at this point we were still waiting and hoping Sick Kids would work for us). Similary, we had an MRI within a couple of weeks of telling them that we were going to be pursuing treatment with them. It has been very eye-opening to me as we have spent half of Olivia's life " waiting " for medical appointments. We never looked at Montreal Shriners and to be honest, I actually didn't know about the Shriner's system until this happened. I haven't seen any information on casting out of Montreal, but I know they do handle scoliosis so it might be an option. I would be concerned about the " wait and see " approach with such a high curve. The only other thing that came to mind is that if you are in Saskatchewan, I have seen some information about a Dr. Heddon (sp?) out of University of Alberta who handles this condition, And there is always Salt Lake City Shriner's.Let me know how it goes.I'm sure this is very stressful for you.Liz Hill> > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > I like hearing the success stories and and seeing that maybe there is hope. > > > Keeley > > > Sent from my BlackBerry® wireless handheld> > > > > > ------------------------------------> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 We are only in to our 3rd week, so it is still a big adjustment for us. I was very surprised by how quickly she was able to pick up her motor skills again (figuring out how to sit, bend over to pick things up etc), which I am sure most of the parents on this site can attest to. It is still heartbreaking when she begs me to take it off and tells me it hurts (usually around the tummy flaps after a meal ). And it has been a big selling job at our daycare to get them to agree to continue to care for her. Our biggest concern right now is that nobody read the MRI report before she was casted and it turns out she has a tethered cord, a single missing vertebrae and some kidney issues. They are recommending neuro-surgery when this cast comes off to cut her cord free from where it is tethered--this is where care hundereds of kms away becomes more problematic--when it becomes more than just casting. It won't be just a quick ride home after surgery and we may end up spending days in a hotel. Having said that our local Shriner's chapter (which I also didn't know existed until now) has just contacted us and offered to pay all our travel and accommmodation expenses, which is amazing. What hospitals have you approached? Liz > > > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > > I like hearing the success stories and and seeing that maybe there is hope. > > > > Keeley > > > > Sent from my BlackBerry® wireless handheld > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 We are only in to our 3rd week, so it is still a big adjustment for us. I was very surprised by how quickly she was able to pick up her motor skills again (figuring out how to sit, bend over to pick things up etc), which I am sure most of the parents on this site can attest to. It is still heartbreaking when she begs me to take it off and tells me it hurts (usually around the tummy flaps after a meal ). And it has been a big selling job at our daycare to get them to agree to continue to care for her. Our biggest concern right now is that nobody read the MRI report before she was casted and it turns out she has a tethered cord, a single missing vertebrae and some kidney issues. They are recommending neuro-surgery when this cast comes off to cut her cord free from where it is tethered--this is where care hundereds of kms away becomes more problematic--when it becomes more than just casting. It won't be just a quick ride home after surgery and we may end up spending days in a hotel. Having said that our local Shriner's chapter (which I also didn't know existed until now) has just contacted us and offered to pay all our travel and accommmodation expenses, which is amazing. What hospitals have you approached? Liz > > > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > > I like hearing the success stories and and seeing that maybe there is hope. > > > > Keeley > > > > Sent from my BlackBerry® wireless handheld > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Copper hasn't had an MRI yet. They want to wait until he is a year old. Copper has had ultrasounds on his kidneys, liver and pancreas. That all came back normal. The x-rays show that the spine has no abnormalities. She wants to do an MRI just to be sure. I have contacted the shriners in Montreal and BC childrens hospital. I am going to try Edmonton. I have also spoke to a few Dr and chiropractors in the states, but they have very different views. I am finding that there are so many different opinions about treatments. Sent from my BlackBerry® wireless handheldFrom: grahamhill@...Sender: infantile scoliosis treatment Date: Sat, 04 Sep 2010 15:11:59 +0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Looking for hope We are only in to our 3rd week, so it is still a big adjustment for us. I was very surprised by how quickly she was able to pick up her motor skills again (figuring out how to sit, bend over to pick things up etc), which I am sure most of the parents on this site can attest to. It is still heartbreaking when she begs me to take it off and tells me it hurts (usually around the tummy flaps after a meal ). And it has been a big selling job at our daycare to get them to agree to continue to care for her. Our biggest concern right now is that nobody read the MRI report before she was casted and it turns out she has a tethered cord, a single missing vertebrae and some kidney issues. They are recommending neuro-surgery when this cast comes off to cut her cord free from where it is tethered--this is where care hundereds of kms away becomes more problematic--when it becomes more than just casting. It won't be just a quick ride home after surgery and we may end up spending days in a hotel. Having said that our local Shriner's chapter (which I also didn't know existed until now) has just contacted us and offered to pay all our travel and accommmodation expenses, which is amazing.What hospitals have you approached?Liz> > > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > > I like hearing the success stories and and seeing that maybe there is hope. > > > > Keeley > > > > Sent from my BlackBerry® wireless handheld> > > > > > > > ------------------------------------> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hi I live in Northern Ontario and we started by going to Shriners in Montreal more than 3 1/2 years ago. They began with bracing but when that didn't work the doctor there referred us to Sick Kids in Toronto because the doctor there had more experience with cases similar to my daughter. If you've sent in an application to Shriners in Montreal, call there and follow up. They were wonderful with us. My daughter sees various specialties at Sick Kids and they are wonderful too but it can take a little longer to get an appointment. I hope this helps. > > > > > Hi everyone. My son copper was diagnosed at 4 months and the doctor says to wait and see what happens. What are your thoughts? His curvature is already 60*. I want to seek a second opinion, but an unsure of where I should look here in Canada. > > > I like hearing the success stories and and seeing that maybe there is hope. > > > Keeley > > > Sent from my BlackBerry® wireless handheld > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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