Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Hello everyone I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? Thanks in advance Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Time is very crucial in my opinion and from what we've seen. Casting works because as the child grows the spine lines to grow straight. That's why it's so successful when you start under 2 yrs old, because they are growing so much. I personally wouldn't wait. You are being a great mom and thinking ahead! Curt From: beaubalicious <bridgyfamily@...> infantile scoliosis treatment Sent: Saturday, March 31, 2012 1:51 AM Subject: Fast-tracking diagnosis Hello everyone I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? Thanks in advance Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2012 Report Share Posted March 31, 2012 Emma, Without knowing more specifics I can't say too much .... do you know the degree? Where you given an RVAD? is there rotation? Did anyone tell you these things? I know the specialist is the most qualified to read these X rays..but did they give you an idea? If it was me I would fly to Sydney. Time is very important & 6 - 12 mos is a lot of time if the curve is progressive. (if the curve is over 25 ish degrees or the RVAD is over 20 this COULD MAYBE indicate a progressive curve) My sons curve progressed 11 degrees in 2 1/2 months. I pushed for a quick MRI so that we could move on to treatment faster. What was tripping us up was the insurance investigating to see if an MRI was really necessary. I actually signed a form stating that if the insurance wouldn't pay we would out of pocket so that I could speed up the process. Thankfully the insurance did finally approve it & pay although it took them 5 months (Levi was in his 2nd cast before they paid) We choose to travel for casting so I do understand the added expense & stress that brings. We fly a few states over every 2-3 months to change my sons cast. Best of luck! Amber mommy to Levi in Cast #3 SLC from 31* down to 15* in cast > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month > old son, Beau has just been diagnosed with infantile scoliosis. Once the > X-rays confirmed the scoliosis the radiologist told us that he needs an > MRI to assess whether there are any other neurological conditions going on > and basically go from there. Trouble is, we live in Perth, Western > Australia and we only have one children's hospital and one paediatric > orthopaedic specialist. When I rang to find out when his appointment and > MRI will be I was told that there is a 6 - 12 month waiting list just to > see the specialist. To me this doesn't seem acceptable because from what > I've read if the scoliosis is progressive time could be crucial to a good > outcome for my son. I'm now seriously considering flying to Sydney, > Australia to see a specialist there - I've been told I can get an > appointment with a specialist there within a couple of weeks. My question > is - how crucial is time when dealing with infantile scoliosis? We really > don't know anymore about his condition at this point other than scoliosis. > But I thought that a firm diagnosis sooner rather than later would be > better so we can then look at his treatment options. Or am I being a > neurotic mum? > > Thanks in advance > Emma > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Thanks for your response Curt. I'm going to fly to Sydney and get this sorted. I'm don't want to be thinking of the 'what ifs' later down the track if it is progressive. Kids deserve the best. > > Time is very crucial in my opinion and from what we've seen. Casting works because as the child grows the spine lines to grow straight. That's why it's so successful when you start under 2 yrs old, because they are growing so much. I personally wouldn't wait. You are being a great mom and thinking ahead! >  > Curt >  > > > ________________________________ > From: beaubalicious <bridgyfamily@...> > infantile scoliosis treatment > Sent: Saturday, March 31, 2012 1:51 AM > Subject: Fast-tracking diagnosis > > > >  > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when > dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Thanks for your reply Amber. No we really don't know anything at the moment. It seems that no one here has any idea about the condition??? That's why I'm so desperate to see a specialist - to get a firm diagnosis and move forward with whatever Beau needs. We have private health insurance and our health system here is a little different to the US so I'm hopeful that we won't have the dramas you have experienced. Our biggest problem is the lack of doctors in Perth - the most isolated city in the world. But after the responses I've had here and doing a little more research today I've decided that Sydney is the way to go, to see a specialist and expedite the MRI. Luckily I have family I can stay with there to keep the cost down. Thanks again for your reply. I'm feeling rather lost and alone with the early diagnosis. Cheers Emma > > Emma, > Without knowing more specifics I can't say too much .... do you know the > degree? Where you given an RVAD? is there rotation? Did anyone tell you > these things? I know the specialist is the most qualified to read these X > rays..but did they give you an idea? If it was me I would fly to Sydney. > Time is very important & 6 - 12 mos is a lot of time if the curve is > progressive. (if the curve is over 25 ish degrees or the RVAD is over 20 > this COULD MAYBE indicate a progressive curve) My sons curve progressed 11 > degrees in 2 1/2 months. I pushed for a quick MRI so that we could move > on to treatment faster. What was tripping us up was the insurance > investigating to see if an MRI was really necessary. I actually signed a > form stating that if the insurance wouldn't pay we would out of pocket so > that I could speed up the process. Thankfully the insurance did finally > approve it & pay although it took them 5 months (Levi was in his 2nd cast > before they paid) We choose to travel for casting so I do understand the > added expense & stress that brings. We fly a few states over every 2-3 > months to change my sons cast. Best of luck! > Amber > mommy to Levi > in Cast #3 SLC from 31* down to 15* in cast > > > > > Hello everyone > > > > I'm new to your group and would really appreciate some advice. My 8 month > > old son, Beau has just been diagnosed with infantile scoliosis. Once the > > X-rays confirmed the scoliosis the radiologist told us that he needs an > > MRI to assess whether there are any other neurological conditions going on > > and basically go from there. Trouble is, we live in Perth, Western > > Australia and we only have one children's hospital and one paediatric > > orthopaedic specialist. When I rang to find out when his appointment and > > MRI will be I was told that there is a 6 - 12 month waiting list just to > > see the specialist. To me this doesn't seem acceptable because from what > > I've read if the scoliosis is progressive time could be crucial to a good > > outcome for my son. I'm now seriously considering flying to Sydney, > > Australia to see a specialist there - I've been told I can get an > > appointment with a specialist there within a couple of weeks. My question > > is - how crucial is time when dealing with infantile scoliosis? We really > > don't know anymore about his condition at this point other than scoliosis. > > But I thought that a firm diagnosis sooner rather than later would be > > better so we can then look at his treatment options. Or am I being a > > neurotic mum? > > > > Thanks in advance > > Emma > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 Thanks for your reply Amber. No we really don't know anything at the moment. It seems that no one here has any idea about the condition??? That's why I'm so desperate to see a specialist - to get a firm diagnosis and move forward with whatever Beau needs. We have private health insurance and our health system here is a little different to the US so I'm hopeful that we won't have the dramas you have experienced. Our biggest problem is the lack of doctors in Perth - the most isolated city in the world. But after the responses I've had here and doing a little more research today I've decided that Sydney is the way to go, to see a specialist and expedite the MRI. Luckily I have family I can stay with there to keep the cost down. Thanks again for your reply. I'm feeling rather lost and alone with the early diagnosis. Cheers Emma > > Emma, > Without knowing more specifics I can't say too much .... do you know the > degree? Where you given an RVAD? is there rotation? Did anyone tell you > these things? I know the specialist is the most qualified to read these X > rays..but did they give you an idea? If it was me I would fly to Sydney. > Time is very important & 6 - 12 mos is a lot of time if the curve is > progressive. (if the curve is over 25 ish degrees or the RVAD is over 20 > this COULD MAYBE indicate a progressive curve) My sons curve progressed 11 > degrees in 2 1/2 months. I pushed for a quick MRI so that we could move > on to treatment faster. What was tripping us up was the insurance > investigating to see if an MRI was really necessary. I actually signed a > form stating that if the insurance wouldn't pay we would out of pocket so > that I could speed up the process. Thankfully the insurance did finally > approve it & pay although it took them 5 months (Levi was in his 2nd cast > before they paid) We choose to travel for casting so I do understand the > added expense & stress that brings. We fly a few states over every 2-3 > months to change my sons cast. Best of luck! > Amber > mommy to Levi > in Cast #3 SLC from 31* down to 15* in cast > > > > > Hello everyone > > > > I'm new to your group and would really appreciate some advice. My 8 month > > old son, Beau has just been diagnosed with infantile scoliosis. Once the > > X-rays confirmed the scoliosis the radiologist told us that he needs an > > MRI to assess whether there are any other neurological conditions going on > > and basically go from there. Trouble is, we live in Perth, Western > > Australia and we only have one children's hospital and one paediatric > > orthopaedic specialist. When I rang to find out when his appointment and > > MRI will be I was told that there is a 6 - 12 month waiting list just to > > see the specialist. To me this doesn't seem acceptable because from what > > I've read if the scoliosis is progressive time could be crucial to a good > > outcome for my son. I'm now seriously considering flying to Sydney, > > Australia to see a specialist there - I've been told I can get an > > appointment with a specialist there within a couple of weeks. My question > > is - how crucial is time when dealing with infantile scoliosis? We really > > don't know anymore about his condition at this point other than scoliosis. > > But I thought that a firm diagnosis sooner rather than later would be > > better so we can then look at his treatment options. Or am I being a > > neurotic mum? > > > > Thanks in advance > > Emma > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 I just wanted to reiterate what everyone else is saying- Go Now. Flying to Sydney is worth it. Promise. My (at the time 5 1/2 month old) was given an xray that confirmed she had PIS. I didn't have a (correct) degree of curvature, I didn't have an RVAD, I just knew she needed more than most anyone here could give her. She was at a specialist (a physician at Cincinnati Children's hospital) who I called and scheduled with myself, within 2 weeks and casted 3 weeks later. Your gut is telling you to move fast- listen to it. It's not wrong. Good job momma! You're doing everything right. Momma to Ella, 6 1/2 months, in cast #1- 40* out of cast, 10* in cast > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 I just wanted to reiterate what everyone else is saying- Go Now. Flying to Sydney is worth it. Promise. My (at the time 5 1/2 month old) was given an xray that confirmed she had PIS. I didn't have a (correct) degree of curvature, I didn't have an RVAD, I just knew she needed more than most anyone here could give her. She was at a specialist (a physician at Cincinnati Children's hospital) who I called and scheduled with myself, within 2 weeks and casted 3 weeks later. Your gut is telling you to move fast- listen to it. It's not wrong. Good job momma! You're doing everything right. Momma to Ella, 6 1/2 months, in cast #1- 40* out of cast, 10* in cast > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 HiWe are in Melbourne and got seen at RCH in 2 weeks with our 6 month oldHave you had x rays done that you can forward across. Any hospital should be able to take a spinal x ray so you can contact Sydney or Melbourne and work out what to do. CheersMeagabSent from my iPhoneOn 01/04/2012, at 9:42 PM, "beaubalicious" <bridgyfamily@...> wrote: Thanks for your response Curt. I'm going to fly to Sydney and get this sorted. I'm don't want to be thinking of the 'what ifs' later down the track if it is progressive. Kids deserve the best.>> Time is very crucial in my opinion and from what we've seen. Casting works because as the child grows the spine lines to grow straight. That's why it's so successful when you start under 2 yrs old, because they are growing so much. I personally wouldn't wait. You are being a great mom and thinking ahead!>  > Curt>  > > > ________________________________> From: beaubalicious <bridgyfamily@...>> infantile scoliosis treatment > Sent: Saturday, March 31, 2012 1:51 AM> Subject: Fast-tracking diagnosis> > > >  > > Hello everyone> > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when> dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum?> > Thanks in advance> Emma> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 HiWe are in Melbourne and got seen at RCH in 2 weeks with our 6 month oldHave you had x rays done that you can forward across. Any hospital should be able to take a spinal x ray so you can contact Sydney or Melbourne and work out what to do. CheersMeagabSent from my iPhoneOn 01/04/2012, at 9:42 PM, "beaubalicious" <bridgyfamily@...> wrote: Thanks for your response Curt. I'm going to fly to Sydney and get this sorted. I'm don't want to be thinking of the 'what ifs' later down the track if it is progressive. Kids deserve the best.>> Time is very crucial in my opinion and from what we've seen. Casting works because as the child grows the spine lines to grow straight. That's why it's so successful when you start under 2 yrs old, because they are growing so much. I personally wouldn't wait. You are being a great mom and thinking ahead!>  > Curt>  > > > ________________________________> From: beaubalicious <bridgyfamily@...>> infantile scoliosis treatment > Sent: Saturday, March 31, 2012 1:51 AM> Subject: Fast-tracking diagnosis> > > >  > > Hello everyone> > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when> dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum?> > Thanks in advance> Emma> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 EmmaYou are far from neurotic! You are right on point! Time is absolutely crucial. It can be your worst enemy. There is a window of opportunity here for the best chance of success and you are spot on! Take it!!! Many of us travel for care so its not unusual to have to do so in this case. I urge you to go. You wont be sorry. My sons scoli progressed 30 degrees in 3 months. He was casted at 60 degrees and is now done with treatment and is at 8 degrees. Casting does work if done in time. Go for it!!! mom to isaiahSent from my Verizon Wireless 4G LTE DROID Fast-tracking diagnosis Hello everyone I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? Thanks in advance Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 EmmaYou are far from neurotic! You are right on point! Time is absolutely crucial. It can be your worst enemy. There is a window of opportunity here for the best chance of success and you are spot on! Take it!!! Many of us travel for care so its not unusual to have to do so in this case. I urge you to go. You wont be sorry. My sons scoli progressed 30 degrees in 3 months. He was casted at 60 degrees and is now done with treatment and is at 8 degrees. Casting does work if done in time. Go for it!!! mom to isaiahSent from my Verizon Wireless 4G LTE DROID Fast-tracking diagnosis Hello everyone I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? Thanks in advance Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 I agree!When we found out that jaylin had scoliosis and had a MRI he was at 24 degrees. We ended up having a second doctor look at him because they was talking brace. So finally we saw dr. K at Riley hospital in October I think, and jaylins curve shot up to 34, he was casted in dec. it took us awhile to decide on if we should and finally we had jaylin casted, but we didn't join this website until he was casted and oh my goodness everyone has helped us so much! The only thing I'd of done different is I would of casted sooner but I was scared! That's the good thing with all these families, we are all scared or were scared and we totally understand each other!!!!Go for it momma! Start getting your baby's numbers down lower Live, laugh, and loveJoyOn Apr 1, 2012, at 6:24 PM, "missikay10@..."<missikay10@...> wrote: EmmaYou are far from neurotic! You are right on point! Time is absolutely crucial. It can be your worst enemy. There is a window of opportunity here for the best chance of success and you are spot on! Take it!!! Many of us travel for care so its not unusual to have to do so in this case. I urge you to go. You wont be sorry. My sons scoli progressed 30 degrees in 3 months. He was casted at 60 degrees and is now done with treatment and is at 8 degrees. Casting does work if done in time. Go for it!!! mom to isaiahSent from my Verizon Wireless 4G LTE DROID Fast-tracking diagnosis Hello everyone I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? Thanks in advance Emma = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 I agree!When we found out that jaylin had scoliosis and had a MRI he was at 24 degrees. We ended up having a second doctor look at him because they was talking brace. So finally we saw dr. K at Riley hospital in October I think, and jaylins curve shot up to 34, he was casted in dec. it took us awhile to decide on if we should and finally we had jaylin casted, but we didn't join this website until he was casted and oh my goodness everyone has helped us so much! The only thing I'd of done different is I would of casted sooner but I was scared! That's the good thing with all these families, we are all scared or were scared and we totally understand each other!!!!Go for it momma! Start getting your baby's numbers down lower Live, laugh, and loveJoyOn Apr 1, 2012, at 6:24 PM, "missikay10@..."<missikay10@...> wrote: EmmaYou are far from neurotic! You are right on point! Time is absolutely crucial. It can be your worst enemy. There is a window of opportunity here for the best chance of success and you are spot on! Take it!!! Many of us travel for care so its not unusual to have to do so in this case. I urge you to go. You wont be sorry. My sons scoli progressed 30 degrees in 3 months. He was casted at 60 degrees and is now done with treatment and is at 8 degrees. Casting does work if done in time. Go for it!!! mom to isaiahSent from my Verizon Wireless 4G LTE DROID Fast-tracking diagnosis Hello everyone I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? Thanks in advance Emma = Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Thank you so much to all that have responded. I have gone with my gut and booked a flight to Sydney. We leave today and my appointment is tomorrow. I have my fingers crossed that it's not progressive or neurological but if it is at least I'm a little more prepared and ready for the next step a whole lot sooner! Thanks again everyone. Emma > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Thank you so much to all that have responded. I have gone with my gut and booked a flight to Sydney. We leave today and my appointment is tomorrow. I have my fingers crossed that it's not progressive or neurological but if it is at least I'm a little more prepared and ready for the next step a whole lot sooner! Thanks again everyone. Emma > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Good for you guys! Hey have you looked in the articles section on the isop web site? I remember reading one about ? The little boy who's family bought the casting table out of their own pocket for the Sydney hospital? I think they miht be from near you? I dont remember the specifics you'll have to read it. amber Thank you so much to all that have responded. I have gone with my gut and > booked a flight to Sydney. We leave today and my appointment is tomorrow. > I have my fingers crossed that it's not progressive or neurological but if > it is at least I'm a little more prepared and ready for the next step a > whole lot sooner! > > Thanks again everyone. > Emma > > >> >> Hello everyone >> >> I'm new to your group and would really appreciate some advice. My 8 >> month old son, Beau has just been diagnosed with infantile scoliosis. >> Once the X-rays confirmed the scoliosis the radiologist told us that he >> needs an MRI to assess whether there are any other neurological >> conditions going on and basically go from there. Trouble is, we live in >> Perth, Western Australia and we only have one children's hospital and >> one paediatric orthopaedic specialist. When I rang to find out when his >> appointment and MRI will be I was told that there is a 6 - 12 month >> waiting list just to see the specialist. To me this doesn't seem >> acceptable because from what I've read if the scoliosis is progressive >> time could be crucial to a good outcome for my son. I'm now seriously >> considering flying to Sydney, Australia to see a specialist there - I've >> been told I can get an appointment with a specialist there within a >> couple of weeks. My question is - how crucial is time when dealing with >> infantile scoliosis? We really don't know anymore about his condition >> at this point other than scoliosis. But I thought that a firm diagnosis >> sooner rather than later would be better so we can then look at his >> treatment options. Or am I being a neurotic mum? >> >> Thanks in advance >> Emma >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Good for you guys! Hey have you looked in the articles section on the isop web site? I remember reading one about ? The little boy who's family bought the casting table out of their own pocket for the Sydney hospital? I think they miht be from near you? I dont remember the specifics you'll have to read it. amber Thank you so much to all that have responded. I have gone with my gut and > booked a flight to Sydney. We leave today and my appointment is tomorrow. > I have my fingers crossed that it's not progressive or neurological but if > it is at least I'm a little more prepared and ready for the next step a > whole lot sooner! > > Thanks again everyone. > Emma > > >> >> Hello everyone >> >> I'm new to your group and would really appreciate some advice. My 8 >> month old son, Beau has just been diagnosed with infantile scoliosis. >> Once the X-rays confirmed the scoliosis the radiologist told us that he >> needs an MRI to assess whether there are any other neurological >> conditions going on and basically go from there. Trouble is, we live in >> Perth, Western Australia and we only have one children's hospital and >> one paediatric orthopaedic specialist. When I rang to find out when his >> appointment and MRI will be I was told that there is a 6 - 12 month >> waiting list just to see the specialist. To me this doesn't seem >> acceptable because from what I've read if the scoliosis is progressive >> time could be crucial to a good outcome for my son. I'm now seriously >> considering flying to Sydney, Australia to see a specialist there - I've >> been told I can get an appointment with a specialist there within a >> couple of weeks. My question is - how crucial is time when dealing with >> infantile scoliosis? We really don't know anymore about his condition >> at this point other than scoliosis. But I thought that a firm diagnosis >> sooner rather than later would be better so we can then look at his >> treatment options. Or am I being a neurotic mum? >> >> Thanks in advance >> Emma >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 my daughter got her first cast at 8mos. THE EARLIER THE BETTER is what our docs told us. she went from 17 degrees off to 26 in a month BEFORE we got her casted. our doc here in kansas city, missouri told us the higher the number, the longer it takes to correct. currently with each cast we are going down about 5 degrees or so. charlotte is the youngest one currently being casted at childrens mercy. the others are a year or older. so try to get your kiddo seen and hopefully " fixed " as soon as you can. heather > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 my daughter got her first cast at 8mos. THE EARLIER THE BETTER is what our docs told us. she went from 17 degrees off to 26 in a month BEFORE we got her casted. our doc here in kansas city, missouri told us the higher the number, the longer it takes to correct. currently with each cast we are going down about 5 degrees or so. charlotte is the youngest one currently being casted at childrens mercy. the others are a year or older. so try to get your kiddo seen and hopefully " fixed " as soon as you can. heather > > Hello everyone > > I'm new to your group and would really appreciate some advice. My 8 month old son, Beau has just been diagnosed with infantile scoliosis. Once the X-rays confirmed the scoliosis the radiologist told us that he needs an MRI to assess whether there are any other neurological conditions going on and basically go from there. Trouble is, we live in Perth, Western Australia and we only have one children's hospital and one paediatric orthopaedic specialist. When I rang to find out when his appointment and MRI will be I was told that there is a 6 - 12 month waiting list just to see the specialist. To me this doesn't seem acceptable because from what I've read if the scoliosis is progressive time could be crucial to a good outcome for my son. I'm now seriously considering flying to Sydney, Australia to see a specialist there - I've been told I can get an appointment with a specialist there within a couple of weeks. My question is - how crucial is time when dealing with infantile scoliosis? We really don't know anymore about his condition at this point other than scoliosis. But I thought that a firm diagnosis sooner rather than later would be better so we can then look at his treatment options. Or am I being a neurotic mum? > > Thanks in advance > Emma > Quote Link to comment Share on other sites More sharing options...
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