Re: - standing xray?

[Guest guest]

Hey ,

How do they xray your son in Chicago- supine or standing. Our doc has alway done supine and now seems to be switching to standing. Maybe because the standing are more "true" or because is getting older so he can stand still better. Just curious. I like the supine because the numbers re better (smile) and it feel like we are better able to compare "apples to apples." I think most do standing now, but just thought I would ask.

Thanks

Subject: Re: Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis Date: Friday, December 19, 2008, 9:50 AM

Wecome to the group. It sounds like you have been through a lot with all of the misdiagnosis and the less than empathetic doctors. I am so glad you found this group and have an appt. set up with Rochester. We traveled to Chicago for my son's casting, but I have heard a lot of good things on this board about Rochester. My son was diagnosed at about 7 months old and started casting when he was about a year old. When he started casting his curve was 31 degrees. He did casting for 8 months and then wore a brace for 6 months. A couple weeks ago we had an x-ray done and his curve is just under 5 degrees, so the doctor is recommending taking the brace off and seeing how he does. I am forever grateful to for all the work she has done to get the word out about this noninvasive treatment for scoliosis. Like you said, so many medical professionals seem to

know nothing about it.

From: <skiboardguru@ yahoo.com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, December 18, 2008 11:23:51 AMSubject: [infantile_scoliosi s] Hello, want to introduce myself and my son Jonas to this board for 1st time

Hello,My name is ,my wife's name is and we are the proud parents of a beautiful 23 month old son who's name is Jonas. suggested I post on this board, for there are wonderful people on here who could help us and also understand what my son is going thru. Jonas was born 1/12/07 at 10 pounds 11 ounces by c-section (my wife said "thank god foe c section lol). Was happiest day of our lives. Being first time parents, we didnt realize that Jonas had any developmental issues untill his 4 month appointment, when our pediatrician suggested we go for a cat scan of his brain (totally missing the very obvious scoliosis issue) since my son had very poor head lag(couldnt hold his head up) and poor muscle tone. After the cat scan, he was initially diagnosed with hydrochephalus (water on brain) and was told he would be "mentally retarded and physically handicapped" . Much to our emotional

horror, we cried all weekend reading up on this condition preparing ourselves for brain shunts etc. We (thank god) went to a neurosurgeon in Albany NY to have to tests read along with an MRI, and he told us that he was misdiagnosed and that he was fine other than delayed in physical development and showed signs of scoliosis. After a huge sigh of relief, we were referred to a PT and an OT where he got therapy at our home 3x a week. Reading a prior post, our son didnt roll over till @ 9-10 months, and could even sit up on his own until @ 7 months. I strongly recommend Early Intervention in your area and qualify for PT or OT. Meanwhile we went to a Dr Karl in Albany for him to be looked at for his scoliosis. Well, Jonas was found to have a 44 degree curve of the spine and a rotation of hi ribcage( I apologize, im still learning about this and dont know all the medical phrases yet). He suggested we get

genetic testing(tests were fine) and come back in 3 months. After the 1st misdiagnosis with the brain issue(we switched pediatricians after that!) we obviously wouldnt take any one opinion and went to shriners in Mass. for a second opinion, and 1st trip they had similar results (altough 1st xray was lying down if you can believe that and came up much less, 2nd trip they were going to go sitting I said they had to take it standing according to my other doctor so they did). Shriners had a "wait and see" attitude, saying theres a slight chance he could "grow out of it" and to come back in 3 months. We went back to Dr Karl 2nd time and there was no chance still 44% and at this point he suggested to wait till he was walking and to expect preventative casting and future surguries involving rods along spine etc. We went to shriners 2nd time they had similar opinion, but seemed a tad frustrated that we

were going to different doctors and suggested we make a decision on who was going to treat jonas. Dont get me wrong. shriners is wonderful and people there are very nice, just got the impression that the doctor there felt we were wasting his time while on quote "there are other patients with no insurance waiting a long time to be seem, i dont know why you would travel so far when you have excellent health coverage and a doctor closer by that can see him" So, now with no definate direction, we went to see a specialist my wife found online in manhattan. He agreed with the diagnosis of Dr Karl, but suggested that we bring him to Shriners Philly to see if he would benefit from this newer VEPTR procedure. This was in september 2008, but said also to wait till he was walking strongly(which he is just now in december). So we were about to make an appointment for Shriners in Philly when thru some searching

thru google I found ISOP (THANK GOD!) Wish I found this site/group 18 months ago. Talked to heather(thanks) and she suggested Dr Rubery or Dr at U Rochester. I called and they suggested for us to send up xrays/mri report/dr Karls report to them asap to see if hes a candidate for Dr Methas corrective casting method. So My wife sent info out today, and we are awating their response at this point. Bottom line being a newbie to this...There' s virtually no concrete knowledge on infantile scoliosis in our medical "experts" out there which is obvious to me now because if i didnt stumble onto ISOP's website, I wouldnt of even known theres a potential non invasive treatment. God bless you heather for putting all the hard work into making this information available to parents like us. You mave have very well have greatly impacted the quality of our son's life. I thanked you over the phone, and you

said dont thank me thank Dr Metha etc. but like I said if it werent for you my son jonas and im sure many other beautiful children out there would of had to endure either the wrong treatment or the more painful/less efficient one. Thanks again, and I will be active on this board. You and your site were the best Christmas present our family got this year. You family will be in your prayers this holiday , as well as all the members here. Take care

[Guest guest]

We always did standing in Chicago. I think they preferred that because then you are truly seeing what effect gravity has. I think the most important thing though is just that you stay consistent with how you have it done

To: infantile_scoliosis Sent: Friday, December 19, 2008 11:33:48 AMSubject: Re: - standing xray?

Hey ,

How do they xray your son in Chicago- supine or standing. Our doc has alway done supine and now seems to be switching to standing. Maybe because the standing are more "true" or because is getting older so he can stand still better. Just curious. I like the supine because the numbers re better (smile) and it feel like we are better able to compare "apples to apples." I think most do standing now, but just thought I would ask.

Thanks

From: Dolley <b_dolleyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis @yahoogroups. comDate: Friday, December 19, 2008, 9:50 AM

Wecome to the group. It sounds like you have been through a lot with all of the misdiagnosis and the less than empathetic doctors. I am so glad you found this group and have an appt. set up with Rochester. We traveled to Chicago for my son's casting, but I have heard a lot of good things on this board about Rochester. My son was diagnosed at about 7 months old and started casting when he was about a year old. When he started casting his curve was 31 degrees. He did casting for 8 months and then wore a brace for 6 months. A couple weeks ago we had an x-ray done and his curve is just under 5 degrees, so the doctor is recommending taking the brace off and seeing how he does. I am forever grateful to for all the work she has done to get the word out about this noninvasive treatment for scoliosis. Like you said, so many medical professionals seem to

know nothing about it.

From: <skiboardguru@ yahoo.com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, December 18, 2008 11:23:51 AMSubject: [infantile_scoliosi s] Hello, want to introduce myself and my son Jonas to this board for 1st time

Hello,My name is ,my wife's name is and we are the proud parents of a beautiful 23 month old son who's name is Jonas. suggested I post on this board, for there are wonderful people on here who could help us and also understand what my son is going thru. Jonas was born 1/12/07 at 10 pounds 11 ounces by c-section (my wife said "thank god foe c section lol). Was happiest day of our lives. Being first time parents, we didnt realize that Jonas had any developmental issues untill his 4 month appointment, when our pediatrician suggested we go for a cat scan of his brain (totally missing the very obvious scoliosis issue) since my son had very poor head lag(couldnt hold his head up) and poor muscle tone. After the cat scan, he was initially diagnosed with hydrochephalus (water on brain) and was told he would be "mentally retarded and physically handicapped" . Much to our emotional

horror, we cried all weekend reading up on this condition preparing ourselves for brain shunts etc. We (thank god) went to a neurosurgeon in Albany NY to have to tests read along with an MRI, and he told us that he was misdiagnosed and that he was fine other than delayed in physical development and showed signs of scoliosis. After a huge sigh of relief, we were referred to a PT and an OT where he got therapy at our home 3x a week. Reading a prior post, our son didnt roll over till @ 9-10 months, and could even sit up on his own until @ 7 months. I strongly recommend Early Intervention in your area and qualify for PT or OT. Meanwhile we went to a Dr Karl in Albany for him to be looked at for his scoliosis. Well, Jonas was found to have a 44 degree curve of the spine and a rotation of hi ribcage( I apologize, im still learning about this and dont know all the medical phrases yet). He suggested we get

genetic testing(tests were fine) and come back in 3 months. After the 1st misdiagnosis with the brain issue(we switched pediatricians after that!) we obviously wouldnt take any one opinion and went to shriners in Mass. for a second opinion, and 1st trip they had similar results (altough 1st xray was lying down if you can believe that and came up much less, 2nd trip they were going to go sitting I said they had to take it standing according to my other doctor so they did). Shriners had a "wait and see" attitude, saying theres a slight chance he could "grow out of it" and to come back in 3 months. We went back to Dr Karl 2nd time and there was no chance still 44% and at this point he suggested to wait till he was walking and to expect preventative casting and future surguries involving rods along spine etc. We went to shriners 2nd time they had similar opinion, but seemed a tad frustrated that we

were going to different doctors and suggested we make a decision on who was going to treat jonas. Dont get me wrong. shriners is wonderful and people there are very nice, just got the impression that the doctor there felt we were wasting his time while on quote "there are other patients with no insurance waiting a long time to be seem, i dont know why you would travel so far when you have excellent health coverage and a doctor closer by that can see him" So, now with no definate direction, we went to see a specialist my wife found online in manhattan. He agreed with the diagnosis of Dr Karl, but suggested that we bring him to Shriners Philly to see if he would benefit from this newer VEPTR procedure. This was in september 2008, but said also to wait till he was walking strongly(which he is just now in december). So we were about to make an appointment for Shriners in Philly when thru some searching

thru google I found ISOP (THANK GOD!) Wish I found this site/group 18 months ago. Talked to heather(thanks) and she suggested Dr Rubery or Dr at U Rochester. I called and they suggested for us to send up xrays/mri report/dr Karls report to them asap to see if hes a candidate for Dr Methas corrective casting method. So My wife sent info out today, and we are awating their response at this point. Bottom line being a newbie to this...There' s virtually no concrete knowledge on infantile scoliosis in our medical "experts" out there which is obvious to me now because if i didnt stumble onto ISOP's website, I wouldnt of even known theres a potential non invasive treatment. God bless you heather for putting all the hard work into making this information available to parents like us. You mave have very well have greatly impacted the quality of our son's life. I thanked you over the phone, and you

said dont thank me thank Dr Metha etc. but like I said if it werent for you my son jonas and im sure many other beautiful children out there would of had to endure either the wrong treatment or the more painful/less efficient one. Thanks again, and I will be active on this board. You and your site were the best Christmas present our family got this year. You family will be in your prayers this holiday , as well as all the members here. Take care

[Guest guest]

Thanks . That all makes sense!

Jill

From: Dolley <b_dolleyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis @yahoogroups. comDate: Friday, December 19, 2008, 9:50 AM

Wecome to the group. It sounds like you have been through a lot with all of the misdiagnosis and the less than empathetic doctors. I am so glad you found this group and have an appt. set up with Rochester. We traveled to Chicago for my son's casting, but I have heard a lot of good things on this board about Rochester. My son was diagnosed at about 7 months old and started casting when he was about a year old. When he started casting his curve was 31 degrees. He did casting for 8 months and then wore a brace for 6 months. A couple weeks ago we had an x-ray done and his curve is just under 5 degrees, so the doctor is recommending taking the brace off and seeing how he does. I am forever grateful to for all the work she has done to get the word out about this noninvasive treatment for scoliosis. Like you said, so many medical professionals seem to

know nothing about it.

From: <skiboardguru@ yahoo.com>To: infantile_scoliosis @yahoogroups. comSent: Thursday, December 18, 2008 11:23:51 AMSubject: [infantile_scoliosi s] Hello, want to introduce myself and my son Jonas to this board for 1st time

Hello,My name is ,my wife's name is and we are the proud parents of a beautiful 23 month old son who's name is Jonas. suggested I post on this board, for there are wonderful people on here who could help us and also understand what my son is going thru. Jonas was born 1/12/07 at 10 pounds 11 ounces by c-section (my wife said "thank god foe c section lol). Was happiest day of our lives. Being first time parents, we didnt realize that Jonas had any developmental issues untill his 4 month appointment, when our pediatrician suggested we go for a cat scan of his brain (totally missing the very obvious scoliosis issue) since my son had very poor head lag(couldnt hold his head up) and poor muscle tone. After the cat scan, he was initially diagnosed with hydrochephalus (water on brain) and was told he would be "mentally retarded and physically handicapped" . Much to our emotional

horror, we cried all weekend reading up on this condition preparing ourselves for brain shunts etc. We (thank god) went to a neurosurgeon in Albany NY to have to tests read along with an MRI, and he told us that he was misdiagnosed and that he was fine other than delayed in physical development and showed signs of scoliosis. After a huge sigh of relief, we were referred to a PT and an OT where he got therapy at our home 3x a week. Reading a prior post, our son didnt roll over till @ 9-10 months, and could even sit up on his own until @ 7 months. I strongly recommend Early Intervention in your area and qualify for PT or OT. Meanwhile we went to a Dr Karl in Albany for him to be looked at for his scoliosis. Well, Jonas was found to have a 44 degree curve of the spine and a rotation of hi ribcage( I apologize, im still learning about this and dont know all the medical phrases yet). He suggested we get

genetic testing(tests were fine) and come back in 3 months. After the 1st misdiagnosis with the brain issue(we switched pediatricians after that!) we obviously wouldnt take any one opinion and went to shriners in Mass. for a second opinion, and 1st trip they had similar results (altough 1st xray was lying down if you can believe that and came up much less, 2nd trip they were going to go sitting I said they had to take it standing according to my other doctor so they did). Shriners had a "wait and see" attitude, saying theres a slight chance he could "grow out of it" and to come back in 3 months. We went back to Dr Karl 2nd time and there was no chance still 44% and at this point he suggested to wait till he was walking and to expect preventative casting and future surguries involving rods along spine etc. We went to shriners 2nd time they had similar opinion, but seemed a tad frustrated that we

were going to different doctors and suggested we make a decision on who was going to treat jonas. Dont get me wrong. shriners is wonderful and people there are very nice, just got the impression that the doctor there felt we were wasting his time while on quote "there are other patients with no insurance waiting a long time to be seem, i dont know why you would travel so far when you have excellent health coverage and a doctor closer by that can see him" So, now with no definate direction, we went to see a specialist my wife found online in manhattan. He agreed with the diagnosis of Dr Karl, but suggested that we bring him to Shriners Philly to see if he would benefit from this newer VEPTR procedure. This was in september 2008, but said also to wait till he was walking strongly(which he is just now in december). So we were about to make an appointment for Shriners in Philly when thru some searching

thru google I found ISOP (THANK GOD!) Wish I found this site/group 18 months ago. Talked to heather(thanks) and she suggested Dr Rubery or Dr at U Rochester. I called and they suggested for us to send up xrays/mri report/dr Karls report to them asap to see if hes a candidate for Dr Methas corrective casting method. So My wife sent info out today, and we are awating their response at this point. Bottom line being a newbie to this...There' s virtually no concrete knowledge on infantile scoliosis in our medical "experts" out there which is obvious to me now because if i didnt stumble onto ISOP's website, I wouldnt of even known theres a potential non invasive treatment. God bless you heather for putting all the hard work into making this information available to parents like us. You mave have very well have greatly impacted the quality of our son's life. I thanked you over the phone, and you

said dont thank me thank Dr Metha etc. but like I said if it werent for you my son jonas and im sure many other beautiful children out there would of had to endure either the wrong treatment or the more painful/less efficient one. Thanks again, and I will be active on this board. You and your site were the best Christmas present our family got this year. You family will be in your prayers this holiday , as well as all the members here. Take care