Re: Hello, want to introduce myself and my son Jonas to this board for 1st time :)

[Guest guest]

Welcome!!

doesn't like to take credit...but she's awesome and for sure has changed our lives as well.

Good luck about getting some feedback from Rochester, he treated our son and we had a wonderful outcome w/Evan's casts. You can read his story on ISOP's website: www.infantilescoliosis.org

Feel free to ask any questions..if I can help you out, I'd be glad to.

and Evan

Subject: Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis Date: Thursday, December 18, 2008, 11:23 AM

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]

Hi !

Welcome! I am also a newbie here...my 4 month-old daughter was just

diagnosed before Thanksgiving and we are still waiting to see the

orthopedist at ish Rite in Dallas. I am sorry--it sounds like

you've been given quite the run-around...but I am thrilled that you

found ISOP and all the amazing information here at CAST... It sounds

like Jonas is a very lucky little man to have such dedicated parents!

Please keep us updated!

Merry Christmas!

>

> 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]

Hi and ....welcome to the group. So happy you have found us here!You will be in great hands with the doctors in Rochester. Educate yourself by going to the FILES section and reading up. Feel free to ask any questions you may have. We will all do our best to help you through what we know from our own experiences. We have all been through the highs and lows of this journey with our child so we can honest say, Been there.You find the support you are looking for in this group. Keep us posted on Jonas. Merry Christmas!TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.Subject: Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis Date: Thursday, December 18, 2008, 10:23 AM

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]

Hi ,

Welcome to the group! I'm glad that you have a handle on this and I'm sorry for your son's issues... I personally do take my daughter to Rochester and have great success there. Please feel free to e-mail me off-line with any questions about the hospital, docs, staff, etc.

Steph

Subject: Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis Date: Thursday, December 18, 2008, 4:23 PM

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]

- Welcome to the group. This is a wonderful place for great information. I am so sorry that you had to go through some serious misdiagnosis, unfortunately it happens. I experienced a few myself. I found this group and things really started to fall into place from there. Wishing you and Jonas a wonderful outcome. ~Krista

Subject: Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis Date: Thursday, December 18, 2008, 4:23 PM

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]

Welcome ! I am so glad you found this group. We travel with my son to Rochester for casting as well. Let us know if you have any questions. We will all help you as best we can. This is a great group! I pray for your family and for a terrific outcome for Jonas in 2009! Things are looking up... Hang in there. The docs at U of R are wonderful. You are in good hands!

Jill

From: <skiboardguru@ yahoo.com>Subject: [infantile_scoliosi s] Hello, want to introduce myself and my son Jonas to this board for 1st time :)To: infantile_scoliosis @yahoogroups. comDate: Thursday, December 18, 2008, 4:23 PM

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]

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.

To: infantile_scoliosis Sent: Thursday, December 18, 2008 11:23:51 AMSubject: 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