New Member

[Guest guest]

My son is also 3, his curve is much less, hasn't been measured yet, but he has an appointment at Lexington Shriner's hospital this week. I am hoping they will do the casting. I am 27 with Harrington rods, with a double major curve. I had scoliosis from infancy but nothing was done until I was 14 and my curve was 54 degrees on top and 30 on bottom. Take it from someone who has had surgery and now lives with complications from it, that anything you can do to prevent surgery is best. You are on the right track here, try everything under the sun before signing your babies spine over to a surgeon, once they make the cut, there's no going back. You are never the same, they cut through muscles and tissue and at the very least you are left with a scar, altered biomechanics of the body, and the possiblity of

future problems.I wish casting was available when I was 3, it would have saved me a life time of pain and other issues, I'm sure. From what I can see, a lot of children have good outcomes from it, far better than other measures of treatment. The extra stress and difficulties that a cast would cause you and your son, such as the bathing issues, in comparison to surgery, recovery, and possible disability are worth the trade off. I'd rather inconvenience myself and my son for a few months/years for a worthy result, than have him endure what I have had to endure for a lifetime having gone the surgery route. Surgery is never the answer, it is only the last resort.From: suzy12771 <suzy3333@...>infantile scoliosis treatment Sent: Sun, November 21, 2010 8:26:52 PMSubject: New Member

Hello all,

I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day after his 3rd birthday).

I never knew what scoliosis was and there is no family history of it. So, I was surprised to find out that he has it. It was never noticed at any well child visit. It wasn't until September 13, 2010 (which is my son's actual birthday) when he was vomiting all day and all night. The next day, I took him to the emergency room because we thought he had ingested a penny and a nickel. And because he was now vomiting for more than 24 hours, the pediatrician was concerned about dehydration.

At the emergency room, the took an x-ray of his stomach. The doctor came in and informed me that, "we didn't find any foreign objects in his stomach. But the x-ray does show that he has some scoliosis". I was devastated. Especially because they said he would need to have a sedated MRI to see how bad it really was.

On September 29, 2010, I took him for his 3 year old physical to his pediatrician and that's when I was given a prescription to have a scoliosis x-ray of the back done as well as a referral to see a pediatric orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the first appointment to see the pediatric orthopedist was on November 2, 2010. At that time, the orthopedist marked up the x-ray with lines and went on to inform me that Shane's curve is a 52. He said that there was nothing he could do because he specializes with fusion and that Shane is too young for that and that he would require surgery to implant growing rods. He had diagnosed Shane with Early Onset Scoliosis. He said that bracing was not an option because his curve was too bad at this point. He gave me a prescription to have a sedated MRI done to see if there were any underlying conditions that would cause this and told me that I would no longer be seeing him since he

couldn't do anything for him.

The sedated MRI was done on November 9, 2010, and the results are normal. I was told that there were no signs of anything to explain why this curve has happened. And now he had another label of Infantile Idiopathic Scoliosis.

On November 11, 2010, I made an appointment with another orthopedist, for a second opinion. He was very rush rush and I could see he was getting frustrated with me because I was asking questions (which I'm sure some were repetitive). He told me that eventually Shane would need the growing rods but he would first like to try bracing (even though he said he knew it wouldn't work).

I then went to see another orthopedist, for a 3rd opinion. It was on their website, I saw the link for the website which led me to this group.

In any case, Dr. #3 told me that a brace is out of the question but that he would like to try casting. This was the first time I had heard about such a thing. Everybody else kept saying growing rods, growing rods, growing rods. The doctor did tell me that sometimes the casting does not work and then we would have to move forward with the growing rods, but that a lot of times casting does work.

No decision was made yet because doctor #3 told me he would like to meet with the other doctors in his group to be able to make a group decision regarding what they think is the best course of treatment for Shane.

I do have another appointment for Shane (for a 4th opinion) on December 3, 2010, but I'm getting more and more confused. I've seen 3 different specialists and each one has a different opinion for a first step. I don't know if I should keep the appointment with doctor #4 or just cancel it and forget about it.

I want to do what is best for Shane and (for obvious reasons) I want the best for Shane. I have ALOT of questions regarding casting. Even though I'm not 100% sure that the rest of doctor #3's group wants to go that way (I won't know for about 2 weeks because of the holiday). I like any idea that prevents Shane being cut in any way.

I'm just concerned about the casting in regards to changing his diaper, mobility, playing on the mulchy playground, putting him in a car seat and most importantly bathing.

I have a ton of questions and I'm hoping that this group could help me. I want to get as much information as I can get so that I can make an informed decision and not ever wonder "what if".

Thank you for taking the time to read this post and I look forward to all the advice I hope to get from others who have already been through this.

Suzanne

[Guest guest]

And welcome to the group, Suzanne! :-)From: Edythe Duenke <duenke@...>infantile scoliosis treatment Sent: Mon, November 22, 2010 3:27:31 AMSubject: Re: New Member

My son is also 3, his curve is much less, hasn't been measured yet, but he has an appointment at Lexington Shriner's hospital this week. I am hoping they will do the casting. I am 27 with Harrington rods, with a double major curve. I had scoliosis from infancy but nothing was done until I was 14 and my curve was 54 degrees on top and 30 on bottom. Take it from someone who has had surgery and now lives with complications from it, that anything you can do to prevent surgery is best. You are on the right track here, try everything under the sun before signing your babies spine over to a surgeon, once they make the cut, there's no going back. You are never the same, they cut through muscles and tissue and at the very least you are left with a scar, altered biomechanics of the body, and the possiblity of

future problems.I wish casting was available when I was 3, it would have saved me a life time of pain and other issues, I'm sure. From what I can see, a lot of children have good outcomes from it, far better than other measures of treatment. The extra stress and difficulties that a cast would cause you and your son, such as the bathing issues, in comparison to surgery, recovery, and possible disability are worth the trade off. I'd rather inconvenience myself and my son for a few months/years for a worthy result, than have him endure what I have had to endure for a lifetime having gone the surgery route. Surgery is never the answer, it is only the last resort.From: suzy12771 <suzy3333@...>infantile scoliosis treatment Sent: Sun, November 21, 2010 8:26:52 PMSubject: New Member

Hello all,

I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day after his 3rd birthday).

I never knew what scoliosis was and there is no family history of it. So, I was surprised to find out that he has it. It was never noticed at any well child visit. It wasn't until September 13, 2010 (which is my son's actual birthday) when he was vomiting all day and all night. The next day, I took him to the emergency room because we thought he had ingested a penny and a nickel. And because he was now vomiting for more than 24 hours, the pediatrician was concerned about dehydration.

At the emergency room, the took an x-ray of his stomach. The doctor came in and informed me that, "we didn't find any foreign objects in his stomach. But the x-ray does show that he has some scoliosis". I was devastated. Especially because they said he would need to have a sedated MRI to see how bad it really was.

On September 29, 2010, I took him for his 3 year old physical to his pediatrician and that's when I was given a prescription to have a scoliosis x-ray of the back done as well as a referral to see a pediatric orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the first appointment to see the pediatric orthopedist was on November 2, 2010. At that time, the orthopedist marked up the x-ray with lines and went on to inform me that Shane's curve is a 52. He said that there was nothing he could do because he specializes with fusion and that Shane is too young for that and that he would require surgery to implant growing rods. He had diagnosed Shane with Early Onset Scoliosis. He said that bracing was not an option because his curve was too bad at this point. He gave me a prescription to have a sedated MRI done to see if there were any underlying conditions that would cause this and told me that I would no longer be seeing him since he

couldn't do anything for him.

The sedated MRI was done on November 9, 2010, and the results are normal. I was told that there were no signs of anything to explain why this curve has happened. And now he had another label of Infantile Idiopathic Scoliosis.

On November 11, 2010, I made an appointment with another orthopedist, for a second opinion. He was very rush rush and I could see he was getting frustrated with me because I was asking questions (which I'm sure some were repetitive). He told me that eventually Shane would need the growing rods but he would first like to try bracing (even though he said he knew it wouldn't work).

I then went to see another orthopedist, for a 3rd opinion. It was on their website, I saw the link for the website which led me to this group.

In any case, Dr. #3 told me that a brace is out of the question but that he would like to try casting. This was the first time I had heard about such a thing. Everybody else kept saying growing rods, growing rods, growing rods. The doctor did tell me that sometimes the casting does not work and then we would have to move forward with the growing rods, but that a lot of times casting does work.

No decision was made yet because doctor #3 told me he would like to meet with the other doctors in his group to be able to make a group decision regarding what they think is the best course of treatment for Shane.

I do have another appointment for Shane (for a 4th opinion) on December 3, 2010, but I'm getting more and more confused. I've seen 3 different specialists and each one has a different opinion for a first step. I don't know if I should keep the appointment with doctor #4 or just cancel it and forget about it.

I want to do what is best for Shane and (for obvious reasons) I want the best for Shane. I have ALOT of questions regarding casting. Even though I'm not 100% sure that the rest of doctor #3's group wants to go that way (I won't know for about 2 weeks because of the holiday). I like any idea that prevents Shane being cut in any way.

I'm just concerned about the casting in regards to changing his diaper, mobility, playing on the mulchy playground, putting him in a car seat and most importantly bathing.

I have a ton of questions and I'm hoping that this group could help me. I want to get as much information as I can get so that I can make an informed decision and not ever wonder "what if".

Thank you for taking the time to read this post and I look forward to all the advice I hope to get from others who have already been through this.

Suzanne

[Guest guest]

De: Edythe Duenke <duenke@...>Para: infantile scoliosis treatment Enviado: lun,22 noviembre, 2010 09:29Asunto: Re: New Member

And welcome to the group, Suzanne! :-)

From: Edythe Duenke <duenke@...>infantile scoliosis treatment Sent: Mon, November 22, 2010 3:27:31 AMSubject: Re: New Member

My son is also 3, his curve is much less, hasn't been measured yet, but he has an appointment at Lexington Shriner's hospital this week. I am hoping they will do the casting. I am 27 with Harrington rods, with a double major curve. I had scoliosis from infancy but nothing was done until I was 14 and my curve was 54 degrees on top and 30 on bottom. Take it from someone who has had surgery and now lives with complications from it, that anything you can do to prevent surgery is best. You are on the right track here, try everything under the sun before signing your babies spine over to a surgeon, once they make the cut, there's no going back. You are never the same, they cut through muscles and tissue and at the very least you are left with a scar, altered biomechanics of the body, and the possiblity of future problems.I wish casting was available when I was 3, it would have saved me a life time of pain and other issues, I'm sure. From what I

can see, a lot of children have good outcomes from it, far better than other measures of treatment. The extra stress and difficulties that a cast would cause you and your son, such as the bathing issues, in comparison to surgery, recovery, and possible disability are worth the trade off. I'd rather inconvenience myself and my son for a few months/years for a worthy result, than have him endure what I have had to endure for a lifetime having gone the surgery route. Surgery is never the answer, it is only the last resort.

From: suzy12771 <suzy3333@...>infantile scoliosis treatment Sent: Sun, November 21, 2010 8:26:52 PMSubject: New Member

Hello all,I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day after his 3rd birthday).I never knew what scoliosis was and there is no family history of it. So, I was surprised to find out that he has it. It was never noticed at any well child visit. It wasn't until September 13, 2010 (which is my son's actual birthday) when he was vomiting all day and all night. The next day, I took him to the emergency room because we thought he had ingested a penny and a nickel. And because he was now vomiting for more than 24 hours, the pediatrician was concerned about dehydration. At the emergency room, the took an x-ray of his stomach. The doctor came in and informed me that, "we didn't find any foreign objects in his stomach. But the x-ray does show that he has some scoliosis". I was devastated. Especially because they said he would

need to have a sedated MRI to see how bad it really was. On September 29, 2010, I took him for his 3 year old physical to his pediatrician and that's when I was given a prescription to have a scoliosis x-ray of the back done as well as a referral to see a pediatric orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the first appointment to see the pediatric orthopedist was on November 2, 2010. At that time, the orthopedist marked up the x-ray with lines and went on to inform me that Shane's curve is a 52. He said that there was nothing he could do because he specializes with fusion and that Shane is too young for that and that he would require surgery to implant growing rods. He had diagnosed Shane with Early Onset Scoliosis. He said that bracing was not an option because his curve was too bad at this point. He gave me a prescription to have a sedated MRI done to see if there were any underlying conditions that would cause this

and told me that I would no longer be seeing him since he couldn't do anything for him.The sedated MRI was done on November 9, 2010, and the results are normal. I was told that there were no signs of anything to explain why this curve has happened. And now he had another label of Infantile Idiopathic Scoliosis.On November 11, 2010, I made an appointment with another orthopedist, for a second opinion. He was very rush rush and I could see he was getting frustrated with me because I was asking questions (which I'm sure some were repetitive). He told me that eventually Shane would need the growing rods but he would first like to try bracing (even though he said he knew it wouldn't work). I then went to see another orthopedist, for a 3rd opinion. It was on their website, I saw the link for the website which led me to this group.In any case, Dr. #3 told me that a brace is out of the question but that he would like to try

casting. This was the first time I had heard about such a thing. Everybody else kept saying growing rods, growing rods, growing rods. The doctor did tell me that sometimes the casting does not work and then we would have to move forward with the growing rods, but that a lot of times casting does work. No decision was made yet because doctor #3 told me he would like to meet with the other doctors in his group to be able to make a group decision regarding what they think is the best course of treatment for Shane.I do have another appointment for Shane (for a 4th opinion) on December 3, 2010, but I'm getting more and more confused. I've seen 3 different specialists and each one has a different opinion for a first step. I don't know if I should keep the appointment with doctor #4 or just cancel it and forget about it. I want to do what is best for Shane and (for obvious reasons) I want the best for Shane. I have ALOT of questions

regarding casting. Even though I'm not 100% sure that the rest of doctor #3's group wants to go that way (I won't know for about 2 weeks because of the holiday). I like any idea that prevents Shane being cut in any way.I'm just concerned about the casting in regards to changing his diaper, mobility, playing on the mulchy playground, putting him in a car seat and most importantly bathing. I have a ton of questions and I'm hoping that this group could help me. I want to get as much information as I can get so that I can make an informed decision and not ever wonder "what if".Thank you for taking the time to read this post and I look forward to all the advice I hope to get from others who have already been through this. Suzanne

Hi Suzanna, Welcome to a great group. Right now what you are going through, was for me one of the worst part of this whole process of my child with scoliosis, it is mentally and physically exhausting. Trying to understand everything, researching all the roads you can take, dealing with incompetent, aggressive doctors, it is all part of this process. Now that you know it is going to happen, you must start preparing yourself, realize that you are going to have to study this, become very active and learn to say no to the doctors who you are not comfortable with. It is a difficult part in this journey, but the better prepared you are and the more knowledge you have, will make it a lot easier. Scoliosis is not that uncommon, you will be surprised once you read everyones stories. We have all had similier journeys with our babies, some easier some rockier, but the truth be said, the majority here have had success with casting . Santi went

from 50 to 23 degrees after his 2nd cast. The thing we are attempting to do is look at these numbers and try to keep them as low as possible until they have stopped growing, once they stop growing the spine usually settles into place and stops moving. So, the idea is to bring these numbers down someway, bracing is great at holding the numbers in place, but it wont bring them down. Casting however does bring the numbers down. You buy time, your child is more comfortable in a cast in the long run. The cast molds to his/her body shape, making their movements easier. Braces are made of hard plastic no bending possible, and too easy to be taken off when they get uncomfortable. The casts stay on from 2-3 months, so much easier on the mom and dad, no temptation to take it off. Even your child realizes that and stops fussing. The most important thing now is to get into the right hands. Many here are with the Shriners Hospitals located throughout the

USA. What state are you in? If you do have a local one, mention it here on the group and most likely someone is going to it or has heard of it. Don´t worry Suzanna, read all the info you can, read parents stories here, you will feel better knowing you are not alone. Ask questions here, that is what this group is for. Be strong, I know how hard it is, especially with having 3 other siblings in the house. This journey gets easier and you get used to this new form of thinking and living. We are here for you if you need anything. Also remember, right now you have a window of opportunity, with your childs age being only 3, take advantage of it by casting, Santiago is now 8 and casting is not an option anymore. It can only be done while they have flexiblitiy in their spine and that is usually while they are infants. Good luck,. and keep us informed.

Sincerely,

Kelli and Santiago

[Guest guest]

Hi Suzanne, welcome to CAST!The most important info is really that with progressive cases of IS, it's important to act as fast as possible for casting to be as effective as possible. It's true that bracing often will not hold the curve and casts usually will at the very least halt it from getting worse. They can also be a cure. Children who begin older and with a higher degree curve sometimes have to cast longer- like my son. These specific casts in the Mehta Method or EDF casting also address and can cure rotation- this is a key element, the corkscrewing or twisting of the spine. As long as there is rotation the spine will continue to want to curve.Growing rods, in my view, are a last resort, as once surgery has begun, there is no going back. Casts are temporary and

removable without any invasive cutting or metal hardware implanted in the body. The rods can only be lengthened 5 or 6 times, that is every six months, as I understand it.The general view is that you want to prevent surgery for as long as possible to allow the child to grow- allowing their torso/chest cavity to have room for growing heart and lungs.I hope this is not too dry and technical, I just want to give you the info I wish we had ASAP. You can read my son Bex's story on www.GirltoMom.comPlease ask any and all questions you have of this great group! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: suzy12771 <suzy3333@...>infantile scoliosis treatment Sent: Sun, November 21, 2010 5:26:52 PMSubject: New Member

Hello all,

I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day after his 3rd birthday).

I never knew what scoliosis was and there is no family history of it. So, I was surprised to find out that he has it. It was never noticed at any well child visit. It wasn't until September 13, 2010 (which is my son's actual birthday) when he was vomiting all day and all night. The next day, I took him to the emergency room because we thought he had ingested a penny and a nickel. And because he was now vomiting for more than 24 hours, the pediatrician was concerned about dehydration.

At the emergency room, the took an x-ray of his stomach. The doctor came in and informed me that, "we didn't find any foreign objects in his stomach. But the x-ray does show that he has some scoliosis". I was devastated. Especially because they said he would need to have a sedated MRI to see how bad it really was.

On September 29, 2010, I took him for his 3 year old physical to his pediatrician and that's when I was given a prescription to have a scoliosis x-ray of the back done as well as a referral to see a pediatric orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the first appointment to see the pediatric orthopedist was on November 2, 2010. At that time, the orthopedist marked up the x-ray with lines and went on to inform me that Shane's curve is a 52. He said that there was nothing he could do because he specializes with fusion and that Shane is too young for that and that he would require surgery to implant growing rods. He had diagnosed Shane with Early Onset Scoliosis. He said that bracing was not an option because his curve was too bad at this point. He gave me a prescription to have a sedated MRI done to see if there were any underlying conditions that would cause this and told me that I would no longer be seeing him since he

couldn't do anything for him.

The sedated MRI was done on November 9, 2010, and the results are normal. I was told that there were no signs of anything to explain why this curve has happened. And now he had another label of Infantile Idiopathic Scoliosis.

On November 11, 2010, I made an appointment with another orthopedist, for a second opinion. He was very rush rush and I could see he was getting frustrated with me because I was asking questions (which I'm sure some were repetitive). He told me that eventually Shane would need the growing rods but he would first like to try bracing (even though he said he knew it wouldn't work).

I then went to see another orthopedist, for a 3rd opinion. It was on their website, I saw the link for the website which led me to this group.

In any case, Dr. #3 told me that a brace is out of the question but that he would like to try casting. This was the first time I had heard about such a thing. Everybody else kept saying growing rods, growing rods, growing rods. The doctor did tell me that sometimes the casting does not work and then we would have to move forward with the growing rods, but that a lot of times casting does work.

No decision was made yet because doctor #3 told me he would like to meet with the other doctors in his group to be able to make a group decision regarding what they think is the best course of treatment for Shane.

I do have another appointment for Shane (for a 4th opinion) on December 3, 2010, but I'm getting more and more confused. I've seen 3 different specialists and each one has a different opinion for a first step. I don't know if I should keep the appointment with doctor #4 or just cancel it and forget about it.

I want to do what is best for Shane and (for obvious reasons) I want the best for Shane. I have ALOT of questions regarding casting. Even though I'm not 100% sure that the rest of doctor #3's group wants to go that way (I won't know for about 2 weeks because of the holiday). I like any idea that prevents Shane being cut in any way.

I'm just concerned about the casting in regards to changing his diaper, mobility, playing on the mulchy playground, putting him in a car seat and most importantly bathing.

I have a ton of questions and I'm hoping that this group could help me. I want to get as much information as I can get so that I can make an informed decision and not ever wonder "what if".

Thank you for taking the time to read this post and I look forward to all the advice I hope to get from others who have already been through this.

Suzanne

[Guest guest]

Good Morning Everyone,

I wanted to ask a question here. I've been reading alot here and see most

people reference Shriner's Hospital. Is that where I should be going? I'm

asking because doctor #1 admitted he only does fusion (which is NOT an option

for Shane), doctor #2 was in New York at the Hospital for Special Surgery (wants

to put Shane in a brace even though he said he knows it won't work and was rush

rush) doctor #3 is also in New York at the Division of Pediatric Orthopaedics of

Stanley Childrens Hospital of New York-Columbia Presbyterian (who is the

first doctor to mention casting to me and is how I found this group. They had a

link to I.S.O.P. which had a direct link to this group), doctor #4 is at

Children's Hospital of Philadelphia but I don't have that appointment until

12/3/10. Should I be looking at Shriners and Shriners ONLY? I want the best

and only the best for Shane. I do love the hospital where doctor #3 is. My

oldest son (who is severely special needs) had an implant drilled through his

skull (for his deafness) at that hospital and I couldn't have been more pleased.

So, although I have a previous experience with that hospital, I don't with

scoliosis and/or casting. I wanted the best for my oldest (which is who I got)

and I want the same for Shane.

Any thoughts? Help!!!!!

>

> Hello all,

>

> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3

year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day

after his 3rd birthday).

>

> I never knew what scoliosis was and there is no family history of it. So, I

was surprised to find out that he has it. It was never noticed at any well

child visit. It wasn't until September 13, 2010 (which is my son's actual

birthday) when he was vomiting all day and all night. The next day, I took him

to the emergency room because we thought he had ingested a penny and a nickel.

And because he was now vomiting for more than 24 hours, the pediatrician was

concerned about dehydration.

>

> At the emergency room, the took an x-ray of his stomach. The doctor came in

and informed me that, " we didn't find any foreign objects in his stomach. But

the x-ray does show that he has some scoliosis " . I was devastated. Especially

because they said he would need to have a sedated MRI to see how bad it really

was.

>

> On September 29, 2010, I took him for his 3 year old physical to his

pediatrician and that's when I was given a prescription to have a scoliosis

x-ray of the back done as well as a referral to see a pediatric orthopedist. He

had the scoliosis x-ray done on October 6, 2010 and the first appointment to see

the pediatric orthopedist was on November 2, 2010. At that time, the

orthopedist marked up the x-ray with lines and went on to inform me that Shane's

curve is a 52. He said that there was nothing he could do because he

specializes with fusion and that Shane is too young for that and that he would

require surgery to implant growing rods. He had diagnosed Shane with Early

Onset Scoliosis. He said that bracing was not an option because his curve was

too bad at this point. He gave me a prescription to have a sedated MRI done to

see if there were any underlying conditions that would cause this and told me

that I would no longer be seeing him since he couldn't do anything for him.

>

> The sedated MRI was done on November 9, 2010, and the results are normal. I

was told that there were no signs of anything to explain why this curve has

happened. And now he had another label of Infantile Idiopathic Scoliosis.

>

> On November 11, 2010, I made an appointment with another orthopedist, for a

second opinion. He was very rush rush and I could see he was getting frustrated

with me because I was asking questions (which I'm sure some were repetitive).

He told me that eventually Shane would need the growing rods but he would first

like to try bracing (even though he said he knew it wouldn't work).

>

> I then went to see another orthopedist, for a 3rd opinion. It was on their

website, I saw the link for the website which led me to this group.

>

> In any case, Dr. #3 told me that a brace is out of the question but that he

would like to try casting. This was the first time I had heard about such a

thing. Everybody else kept saying growing rods, growing rods, growing rods.

The doctor did tell me that sometimes the casting does not work and then we

would have to move forward with the growing rods, but that a lot of times

casting does work.

>

> No decision was made yet because doctor #3 told me he would like to meet with

the other doctors in his group to be able to make a group decision regarding

what they think is the best course of treatment for Shane.

>

> I do have another appointment for Shane (for a 4th opinion) on December 3,

2010, but I'm getting more and more confused. I've seen 3 different specialists

and each one has a different opinion for a first step. I don't know if I should

keep the appointment with doctor #4 or just cancel it and forget about it.

>

> I want to do what is best for Shane and (for obvious reasons) I want the best

for Shane. I have ALOT of questions regarding casting. Even though I'm not

100% sure that the rest of doctor #3's group wants to go that way (I won't know

for about 2 weeks because of the holiday). I like any idea that prevents Shane

being cut in any way.

>

> I'm just concerned about the casting in regards to changing his diaper,

mobility, playing on the mulchy playground, putting him in a car seat and most

importantly bathing.

>

> I have a ton of questions and I'm hoping that this group could help me. I

want to get as much information as I can get so that I can make an informed

decision and not ever wonder " what if " .

>

> Thank you for taking the time to read this post and I look forward to all the

advice I hope to get from others who have already been through this.

>

> Suzanne

>

[Guest guest]

Dr. V at Stanley does do EDF casting. He also is at the fore front of

vertebral stapling, I think. I happened to e-mail him about a year ago with

questions about stapling.etc... Makenna's underlying genetic condition is very

rare and always comes with progressive scoliosis that if often resistant to

treatment. There just aren't very many cases like hers, so I tend to talk to

anyone who may have answers I need. Anyway, he was very quick and curteous with

a response and told me casting was her best option right now and that he had

actually treated another patient with HGPPS and passed along my info to them so

we could connect. Imagine that That brought my total to 4 families in the US!

So even though I haven't met him personally, he has become a part of my string

of small coincidences (or miracles!). Even though my question about stapling was

premature and probably unnecessary... I never would have found that other family

if I hadn't of asked...

Dr. V is also on the list in the database. I visited their website the other day

and was very impressed with their didicated section to early onset scoliosis.

Good Luck! Sorry to share such a long and winded story.....

[Guest guest]

If you are in NY I would go to Dr. S or Dr. R in rochester.  We are in NY and could not be happier.  Dr S is our DR and is one of the top 2 most experienced drs in the country.  His bedside manor is the best I have EVER seen.  If I have a problem at home and call he Personally calls me back.  If I email him I typically get a response in 30 minutes unless he is with clients but never more than a few hours.  I have even gotten responses after 15 minutes at 11:00 PM.  His STAFF is amazing!  

Email or Call 518-686-1452 if you have questions about them. JennOn Tue, Nov 23, 2010 at 8:01 AM, suzy12771 <suzy3333@...> wrote:

 

Good Morning Everyone,

I wanted to ask a question here. I've been reading alot here and see most people reference Shriner's Hospital. Is that where I should be going? I'm asking because doctor #1 admitted he only does fusion (which is NOT an option for Shane), doctor #2 was in New York at the Hospital for Special Surgery (wants to put Shane in a brace even though he said he knows it won't work and was rush rush) doctor #3 is also in New York at the Division of Pediatric Orthopaedics of Stanley Childrens Hospital of New York-Columbia Presbyterian (who is the first doctor to mention casting to me and is how I found this group. They had a link to I.S.O.P. which had a direct link to this group), doctor #4 is at Children's Hospital of Philadelphia but I don't have that appointment until 12/3/10. Should I be looking at Shriners and Shriners ONLY? I want the best and only the best for Shane. I do love the hospital where doctor #3 is. My oldest son (who is severely special needs) had an implant drilled through his skull (for his deafness) at that hospital and I couldn't have been more pleased. So, although I have a previous experience with that hospital, I don't with scoliosis and/or casting. I wanted the best for my oldest (which is who I got) and I want the same for Shane.

Any thoughts? Help!!!!!

>

> Hello all,

>

> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day after his 3rd birthday).

>

> I never knew what scoliosis was and there is no family history of it. So, I was surprised to find out that he has it. It was never noticed at any well child visit. It wasn't until September 13, 2010 (which is my son's actual birthday) when he was vomiting all day and all night. The next day, I took him to the emergency room because we thought he had ingested a penny and a nickel. And because he was now vomiting for more than 24 hours, the pediatrician was concerned about dehydration.

>

> At the emergency room, the took an x-ray of his stomach. The doctor came in and informed me that, " we didn't find any foreign objects in his stomach. But the x-ray does show that he has some scoliosis " . I was devastated. Especially because they said he would need to have a sedated MRI to see how bad it really was.

>

> On September 29, 2010, I took him for his 3 year old physical to his pediatrician and that's when I was given a prescription to have a scoliosis x-ray of the back done as well as a referral to see a pediatric orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the first appointment to see the pediatric orthopedist was on November 2, 2010. At that time, the orthopedist marked up the x-ray with lines and went on to inform me that Shane's curve is a 52. He said that there was nothing he could do because he specializes with fusion and that Shane is too young for that and that he would require surgery to implant growing rods. He had diagnosed Shane with Early Onset Scoliosis. He said that bracing was not an option because his curve was too bad at this point. He gave me a prescription to have a sedated MRI done to see if there were any underlying conditions that would cause this and told me that I would no longer be seeing him since he couldn't do anything for him.

>

> The sedated MRI was done on November 9, 2010, and the results are normal. I was told that there were no signs of anything to explain why this curve has happened. And now he had another label of Infantile Idiopathic Scoliosis.

>

> On November 11, 2010, I made an appointment with another orthopedist, for a second opinion. He was very rush rush and I could see he was getting frustrated with me because I was asking questions (which I'm sure some were repetitive). He told me that eventually Shane would need the growing rods but he would first like to try bracing (even though he said he knew it wouldn't work).

>

> I then went to see another orthopedist, for a 3rd opinion. It was on their website, I saw the link for the website which led me to this group.

>

> In any case, Dr. #3 told me that a brace is out of the question but that he would like to try casting. This was the first time I had heard about such a thing. Everybody else kept saying growing rods, growing rods, growing rods. The doctor did tell me that sometimes the casting does not work and then we would have to move forward with the growing rods, but that a lot of times casting does work.

>

> No decision was made yet because doctor #3 told me he would like to meet with the other doctors in his group to be able to make a group decision regarding what they think is the best course of treatment for Shane.

>

> I do have another appointment for Shane (for a 4th opinion) on December 3, 2010, but I'm getting more and more confused. I've seen 3 different specialists and each one has a different opinion for a first step. I don't know if I should keep the appointment with doctor #4 or just cancel it and forget about it.

>

> I want to do what is best for Shane and (for obvious reasons) I want the best for Shane. I have ALOT of questions regarding casting. Even though I'm not 100% sure that the rest of doctor #3's group wants to go that way (I won't know for about 2 weeks because of the holiday). I like any idea that prevents Shane being cut in any way.

>

> I'm just concerned about the casting in regards to changing his diaper, mobility, playing on the mulchy playground, putting him in a car seat and most importantly bathing.

>

> I have a ton of questions and I'm hoping that this group could help me. I want to get as much information as I can get so that I can make an informed decision and not ever wonder " what if " .

>

> Thank you for taking the time to read this post and I look forward to all the advice I hope to get from others who have already been through this.

>

> Suzanne

>

[Guest guest]

Welcome to CAST ne! You have to the right place for gathering solid

info/experience on Early Treatment w/ EDF casting & the Mehta Method. Im

sure you have received valuable advice already, but feel free to ask any

questions that come to mind. We are here to help.

Sincerely,

HRH

> Hello all,

>

> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My

> 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010

> (the day after his 3rd birthday).

>

> I never knew what scoliosis was and there is no family history of it. So,

> I was surprised to find out that he has it. It was never noticed at any

> well child visit. It wasn't until September 13, 2010 (which is my son's

> actual birthday) when he was vomiting all day and all night. The next

> day, I took him to the emergency room because we thought he had ingested a

> penny and a nickel. And because he was now vomiting for more than 24

> hours, the pediatrician was concerned about dehydration.

>

> At the emergency room, the took an x-ray of his stomach. The doctor came

> in and informed me that, " we didn't find any foreign objects in his

> stomach. But the x-ray does show that he has some scoliosis " . I was

> devastated. Especially because they said he would need to have a sedated

> MRI to see how bad it really was.

>

> On September 29, 2010, I took him for his 3 year old physical to his

> pediatrician and that's when I was given a prescription to have a

> scoliosis x-ray of the back done as well as a referral to see a pediatric

> orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the

> first appointment to see the pediatric orthopedist was on November 2,

> 2010. At that time, the orthopedist marked up the x-ray with lines and

> went on to inform me that Shane's curve is a 52. He said that there was

> nothing he could do because he specializes with fusion and that Shane is

> too young for that and that he would require surgery to implant growing

> rods. He had diagnosed Shane with Early Onset Scoliosis. He said that

> bracing was not an option because his curve was too bad at this point. He

> gave me a prescription to have a sedated MRI done to see if there were any

> underlying conditions that would cause this and told me that I would no

> longer be seeing him since he couldn't do anything for him.

>

> The sedated MRI was done on November 9, 2010, and the results are normal.

> I was told that there were no signs of anything to explain why this curve

> has happened. And now he had another label of Infantile Idiopathic

> Scoliosis.

>

> On November 11, 2010, I made an appointment with another orthopedist, for

> a second opinion. He was very rush rush and I could see he was getting

> frustrated with me because I was asking questions (which I'm sure some

> were repetitive). He told me that eventually Shane would need the growing

> rods but he would first like to try bracing (even though he said he knew

> it wouldn't work).

>

> I then went to see another orthopedist, for a 3rd opinion. It was on

> their website, I saw the link for the website which led me to this group.

>

> In any case, Dr. #3 told me that a brace is out of the question but that

> he would like to try casting. This was the first time I had heard about

> such a thing. Everybody else kept saying growing rods, growing rods,

> growing rods. The doctor did tell me that sometimes the casting does not

> work and then we would have to move forward with the growing rods, but

> that a lot of times casting does work.

>

> No decision was made yet because doctor #3 told me he would like to meet

> with the other doctors in his group to be able to make a group decision

> regarding what they think is the best course of treatment for Shane.

>

> I do have another appointment for Shane (for a 4th opinion) on December 3,

> 2010, but I'm getting more and more confused. I've seen 3 different

> specialists and each one has a different opinion for a first step. I

> don't know if I should keep the appointment with doctor #4 or just cancel

> it and forget about it.

>

> I want to do what is best for Shane and (for obvious reasons) I want the

> best for Shane. I have ALOT of questions regarding casting. Even though

> I'm not 100% sure that the rest of doctor #3's group wants to go that way

> (I won't know for about 2 weeks because of the holiday). I like any idea

> that prevents Shane being cut in any way.

>

> I'm just concerned about the casting in regards to changing his diaper,

> mobility, playing on the mulchy playground, putting him in a car seat and

> most importantly bathing.

>

> I have a ton of questions and I'm hoping that this group could help me. I

> want to get as much information as I can get so that I can make an

> informed decision and not ever wonder " what if " .

>

> Thank you for taking the time to read this post and I look forward to all

> the advice I hope to get from others who have already been through this.

>

> Suzanne

>

>

>

[Guest guest]

Sounds like recommended a great doctor. :-) I am going to Shriner's b/c I heard they are one of the few places to have casting done, but there are others I'm sure. It never hurts to get another opinion, as you well know, that is what led you to info. on casting. I say meet with the doctor who knows about casting to find out his gameplan of action, but maybe you might want to meet with a Shriners doctor, too, and see which one has the best plan and is a good fit for you all. December is not too far away, and it would probably take you longer to get an appointment somewhere else first. I called Lexington Shriners about a month ago, and 's first appointment is tomorrow. But now that it's the end of the year things are getting busy, and if I tried to get him an appointment now they told

me the wait is until March. I hope your December appointment is promising. But it never hurts to give Shriner's a call and see about the wait time for them. With it being the holiday season, I would keep the December appt. so at least some progress is being made in the meantime. :-)From: "heather@..." <heather@...>infantile scoliosis treatment Sent: Tue, November 23, 2010 2:19:54 PMSubject: Re:

New Member

Welcome to CAST ne! You have to the right place for gathering solid

info/experience on Early Treatment w/ EDF casting & the Mehta Method. Im

sure you have received valuable advice already, but feel free to ask any

questions that come to mind. We are here to help.

Sincerely,

HRH

> Hello all,

>

> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My

> 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010

> (the day after his 3rd birthday).

>

> I never knew what scoliosis was and there is no family history of it. So,

> I was surprised to find out that he has it. It was never noticed at any

> well child visit. It wasn't until September 13, 2010 (which is my son's

> actual birthday) when he was vomiting all day and all night. The next

> day, I took him to the emergency room because we thought he had ingested a

> penny and a nickel. And because he was now vomiting for more than 24

> hours, the pediatrician was concerned about dehydration.

>

> At the emergency room, the took an x-ray of his stomach. The doctor came

> in and informed me that, "we didn't find any foreign objects in his

> stomach. But the x-ray does show that he has some scoliosis". I was

> devastated. Especially because they said he would need to have a sedated

> MRI to see how bad it really was.

>

> On September 29, 2010, I took him for his 3 year old physical to his

> pediatrician and that's when I was given a prescription to have a

> scoliosis x-ray of the back done as well as a referral to see a pediatric

> orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the

> first appointment to see the pediatric orthopedist was on November 2,

> 2010. At that time, the orthopedist marked up the x-ray with lines and

> went on to inform me that Shane's curve is a 52. He said that there was

> nothing he could do because he specializes with fusion and that Shane is

> too young for that and that he would require surgery to implant growing

> rods. He had diagnosed Shane with Early Onset Scoliosis. He said that

> bracing was not an option because his curve was too bad at this point. He

> gave me a prescription to have a sedated MRI done to see if there were any

> underlying conditions that would cause this and told me that I would no

> longer be seeing him since he couldn't do anything for him.

>

> The sedated MRI was done on November 9, 2010, and the results are normal.

> I was told that there were no signs of anything to explain why this curve

> has happened. And now he had another label of Infantile Idiopathic

> Scoliosis.

>

> On November 11, 2010, I made an appointment with another orthopedist, for

> a second opinion. He was very rush rush and I could see he was getting

> frustrated with me because I was asking questions (which I'm sure some

> were repetitive). He told me that eventually Shane would need the growing

> rods but he would first like to try bracing (even though he said he knew

> it wouldn't work).

>

> I then went to see another orthopedist, for a 3rd opinion. It was on

> their website, I saw the link for the website which led me to this group.

>

> In any case, Dr. #3 told me that a brace is out of the question but that

> he would like to try casting. This was the first time I had heard about

> such a thing. Everybody else kept saying growing rods, growing rods,

> growing rods. The doctor did tell me that sometimes the casting does not

> work and then we would have to move forward with the growing rods, but

> that a lot of times casting does work.

>

> No decision was made yet because doctor #3 told me he would like to meet

> with the other doctors in his group to be able to make a group decision

> regarding what they think is the best course of treatment for Shane.

>

> I do have another appointment for Shane (for a 4th opinion) on December 3,

> 2010, but I'm getting more and more confused. I've seen 3 different

> specialists and each one has a different opinion for a first step. I

> don't know if I should keep the appointment with doctor #4 or just cancel

> it and forget about it.

>

> I want to do what is best for Shane and (for obvious reasons) I want the

> best for Shane. I have ALOT of questions regarding casting. Even though

> I'm not 100% sure that the rest of doctor #3's group wants to go that way

> (I won't know for about 2 weeks because of the holiday). I like any idea

> that prevents Shane being cut in any way.

>

> I'm just concerned about the casting in regards to changing his diaper,

> mobility, playing on the mulchy playground, putting him in a car seat and

> most importantly bathing.

>

> I have a ton of questions and I'm hoping that this group could help me. I

> want to get as much information as I can get so that I can make an

> informed decision and not ever wonder "what if".

>

> Thank you for taking the time to read this post and I look forward to all

> the advice I hope to get from others who have already been through this.

>

> Suzanne

>

>

>

[Guest guest]

Dear E.,

Best wishes and positive vibes coming your way for your son and Early

Treatment. Please let us know how the appt. goes.

HRH

> My son is also 3, his curve is much less, hasn't been measured yet, but he

> has

> an appointment at Lexington Shriner's hospital this week. I am hoping they

> will

> do the casting. I am 27 with Harrington rods, with a double major curve. I

> had

> scoliosis from infancy but nothing was done until I was 14 and my curve

> was 54

> degrees on top and 30 on bottom. Take it from someone who has had surgery

> and

> now lives with complications from it, that anything you can do to prevent

> surgery is best. You are on the right track here, try everything under the

> sun

> before signing your babies spine over to a surgeon, once they make the

> cut,

> there's no going back. You are never the same, they cut through muscles

> and

> tissue and at the very least you are left with a scar, altered

> biomechanics of

> the body, and the possiblity of future problems.

>

> I wish casting was available when I was 3, it would have saved me a life

> time of

> pain and other issues, I'm sure. From what I can see, a lot of children

> have

> good outcomes from it, far better than other measures of treatment. The

> extra

> stress and difficulties that a cast would cause you and your son, such as

> the

> bathing issues, in comparison to surgery, recovery, and possible

> disability are

> worth the trade off. I'd rather inconvenience myself and my son for a few

> months/years for a worthy result, than have him endure what I have had to

> endure

> for a lifetime having gone the surgery route. Surgery is never the answer,

> it is

> only the last resort.

>

>

>

>

> ________________________________

> From: suzy12771 <suzy3333@...>

> infantile scoliosis treatment

> Sent: Sun, November 21, 2010 8:26:52 PM

> Subject: New Member

>

>

> Hello all,

>

> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My

> 3 year

> old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the

> day

> after his 3rd birthday).

>

> I never knew what scoliosis was and there is no family history of it. So,

> I was

> surprised to find out that he has it. It was never noticed at any well

> child

> visit. It wasn't until September 13, 2010 (which is my son's actual

> birthday)

> when he was vomiting all day and all night. The next day, I took him to

> the

> emergency room because we thought he had ingested a penny and a nickel.

> And

> because he was now vomiting for more than 24 hours, the pediatrician was

> concerned about dehydration.

>

>

> At the emergency room, the took an x-ray of his stomach. The doctor came

> in and

> informed me that, " we didn't find any foreign objects in his stomach. But

> the

> x-ray does show that he has some scoliosis " . I was devastated.

> Especially

> because they said he would need to have a sedated MRI to see how bad it

> really

> was.

>

>

> On September 29, 2010, I took him for his 3 year old physical to his

> pediatrician and that's when I was given a prescription to have a

> scoliosis

> x-ray of the back done as well as a referral to see a pediatric

> orthopedist. He

> had the scoliosis x-ray done on October 6, 2010 and the first appointment

> to see

> the pediatric orthopedist was on November 2, 2010. At that time, the

> orthopedist marked up the x-ray with lines and went on to inform me that

> Shane's

> curve is a 52. He said that there was nothing he could do because he

> specializes with fusion and that Shane is too young for that and that he

> would

> require surgery to implant growing rods. He had diagnosed Shane with

> Early

> Onset Scoliosis. He said that bracing was not an option because his curve

> was

> too bad at this point. He gave me a prescription to have a sedated MRI

> done to

> see if there were any underlying conditions that would cause this and told

> me

> that I would no longer be seeing him since he couldn't do anything for

> him.

>

> The sedated MRI was done on November 9, 2010, and the results are normal.

> I was

> told that there were no signs of anything to explain why this curve has

> happened. And now he had another label of Infantile Idiopathic Scoliosis.

>

> On November 11, 2010, I made an appointment with another orthopedist, for

> a

> second opinion. He was very rush rush and I could see he was getting

> frustrated

> with me because I was asking questions (which I'm sure some were

> repetitive).

> He told me that eventually Shane would need the growing rods but he would

> first

> like to try bracing (even though he said he knew it wouldn't work).

>

>

> I then went to see another orthopedist, for a 3rd opinion. It was on

> their

> website, I saw the link for the website which led me to this group.

>

> In any case, Dr. #3 told me that a brace is out of the question but that

> he

> would like to try casting. This was the first time I had heard about such

> a

> thing. Everybody else kept saying growing rods, growing rods, growing

> rods.

> The doctor did tell me that sometimes the casting does not work and then

> we

> would have to move forward with the growing rods, but that a lot of times

> casting does work.

>

>

> No decision was made yet because doctor #3 told me he would like to meet

> with

> the other doctors in his group to be able to make a group decision

> regarding

> what they think is the best course of treatment for Shane.

>

> I do have another appointment for Shane (for a 4th opinion) on December 3,

> 2010,

> but I'm getting more and more confused. I've seen 3 different specialists

> and

> each one has a different opinion for a first step. I don't know if I

> should

> keep the appointment with doctor #4 or just cancel it and forget about it.

>

>

> I want to do what is best for Shane and (for obvious reasons) I want the

> best

> for Shane. I have ALOT of questions regarding casting. Even though I'm

> not

> 100% sure that the rest of doctor #3's group wants to go that way (I won't

> know

> for about 2 weeks because of the holiday). I like any idea that prevents

> Shane

> being cut in any way.

>

> I'm just concerned about the casting in regards to changing his diaper,

> mobility, playing on the mulchy playground, putting him in a car seat and

> most

> importantly bathing.

>

>

> I have a ton of questions and I'm hoping that this group could help me. I

> want

> to get as much information as I can get so that I can make an informed

> decision

> and not ever wonder " what if " .

>

> Thank you for taking the time to read this post and I look forward to all

> the

> advice I hope to get from others who have already been through this.

>

>

> Suzanne

>

>

>

[Guest guest]

The best advice I can give is to talk other parents about the casts their

children have received from the nearest facilities that offer Early

Treatment w/ EDF casting. Then do as much research as you can on the

differences between casting techniques such as old Risser -vs-Mehtas Early

Treatment w/ EDF. It doesnt necessarily have to be a Shriners Hospital.

The reason a few Shriners are doing it is because they are not governed by

ins. companies, have great docs and ISOP thought the focus of our 1st few

ET Tutorials should be there (a non profit hosp.) so all children

regardless of ins. or income could be treated early. Now, docs from many

different Childrens Hospitals are seeing the benefits of ET and are

implementing it in their hospitals. Yay! it feels like ET is so close to

the top of the mountain. Its not Standard of Care yet, but will be soon

as the results are superior. Please make sure that the doc has the same

goal as you when it comes to casting Shane. This group is a great place

to start. I would also read all pertinent articles, which can be found in

the FILES section of CAST.

Let us know how we can help.

> Good Morning Everyone,

>

> I wanted to ask a question here. I've been reading alot here and see most

> people reference Shriner's Hospital. Is that where I should be going?

> I'm asking because doctor #1 admitted he only does fusion (which is NOT an

> option for Shane), doctor #2 was in New York at the Hospital for Special

> Surgery (wants to put Shane in a brace even though he said he knows it

> won't work and was rush rush) doctor #3 is also in New York at the

> Division of Pediatric Orthopaedics of Stanley Childrens Hospital of

> New York-Columbia Presbyterian (who is the first doctor to mention casting

> to me and is how I found this group. They had a link to I.S.O.P. which

> had a direct link to this group), doctor #4 is at Children's Hospital of

> Philadelphia but I don't have that appointment until 12/3/10. Should I be

> looking at Shriners and Shriners ONLY? I want the best and only the best

> for Shane. I do love the hospital where doctor #3 is. My oldest son (who

> is severely special needs) had an implant drilled through his skull (for

> his deafness) at that hospital and I couldn't have been more pleased. So,

> although I have a previous experience with that hospital, I don't with

> scoliosis and/or casting. I wanted the best for my oldest (which is who I

> got) and I want the same for Shane.

>

> Any thoughts? Help!!!!!

>

>

>>

>> Hello all,

>>

>> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2).

>> My 3 year old son, Shane, was diagnosed with scoliosis on September 14,

>> 2010 (the day after his 3rd birthday).

>>

>> I never knew what scoliosis was and there is no family history of it.

>> So, I was surprised to find out that he has it. It was never noticed at

>> any well child visit. It wasn't until September 13, 2010 (which is my

>> son's actual birthday) when he was vomiting all day and all night. The

>> next day, I took him to the emergency room because we thought he had

>> ingested a penny and a nickel. And because he was now vomiting for more

>> than 24 hours, the pediatrician was concerned about dehydration.

>>

>> At the emergency room, the took an x-ray of his stomach. The doctor

>> came in and informed me that, " we didn't find any foreign objects in his

>> stomach. But the x-ray does show that he has some scoliosis " . I was

>> devastated. Especially because they said he would need to have a

>> sedated MRI to see how bad it really was.

>>

>> On September 29, 2010, I took him for his 3 year old physical to his

>> pediatrician and that's when I was given a prescription to have a

>> scoliosis x-ray of the back done as well as a referral to see a

>> pediatric orthopedist. He had the scoliosis x-ray done on October 6,

>> 2010 and the first appointment to see the pediatric orthopedist was on

>> November 2, 2010. At that time, the orthopedist marked up the x-ray

>> with lines and went on to inform me that Shane's curve is a 52. He said

>> that there was nothing he could do because he specializes with fusion

>> and that Shane is too young for that and that he would require surgery

>> to implant growing rods. He had diagnosed Shane with Early Onset

>> Scoliosis. He said that bracing was not an option because his curve was

>> too bad at this point. He gave me a prescription to have a sedated MRI

>> done to see if there were any underlying conditions that would cause

>> this and told me that I would no longer be seeing him since he couldn't

>> do anything for him.

>>

>> The sedated MRI was done on November 9, 2010, and the results are

>> normal. I was told that there were no signs of anything to explain why

>> this curve has happened. And now he had another label of Infantile

>> Idiopathic Scoliosis.

>>

>> On November 11, 2010, I made an appointment with another orthopedist,

>> for a second opinion. He was very rush rush and I could see he was

>> getting frustrated with me because I was asking questions (which I'm

>> sure some were repetitive). He told me that eventually Shane would need

>> the growing rods but he would first like to try bracing (even though he

>> said he knew it wouldn't work).

>>

>> I then went to see another orthopedist, for a 3rd opinion. It was on

>> their website, I saw the link for the website which led me to this

>> group.

>>

>> In any case, Dr. #3 told me that a brace is out of the question but that

>> he would like to try casting. This was the first time I had heard about

>> such a thing. Everybody else kept saying growing rods, growing rods,

>> growing rods. The doctor did tell me that sometimes the casting does

>> not work and then we would have to move forward with the growing rods,

>> but that a lot of times casting does work.

>>

>> No decision was made yet because doctor #3 told me he would like to meet

>> with the other doctors in his group to be able to make a group decision

>> regarding what they think is the best course of treatment for Shane.

>>

>> I do have another appointment for Shane (for a 4th opinion) on December

>> 3, 2010, but I'm getting more and more confused. I've seen 3 different

>> specialists and each one has a different opinion for a first step. I

>> don't know if I should keep the appointment with doctor #4 or just

>> cancel it and forget about it.

>>

>> I want to do what is best for Shane and (for obvious reasons) I want the

>> best for Shane. I have ALOT of questions regarding casting. Even

>> though I'm not 100% sure that the rest of doctor #3's group wants to go

>> that way (I won't know for about 2 weeks because of the holiday). I

>> like any idea that prevents Shane being cut in any way.

>>

>> I'm just concerned about the casting in regards to changing his diaper,

>> mobility, playing on the mulchy playground, putting him in a car seat

>> and most importantly bathing.

>>

>> I have a ton of questions and I'm hoping that this group could help me.

>> I want to get as much information as I can get so that I can make an

>> informed decision and not ever wonder " what if " .

>>

>> Thank you for taking the time to read this post and I look forward to

>> all the advice I hope to get from others who have already been through

>> this.

>>

>> Suzanne

>>

>

>

>

[Guest guest]

I think its great that the doc there referred you to another family. Many

do not. IMO, one will always get the whole story from someone who is

actually going through the experience 1st hand.

> Dr. V at Stanley does do EDF casting. He also is at the fore front

> of vertebral stapling, I think. I happened to e-mail him about a year ago

> with questions about stapling.etc... Makenna's underlying genetic

> condition is very rare and always comes with progressive scoliosis that if

> often resistant to treatment. There just aren't very many cases like hers,

> so I tend to talk to anyone who may have answers I need. Anyway, he was

> very quick and curteous with a response and told me casting was her best

> option right now and that he had actually treated another patient with

> HGPPS and passed along my info to them so we could connect. Imagine that

> That brought my total to 4 families in the US!

> So even though I haven't met him personally, he has become a part of my

> string of small coincidences (or miracles!). Even though my question about

> stapling was premature and probably unnecessary... I never would have

> found that other family if I hadn't of asked...

> Dr. V is also on the list in the database. I visited their website the

> other day and was very impressed with their didicated section to early

> onset scoliosis.

> Good Luck! Sorry to share such a long and winded story.....

>

>

>

[Guest guest]

Hi Suzanne,

My opinion of Dr. V is very similar to Amy's. While I never met the man, nor

does he treat my child, I had some correspondence with him regarding VBS as

well. As some of you know, I (along with two other moms) run a VBS

forum/support group (www.vertebralstapling.com).

Anyway, on our VBS support group, we do have some children being treated by Dr.

V - none that I know of for casting, but one girl is braced for a moderate curve

and a few of our parents have children who did have VBS with Dr. V. The

consensus has been uninamous that he is truly AWESOME!!!!!

I also learned that he is among that handful of doctors who are really focused

on early onset scoliosis. In fact he provided a paper that he authored on that

topic, entitled " Early Onset Scoliosis, the Unsolved Challenge " which we posted

on our website.

Dr. B, the chief of staff at Shriners in Philly who happens to be my son's

doctor, also thinks the world of Dr. V, as I'm sure do the rest of his peers.

So I believe, Suzanne, that your son would be in excellent hands with him.

Having a son who was diagnosed at a young age as well, I went through what you

did seeing doctors who didn't seem to know what to do with a child at that age

with a significant curve. This was several years ago and I did not even know

that casting existed back then, which is one of the many reasons I respect and

admire so much for her relentless efforts to spread the word.

I try to do the same with regard to VBS, which - for those who are not familiar

with it - is a surgical option that is suitable for certain patients who meet

the criteria. It is a one-time surgery which is less invasive than growing

rods, has had very few complications and allows children to have no restrictions

afterward. Of course, we would all like to see our children avoid surgery if

possible, but for those who will at some point require surgery, I believe that

folks should know all the options out there.

Unfortunately, sometimes parents are not told about things like casting or VBS

by their doctors. My former ortho never mentioned casting to us when was

first diagnosed (before his second birthday) although I know now that it was

being done at the time, although not as widely as it is today, thanks largely to

's efforts.

OK, I'm rambling. But, Suzanne, if you would like to e-mail me, please feel

free to do so at mariaf305@.... I assume you are in or near NY so we are

probably neighbors :-)

>

> Dr. V at Stanley does do EDF casting. He also is at the fore front of

vertebral stapling, I think. I happened to e-mail him about a year ago with

questions about stapling.etc... Makenna's underlying genetic condition is very

rare and always comes with progressive scoliosis that if often resistant to

treatment. There just aren't very many cases like hers, so I tend to talk to

anyone who may have answers I need. Anyway, he was very quick and curteous with

a response and told me casting was her best option right now and that he had

actually treated another patient with HGPPS and passed along my info to them so

we could connect. Imagine that That brought my total to 4 families in the US!

> So even though I haven't met him personally, he has become a part of my string

of small coincidences (or miracles!). Even though my question about stapling was

premature and probably unnecessary... I never would have found that other family

if I hadn't of asked...

> Dr. V is also on the list in the database. I visited their website the other

day and was very impressed with their didicated section to early onset

scoliosis.

> Good Luck! Sorry to share such a long and winded story.....

>

[Guest guest]

Hey Momma,

I'de like to add your VBS site to ISOPs links page. I think we've talked

about this before, sorry for the delay. I would also love to see Dr. V's

article. Any way you could fwd to CAST, when you get a second?

Lets catch up after the holiday.

(hugs)

HRH

> Hi Suzanne,

>

> My opinion of Dr. V is very similar to Amy's. While I never met the man,

> nor does he treat my child, I had some correspondence with him regarding

> VBS as well. As some of you know, I (along with two other moms) run a VBS

> forum/support group (www.vertebralstapling.com).

>

> Anyway, on our VBS support group, we do have some children being treated

> by Dr. V - none that I know of for casting, but one girl is braced for a

> moderate curve and a few of our parents have children who did have VBS

> with Dr. V. The consensus has been uninamous that he is truly

> AWESOME!!!!!

>

> I also learned that he is among that handful of doctors who are really

> focused on early onset scoliosis. In fact he provided a paper that he

> authored on that topic, entitled " Early Onset Scoliosis, the Unsolved

> Challenge " which we posted on our website.

>

> Dr. B, the chief of staff at Shriners in Philly who happens to be my son's

> doctor, also thinks the world of Dr. V, as I'm sure do the rest of his

> peers.

>

> So I believe, Suzanne, that your son would be in excellent hands with him.

> Having a son who was diagnosed at a young age as well, I went through

> what you did seeing doctors who didn't seem to know what to do with a

> child at that age with a significant curve. This was several years ago

> and I did not even know that casting existed back then, which is one of

> the many reasons I respect and admire so much for her relentless

> efforts to spread the word.

>

> I try to do the same with regard to VBS, which - for those who are not

> familiar with it - is a surgical option that is suitable for certain

> patients who meet the criteria. It is a one-time surgery which is less

> invasive than growing rods, has had very few complications and allows

> children to have no restrictions afterward. Of course, we would all like

> to see our children avoid surgery if possible, but for those who will at

> some point require surgery, I believe that folks should know all the

> options out there.

>

> Unfortunately, sometimes parents are not told about things like casting or

> VBS by their doctors. My former ortho never mentioned casting to us when

> was first diagnosed (before his second birthday) although I know now

> that it was being done at the time, although not as widely as it is today,

> thanks largely to 's efforts.

>

> OK, I'm rambling. But, Suzanne, if you would like to e-mail me, please

> feel free to do so at mariaf305@.... I assume you are in or near NY

> so we are probably neighbors :-)

>

>

>>

>> Dr. V at Stanley does do EDF casting. He also is at the fore

>> front of vertebral stapling, I think. I happened to e-mail him about a

>> year ago with questions about stapling.etc... Makenna's underlying

>> genetic condition is very rare and always comes with progressive

>> scoliosis that if often resistant to treatment. There just aren't very

>> many cases like hers, so I tend to talk to anyone who may have answers I

>> need. Anyway, he was very quick and curteous with a response and told me

>> casting was her best option right now and that he had actually treated

>> another patient with HGPPS and passed along my info to them so we could

>> connect. Imagine that That brought my total to 4 families in the US!

>> So even though I haven't met him personally, he has become a part of my

>> string of small coincidences (or miracles!). Even though my question

>> about stapling was premature and probably unnecessary... I never would

>> have found that other family if I hadn't of asked...

>> Dr. V is also on the list in the database. I visited their website the

>> other day and was very impressed with their didicated section to early

>> onset scoliosis.

>> Good Luck! Sorry to share such a long and winded story.....

>>

>

>

>

[Guest guest]

This is just my opinion, but but if we lived on the East coast, based on reading on this group for almost 2 years, I would go to Rochester for casting, as Jenn said. On the West coast we chose SLC Shriners. That is not to say there are not a lot of other wonderful doctors casting, but I have been very impressed with what I've heard about Rochester. I may be forgetting someone else great who is nearer to you. BTW, my niece was treated at the Hospital for Special Surgery for hip dysplasia, but I don't think anyone in NYC does proper casting for IS. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Leggett <jennifer.leggett@...>infantile scoliosis treatment Sent: Tue, November 23, 2010 6:56:58 AMSubject: Re: Re: New Member

If you are in NY I would go to Dr. S or Dr. R in rochester. We are in NY and could not be happier. Dr S is our DR and is one of the top 2 most experienced drs in the country. His bedside manor is the best I have EVER seen. If I have a problem at home and call he Personally calls me back. If I email him I typically get a response in 30 minutes unless he is with clients but never more than a few hours. I have even gotten responses after 15 minutes at 11:00 PM. His STAFF is amazing!

Email or Call 518-686-1452 if you have questions about them. JennOn Tue, Nov 23, 2010 at 8:01 AM, suzy12771 <suzy3333@...> wrote:

Good Morning Everyone,

I wanted to ask a question here. I've been reading alot here and see most people reference Shriner's Hospital. Is that where I should be going? I'm asking because doctor #1 admitted he only does fusion (which is NOT an option for Shane), doctor #2 was in New York at the Hospital for Special Surgery (wants to put Shane in a brace even though he said he knows it won't work and was rush rush) doctor #3 is also in New York at the Division of Pediatric Orthopaedics of Stanley Childrens Hospital of New York-Columbia Presbyterian (who is the first doctor to mention casting to me and is how I found this group. They had a link to I.S.O.P. which had a direct link to this group), doctor #4 is at Children's Hospital of Philadelphia but I don't have that appointment until 12/3/10. Should I be looking at Shriners and Shriners ONLY? I want the best and only the best for Shane. I do love the hospital where doctor #3 is. My oldest son (who is severely

special needs) had an implant drilled through his skull (for his deafness) at that hospital and I couldn't have been more pleased. So, although I have a previous experience with that hospital, I don't with scoliosis and/or casting. I wanted the best for my oldest (which is who I got) and I want the same for Shane.

Any thoughts? Help!!!!!

>

> Hello all,

>

> I am the mother of 4 children (son 15, son 12, son 3 and daughter 2). My 3 year old son, Shane, was diagnosed with scoliosis on September 14, 2010 (the day after his 3rd birthday).

>

> I never knew what scoliosis was and there is no family history of it. So, I was surprised to find out that he has it. It was never noticed at any well child visit. It wasn't until September 13, 2010 (which is my son's actual birthday) when he was vomiting all day and all night. The next day, I took him to the emergency room because we thought he had ingested a penny and a nickel. And because he was now vomiting for more than 24 hours, the pediatrician was concerned about dehydration.

>

> At the emergency room, the took an x-ray of his stomach. The doctor came in and informed me that, "we didn't find any foreign objects in his stomach. But the x-ray does show that he has some scoliosis". I was devastated. Especially because they said he would need to have a sedated MRI to see how bad it really was.

>

> On September 29, 2010, I took him for his 3 year old physical to his pediatrician and that's when I was given a prescription to have a scoliosis x-ray of the back done as well as a referral to see a pediatric orthopedist. He had the scoliosis x-ray done on October 6, 2010 and the first appointment to see the pediatric orthopedist was on November 2, 2010. At that time, the orthopedist marked up the x-ray with lines and went on to inform me that Shane's curve is a 52. He said that there was nothing he could do because he specializes with fusion and that Shane is too young for that and that he would require surgery to implant growing rods. He had diagnosed Shane with Early Onset Scoliosis. He said that bracing was not an option because his curve was too bad at this point. He gave me a prescription to have a sedated MRI done to see if there were any underlying conditions that would cause this and told me that I would no longer be seeing him since

he couldn't do anything for him.

>

> The sedated MRI was done on November 9, 2010, and the results are normal. I was told that there were no signs of anything to explain why this curve has happened. And now he had another label of Infantile Idiopathic Scoliosis.

>

> On November 11, 2010, I made an appointment with another orthopedist, for a second opinion. He was very rush rush and I could see he was getting frustrated with me because I was asking questions (which I'm sure some were repetitive). He told me that eventually Shane would need the growing rods but he would first like to try bracing (even though he said he knew it wouldn't work).

>

> I then went to see another orthopedist, for a 3rd opinion. It was on their website, I saw the link for the website which led me to this group.

>

> In any case, Dr. #3 told me that a brace is out of the question but that he would like to try casting. This was the first time I had heard about such a thing. Everybody else kept saying growing rods, growing rods, growing rods. The doctor did tell me that sometimes the casting does not work and then we would have to move forward with the growing rods, but that a lot of times casting does work.

>

> No decision was made yet because doctor #3 told me he would like to meet with the other doctors in his group to be able to make a group decision regarding what they think is the best course of treatment for Shane.

>

> I do have another appointment for Shane (for a 4th opinion) on December 3, 2010, but I'm getting more and more confused. I've seen 3 different specialists and each one has a different opinion for a first step. I don't know if I should keep the appointment with doctor #4 or just cancel it and forget about it.

>

> I want to do what is best for Shane and (for obvious reasons) I want the best for Shane. I have ALOT of questions regarding casting. Even though I'm not 100% sure that the rest of doctor #3's group wants to go that way (I won't know for about 2 weeks because of the holiday). I like any idea that prevents Shane being cut in any way.

>

> I'm just concerned about the casting in regards to changing his diaper, mobility, playing on the mulchy playground, putting him in a car seat and most importantly bathing.

>

> I have a ton of questions and I'm hoping that this group could help me. I want to get as much information as I can get so that I can make an informed decision and not ever wonder "what if".

>

> Thank you for taking the time to read this post and I look forward to all the advice I hope to get from others who have already been through this.

>

> Suzanne

>

[Guest guest]

Welcome, Bob. Your name made me laugh. :-)

Beth Byrne

http://www.SoapAndGarden.com

Garden goodness in every bar!

www/SoapandGarden.blogspot.com

http://www.Saponifier.com

On Sat, Jun 4, 2011 at 1:09 PM, bobhenninger99 <bobhenninger99@...>wrote:

>

>

> Hi All...my name is bob henninger and have been making soap for 11 years.

> My website is www.friendlyfumes.com

>

>

>

[Guest guest]

Welcome Bob. I love that name friendlyfumes! I'll check out your site when I

leave here.

Delores

Daisy May Natural Soap

>

> Hi All...my name is bob henninger and have been making soap for 11 years. My

website is www.friendlyfumes.com

>

[Guest guest]

You may need to get a reclining convertible carseat rather than using the infant seat. Depending on the cast, you will likely go up 1-2 sizes in clothes. I went to the store and bought a few things on clearance in both one and two sizes up. Once I knew what sizes I needed, I asked everyone I knew for hand me downs and have hardly had to buy any cast clothes. The other thing I bought ahead of our first cast is a contour changing pad to put on the counter for bathing. It works great for us. Good luck on your first cast! There is definately an adjustment period, but before you know it, it will be your new "normal".

Ann Boros

www.curvybaby.comjayann_24@... To: infantile scoliosis treatment From: francesgauntt@...Date: Thu, 22 Sep 2011 11:30:17 -0500Subject: New Member

Hi everyone! I am new to the group. My son was diagnosed with a 28-29 curve at 4 months. He is now five months old, MRI was negative & he goes for first cast placement on October 10 at our local children's hospital here in Alabama. I am very apprehensive of what to expect. (do we need a bigger car seat, clothes) I am a nurse but very unsure of how to handle this, any advice would greatly be appreciated.Sent from my Verizon Wireless Phone

[Guest guest]

Hey! We have been casting at Children’s Hospital in B’ham, Alabama with Dr. K since April 2010. Sierra just got her 8th cast on Sept. 2nd 2011. I would love to talk. Where do u live? We used to live in B’ham but have been down on the Coast near Gulf Shores & Orange Beach for about 13 yrs. I noticed Sierra’s curve at 9.. mo. This casting has been difficult but doable..glad you found this site. You are gonna have lots of questions & concerns. I have battled BC/BS of Alabama in order to get them to pay. They at 1st denied all our claims with Sierra, but are now covering 100%. Feel free to contact me anytime. We were once where ya’ll are now & I know how scary it can be!!! Sierra’s is Idiopathic also. I did have to go up a size as far as shirts and stuff but, not in the car seat. We just adjusted the straps. Call me if u want! Home/Office 251-986-7022 & cell 251-228-0431! Hope to hear from u! Believe me I know how overwhelming this can be. I’m on FB too. It is under Kristi Strickland . There is a pic of me & Sierra on my profile pic. At 1st I did not talk about Sierra’s scoliosis on FB but, now I want everyone to know and be informed. Just b/c it is so rare does not mean it might not help someone else! Hope to talk soon!

Kristi Mommy To Sierra....now 2 1/2 yrs. old. Started with a 34 degree curve at 12 months old. Now 8th cast. Down to ZERO in cast!

From: francesgauntt@...

Sent: Thursday, September 22, 2011 11:30 AM

infantile scoliosis treatment

Subject: New Member

Hi everyone! I am new to the group. My son was diagnosed with a 28-29 curve at 4 months. He is now five months old, MRI was negative & he goes for first cast placement on October 10 at our local children's hospital here in Alabama. I am very apprehensive of what to expect. (do we need a bigger car seat, clothes) I am a nurse but very unsure of how to handle this, any advice would greatly be appreciated.Sent from my Verizon Wireless Phone

[Guest guest]

Hey!

Welcome to the group! We casted Logan at 9 months old, I was apprehensive as well. I see your lil one is 5 months old. If he is crawling, you will need to remind them that where they trim his cast will be a little different. A lot of casts kids are walking. When they are casted and crawling, their arms and legs are used in a different direction. The reclining carseat is MUCH better! Britax makes an awesome one, Logan is 2 and still sits in it. The seat goes up to 80 pounds.

Overalls or onesie/jumpers worked teh best for logan. Once we tried to do seperates and the pants/shorts will wiggle thier way down. We had to go up one size in cast.

Also, socks with "grippers" on the bottom will help. Like the plastic writing. That will help with traction during crawling and when lil man starts to walk.

Hope this helps!

Logan's mama (45 down to 9, cast #10)

From: "francesgauntt@..." <francesgauntt@...>infantile scoliosis treatment Sent: Thursday, September 22, 2011 12:30 PMSubject: New Member

Hi everyone! I am new to the group. My son was diagnosed with a 28-29 curve at 4 months. He is now five months old, MRI was negative & he goes for first cast placement on October 10 at our local children's hospital here in Alabama. I am very apprehensive of what to expect. (do we need a bigger car seat, clothes) I am a nurse but very unsure of how to handle this, any advice would greatly be appreciated.Sent from my Verizon Wireless Phone

[Guest guest]

Hi there! We recently got our first cast as well (9/8/11) at Shriner's in Philly. I am also an RN (it seems there are a lot of us on here), but I wasn't exactly prepared for what the first casting would be like. My son, , is somewhat older than your son. He was casted at 16 months with a 44 degree curve and 27 degree RVAD. I believe others have already suggested this, but I would certainly recommend the convertible carseat over the infant carrier. The cast is MUCH lover over the hips/pubic area than I had expected, and there is a lot of pressure there. For clothes, I actually overestimated the size increase. was in 12-18 months clothes before, and I bought 2T. He could have definitely used 18-24 months clothes, and they would have

probably looked better. Also, I have already discovered that elastic waist pants are the BEST. We put his pants OVER the cast (too tight to fit under), and they are sooooo much easier. I'm not sure if you have the store Naartjie near where you live, but there clothes are very, very cast-friendly. Another thing that has been awesome for hair washing has been a beautician's cape ... they sell them at Sally's Beauty Supply for about $7 ... and it makes water worries much less when we wash 's hair salon style in the kitchen sink. Also, lots of large, plastic bibs for eating and drinking to prevent spills. Hope that helps! The actually casting process was harder than we had prepared ourselves for. The procedure itself was relatively short, so that was nice. However, the initial recovery was pretty bad. I'm 100% sure everyone is different, but

woke up hysterical. I imagine I would too if I woke up with a cast on! His pulse ox was in the low 80's...and he had swelling in his legs. You will find throughout this process that you HAVE to be your child's #1 advocate...insist, insist, insist. After the resident came up to our room and trimmed the bottom of 's cast, he calmed down because he was able to sit up again (it was initially SO low that he could not sit). I was NOT expecting that, so I think it would have helped if someone had told me that was a possibility. Before we left the hospital, however, he was walking and sitting supported. It took several cast trimmings, moleskin applications, etc. The first few days are a really tough adjustment (more so for the parents, I think). However, within about 1.5 weeks, was able to sit on his own, pull himself up, reach for toys, walk/run, you name it!

Moral of the story from my experience so far: the beginning is WORSE than you expected, but within days, it is BETTER than you expected. MY VERY BEST WISHES AND PRAYERS FOR YOU AND YOUR FAMILY! Keep us posted!

[Guest guest]

Welcome, Nieki!When I was training my son for #1, he didn't understand the feelings of wet and dry, but he did know when his bladder felt full. I would ask him if he was "full" periodically; if he was, I told him he needed to go empty his bladder. He understood "full" and "empty" feelings more than "wet" or "dry."With chewing, I got him a chew necklace that he could wear and redirected him towards that when he was chewing or mouthing inappropriate objects. You can get them made from theratubing or refrigerator tubing (my son preferred the latter).Maybe he is pulling his teeth out to get money from the tooth fairy? If he still believes in that, tell him the tooth fairy only pays for teeth that come out on their

own.Hope this helps.BTW, my son is now 16. When he was first diagnosed, he was listed as LFA with moderate to severe classic/infantile/Kanner's autism; now (except for the speech difficulties--although he communicates pretty well) he looks closer to Asperger's.new member1.1Posted by:

"nieki" momma_kat_of2@... momma_kat_of2Sat Sep 24, 2011 7:56 am (PDT)Hi. My name is Nieki and I am the mother of a 10 year old boy with autism. I new to this whole group thing and all.Well, was diagnosed with high functioning autism when he was 4. It has been a challenge the last 6 years, but we're surviving. I do have some concerns and a plea for some help. He still has accidents in his pants quite often and I was wondering if anyone was going thru the same? He says he can't feel it when he has a accident. I don't know what to do about it. Anyone have any ideas? Also, there's the whole chewing on things issue; we're doing okay and it seemed he was stopping that, but now he's started doing it again. He chews on everything, clothes, toys and even his bed stuff. Help! I'm afraid he's going to choke on something that he chews off.And then there's pulling his teeth. Every time he gets a tooth that is just a little loose, he pulls it out. I'm worried he going to pull out his permanent teeth someday.Does anyone have any ideas for me? Please help if you can. Thank you, Nieki

[Guest guest]

Thanks Sara, we also enjoyed many aspects of the Paleo diet book and, like you,

found it lacking in some food options that are more likely to be how Man

actually evolved. Particularly the fat quotient; we used to almost laugh at the

author's depiction of a Neanderthal eating the equivalent a boneless, skinless

chicken breast with vegetables. The author's fat-phobia bled into his writing

bias.

I think most people here who have gone through dietary changes would suggest a

very slow switch, first eliminating " easy " foods to dump, like soda pop and

candy, then gradually easing your way. Overcoming the true and legitimate

addictions to foods such as sugar and bread will take longer!

Be sure to peruse the RECIPES found in our FILES section! These are amazing

foods that will taste great and make you healthy!

Will Winter

[Guest guest]

Oy. I can't help with much of that, but I can tell you that http://www.nationalautismresources.com/oral-motor.html sells a lot of chewable jewelry and fidget toys and such that might be helpful? We got Razi, nearly twelve, a chewable necklace this summer and he really like it. He needs another one. He lost the first one at boy scout camp!--

-- Vicki

Married May 21, 1995. Ima shel Raziel, born 11/16/99;

Zipporah, born at home 5/19/02; and Lilah, born at home 9/08/04.

"Stay-at-home" Ima since October 2002.From: nieki <momma_kat_of2@...>Subject: new memberautism Date: Saturday, September 24, 2011, 10:56 AM

Hi. My name is Nieki and I am the mother of a 10 year old boy with autism. I new to this whole group thing and all.

Well, was diagnosed with high functioning autism when he was 4. It has been a challenge the last 6 years, but we're surviving. I do have some concerns and a plea for some help. He still has accidents in his pants quite often and I was wondering if anyone was going thru the same? He says he can't feel it when he has a accident. I don't know what to do about it. Anyone have any ideas?

Also, there's the whole chewing on things issue; we're doing okay and it seemed he was stopping that, but now he's started doing it again. He chews on everything, clothes, toys and even his bed stuff. Help! I'm afraid he's going to choke on something that he chews off.

And then there's pulling his teeth. Every time he gets a tooth that is just a little loose, he pulls it out. I'm worried he going to pull out his permanent teeth someday.

Does anyone have any ideas for me? Please help if you can.

Thank you, Nieki

[Guest guest]

Welcome Jen! I'm sure we will learn from you as well!

Kathy