Re: 85 degree curve

[Guest guest]

What other medical problems does your son have? Where are you being casted? My questions are because my daughter was turned down for casting because of too many medical problems. Thanks.

To: Infantile Scoliosis <infantile_scoliosis >Sent: Sunday, August 9, 2009 8:06:05 PMSubject: 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Hi Sandy,

My daughter is almost 3. She hasn't had a cast yet, but has been wearing a brace for a year now. I had big anxiety about how life would be for her in a brace. She has done awesome! Other than when it started getting too small, then the next one not fitting right, and right now some skin breakdown, she hasn't really complained about wearing it. It's like somehow she just knows its suppose to help her.

However, she is having her hemi-vertabra removed next month and will be in a cast for the following 3-4 months. I am anxious about this for other reasons, like she LOVES the water and not being able to even take a bath is going to be rough I'm sure. I think in the aspect that she knows she gets to take the brace off and moving to something she can't, will be harder in some ways. I think going from a cast to a brace would have been easier for her to deal with.

Keep us posted on how things are going.

Jane

To: Infantile Scoliosis <infantile_scoliosis >Sent: Sunday, August 9, 2009 4:06:05 PMSubject: 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

my little guy is failure to thrive and has asthma, reflux, skeletal dysphasia with scoliosis, development delay secondary to profound hypotonic, g-tube, non-ambulatory and esopharyngeal dysphasia. This is being done in Akron, Ohio. We will see the anesthesiologist this Friday because they are very concerned about his swallowing and breathing. Our doctor wants him asleep because it is going to take 2 hours. He just started sitting up a few months ago.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

My son wore a brace for a very short time. He was so anxious over having it on that it affected his breathing. The medical team felt it was doing more harm than good because no matter what we did we couldn't settle him down. I am very nervous about the cast. The doctor said if he panics and decides he's not going to breath they will take it off. The problem is if we don't get him in this cast he is going to die. His left lung is completely smashed and he really struggles. It's like a catch 22 with him. We are going to meet with Palliative Care tomorrow to see if we can't medicate him to get him use to it being on and hopefully accept that it isn't going to hurt him.

Sorry to hear your little one is going to need surgery. My prayers are with her.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Sandy,Everyone's  experiences in the group differ but I can tell you how it went for me and Isabella.  She just got her 1st cast on July 2nd and did amazingly well.  She was a little cranky in the hospital coming out of anesthesia but  was much better when we left to go back to our hotel. The first day she would scream if she dropped something and couldn't figure out how to get it but the next day she was bending over and doing it herself and the day after that was completely back to normal with climbing on the furniture. I know others in the group said it took 2 weeks for their child to adjust but hopefully your child will bounce back like mine did. I have never heard of them changing casts every month, where are you receiving treatment?  We go to Rochester NY and are getting cast

changes every 2 months.  I will say that sleeping was an issue but I think crib mattresses are too hard and so we switched to something else and that's been working well.  Any questions, just ask! Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: Infantile Scoliosis <infantile_scoliosis >Sent: Sunday, August 9, 2009 8:06:05 PMSubject: 85 degree

curve

 

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this.  How did your children do with this.  We were told it would be changed every 4 weeks.  His curve went from 62 to 85 degrees in three months.  He has multiple other problems as well.

 

I was so happy to find this group and hope that you can help me to help him.  His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one.  We have been talking allot to him and showing him pictures but I'm not sure he really understands.

 

Any help you could give me would be appreciated.

 

Sandy

 

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

 

 

[Guest guest]

Sandy,

I do think a pump at a slow rate is probably your best bet. How many cans a day of Peptimen Junior do you currently give him a day? Do you feed him round the clock? Does he have regular BM's? I'm asking because sometimes just getting the bowels regulated can help with decreasing the vomiting. Are you working with a Pediatric Dietitian? ~KristaJack's Mom, Jack is 24 months old, in his 1st braceJack started casting at 41 degrees and is now measuring 0 in his brace!!! Receiving care from Shriners Hospital in Salt Lake City, Utah

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>Subject: [infantile_scoliosi s] 85 degree curveTo: "Infantile Scoliosis" <infantile_scoliosis @yahoogroups. com>Date: Monday, August 10, 2009, 12:06 AM

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Krista he gets 4 cans a day. Yes, he is fed around the clock. We take him off sometimes so he can be a free man....he loves that. We are working with the dietician from Palliative Care at Akron Children's Hospital. He has no problem with bowel movements.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curveTo: "Infantile Scoliosis" <infantile_scoliosis @yahoogroups. com>Date: Monday, August 10, 2009, 12:06 AM

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Sandy,

Glad you have an RD on your team. Switching to a more calorically dense formula is a great idea. As you said, starting out at the same calorie intake at first to get him used to it and then increasing slowly to continue to get the calories up. I would continue to work with the RD closely, have her/him continue to re-assess his nutritional needs. Does he take in any oral nutrition?~KristaJack's Mom, Jack is 24 months old, in his 1st braceJack started casting at 41 degrees and is now measuring 0 in his brace!!! Receiving care from Shriners Hospital in Salt Lake City, Utah

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>Subject: [infantile_scoliosi s] 85 degree curveTo: "Infantile Scoliosis" <infantile_scoliosis @yahoogroups. com>Date: Monday, August 10, 2009, 12:06 AM

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Krista,

No, he cannot swallow.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curveTo: "Infantile Scoliosis" <infantile_scoliosis @yahoogroups. com>Date: Monday, August 10, 2009, 12:06 AM

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Sandy,That is so sad!  I hope he does tolerate the cast because the surgeries would be so hard on him.  I wish you all the best of luck and keep us informed! Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Sunday,

August 9, 2009 11:06:06 PMSubject: Re: 85 degree curve

 

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached.  It is such a sad situation.  This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him.  He has made progress in the year he has been with us but he has so far to go also.

Sandy

 

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

 

 

[infantile_scoliosi s] 85 degree curve 

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this.  How did your children do with this.  We were told it would be changed every 4 weeks.  His curve went from 62 to 85 degrees in three months.  He has multiple other problems as well.

 

I was so happy to find this group and hope that you can help me to help him.  His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one.  We have been talking allot to him and showing him pictures but I'm not sure he really understands.

 

Any help you could give me would be appreciated.

 

Sandy

 

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

 

 

[Guest guest]

is correct. Erie does have the table and the Dr. that she speaks of here is my sons Dr. (you can email me off line if you would like his name). He's wonderful! and yes, he is Mehta trained.

I can tell you Sandy that Akron does NOT have a Mehta table and that none of the Dr.'s there are Mehta trained.

Sherry

Mom to Logan

Age 5

One 3rd cast from Erie Shriner's

I just wanted to say that I am somewhat familiar with doctor in Erie, PA (Shriners) who does casting. He also practices at the Philadelphia Shriners, but is at Erie a few days a month. I know several families whose children are his patients. A while back, I had inquired for another parent and was told they do have the proper frame/table for casting and the doctor(s) are Mehta trained.Best of luck!

[Guest guest]

This is a sad story. I hope your doc is Mehta trained. There aren't many out there! Maybe you can arrange for a phone consult if you have any more questions after your fri visit. It is definately a cast right? I wish your family the best. We have see dr in AL who we really like, Mehta trained, & are now headed to Rochester in 2 wks.

Subject: Re: 85 degree curveTo: infantile_scoliosis Date: Monday, August 10, 2009, 2:04 PM

Sandy,

That is so sad! I hope he does tolerate the cast because the surgeries would be so hard on him. I wish you all the best of luck and keep us informed!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: infantile_scoliosis @yahoogroups. comSent: Sunday, August 9, 2009 11:06:06 PMSubject: Re: [infantile_scoliosi s] 85 degree curve

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached. It is such a sad situation. This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him. He has made progress in the year he has been with us but he has so far to go also.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Sandy,

I think it's amazing that you have taken this child into your life and your heart. You must be a very special soul.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: Re: 85 degree curveTo: infantile_scoliosis Date: Monday, August 10, 2009, 7:04 AM

Sandy,

That is so sad! I hope he does tolerate the cast because the surgeries would be so hard on him. I wish you all the best of luck and keep us informed!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: infantile_scoliosis @yahoogroups. comSent: Sunday, August 9, 2009 11:06:06 PMSubject: Re: [infantile_scoliosi s] 85 degree curve

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached. It is such a sad situation. This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him. He has made progress in the year he has been with us but he has so far to go also.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

There is nothing special about me. The children I care for are the special ones. I have been doing this many, many, many years. We have four angels in heaven and many here on earth. I can't imagine not having a special child or children in my life.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Sandy,

Dont believe you are not special. It takes someone very special and kind and STRONG to do what you do. The children you care for are blessed to have you.

God Bless You!

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] 85 degree curveTo: infantile_scoliosis @yahoogroups. comDate: Monday, August 10, 2009, 7:04 AM

Sandy,

That is so sad! I hope he does tolerate the cast because the surgeries would be so hard on him. I wish you all the best of luck and keep us informed!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: infantile_scoliosis @yahoogroups. comSent: Sunday, August 9, 2009 11:06:06 PMSubject: Re: [infantile_scoliosi s] 85 degree curve

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached. It is such a sad situation. This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him. He has made progress in the year he has been with us but he has so far to go also.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

I agree with Heidi. It takes a special soul and saintly person to do what you are doing. Your child is very lucky to have you.

Joan

To: infantile_scoliosis Sent: Monday, August 10, 2009 12:52:13 PMSubject: Re: 85 degree curve

Sandy,

I think it's amazing that you have taken this child into your life and your heart. You must be a very special soul.Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] 85 degree curveTo: infantile_scoliosis @yahoogroups. comDate: Monday, August 10, 2009, 7:04 AM

Sandy,

That is so sad! I hope he does tolerate the cast because the surgeries would be so hard on him. I wish you all the best of luck and keep us informed!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: infantile_scoliosis @yahoogroups. comSent: Sunday, August 9, 2009 11:06:06 PMSubject: Re: [infantile_scoliosi s] 85 degree curve

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached. It is such a sad situation. This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him. He has made progress in the year he has been with us but he has so far to go also.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

AMEN

Joan

To: infantile_scoliosis Sent: Monday, August 10, 2009 1:50:29 PMSubject: Re: 85 degree curve

Sandy,

Dont believe you are not special. It takes someone very special and kind and STRONG to do what you do. The children you care for are blessed to have you.

God Bless You!

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] 85 degree curveTo: infantile_scoliosis @yahoogroups. comDate: Monday, August 10, 2009, 7:04 AM

Sandy,

That is so sad! I hope he does tolerate the cast because the surgeries would be so hard on him. I wish you all the best of luck and keep us informed!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: infantile_scoliosis @yahoogroups. comSent: Sunday, August 9, 2009 11:06:06 PMSubject: Re: [infantile_scoliosi s] 85 degree curve

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached. It is such a sad situation. This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him. He has made progress in the year he has been with us but he has so far to go also.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Sandy,

You must be an Angel sent directly from heaven!! It really does take a special kind of person to do what you do. Imagine the difference you are making in these wonderful kids lives! Good for you!!!!!!!

Lynn

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] 85 degree curveTo: infantile_scoliosis @yahoogroups. comDate: Monday, August 10, 2009, 7:04 AM

Sandy,

That is so sad! I hope he does tolerate the cast because the surgeries would be so hard on him. I wish you all the best of luck and keep us informed!

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: infantile_scoliosis @yahoogroups. comSent: Sunday, August 9, 2009 11:06:06 PMSubject: Re: [infantile_scoliosi s] 85 degree curve

They wanted to cast him when he was at 62 but his breathing issues are so bad they were afraid he would end up on a vent and/or have to be trached. It is such a sad situation. This little boy came from a world where he was so frightened and treated so terrible that he just doesn't trust anyone or anything around him. He has made progress in the year he has been with us but he has so far to go also.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[infantile_scoliosi s] 85 degree curve

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

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[Guest guest]

Sandy,

Due to the fact that your son is not able to take in any nutrition orally, it is even more important that the RD continue to re- assess your son's nutritional needs. As I mentioned continuing to get the calories up to meet your son's growth requirements. The main principle behind the casting method is for your son to grow with the cast on, to "train" the spine to grow straight, therefore adequate Kcals for his growth is a must. Obviously the RD working with you and you son, knows much more about him than I do, but if the RD wanted to consult with me via email, I am more than willing/happy to be contacted privately.

I know you received some information from others on the group about the importance of having your son casted by a Mehta trained MD. It sounds like the hospital that you are currently receiving treatment is not trained...but that there is a Doc. close by that is. I would really encourage you to get a second opinion from this MD. Due to the fact that your son has other medical issues, maybe one Dr. can provide cast care and you can continue to have your son see the MD at Akron's Children's Hospital for his other needs. Just a thought.

You are a wonderful mom, with clearly a GIANT heart...I wish you ALL the very best. Please feel free to email me with the group or privately if you have any other questions cast or nutrition related. Take good care of yourself.~KristaJack's Mom, Jack is 24 months old, in his 1st braceJack started casting at 41 degrees and is now measuring 0 in his brace!!! Receiving care from Shriners Hospital in Salt Lake City, Utah

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>Subject: [infantile_scoliosi s] 85 degree curveTo: "Infantile Scoliosis" <infantile_scoliosis @yahoogroups. com>Date: Monday, August 10, 2009, 12:06 AM

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Hi Sandy,

I'm so sorry.... I think it is harder on them as they get older to introduce the casting.... I can e-mail you privately a pic of my Noelle in cast.... She'll be 3 at the end of September. I always that the first cast is the worst to adjust to.... Basically the first 2 weeks and then you get your sanity back and a routine develops. Kids usually adjust sooner, Thank God! LOL For the anxiety prior to the procedure there is a drug called Versed that helps calm/reduce anxiety in kids that they give orally, which may help. One of the dads that posts here made a cast for his son's favorite stuffed animal and that seems to help his son quite a bit....... Hugs to you and e-mail me if you need anything.... - Noelle's mommy, 2 1/2 years old and in 7th cast from Rochester NY, reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected

Ehler's Danlos III

Subject: 85 degree curveTo: "Infantile Scoliosis" <infantile_scoliosis >Date: Monday, August 10, 2009, 12:06 AM

My 3 year old will receive his first cast on August 21st and I am nervous about how he is going to accept this. How did your children do with this. We were told it would be changed every 4 weeks. His curve went from 62 to 85 degrees in three months. He has multiple other problems as well.

I was so happy to find this group and hope that you can help me to help him. His anxiety level is very high and I am so afraid what is going to happen when he goes to sleep without a cast and then wakes up with one. We have been talking allot to him and showing him pictures but I'm not sure he really understands.

Any help you could give me would be appreciated.

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

[Guest guest]

Its my understanding that the doc that was

trained in Philly by the pioneer of ET (back in 06) is no longer practicing

there. The docs rotating from Erie to Philly are applying under arm jackets in

all cases, so please confirm that an underarm jacket would hold such a severe

curve. Under arm jackets are showing success for thoracolumbar curves and

curves w/ an apex below t-9 only.

Thought you should know. Contact me

direct with any questions.

Sincerely,

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of

Sent: Sunday, August 09, 2009 8:35

PM

To: infantile_scoliosis

Subject: Re:

85 degree curve

I just wanted to say that I am somewhat familiar with

doctor in Erie, PA (Shriners) who does casting. He also practices at the

Philadelphia Shriners, but is at Erie a few days a month. I know several

families whose children are his patients. A while back, I had inquired for

another parent and was told they do have the proper frame/table for casting and

the doctor(s) are Mehta trained.

Best of luck!

>

> Just to chime in with and Sandy... There are a list of the trained

Mehta casting docs on CAST. If you are both in Ohio, Erie Shriner's in Pa does

the casting and there are 2 top-notch docs in Rochester, NY that do the Mehta

casting and you should really look into this. Sorry, I'm not trying to sound

pushy! I live in Pgh, PA and travel 4 hours to Rochester. If you need any info,

let me know and other members will help as well!

>

> Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

>

>

>

>

> ________________________________

>

> To: infantile_scoliosis

> Sent: Sunday, August 9, 2009 9:35:51 PM

> Subject: Re: 85 degree curve

>

>

> Hopefully some other expert parents will reply to this. This sounds like a

Riser casting instead of early treatment Metha casting.

> That type of casting which is described on the infant scoliosis web site

is totally different than what I think you are describing.

> Is it being done at Akron Children's? Can you e-mail me the Doctors name

privately at

> kritchie4yahoo (DOT) . com? My friend and I both are looking for a doctor

that will cast our children. We live in Columbus, Ohio.

>

>

>

>

> ________________________________

> From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>

> To: infantile_scoliosis @yahoogroups. com

> Sent: Sunday, August 9, 2009 9:14:43 PM

> Subject: Re: [infantile_scoliosi s] 85 degree curve

>

>

> my little guy is failure to thrive and has asthma, reflux, skeletal

dysphasia with scoliosis, development delay secondary to profound hypotonic,

g-tube, non-ambulatory and esopharyngeal dysphasia. This is being done in Akron, Ohio. We will see the anesthesiologist this Friday because they are very concerned

about his swallowing and breathing. Our doctor wants him asleep because it is

going to take 2 hours. He just started sitting up a few months ago.

>

> Sandy

>

> " Life's not about waiting for the storm to pass...

> It's about learning to dance in the rain. "

> ~~~Vivian Greene

>

>

>

> [infantile_scoliosi s] 85 degree curve

> >

> >

> >My 3 year old will receive his first cast on August 21st and I am

nervous about how he is going to accept this. How did your children do with

this. We were told it would be changed every 4 weeks. His curve went from 62 to

85 degrees in three months. He has multiple other problems as well.

> >

> >I was so happy to find this group and hope that you can help me to

help him. His anxiety level is very high and I am so afraid what is going to

happen when he goes to sleep without a cast and then wakes up with one. We have

been talking allot to him and showing him pictures but I'm not sure he really

understands.

> >

> >Any help you could give me would be appreciated.

> >

> >Sandy

> >

> > " Life's not about waiting for the storm to pass...

> >It's about learning to dance in the rain. "

> >~~~Vivian Greene

> >

> >

> >

> >

>

[Guest guest]

Patty,

Yes, there is a list of the Mehta trained Dr.'s here on the board but the Dr. at Erie, that rotates from Philly, is absolutely Mehta trained and he is not listed on the list. He is our Dr. and we have spoken more times than I can count about this and he was personally trained sometime ago by someone who was directly trained by Dr. Mehta herself. (I even asked him why he thought he wouldn't be listed on the ISOP website and he didn't know)

Just thought I'd share.

If you'd like the name of the Dr. I'd be happy to give that to you if you send me a direct email.

Sherry

Mom to Logan, age 5

in 3rd cast from Erie, Shriner's

[Guest guest]

The pioneer of ET stands firm on the use of under arm casts being used for low

curves only(thoracolumbar & anything below T-9/T-10) and over the shoulder casts

for thoracic curves above the T-9 & 10. I was told directly by Erie that they

are using under arm jackets in all cases. If the surgeons in Erie are now

rotating from Erie to Philly, children being treated in Philly are now also

receiving under arm, if the original 2 Mehta trained surgeons are no longer

practicing there.. Yes, Philly has the correct frame. Things may have changed

since my last conversation with Erie (5 months ago), so if they have, please let

me know. ISOP will continue to refer patients and their families to hospitals

where the method is being followed as close to the letter, as possible. Yes, I

agree that Erie and Philly are fabulous surgery centers and its great to know

that Erie is NOT closing!!! Great news!!!

I share this information with parents so our children with rapidly progressing

curves receive the most effective series of casts possible and that less

children miss their window of opportunity to grow straight, gently &

permanently.

The reason I have not placed the docs names on the list is because I was told

directly that they are not applying over the shoulder jackets . Its my opinion

that that there are many, many infants/children with high thoracic scoliosis and

EDF casting should be specific and individual to the child, for the treatment to

be effective.

If you have more info on this, please share with us. As I said, things may have

changed and if they have, we should all know.

Thanks.

HRH

>

> Patty,

> Yes, there is a list of the Mehta trained Dr.'s here on the board but the Dr.

at Erie, that rotates from Philly, is absolutely Mehta trained and he is not

listed on the list. He is our Dr. and we have spoken more times than I can count

about this and he was personally trained sometime ago by someone who was

directly trained by Dr. Mehta herself. (I even asked him why he thought he

wouldn't be listed on the ISOP website and he didn't know)

>

> Just thought I'd share.

> If you'd like the name of the Dr. I'd be happy to give that to you if you send

me a direct email.

>

> Sherry

> Mom to Logan, age 5

> in 3rd cast from Erie, Shriner's

>