Re: Could Really Use Some Feedback.....

[Guest guest]

Hi,

I would recommend the casting. A 30* RVAD is high and Emma is already 19 mo old. You don't want to miss her "window." Have you read the articles "Growth as a Corrective Force" and "Derotational Casting" in the files section? The studies further explain the RVAD and the need to start treatment prior to 2 years old.

I promise you that the Casts really are not that much different from a brace. As a matter of fact - we often feel cast life was easier! The casts don't come off so you never have to wonder about putting it on properly and the kids can't fight/cry for you to take it off.

I know this is tough, but you will get through this and we're all here to help you along the way : ) Ask any and all questions.~Noah 4 1/2 years old9 months of casting in SLC; Currently on 2 years of bracing at 6* in braceAnd Mariella 15 months old - resolved Infantile Scoliosis

infantile scoliosis treatment From: jilian13@...Date: Fri, 16 Apr 2010 18:02:36 +0000Subject: Could Really Use Some Feedback.....

Hello Everyone - Have not posted in a bit. My family and I are still trying to wrap our brains around everything. Here's the journey in a nutshell - any and all feedback would be greatly appreciated:3/17 Ortho in Buffalo diagnosed 19mo old Emma w/ Infantile Scoli w/ a 50 degreee curve (standing x-ray) Sched MRI and rec follow up 5/18. I believe this is the "wait and see" approach. 4/1 Got in for MRI (thank you cancellation list!)Emma had a bit of a reaction to the anethesia - projectile vomiting in car all the way home :0( Poor Emma Beans.4/7 Ortho in Rochester reviewed MRI - all clear - and confirmed diagnoses BUT adv Emma had a 30 degree RVAD and 20 degree COBB (supine x-ray). He recommended immediate casting. He could NOT adv if the curve is progressive or if the casting would be a success. I left feeling happier with the numbers - I think - but slightly put off by the doc. 4/15 App't with new ped - as last one not only missed but tried to disuade us from following up on our scoli concerns. New ped is ok but when I attempted to open us a dialogue about the scoli, he wanted no part of it advs'g to follow up with ortho. Kinda put off by this too. Am I becomming way too cynical about any and all docs? You'd think at the very least if this is the 1st time he's ever encountered this, he's at least want to do some research and be willing to discuss.Today - What do I do? Shocked at the discrepancies between the 2 orthos diagnoses. The doc who adv a more serious number adv "wait and see" while the doc who gave us the lesser number adv "casting NOW". Are there any alternatives? Emma's dad wants a second opinion and is not sold on the casting. It seems opinions range from complete inexperience to casting supporters with no in-between. Is there an in-between? How serious is Emma's condition? Am I an awful mom because I have not scheduled the casting yet? If I click my heels together 3 times and wish really hard - can I make this go away???

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[Guest guest]

I'm so sorry to hear about all the ups and downs you and your family have encountered. Glad the MRI came back clean, that's a huge relief I'm sure. As for the differences in numbers, were both xrays taken the exact same way? If one was standing and one was laying down, you would get huge discrepencies in numbers. A standing xray is more realistic since the spine has your body's normal weight on it. I definitely would not wait to cast. This is a serious condition and if Emma is already at a 30 to 50 degree curve and is 19 months old, I wouldn't take the chance of the "wait and see" method bc/you'll loose valuable time. The key to casting is to do so before the child reaches age 2 bc/this is when their little bodies do the most growing. It's during this time that their spines are still flexible and easily

manaeuverable. Once they reach 2 the growth spurts slow down tremendously. Casting gently pushes the spine back into a "normal" position while teaching the brain during the growth spurts to have the spine grow straight. If her # is the higher of the 2 casting needs to be done asap. There have been far too many parents that have done the "wait and see" not knowing any differently that wish they hadn't, hopefully some of them will chime in. Casting works and our little ones adjust fairly well and quickly. They learn how to bounce back and soon know life no differently. It's tougher on us parents, but we all get through it. Casting works if done correctly and if done in the right time frame. If done after age 2, it can still work, just make take a little longer to get the results the dr is aiming for which is usually a curve under 10 degrees. My baby girl was diagnosed at 8 months, first casted at

9 1/2 months, had 2 casts for a period of a little over 5 months, went into a brace full time for 4 months, then nightime only for 2 months and is now brace free and awaiting our appt in May to see how her little spine is doing. She's currently 22 months old and although her journey has been a rather quick one I credit it to us catching it early and getting her the treatment she needed.

As for the peds, you have to find one you're comfortable with and one that you can go to to talk about anything and everything. Even though his specialty isn't IS, he should still be willing to listen, learn and try to help. Your child will most likely come down with colds and illnesses while in cast and you have to have a ped on board who's willing to deal with the differences in diagnosing a sick child in a cast since they can't get to their lungs and hear them very well. My daughter's ped missed her diagnosis, but the whole practice has been great in trying to learn all they could, read up on it and help us on the journey. My daughter had a few ear infections and colds and they were great dealing with it all.

If you want a second opinion go for it, but I think at this point casting is the way to go. You need to find a Mehta trained dr and have her casted asap. Feel free to ask anything else you need to, we're all here to help.

(mother to - 22 months old - 2 casts - 1 brace - treated at SLC)

From: GiGi <jilian13@...>Subject: Could Really Use Some Feedback.....infantile scoliosis treatment Date: Friday, April 16, 2010, 2:02 PM

Hello Everyone - Have not posted in a bit. My family and I are still trying to wrap our brains around everything. Here's the journey in a nutshell - any and all feedback would be greatly appreciated:3/17 Ortho in Buffalo diagnosed 19mo old Emma w/ Infantile Scoli w/ a 50 degreee curve (standing x-ray) Sched MRI and rec follow up 5/18. I believe this is the "wait and see" approach. 4/1 Got in for MRI (thank you cancellation list!)Emma had a bit of a reaction to the anethesia - projectile vomiting in car all the way home :0( Poor Emma Beans.4/7 Ortho in Rochester reviewed MRI - all clear - and confirmed diagnoses BUT adv Emma had a 30 degree RVAD and 20 degree COBB (supine x-ray). He recommended immediate casting. He could NOT adv if the curve is progressive or if the casting would be a success. I left feeling happier with the numbers - I think - but slightly put off by the doc. 4/15 App't with new ped - as last

one not only missed but tried to disuade us from following up on our scoli concerns. New ped is ok but when I attempted to open us a dialogue about the scoli, he wanted no part of it advs'g to follow up with ortho. Kinda put off by this too. Am I becomming way too cynical about any and all docs? You'd think at the very least if this is the 1st time he's ever encountered this, he's at least want to do some research and be willing to discuss.Today - What do I do? Shocked at the discrepancies between the 2 orthos diagnoses. The doc who adv a more serious number adv "wait and see" while the doc who gave us the lesser number adv "casting NOW". Are there any alternatives? Emma's dad wants a second opinion and is not sold on the casting. It seems opinions range from complete inexperience to casting supporters with no in-between. Is there an in-between? How serious is Emma's condition? Am I an awful mom because I have not scheduled the casting yet? If I

click my heels together 3 times and wish really hard - can I make this go away???

[Guest guest]

We also go to Rochester, we see Dr. S. I am not sure who you see. As other

people have mentioned that the differences between the two measurements could be

the result of one being taken standing and one being taken laying down.

With an RVAD of 30 the literature would suggest that there is a 90% chance that

the scoliosis will progress.

In addition, at 19 months old your daughter is at the later part of the window

in which they try to get kids started in treatment, that said many people start

later. I will also say that bracing has been shown to be ineffective in holding

the curve at this age and Mehta casting almost always holds the curve and often

help the curve to get better. The great thing about casting is that you go and

do it in 2 month intervals. I know that your husband is skeptical and it seems

a bit scary but when we were in your shoes we decided to give it a try and see

how it went. You could go get your daughter casted and see what happens. At

the end of the 2 months you will have a better idea of how you feel about

casting. The great thing is that casting will most likely hold your curve and

will not preclude you from other treatment options is it is not for your family.

I have to say that I would do it all over again and I would keep casting until

he is 12 if I had to in order to hold his curve! He adjusted beautifully, he

loves his cast, and we have gotten amazing results. But again even with no

improvement I would continue to cast.

Jenn

Mommy to Cole, 2 years old, 5th cast from Rochester, 13 degrees out of cast down

from 47

>

> Hello Everyone -

>

> Have not posted in a bit. My family and I are still trying to wrap our brains

around everything. Here's the journey in a nutshell - any and all feedback would

be greatly appreciated:

>

> 3/17 Ortho in Buffalo diagnosed 19mo old Emma w/ Infantile Scoli w/ a 50

degreee curve (standing x-ray) Sched MRI and rec follow up 5/18. I believe this

is the " wait and see " approach.

>

> 4/1 Got in for MRI (thank you cancellation list!)Emma had a bit of a reaction

to the anethesia - projectile vomiting in car all the way home :0( Poor Emma

Beans.

>

> 4/7 Ortho in Rochester reviewed MRI - all clear - and confirmed diagnoses BUT

adv Emma had a 30 degree RVAD and 20 degree COBB (supine x-ray). He recommended

immediate casting. He could NOT adv if the curve is progressive or if the

casting would be a success. I left feeling happier with the numbers - I think -

but slightly put off by the doc.

>

> 4/15 App't with new ped - as last one not only missed but tried to disuade us

from following up on our scoli concerns. New ped is ok but when I attempted to

open us a dialogue about the scoli, he wanted no part of it advs'g to follow up

with ortho. Kinda put off by this too. Am I becomming way too cynical about any

and all docs? You'd think at the very least if this is the 1st time he's ever

encountered this, he's at least want to do some research and be willing to

discuss.

>

> Today - What do I do? Shocked at the discrepancies between the 2 orthos

diagnoses. The doc who adv a more serious number adv " wait and see " while the

doc who gave us the lesser number adv " casting NOW " . Are there any alternatives?

Emma's dad wants a second opinion and is not sold on the casting. It seems

opinions range from complete inexperience to casting supporters with no

in-between. Is there an in-between? How serious is Emma's condition? Am I an

awful mom because I have not scheduled the casting yet? If I click my heels

together 3 times and wish really hard - can I make this go away???

>

[Guest guest]

I agree that a standing X-ray is more realistic and that over age 2 years, you lose much of the rapid growth period, as the human spine grows 50 percent before age 2. Casting can and has worked for older children, but it can sometimes take a lot longer, though, a much longer road...for both the parents and child in progressive cases. Sometimes it is begun too late to avoid surgery, and the more you learn about that, the longer you hope to avoid it. From our personal experience, I felt getting in at 19 months was late- although we started Mehta casting at a 61 degree curve, I am very grateful we began this treatment before age 2. You have to go with your gut and you are not a terrible Mom at all, you have been researching and doing everything you can! My gut/God/maternal

instinct said "The door is open, walk through it."Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: Sullivan <elizsullivan6@...>infantile scoliosis treatment Sent: Fri, April 16, 2010 11:39:56 AMSubject: Re: Could Really Use Some Feedback.....

I'm so sorry to hear about all the ups and downs you and your family have encountered. Glad the MRI came back clean, that's a huge relief I'm sure. As for the differences in numbers, were both xrays taken the exact same way? If one was standing and one was laying down, you would get huge discrepencies in numbers. A standing xray is more realistic since the spine has your body's normal weight on it. I definitely would not wait to cast. This is a serious condition and if Emma is already at a 30 to 50 degree curve and is 19 months old, I wouldn't take the chance of the "wait and see" method bc/you'll loose valuable time. The key to casting

is to do so before the child reaches age 2 bc/this is when their little bodies do the most growing. It's during this time that their spines are still flexible and easily

manaeuverable. Once they reach 2 the growth spurts slow down tremendously. Casting gently pushes the spine back into a "normal" position while teaching the brain during the growth spurts to have the spine grow straight. If her # is the higher of the 2 casting needs to be done asap. There have been far too many parents that have done the "wait and see" not knowing any differently that wish they hadn't, hopefully some of them will chime in. Casting works and our little ones adjust fairly well and quickly. They learn how to bounce back and soon know life no differently. It's tougher on us parents, but we all get through it. Casting works if done correctly and if done in the right time frame. If done after age 2, it can still work, just make take a little longer to get the results the dr is aiming for which is usually a curve under 10 degrees. My baby girl was diagnosed at 8 months, first casted at

9 1/2 months, had 2 casts for a period of a little over 5 months, went into a brace full time for 4 months, then nightime only for 2 months and is now brace free and awaiting our appt in May to see how her little spine is doing. She's currently 22 months old and although her journey has been a rather quick one I credit it to us catching it early and getting her the treatment she needed.

As for the peds, you have to find one you're comfortable with and one that you can go to to talk about anything and everything. Even though his specialty isn't IS, he should still be willing to listen, learn and try to help. Your child will most likely come down with colds and illnesses while in cast and you have to have a ped on board who's willing to deal with the differences in diagnosing a sick child in a cast since they can't get to their lungs and hear them very well. My daughter's ped missed her diagnosis, but the whole practice has been great in trying to learn all they could, read up on it and help us on the journey. My daughter had a few ear infections and colds and they were great dealing with it all.

If you want a second opinion go for it, but I think at this point casting is the way to go. You need to find a Mehta trained dr and have her casted asap. Feel free to ask anything else you need to, we're all here to help.

(mother to - 22 months old - 2 casts - 1 brace - treated at SLC)

From: GiGi <jilian13 (DOT) com>Subject: [infantile_scoliosi s] Could Really Use Some Feedback.... .infantile scoliosis treatment @groups. comDate: Friday, April 16, 2010, 2:02 PM

Hello Everyone - Have not posted in a bit. My family and I are still trying to wrap our brains around everything. Here's the journey in a nutshell - any and all feedback would be greatly appreciated:3/17 Ortho in Buffalo diagnosed 19mo old Emma w/ Infantile Scoli w/ a 50 degreee curve (standing x-ray) Sched MRI and rec follow up 5/18. I believe this is the "wait and see" approach. 4/1 Got in for MRI (thank you cancellation list!)Emma had a bit of a reaction to the anethesia - projectile vomiting in car all the way home :0( Poor Emma Beans.4/7 Ortho in Rochester reviewed MRI - all clear - and confirmed diagnoses BUT adv Emma had a 30 degree RVAD and 20 degree COBB (supine x-ray). He recommended immediate casting. He could NOT adv if the curve is progressive or if the casting would be a success. I left feeling happier with the numbers - I think - but slightly put off by the doc. 4/15 App't with new ped - as last

one not only missed but tried to disuade us from following up on our scoli concerns. New ped is ok but when I attempted to open us a dialogue about the scoli, he wanted no part of it advs'g to follow up with ortho. Kinda put off by this too. Am I becomming way too cynical about any and all docs? You'd think at the very least if this is the 1st time he's ever encountered this, he's at least want to do some research and be willing to discuss.Today - What do I do? Shocked at the discrepancies between the 2 orthos diagnoses. The doc who adv a more serious number adv "wait and see" while the doc who gave us the lesser number adv "casting NOW". Are there any alternatives? Emma's dad wants a second opinion and is not sold on the casting. It seems opinions range from complete inexperience to casting supporters with no in-between. Is there an in-between? How serious is Emma's condition? Am I an awful mom because I have not scheduled the casting yet? If I

click my heels together 3 times and wish really hard - can I make this go away???

[Guest guest]

Hi Gigi,

We had a very similar situation happen to us and we currently go to Rochester. If you want to chat feel free to call me or e-mail me with your number and I will call you. Noelle was firt casted in Rochester at 18 months, very similar to your Emma.....- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: GiGi <jilian13@...>Subject: Could Really Use Some Feedback.....infantile scoliosis treatment Date: Friday, April 16, 2010, 6:02 PM

Hello Everyone - Have not posted in a bit. My family and I are still trying to wrap our brains around everything. Here's the journey in a nutshell - any and all feedback would be greatly appreciated:3/17 Ortho in Buffalo diagnosed 19mo old Emma w/ Infantile Scoli w/ a 50 degreee curve (standing x-ray) Sched MRI and rec follow up 5/18. I believe this is the "wait and see" approach. 4/1 Got in for MRI (thank you cancellation list!)Emma had a bit of a reaction to the anethesia - projectile vomiting in car all the way home :0( Poor Emma Beans.4/7 Ortho in Rochester reviewed MRI - all clear - and confirmed diagnoses BUT adv Emma had a 30 degree RVAD and 20 degree COBB (supine x-ray). He recommended immediate casting. He could NOT adv if the curve is progressive or if the casting would be a success. I left feeling happier with the numbers - I think - but slightly put off by the doc. 4/15 App't with new ped - as last

one not only missed but tried to disuade us from following up on our scoli concerns. New ped is ok but when I attempted to open us a dialogue about the scoli, he wanted no part of it advs'g to follow up with ortho. Kinda put off by this too. Am I becomming way too cynical about any and all docs? You'd think at the very least if this is the 1st time he's ever encountered this, he's at least want to do some research and be willing to discuss.Today - What do I do? Shocked at the discrepancies between the 2 orthos diagnoses. The doc who adv a more serious number adv "wait and see" while the doc who gave us the lesser number adv "casting NOW". Are there any alternatives? Emma's dad wants a second opinion and is not sold on the casting. It seems opinions range from complete inexperience to casting supporters with no in-between. Is there an in-between? How serious is Emma's condition? Am I an awful mom because I have not scheduled the casting yet? If I

click my heels together 3 times and wish really hard - can I make this go away???

[Guest guest]

Gigi, we didn't get Nora in a cast until she was 2 and a half years old and got great results at first. She gained 3" in height the first cast and went down over 25 degrees! As she has gotten older we've gotten less progress becuase she's less flexible. I would advise to get casted as quickly as possible. If it doesn't "cure" her it will atleast hold her until they can take other measures.

She was over 70 degrees before her first cast and she is under 15 degrees in her current cast. She has had 2 breaks, over the summer and during Christmas. During the summer she wore a brace. Over Christmas break sh We've now been told by her dr that casting is no longer a "cure" for Nora, it is holding her until she's 7 to 8 years old when they will either put in growing rods or a VEPTR. When she's 10 or 11 years old he will start fusing.

Although it has not cured her I do Not see it in any way as a waste of time or effort! If I could redo things I wouldn't change my decision to cast only to have started casting earlier! If you would like to email me personally or call, feel free to do so! 336-736-8565

Tonya Perkins

Asheboro,NC

mother of ,11 &

Nora,4 scoliosis, acid reflux

8th cast, Greenville Shriners,SC

From: Kauffunger <slguerra710@...>infantile scoliosis treatment Sent: Sat, April 17, 2010 6:03:02 PMSubject: Re: Could Really Use Some Feedback.....

Hi Gigi,

We had a very similar situation happen to us and we currently go to Rochester. If you want to chat feel free to call me or e-mail me with your number and I will call you. Noelle was firt casted in Rochester at 18 months, very similar to your Emma.....- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: GiGi <jilian13 (DOT) com>Subject: [infantile_scoliosi s] Could Really Use Some Feedback.... .infantile scoliosis treatment @groups. comDate: Friday, April 16, 2010, 6:02 PM

Hello Everyone - Have not posted in a bit. My family and I are still trying to wrap our brains around everything. Here's the journey in a nutshell - any and all feedback would be greatly appreciated:3/17 Ortho in Buffalo diagnosed 19mo old Emma w/ Infantile Scoli w/ a 50 degreee curve (standing x-ray) Sched MRI and rec follow up 5/18. I believe this is the "wait and see" approach. 4/1 Got in for MRI (thank you cancellation list!)Emma had a bit of a reaction to the anethesia - projectile vomiting in car all the way home :0( Poor Emma Beans.4/7 Ortho in Rochester reviewed MRI - all clear - and confirmed diagnoses BUT adv Emma had a 30 degree RVAD and 20 degree COBB (supine x-ray). He recommended immediate casting. He could NOT adv if the curve is progressive or if the casting would be a success. I left feeling happier with the numbers - I think - but slightly put off by the doc. 4/15 App't with new ped - as last

one not only missed but tried to disuade us from following up on our scoli concerns. New ped is ok but when I attempted to open us a dialogue about the scoli, he wanted no part of it advs'g to follow up with ortho. Kinda put off by this too. Am I becomming way too cynical about any and all docs? You'd think at the very least if this is the 1st time he's ever encountered this, he's at least want to do some research and be willing to discuss.Today - What do I do? Shocked at the discrepancies between the 2 orthos diagnoses. The doc who adv a more serious number adv "wait and see" while the doc who gave us the lesser number adv "casting NOW". Are there any alternatives? Emma's dad wants a second opinion and is not sold on the casting. It seems opinions range from complete inexperience to casting supporters with no in-between. Is there an in-between? How serious is Emma's condition? Am I an awful mom because I have not scheduled the casting yet? If I

click my heels together 3 times and wish really hard - can I make this go away???