Re: New to Group, looking for advice and info.

[Guest guest]

Hi ,My son, , has been going to ish Rite for a while now.I would more than happy to talk to you in detail about ish Rite if you would like.Feel free to email me privately or maybe we can talk on the phone if that is easy for you.Are you in Texas? Here is my number if you would like to talk. TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.Subject: New to Group, looking for advice and

info.To: infantile_scoliosis Date: Wednesday, November 26, 2008, 1:37 PM

Hi everyone! My name is , and my 3 month old daughter was just

diagnosed on Monday with scoliosis. We are not sure what type, what

the angle of her curve is, or anything else specific right now. My

pediatrician was a bit dumbfounded to see the "s" shape on the x-ray.

She said she'd never seen scoliosis in a baby this young.

At any rate, we are being referred to the ish Rite Children's

Hospital in Dallas, and will hopefully be seeing a specialist in a few

weeks. I noticed one other mom whose son is being treated there...I

just wanted to know what we can expect from this first visit?

From looking at her x-ray and comparing it to what I've seen on the

internet, I would guess her larger curve is at least 30 degrees, but

of course that would just be a shot in the dark....

It seems from what I've read that there are several different

treatment options out there, but I haven't seen much on treating

babies as young as mine. I am intrigued by the treatment pioneered by

Dr. Mehta, and the more I read about it, the more encouraged I am. I

would love it if any of you would be able to share your experiences

with me, since my family and I are still a bit shell-shocked by this

news. Rowan (my baby) is my 4th child, and this is the first time

we've ever had any type of serious situation. She has no other health

problems, although at about 7 weeks she was sent for an ultrasound of

her lumbar spine due to a sacral dimple...the results of that

ultrasound were totally normal, they told me she was not tethered at

that time.

Are there any specific things I should keep in mind while talking to

the specialist? From what I've read, it sounds like early treatment

in small infants is the best chance at complete correction.. .I have

downloaded and begun reading Dr. Mehta's article and I plan to start

there.

I thank in advance anyone who made it through this long post. It

still feels a little like this is all a bad dream or something.

Thanks,

[Guest guest]

Hi ,Welcome. Baby Rowan has a great mommy to do lots of research. Today, there are several treatment options for infants with scoliosis, as opposed to years ago when the "only" option was fusion.I read that you said they did an ultrasound on her lower spine to rule out a tethered spinal cord. An ultrasound will only show a specific type of tethered cord. Ultrasound is NOT the best diagnostic tool for ruling out tethered cord. It isn't an emergency, but she should have a FULL SPINE MRI when she's about 6 months old. It will be very important to know more details as you get them. If she has a sacral dimple, I'd dare bet she has a bone malformation in her spine meaning she has congenital scoliosis rather than idiopathic scoliosis. The more details about the formation of her spine you can

learn, the better off you will be in treating her scoliosis.ish Rite is a great facility. They will help you understand what you need to know and will give you a long term "plan" for keeping her spine as healthy as possible. I'm not surprised your ped has never seen scoliosis in an infant like Miss Rowan. It isn't common, but when it's your child, the rarity and statistics go out the window. My Braydon has congenital scoliosis. His congenital (thoracic) curve measured 45 degree at birth, and 75 degrees by age 9 months. Very progressive. I'm glad to hear Baby Rowan does not have any other medical issues. However, if she does have congenital scoliosis (especially in the lower thoracic/lumbar/sacral spine) she needs AT LEAST an ultrasound of her kidneys and a checkup with a cardiologist to make sure there isn't anything hidden. About the sacral dimple - can you see the

bottom of the dimple? Is it completely closed? If so, that's a good sign, but you still can't totally rule out a tethered cord without an MRI. My Braydon has/had a tethered cord, but no sacral dimple. My daughter and hubby both have sacral dimples, but no tethered cord. Their's is a hereditary trait.Best wishes. I look forward to hearing how your appt with ish Rite goes.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes

(repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

Hi ,Welcome. Baby Rowan has a great mommy to do lots of research. Today, there are several treatment options for infants with scoliosis, as opposed to years ago when the "only" option was fusion.I read that you said they did an ultrasound on her lower spine to rule out a tethered spinal cord. An ultrasound will only show a specific type of tethered cord. Ultrasound is NOT the best diagnostic tool for ruling out tethered cord. It isn't an emergency, but she should have a FULL SPINE MRI when she's about 6 months old. It will be very important to know more details as you get them. If she has a sacral dimple, I'd dare bet she has a bone malformation in her spine meaning she has congenital scoliosis rather than idiopathic scoliosis. The more details about the formation of her spine you can

learn, the better off you will be in treating her scoliosis.ish Rite is a great facility. They will help you understand what you need to know and will give you a long term "plan" for keeping her spine as healthy as possible. I'm not surprised your ped has never seen scoliosis in an infant like Miss Rowan. It isn't common, but when it's your child, the rarity and statistics go out the window. My Braydon has congenital scoliosis. His congenital (thoracic) curve measured 45 degree at birth, and 75 degrees by age 9 months. Very progressive. I'm glad to hear Baby Rowan does not have any other medical issues. However, if she does have congenital scoliosis (especially in the lower thoracic/lumbar/sacral spine) she needs AT LEAST an ultrasound of her kidneys and a checkup with a cardiologist to make sure there isn't anything hidden. About the sacral dimple - can you see the

bottom of the dimple? Is it completely closed? If so, that's a good sign, but you still can't totally rule out a tethered cord without an MRI. My Braydon has/had a tethered cord, but no sacral dimple. My daughter and hubby both have sacral dimples, but no tethered cord. Their's is a hereditary trait.Best wishes. I look forward to hearing how your appt with ish Rite goes.CarmellMom to Kara, idiopathic scoliosis and hypothyroidism, Blake 18, GERD, and Braydon 13, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot with 8 toes

(repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA, etc. http://carmellb-ivil.tripod.com/myfamily/ Congenital scoliosis support grouphttp://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

[Guest guest]

You've already got some good answers..but Welcome to the CAST group!

My son, Evan was diagnosed at 3months old as well.

You can read his story at: www.infantilescoliosis.org

Best of luck to you and your family and if I can answer ANY questions for you, I"d be more than happy to chat.

and Evan

Subject: New to Group, looking for advice and info.To: infantile_scoliosis Date: Wednesday, November 26, 2008, 2:37 PM

Hi everyone! My name is , and my 3 month old daughter was justdiagnosed on Monday with scoliosis. We are not sure what type, whatthe angle of her curve is, or anything else specific right now. Mypediatrician was a bit dumbfounded to see the "s" shape on the x-ray.She said she'd never seen scoliosis in a baby this young.At any rate, we are being referred to the ish Rite Children'sHospital in Dallas, and will hopefully be seeing a specialist in a fewweeks. I noticed one other mom whose son is being treated there...Ijust wanted to know what we can expect from this first visit?From looking at her x-ray and comparing it to what I've seen on theinternet, I would guess her larger curve is at least 30 degrees, butof course that would just be a shot in the dark....It seems from what I've read that there are several differenttreatment options out there, but I haven't seen much on

treatingbabies as young as mine. I am intrigued by the treatment pioneered byDr. Mehta, and the more I read about it, the more encouraged I am. Iwould love it if any of you would be able to share your experienceswith me, since my family and I are still a bit shell-shocked by thisnews. Rowan (my baby) is my 4th child, and this is the first timewe've ever had any type of serious situation. She has no other healthproblems, although at about 7 weeks she was sent for an ultrasound ofher lumbar spine due to a sacral dimple...the results of thatultrasound were totally normal, they told me she was not tethered atthat time.Are there any specific things I should keep in mind while talking tothe specialist? From what I've read, it sounds like early treatmentin small infants is the best chance at complete correction.. .I havedownloaded and begun reading Dr. Mehta's article and I plan to startthere.

I thank in advance anyone who made it through this long post. Itstill feels a little like this is all a bad dream or something.Thanks,

[Guest guest]

You've already got some good answers..but Welcome to the CAST group!

My son, Evan was diagnosed at 3months old as well.

You can read his story at: www.infantilescoliosis.org

Best of luck to you and your family and if I can answer ANY questions for you, I"d be more than happy to chat.

and Evan

Subject: New to Group, looking for advice and info.To: infantile_scoliosis Date: Wednesday, November 26, 2008, 2:37 PM

Hi everyone! My name is , and my 3 month old daughter was justdiagnosed on Monday with scoliosis. We are not sure what type, whatthe angle of her curve is, or anything else specific right now. Mypediatrician was a bit dumbfounded to see the "s" shape on the x-ray.She said she'd never seen scoliosis in a baby this young.At any rate, we are being referred to the ish Rite Children'sHospital in Dallas, and will hopefully be seeing a specialist in a fewweeks. I noticed one other mom whose son is being treated there...Ijust wanted to know what we can expect from this first visit?From looking at her x-ray and comparing it to what I've seen on theinternet, I would guess her larger curve is at least 30 degrees, butof course that would just be a shot in the dark....It seems from what I've read that there are several differenttreatment options out there, but I haven't seen much on

treatingbabies as young as mine. I am intrigued by the treatment pioneered byDr. Mehta, and the more I read about it, the more encouraged I am. Iwould love it if any of you would be able to share your experienceswith me, since my family and I are still a bit shell-shocked by thisnews. Rowan (my baby) is my 4th child, and this is the first timewe've ever had any type of serious situation. She has no other healthproblems, although at about 7 weeks she was sent for an ultrasound ofher lumbar spine due to a sacral dimple...the results of thatultrasound were totally normal, they told me she was not tethered atthat time.Are there any specific things I should keep in mind while talking tothe specialist? From what I've read, it sounds like early treatmentin small infants is the best chance at complete correction.. .I havedownloaded and begun reading Dr. Mehta's article and I plan to startthere.

I thank in advance anyone who made it through this long post. Itstill feels a little like this is all a bad dream or something.Thanks,

[Guest guest]

Hello and happy Thanksgiving!ish Rite's fans here! WE love that place and its people! They saved my child's life in there and I will be forever grateful to God and them! So, if you need more information on that place, please let me know. Let me tell you that if you get accepted there, you will be glad you got there!Best wishes! Esther "Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me." (Psalm 23:4) To:

infantile_scoliosis Sent: Wednesday, November 26, 2008 1:43:54 PMSubject: Re: New to Group, looking for advice and info.

Hi ,My son, , has been going to ish Rite for a while now.I would more than happy to talk to you in detail about ish Rite if you would like.Feel free to email me privately or maybe we can talk on the phone if that is easy for you.Are you in Texas? Here is my number if you would like to talk. TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.From: mama2kalena_ isaac_adam <forsythia99@ hotmail.com>Subject: [infantile_scoliosi s] New to Group, looking for advice and

info.To: infantile_scoliosis @yahoogroups. comDate: Wednesday, November 26, 2008, 1:37 PM

Hi everyone! My name is , and my 3 month old daughter was just

diagnosed on Monday with scoliosis. We are not sure what type, what

the angle of her curve is, or anything else specific right now. My

pediatrician was a bit dumbfounded to see the "s" shape on the x-ray.

She said she'd never seen scoliosis in a baby this young.

At any rate, we are being referred to the ish Rite Children's

Hospital in Dallas, and will hopefully be seeing a specialist in a few

weeks. I noticed one other mom whose son is being treated there...I

just wanted to know what we can expect from this first visit?

From looking at her x-ray and comparing it to what I've seen on the

internet, I would guess her larger curve is at least 30 degrees, but

of course that would just be a shot in the dark....

It seems from what I've read that there are several different

treatment options out there, but I haven't seen much on treating

babies as young as mine. I am intrigued by the treatment pioneered by

Dr. Mehta, and the more I read about it, the more encouraged I am. I

would love it if any of you would be able to share your experiences

with me, since my family and I are still a bit shell-shocked by this

news. Rowan (my baby) is my 4th child, and this is the first time

we've ever had any type of serious situation. She has no other health

problems, although at about 7 weeks she was sent for an ultrasound of

her lumbar spine due to a sacral dimple...the results of that

ultrasound were totally normal, they told me she was not tethered at

that time.

Are there any specific things I should keep in mind while talking to

the specialist? From what I've read, it sounds like early treatment

in small infants is the best chance at complete correction.. .I have

downloaded and begun reading Dr. Mehta's article and I plan to start

there.

I thank in advance anyone who made it through this long post. It

still feels a little like this is all a bad dream or something.

Thanks,

[Guest guest]

Hello and happy Thanksgiving!ish Rite's fans here! WE love that place and its people! They saved my child's life in there and I will be forever grateful to God and them! So, if you need more information on that place, please let me know. Let me tell you that if you get accepted there, you will be glad you got there!Best wishes! Esther "Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me." (Psalm 23:4) To:

infantile_scoliosis Sent: Wednesday, November 26, 2008 1:43:54 PMSubject: Re: New to Group, looking for advice and info.

Hi ,My son, , has been going to ish Rite for a while now.I would more than happy to talk to you in detail about ish Rite if you would like.Feel free to email me privately or maybe we can talk on the phone if that is easy for you.Are you in Texas? Here is my number if you would like to talk. TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.From: mama2kalena_ isaac_adam <forsythia99@ hotmail.com>Subject: [infantile_scoliosi s] New to Group, looking for advice and

info.To: infantile_scoliosis @yahoogroups. comDate: Wednesday, November 26, 2008, 1:37 PM

Hi everyone! My name is , and my 3 month old daughter was just

diagnosed on Monday with scoliosis. We are not sure what type, what

the angle of her curve is, or anything else specific right now. My

pediatrician was a bit dumbfounded to see the "s" shape on the x-ray.

She said she'd never seen scoliosis in a baby this young.

At any rate, we are being referred to the ish Rite Children's

Hospital in Dallas, and will hopefully be seeing a specialist in a few

weeks. I noticed one other mom whose son is being treated there...I

just wanted to know what we can expect from this first visit?

From looking at her x-ray and comparing it to what I've seen on the

internet, I would guess her larger curve is at least 30 degrees, but

of course that would just be a shot in the dark....

It seems from what I've read that there are several different

treatment options out there, but I haven't seen much on treating

babies as young as mine. I am intrigued by the treatment pioneered by

Dr. Mehta, and the more I read about it, the more encouraged I am. I

would love it if any of you would be able to share your experiences

with me, since my family and I are still a bit shell-shocked by this

news. Rowan (my baby) is my 4th child, and this is the first time

we've ever had any type of serious situation. She has no other health

problems, although at about 7 weeks she was sent for an ultrasound of

her lumbar spine due to a sacral dimple...the results of that

ultrasound were totally normal, they told me she was not tethered at

that time.

Are there any specific things I should keep in mind while talking to

the specialist? From what I've read, it sounds like early treatment

in small infants is the best chance at complete correction.. .I have

downloaded and begun reading Dr. Mehta's article and I plan to start

there.

I thank in advance anyone who made it through this long post. It

still feels a little like this is all a bad dream or something.

Thanks,

[Guest guest]

Hi ,

Welcome to our group... I'm sorry you are going through this... I believe that Tasha has experince with ish Rite and has had some wonderful experiences there.... I'm sure she will chime in. The great news is that you have caught this so early... I have heard of babies being casted as early as 4 months. Have you had an MRI yet? Feel free to contact me anytime. Hugs, Steph

Subject: New to Group, looking for advice and info.To: infantile_scoliosis Date: Wednesday, November 26, 2008, 7:37 PM

Hi everyone! My name is , and my 3 month old daughter was justdiagnosed on Monday with scoliosis. We are not sure what type, whatthe angle of her curve is, or anything else specific right now. Mypediatrician was a bit dumbfounded to see the "s" shape on the x-ray.She said she'd never seen scoliosis in a baby this young.At any rate, we are being referred to the ish Rite Children'sHospital in Dallas, and will hopefully be seeing a specialist in a fewweeks. I noticed one other mom whose son is being treated there...Ijust wanted to know what we can expect from this first visit?From looking at her x-ray and comparing it to what I've seen on theinternet, I would guess her larger curve is at least 30 degrees, butof course that would just be a shot in the dark....It seems from what I've read that there are several differenttreatment options out there, but I haven't seen much on

treatingbabies as young as mine. I am intrigued by the treatment pioneered byDr. Mehta, and the more I read about it, the more encouraged I am. Iwould love it if any of you would be able to share your experienceswith me, since my family and I are still a bit shell-shocked by thisnews. Rowan (my baby) is my 4th child, and this is the first timewe've ever had any type of serious situation. She has no other healthproblems, although at about 7 weeks she was sent for an ultrasound ofher lumbar spine due to a sacral dimple...the results of thatultrasound were totally normal, they told me she was not tethered atthat time.Are there any specific things I should keep in mind while talking tothe specialist? From what I've read, it sounds like early treatmentin small infants is the best chance at complete correction.. .I havedownloaded and begun reading Dr. Mehta's article and I plan to startthere.

I thank in advance anyone who made it through this long post. Itstill feels a little like this is all a bad dream or something.Thanks,

[Guest guest]

I just want to say thank you to all of you who have responded so

quickly and with such compassion. I feel like I am finally getting a

handle on things, and the more I talk to people, the more encouraged I

am getting.

We have not had an MRI yet, although I suspect that will be one of the

first things we schedule at our first appointment. I am anxious to

see the specialist and get a plan of action in place.

And thank you so much, Tasha, for speaking with me earlier. I can't

tell you how much it meant to me. I will be sure to keep ya'll

updated as we find out more about sweet Rowan's progress.

Thanks,

>

>

> Subject: New to Group, looking for advice and

info.

> To: infantile_scoliosis

> Date: Wednesday, November 26, 2008, 7:37 PM

>

>

>

>

>

>

> Hi everyone! My name is , and my 3 month old daughter was just

> diagnosed on Monday with scoliosis. We are not sure what type, what

> the angle of her curve is, or anything else specific right now. My

> pediatrician was a bit dumbfounded to see the " s " shape on the x-ray.

> She said she'd never seen scoliosis in a baby this young.

>

> At any rate, we are being referred to the ish Rite Children's

> Hospital in Dallas, and will hopefully be seeing a specialist in a few

> weeks. I noticed one other mom whose son is being treated there...I

> just wanted to know what we can expect from this first visit?

>

> From looking at her x-ray and comparing it to what I've seen on the

> internet, I would guess her larger curve is at least 30 degrees, but

> of course that would just be a shot in the dark....

>

> It seems from what I've read that there are several different

> treatment options out there, but I haven't seen much on treating

> babies as young as mine. I am intrigued by the treatment pioneered by

> Dr. Mehta, and the more I read about it, the more encouraged I am. I

> would love it if any of you would be able to share your experiences

> with me, since my family and I are still a bit shell-shocked by this

> news. Rowan (my baby) is my 4th child, and this is the first time

> we've ever had any type of serious situation. She has no other health

> problems, although at about 7 weeks she was sent for an ultrasound of

> her lumbar spine due to a sacral dimple...the results of that

> ultrasound were totally normal, they told me she was not tethered at

> that time.

>

> Are there any specific things I should keep in mind while talking to

> the specialist? From what I've read, it sounds like early treatment

> in small infants is the best chance at complete correction.. .I have

> downloaded and begun reading Dr. Mehta's article and I plan to start

> there.

>

> I thank in advance anyone who made it through this long post. It

> still feels a little like this is all a bad dream or something.

>

> Thanks,

>

>