Re: New to group--8-month-old recently diagnosed with scoliosis

[Guest guest]

, if the vertebrae are fused then most likely it would be congenital infantile scoliosis. However, I wouldn't think they would want to do surgery at such a young age...that generally is a last resort esp. given his very young age (once they start fusing it stunts growth which is why they try to avoid doing that for as long as possible). A 30 degree curve is probably considered a moderate curve. My son is about 29 degrees too. You should know more after the MRI. One thing they will look for is a tethered spinal cord among other things. They won't be able to determine the best course of treatment until you get that done as they need to determine first if it is idiopathic or congenital.

If they are already talking about surgery, you should be getting another opinion. You will probably want to do that anyway. We live in VA, but take our son to the Shriner's hospital in Erie, PA...they specialize in infantile scoliosis and are much more knowledgeable than the ortho's that I have seen here. You definitely want to see a pediatric ortho that specializes in infantile scoliosis. I am not sure if your son would be a candidate for serial casting or not, but that is the treatment that we are considering for our son.

Good luck to you and your son.

Noelle (12-2-01)Ian (8-15-04)

New to group--8-month-old recently diagnosed with scoliosis

Hello, everyone.

My son was born on December 15, 2004, with a right clubfoot and a few other anomalies. Once he started sitting up on his own about a month and a half ago, I noticed that he always leaned to one side. He already has torticollis (tilts his head to the left) and I thought that maybe he was leaning his body to the right to kind of make up for it. Anyhow, during a follow-up for his clubfoot, I asked his orthopedist to take a look at his back and the way he sits and he immediately took an x-ray and it looked like 3 or 4 lower thoracic vertebrae may be fused. The curve was 30 degrees. Does that sound mild? Moderate? He had an MRI done last week and we are waiting for the results. (His doc is away until 9/6.) So, we are trying to figure out if he has congenital or infantile scoliosis. His doc said that if it is congenital then he will need surgery to fuse the other side of those 3-4 vertebrae. If it's infantile and they are not fused, then we will see if it is progressive and take another x-ray in 3 months. I've spent so much time researching his clubfoot and have joined a support group for that as well and now this scoliosis thing is all new to me.

Do any of you live or go to a doc in New York City or the surrounding area? We go to Dr. Feldman at NYU. He apparently is well-known for treating scoliosis as well as clubfoot. He is the chief pediatric orthopedist there. Does anyone see him? I look forward to reading all your posts and to posting my own messages whenever I have a question. I find that parents of children going through the same thing can be a lot more helpful than docs with medical degrees who threat those things.

Do any of your children have any syndrome that scoliosis is just a part of? We can't figure out if has some type of syndrome or what. His other anomalies are as follows: left ptosis (droopy eyelid), right club foot (corrected via Ponseti Method of serial casting and currently in foot abduction bar and corrective shoes nights only), contractures in 2-3 fingers on both hands (camptodactyly) which have improved with stretching, left torticollis, dimple above his butt (most peds who saw it say it's more of a little crease than a dimple, also there is no hairy patch or bump there), dimples in elbows and knees ( I thought it was just from chubbiness, but apparently can be a sign of arthrogryposis?), tightness in muscles all over. He doesn't really have any major developmental delays. He's not crawling yet, but he's trying, and he's pretty mobile with the rolling over and just pivoting on his buddha belly or on his back.

Sorry for all the questions! If any one has any words of advice or anything to say whatsoever, I am all ears!!!

Thanks in advance for everything!

Start your day with - make it your home page

[Guest guest]

Hi - Welcome!

gave you some great input.

My son, Braydon, was born with several structural

birth defects (i.e., congenital malformations of the

spine, rib anomalies, hip dysplasia, right clubfoot

with 8 toes, malformed kidneys, etc.). His scoliosis

is his biggest medical hurdle. Braydon is a VACTERL

Association baby. You can read about the related

birth defects with VACTERL patients here:

http://www.vaterconnection.org

VACTERL is like a dumping ground label for related

birth defects that do not have a genetic component (at

least not scientifically proven its genetic yet) and

there are no other syndromes or categories the patient

fits into.

Braydon's scoliosis was/is severe. At age 9 months

his congenital curve measured 75 degrees. At age 11

months he had fusion surgery to stop the progression

of the curve. At age 6yrs old he had VEPTR (Vertical

Expandable Prosthetic Titanium Rib) devices implanted

in his back to keep his spine stabilized and his chest

expanded to allow his lungs to function fully. Today

he is doing very well! If you saw him on the street,

you would never guess what his little body looks like

on the inside.

I have heard of Dr. Feldman. He is a great ortho for

teenage idiopathic scoliosis. I have not heard about

him from parents with infants who have scoliosis,

especially those who have multiple medical issues they

are dealing with (minor as they are) like . I

hope you would consider getting at least another

opinion from another PEDIATRIC orthopedist who

specialize in congenital scoliosis and has extensive

experience treating children like . In the NE

part of the country there are several who I would

trust my child's life to... Dr. Emans in Boston,

Drs. Betz and D' at Shriners of Philly, Dr.

Segal at Hersey PA, etc. If you need/want contact

information for any of these docs, let me know.

Fusion surgery should be a last resort. Braydon's

spine is fused from T5-L1 - 1/3 of his spine. His

spine is disproportionately shorter than his arms and

legs are long. There are so many advances in

scoliosis treatment, even congenital malformations,

that fusion should be considered only as a last

resort, especially if there are multiple

malformations. Fusion does have its time and place,

but for infants, please consider other options.

Have you had a PEDIATRIC neurosurgeon look at the MRI

scan? Please consider having a PED. neuroSURGEON read

the actual films, not just the radiologists report.

Since has a sacral dimple, you will want to make

sure any kind of spinal cord anomaly is ruled out.

The scan may not show anything obvious as is

still an infant. However, please keep the symptoms

and signs of a tethered cord in mind as he grows and

develops.

With all that being said, continue to enjoy your

little one! He will grow and change everyday.

Exercise and being an active infant/toddler will be

the best therapy he can have. Hopefully you are

working with a PT for his torticollis. That's great.

Keep up the good work and let us know if you have any

questions or comments.

Carmellmom to Kara 18, idiopathic scoliosis, Blake 15, GERD and Braydon 9,

VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01),

thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery

5/96), missing coccyx, fatty filum/TC (released 4/99), 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, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________________

[Guest guest]

,

It sounds like you have gotten some really great advice already. My

dd had an extra thumb when born, and has some other issues with her

shoulder. Her right side is smaller from the waist up. She had a

syrinx in her spinal cord, but it has since gone down. She had a

lot of trouble learning to sit up --long story short, she was

diagnosed with torticollis, but really had a hemivertebrae on one

side of her neck, so half of a vertebrae on one side but not on the

other. This is what made her head tilt. For us, we are able to see

the abnormality in her neck area on the MRI, but not on the xrays,

becuase it is can be very hard to see the cervical vertebrae of a

baby. We kept taking her to therapy and though they had wanted to

fuse her neck straight, I could not do it, it is now straight on its

own. My dd has thoracic scoliosis too, we think bc of her fused

ribs . I would get another opinion, we go to Dr. Emans all the way

from Chicago bc we were not finding anyone here we felt completely

confident in. Is doing therapy? We also had a lot of trouble

eating in the sense that she could not sit up in a high chair

without padding to hold her up.

It seems there are quite a few kids with club foot and scoliosis.

Glad that his foot seems to be doing well.

> Hello, everyone.

>

> My son was born on December 15, 2004, with a right clubfoot

and a few other anomalies. Once he started sitting up on his own

about a month and a half ago, I noticed that he always leaned to one

side. He already has torticollis (tilts his head to the left) and I

thought that maybe he was leaning his body to the right to kind of

make up for it. Anyhow, during a follow-up for his clubfoot, I

asked his orthopedist to take a look at his back and the way he sits

and he immediately took an x-ray and it looked like 3 or 4 lower

thoracic vertebrae may be fused. The curve was 30 degrees. Does

that sound mild? Moderate? He had an MRI done last week and we are

waiting for the results. (His doc is away until 9/6.) So, we are

trying to figure out if he has congenital or infantile scoliosis.

His doc said that if it is congenital then he will need surgery to

fuse the other side of those 3-4 vertebrae. If it's infantile and

they are not fused, then we will see if it is progressive and

> take another x-ray in 3 months. I've spent so much time

researching his clubfoot and have joined a support group for

that as well and now this scoliosis thing is all new to me.

>

> Do any of you live or go to a doc in New York City or the

surrounding area? We go to Dr. Feldman at NYU. He apparently is

well-known for treating scoliosis as well as clubfoot. He is the

chief pediatric orthopedist there. Does anyone see him? I look

forward to reading all your posts and to posting my own messages

whenever I have a question. I find that parents of children going

through the same thing can be a lot more helpful than docs with

medical degrees who threat those things.

>

> Do any of your children have any syndrome that scoliosis is just a

part of? We can't figure out if has some type of syndrome or

what. His other anomalies are as follows: left ptosis (droopy

eyelid), right club foot (corrected via Ponseti Method of serial

casting and currently in foot abduction bar and corrective shoes

nights only), contractures in 2-3 fingers on both hands

(camptodactyly) which have improved with stretching, left

torticollis, dimple above his butt (most peds who saw it say it's

more of a little crease than a dimple, also there is no hairy patch

or bump there), dimples in elbows and knees ( I thought it was just

from chubbiness, but apparently can be a sign of arthrogryposis?),

tightness in muscles all over. He doesn't really have any major

developmental delays. He's not crawling yet, but he's trying, and

he's pretty mobile with the rolling over and just pivoting on his

buddha belly or on his back.

>

> Sorry for all the questions! If any one has any words of advice

or anything to say whatsoever, I am all ears!!!

>

> Thanks in advance for everything!

>

>

>

>

>

> ---------------------------------

> Start your day with - make it your home page

[Guest guest]

,

I am

an adult with arthrogryposis and what you are describing in your post, sounds

like arthrogryposis, contractures, the head tilting to one side. And I

also have scoliosis.

This

group will be able to help you. They are great about responding right

away as you can see. So don’t hesitate to ask questions.

Betty

Madison, WI

[Guest guest]

> > > Hello, everyone.

> > >

> > > My son was born on December 15, 2004, with a

> > right clubfoot

> > and a few other anomalies. Once he started sitting

> > up on his own

> > about a month and a half ago, I noticed that he

> > always leaned to one

> > side. He already has torticollis (tilts his head to

> > the left) and I

> > thought that maybe he was leaning his body to the

> > right to kind of

> > make up for it. Anyhow, during a follow-up for his

> > clubfoot, I

> > asked his orthopedist to take a look at his back and

> > the way he sits

> > and he immediately took an x-ray and it looked like

> > 3 or 4 lower

> > thoracic vertebrae may be fused. The curve was 30

> > degrees. Does

> > that sound mild? Moderate? He had an MRI done last

> > week and we are

> > waiting for the results. (His doc is away until

> > 9/6.) So, we are

> > trying to figure out if he has congenital or

> > infantile scoliosis.

> > His doc said that if it is congenital then he will

> > need surgery to

> > fuse the other side of those 3-4 vertebrae. If it's

> > infantile and

> > they are not fused, then we will see if it is

> > progressive and

> > > take another x-ray in 3 months. I've spent so much

> > time

> > researching his clubfoot and have joined a

> > support group for

> > that as well and now this scoliosis thing is all new

> > to me.

> > >

> > > Do any of you live or go to a doc in New York City

> > or the

> > surrounding area? We go to Dr. Feldman at NYU. He

> > apparently is

> > well-known for treating scoliosis as well as

> > clubfoot. He is the

> > chief pediatric orthopedist there. Does anyone see

> > him? I look

> > forward to reading all your posts and to posting my

> > own messages

> > whenever I have a question. I find that parents of

> > children going

> > through the same thing can be a lot more helpful

> > than docs with

> > medical degrees who threat those things.

> > >

> > > Do any of your children have any syndrome that

> > scoliosis is just a

> > part of? We can't figure out if has some type

> > of syndrome or

> > what. His other anomalies are as follows: left

> > ptosis (droopy

> > eyelid), right club foot (corrected via Ponseti

> > Method of serial

> > casting and currently in foot abduction bar and

> > corrective shoes

> > nights only), contractures in 2-3 fingers on both

> > hands

> > (camptodactyly) which have improved with stretching,

> > left

> > torticollis, dimple above his butt (most peds who

> > saw it say it's

> > more of a little crease than a dimple, also there is

> > no hairy patch

> > or bump there), dimples in elbows and knees ( I

> > thought it was just

> > from chubbiness, but apparently can be a sign of

> > arthrogryposis?),

> > tightness in muscles all over. He doesn't really

> > have any major

> > developmental delays. He's not crawling yet, but

> > he's trying, and

> > he's pretty mobile with the rolling over and just

> > pivoting on his

> > buddha belly or on his back.

> > >

> > > Sorry for all the questions! If any one has any

> > words of advice

> > or anything to say whatsoever, I am all ears!!!

> > >

> > > Thanks in advance for everything!

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Start your day with - make it your home

> > page

> >

> >

> >

> >

> >

> >

> >