Re: Jen:Neck advise please

[Guest guest]

Jen, Thanks for the reply. I have that feeling like the Drs must think I am

nuts, but I am still going to have him evaluated by spinal ortho at Childrens

hospital, this week. I finally figured out where to take him. my son hasn't

had any xrays but he definatley has something wrong, basically he is bending to

the side and out of alignment. The PT sees it but thinks it is all muscle

related and is working with him 2 times a week, I really hope it will correct

but we'll see what the specialist says.

did your dd have surgery? were they able to correct the spinal abnormality?

le

>

> With my dd we went to alot of different drs. She did have alot of

> x-rays taken.

> If you are worried about the way your baby moves his body then request

> to see an orthopedic dr. Or even a Physical therapist. They can help

> you structurally.

> With my dd we went 1st thru pediatric who referred us to orthopedic.

> They thought that there was nothing structurally wrong and so referred

> us to Physical Therapy. After months of therapy, her tort did not get

> better and she was moving her body differently on the right then on the

> left.(about 18 mo old) She had xrays, ct's and MRI's and that is when

> they found the spinal cord abnormalities.

> You need to be a LOUD voice for your son. I really had to push to get

> diagnosis for my dd. They all thought I was crazy and 1 dr even told me

> that my dd was fine and I was looking at her too closely. When they

> finally found the spinal cord abnormalities, I was sad for my dd, but

> happy that I had pushed. I was right! I knew that there was something

> wrong with my dd - but it took alot of fighting to get heard.

>

> Jen

> Mom to Luli - 4 yrs old

> Torticollis, Plagio, Syringomyelia

>

>

>

>

>

>

>

>

[Guest guest]

I'm not 100% sure what you are describing with your son - but I know

for us, my dd was effected by her tort in her whole body. She had left

tort and if she was laying on her back her whole body curved in a " C "

shape toward her left side. Her left leg was shorter too. Her body is

still a bit asym but it is unnoticable.

My dd did have surgery this past Nov. and she is doing great! They

drained her spinal cord and it relieved the pressure on her nerves.

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

Re: Jen:Neck advise please

Jen, Thanks for the reply. I have that feeling like the Drs must think

I am nuts, but I am still going to have him evaluated by spinal ortho

at Childrens hospital, this week. I finally figured out where to take

him. my son hasn't had any xrays but he definatley has something

wrong, basically he is bending to the side and out of alignment. The

PT sees it but thinks it is all muscle related and is working with him

2 times a week, I really hope it will correct but we'll see what the

specialist says.

did your dd have surgery? were they able to correct the spinal

abnormality?

le

>

> With my dd we went to alot of different drs. She did have alot of

> x-rays taken.

> If you are worried about the way your baby moves his body then

request

> to see an orthopedic dr. Or even a Physical therapist. They can

help

> you structurally.

> With my dd we went 1st thru pediatric who referred us to orthopedic.

> They thought that there was nothing structurally wrong and so

referred

> us to Physical Therapy. After months of therapy, her tort did not get

> better and she was moving her body differently on the right then on

the

> left.(about 18 mo old) She had xrays, ct's and MRI's and that is

when

> they found the spinal cord abnormalities.

> You need to be a LOUD voice for your son. I really had to push to

get

> diagnosis for my dd. They all thought I was crazy and 1 dr even told

me

> that my dd was fine and I was looking at her too closely. When they

> finally found the spinal cord abnormalities, I was sad for my dd, but

> happy that I had pushed. I was right! I knew that there was

something

> wrong with my dd - but it took alot of fighting to get heard.

>

> Jen

> Mom to Luli - 4 yrs old

> Torticollis, Plagio, Syringomyelia

>

>

>

>

>

>

>

>

[Guest guest]

le - I'm sorry, I forget how old your baby is?

For us it wasn't until my dd was walking and we noticed she moved the

leftside differently than the right that they did the 1st MRI... and

that was just her brain to look for any damage (none found). Then at

about 16-18 mo. old, her tort was still bad and so they did another MRI

and that is when they found the spinal abnormalities. I'm not sure if

it had anything to do with anything, but my dd didn't roll over until

6mo. and never crawled. But she did start walking at 8 mo. But it was

watching those milestones and seeing her walk at such a young age, that

we really saw that she moved her body differently. When she ran, she

ran sideways.

Just keep an eye on him and see how he moves his body as he grows. An

orthopedic dr might be a good next appt.

Hope that helps!

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

Re: Jen:Neck advise please

Jen, yes my son does bend to the side in sort of a c shape, both

laying and sitting! they took xrays and his spine is bending slightly

to the left, opposite his ® tort side. He is a bit out of balance,

his tort is actually much better but his body is asymetrical we are

still doing PT for this. No other abnormalities were onserved, so

just advised to return to see if its getting worse in 6 mos. very odd

and frustarting. Just thought I'd update you. thanks for your advice.

glad your daughter got resolved!

le

> >

> > With my dd we went to alot of different drs. She did have alot of

> > x-rays taken.

> > If you are worried about the way your baby moves his body then

> request

> > to see an orthopedic dr. Or even a Physical therapist. They can

> help

> > you structurally.

> > With my dd we went 1st thru pediatric who referred us to orthopedic.

> > They thought that there was nothing structurally wrong and so

> referred

> > us to Physical Therapy. After months of therapy, her tort did not

get

> > better and she was moving her body differently on the right then on

> the

> > left.(about 18 mo old) She had xrays, ct's and MRI's and that is

> when

> > they found the spinal cord abnormalities.

> > You need to be a LOUD voice for your son. I really had to push to

> get

> > diagnosis for my dd. They all thought I was crazy and 1 dr even

told

> me

> > that my dd was fine and I was looking at her too closely. When they

> > finally found the spinal cord abnormalities, I was sad for my dd,

but

> > happy that I had pushed. I was right! I knew that there was

> something

> > wrong with my dd - but it took alot of fighting to get heard.

> >

> > Jen

> > Mom to Luli - 4 yrs old

> > Torticollis, Plagio, Syringomyelia

> >

> >

> >

> >

> >

> >

> >

> >

>

[Guest guest]

Jen, wow walking at 8 mos! she must be really active! lol my LO is 9 1/2 mos

and just beginning to crawl and also pulling to stand. He still does not roll,

thats a possiblity of why his torso is bending not strong?? (said the PT) I did

take him to an ortho spinal specialist. The spine is just curving to the left

so he reccomended to come back in 6 mos to see if its progressing. Not alot to

do it seems other than hoping the PT will help him get more balanced. I may

take him for a chirpractic or cst or somthing, I'm really hoping to prevent it

from progressing!

le

9 mos

> > >

> > > With my dd we went to alot of different drs. She did have alot of

> > > x-rays taken.

> > > If you are worried about the way your baby moves his body then

> > request

> > > to see an orthopedic dr. Or even a Physical therapist. They can

> > help

> > > you structurally.

> > > With my dd we went 1st thru pediatric who referred us to orthopedic.

> > > They thought that there was nothing structurally wrong and so

> > referred

> > > us to Physical Therapy. After months of therapy, her tort did not

> get

> > > better and she was moving her body differently on the right then on

> > the

> > > left.(about 18 mo old) She had xrays, ct's and MRI's and that is

> > when

> > > they found the spinal cord abnormalities.

> > > You need to be a LOUD voice for your son. I really had to push to

> > get

> > > diagnosis for my dd. They all thought I was crazy and 1 dr even

> told

> > me

> > > that my dd was fine and I was looking at her too closely. When they

> > > finally found the spinal cord abnormalities, I was sad for my dd,

> but

> > > happy that I had pushed. I was right! I knew that there was

> > something

> > > wrong with my dd - but it took alot of fighting to get heard.

> > >

> > > Jen

> > > Mom to Luli - 4 yrs old

> > > Torticollis, Plagio, Syringomyelia

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

>