Re: Another new person to the group!!!

[Guest guest]

Hi Dawn-

My son Jake was diagnosed with torticollis at 2 months as well. We

saw a PT once a week for about 2.5 months and he graduated with full

range of motion in his neck. The PT will evaluate the torticollis

itself and then the therapy is basically a handful of exercises that

stretch the neck in both directions (not just the weak side) and

she'll give you ideas of how to work on getting the baby to look

more to the weak side and also tips on repositioning. She uses toys

to engage them on the weak side, and a stability ball to work on

their neck strength. You will also have to do the exercises at home

3-5 times a day (at least that's what I had to do). And I can tell

you this: the baby will not like having her neck stretched and

pushed and forced into ANY direction, so don't be surprised if she

screams her head off. But my son got used to it after a while and

didn't fight it so much. And in the end, it's worth it, so don't let

that discourage you. I have some photos of Jake at therapy, if you

like I can post them. Just let me know.

Having said all that, I never once heard the word plagiocephaly back

then, mild or moderate. He did get a CT scan to check for cranio and

he didn't have that which was great news, but the neurosurgeon said

he wouldn't need a helmet, it would work itself out. That was when

Jake was 4 months old. He's 16 months old now and there has been

some improvement to his shape, but he still has significant bulge on

his forehead and ear misalignment. We are in the process of pursuing

a band (I finally got a doctor to listen to me), even though it's

kind of late and the improvement won't be as great. My advice to you

(and you might hear this from other people), is that first of you

all, you have plenty of time. You are lucky you are on to the whole

plagio scene so early (although of course you wish you didn't need

to be at all!). I think tackling the torticollis with PT and the

plagio with repositioning is good for now. Some insurance won't

cover the band until they are 4 months old, plus until she is

sitting up on her own, I've read there is some chance of regression

to the flat spot (or even a new flat spot) after graduation from the

band if it's done too early. So I think not too early, but not too

late would be the best plan of action. But of course, only you can

decide what is best for you and your daughter.

Good luck! (and sorry for the long post!)

in Raleigh

Mom to Jake (16 months)

>

> Hi everyone! My 2.5 month old daughter was diagnosed with

positional

> left side posterior plagiocephaly at her 2 month appointment and

mild

> torticollis. The ped is sending us to see a physical therapist

> tomorrow for a torticollis eval, anyone know what we should expect

> out of that meeting?

>

> My ped is fairly conservative about the plagio and keeps telling

me

> that no one has the perfect head shape and everyone is a bit

> asymetrical but it just doesn't sit well with me. My daughter's

> plagio, while not shockingly obvious is messing with her facial

> features by shoving her ear forward, her cheek on the flat side is

> rounder and sticks out more and even the eye sockets seem

different

> to me. After getting the dx, it did not feel comfortable to me to

> just sit around for 2 more months and see what happens so I called

> the STARband orthoist in our area to ask him for specialist names

> that I could go to. He was shocked to learn that the ped had dx

her

> but not taken any measurements so he offered to measure her

himself

> tomorrow to see where she falls on the mild to severe spectrum and

if

> she would even be a candidate for a band. I am going to predict

that

> she will fall into the low end of moderate since it is messing

with

> her facial features...

>

> Is there anything else that I need to do or people I should

contact

> to get this started?

>

[Guest guest]

If it is messing with her facial features then I would get a second

opinion. My son's ear is slightly forward and the doc thought that it

was an issue.

>

> Hi everyone! My 2.5 month old daughter was diagnosed with positional

> left side posterior plagiocephaly at her 2 month appointment and mild

> torticollis. The ped is sending us to see a physical therapist

> tomorrow for a torticollis eval, anyone know what we should expect

> out of that meeting?

>

> My ped is fairly conservative about the plagio and keeps telling me

> that no one has the perfect head shape and everyone is a bit

> asymetrical but it just doesn't sit well with me. My daughter's

> plagio, while not shockingly obvious is messing with her facial

> features by shoving her ear forward, her cheek on the flat side is

> rounder and sticks out more and even the eye sockets seem different

> to me. After getting the dx, it did not feel comfortable to me to

> just sit around for 2 more months and see what happens so I called

> the STARband orthoist in our area to ask him for specialist names

> that I could go to. He was shocked to learn that the ped had dx her

> but not taken any measurements so he offered to measure her himself

> tomorrow to see where she falls on the mild to severe spectrum and if

> she would even be a candidate for a band. I am going to predict that

> she will fall into the low end of moderate since it is messing with

> her facial features...

>

> Is there anything else that I need to do or people I should contact

> to get this started?

>

[Guest guest]

Hi Dawn-

This is my second attempt at posting a reply to you, so sorry if the

other one pops up later.

My son Jake was diagnosed with tort at 2 months old as well. He was

in PT once a week for 2.5 months and graduated with full range of

motion and strength in his neck. We just started with the PT from

the first appointment (we didn't have a separate eval), but the PT

evaluated his neck and then the therapy consisted of a handful of

exercises and stretches to work the neck in both directions (not

just the weak side). Appointments were 30 minutes long. I had to do

the exercises myself at home 3-5 times a day. She may use toys to

lure the baby to look to the weak side and a stability ball to work

on neck strength. She'll also give you tips for repositioning and

ways to motivate the baby to look to the weak side. I have some

photos of Jake in therapy that I can post if you'd like. Just let me

know.

However, we never heard the word plagiocephaly back then at all, we

just knew Jake had a dramatic flat spot and facial assymetry. He had

a CT scan at 3 months to rule out cranio, which it did, and at 4

months, the neurosurgeon said he wouldn't need a helmet, it would

work itself out on its own. Well, he's 16 months old now and there

has been some improvement, but not enough to correct the bulge on

his forehead and his ear misalignment. I've just gotten a doctor to

take his head seriously enough to write the prescription for the

band and we are going through the whole process now. So my advice to

you would be to take both the tort and plagio seriously, but to

focus on repositioning and PT for now. You are so lucky to be on the

plagio scene so early (although I know you wish you didn't need to

be at all!). You have plenty of time to work with. Some insurance

companies won't cover the band until 4 months old and until

repositioning has been exhausted as a means of correction, and I've

also read tales of possible regression after graduation from the

band because the babies were so young and still not sitting up on

their own yet. So I think the " not too young-but not too late "

approach would be best, but of course, only you will know what is

best for you and your daughter.

Good luck!

in Raleigh

Mom to Jake (16 months)

>

> Hi everyone! My 2.5 month old daughter was diagnosed with

positional

> left side posterior plagiocephaly at her 2 month appointment and

mild

> torticollis. The ped is sending us to see a physical therapist

> tomorrow for a torticollis eval, anyone know what we should expect

> out of that meeting?

>

> My ped is fairly conservative about the plagio and keeps telling

me

> that no one has the perfect head shape and everyone is a bit

> asymetrical but it just doesn't sit well with me. My daughter's

> plagio, while not shockingly obvious is messing with her facial

> features by shoving her ear forward, her cheek on the flat side is

> rounder and sticks out more and even the eye sockets seem

different

> to me. After getting the dx, it did not feel comfortable to me to

> just sit around for 2 more months and see what happens so I called

> the STARband orthoist in our area to ask him for specialist names

> that I could go to. He was shocked to learn that the ped had dx

her

> but not taken any measurements so he offered to measure her

himself

> tomorrow to see where she falls on the mild to severe spectrum and

if

> she would even be a candidate for a band. I am going to predict

that

> she will fall into the low end of moderate since it is messing

with

> her facial features...

>

> Is there anything else that I need to do or people I should

contact

> to get this started?

>