Repositioning?

[Guest guest]

My daughter, is 3 ½ months old. She was dx with positional

plagiocephaly and Torticollis two weeks ago. When she was 8 weeks

old I pointed out to 's pediatrician that her head flat in the

back. I was told her head was fine and that was normal. I wasn't

too sure about that, but thought I may have been over sensitive

because my niece, had an abnormal shaped head. For they

did a ton of tests, CT and X-rays ever few months because they had

problems dx if a suture was fused in the back. It turned out that it

wasn't, but they never offer the band as an option. When was 2

½ yrs. old surgery was offer but had a high risk so that option was

not taken.

Back to , I tried repositioning with not luck. I started doing

research on the band and plagiocephaly. I discovered how to look for

an asymmetric face, a to my surprise had one. I had never

noticed it before, but her ears did not align, her forehead and cheek

bulged forward, even her eye was lower on one side and bigger. And I

may be crazy by I thing her nose is crooked. I also read about

Torticollis. I had never heard of it before, but sure enough

showed signs of having it. She only held her head in one way and it

was impossible to get her to look over her left shoulder.

So, I called the pediatrician to set up an appt. to have her head and

neck looked at and get a referral. The pediatrician dx her with

plagiocephaly and Torticollis. He showed me how to stretch her neck

and told me to not have her on her back unless she was sleeping. I

asked about the band, but he said wait until she is 6 months old

before we talk about any treatment because her head it being shaped

by outside forces and around 6 months is when the brain starts to

make contact with the skull. This sounded odd, so I asked for a

referral. At first he said no, which surprised me because this

office normally is very proactive. She has an urologist; she had a

kidney infection and was dx with reflux. The pediatrician quickly

referred me to an urologist, and even CALL ME to make sure I followed

up with the specialist. After realizing I have a PPO, he said " I

can't stop you from seeing a specialist " . So, he gave me the names

of two neurosurgeons. I had originally asked for a pediatric

craniofacial plastic surgeon. My pediatrician said a neurosurgeon

was better because he would check for other things. (What other

things? If she is fine and it would most likely round out on its

own.)

I went into the Cranial Tech clinic for a free consult. was

measured; her head was 7 mm and her face was 2-3 mm asymmetrical. I

was told it was mild but her head was enough to treat. The clinic

recommended a go with the repositioning for 4-6 weeks to see if there

is any improvement.

Do I wait? Do I call to make an appt with the specialist now to set

up an appt in a month? I heard it may take sometime to get into see

one.

What do I do with her when I can't hold her? She loves tummy time

and is happy for about 20-30 minutes. However, I am not comfortable

leaving her on her belly if I can't watch her. So what do I do when

I am bathing my other kids or making dinner? I also am taking a trip

to my sister's next week. A ten hours car trip. What do I do in the

car? I have her sitting to the right of her brother, but she doesn't

look at him. She looks at the nothing that is on the other side.

Until the Torticollis is corrected I don't see how she will be able

to hold her head in any other position.

Help!

Heidi (mother of 6, 4 and 3 ½ months)

[Guest guest]

heidi..i was just wondering ..how meagan is doing?..my little girl isn't showing

as much of misalignment...her ears , her eyes are mismatched .. does anyone

elses baby;s head seem to be growing on top..she seems like she has brachy & the

common plagio. it's like a big ball on top and not on bottom....my bb's head ,

she don't like to look straight when standing up or being held..is anyone else's

like that..is that common..i don't want surgery..her tort is fine now, but still

prefers to sleep on rt side & forehead is a little bulge is this common? my

aunt was offending me by talking how she'll be bad when grown up bc of

that..ugh!- mary

[Guest guest]

My goodness :

Please, please, PLEASE get your child into a specialist as soon as

possible. I see that Marci gave you a wonderful recommendation. I

know that you do not want surgery for your baby - no one does. BUT,

if your baby does have cranio (again, we hope and pray she doesn't)

it will be her best shot at a normal life.

There is another mom out there on the olderplag board who was not

diagnosed in time, and her little guy suffered brain damage. Please,

do not let this happen to your precious little girl.

As far as anyone saying that she'll be " bad " because of her head,

that just sounds like ignorance and lack of compassion to me. If

your aunt really cared and had an ounce of compassion in her body,

she would NEVER say such and damning and horrible thing about a baby!

If she cared at all about doing something constructive, instead of

destructive, she would offer to help you make phone calls, read up on

various conditions, etc. to help you sort this out - not make such

outlandish, hateful remarks.

Perhaps she needs to spend a little more time in the religious

service of her choice learning how to be kind to her fellow man...

at any rate, DO NOT LISTEN TO SUCH NONESENSE!

One thing everyone has written to you is in agreement on - you need

to get that baby in and have her checked out. No question, no

discussion, end of story. We all hope and pray that she " only " has

plagio, and in that case you can use helmet therapy for her. But

only a trained specialist can help you for sure.

It is common for the eyes to be mismatched, ears mismatched, and if

she doesn't look up she could have torticollis. OR, it could be a

neurological problem. This is why you HAVE to get it checked out as

soon as possible.

You have received great advice here on this board - we are all here

for you and praying for your daughter. Remember, you are the only

person in the world who truly cares about your baby and her quality

of life. No-one else can take that responsibility on for you. It is

up to you to get her the medical attention that she needs, and

deserves, in order to assure she lives a happy life!

Kind regards,

> heidi..i was just wondering ..how meagan is doing?..my little girl

isn't showing as much of misalignment...her ears , her eyes are

mismatched .. does anyone elses baby;s head seem to be growing on

top..she seems like she has brachy & the common plagio. it's like a

big ball on top and not on bottom....my bb's head , she don't like to

look straight when standing up or being held..is anyone else's like

that..is that common..i don't want surgery..her tort is fine now, but

still prefers to sleep on rt side & forehead is a little bulge is

this common? my aunt was offending me by talking how she'll be bad

when grown up bc of that..ugh!- mary