new with questions

[Guest guest]

Hello all! i know you were all in my position at one point in time.

This is my first baby and he has flattening on one side of his head,

his cheek is puffier on one side, his ears are off from each other.

He liked looking to the right and still does to some extent, but will

look to the left. Dr. said not tort. He also said it would fix

itself - but reluctantly gave us information on it. We had made an

appt. between our 4-6 month appts at 5 months to talk to him about it

again. We mentioned it at the 4 month check-up. Again same response,

said if it was his kid he wouldnt band him. So that made my husband

feel better, but not me. The whole " should " get better doesn't sit

well with me. I am a factual person. So to the point of my question

(s). We are going in for a first visit with Cranial Tech - any

opinions about that? especially in Charlotte? - and I wanted to know

what questions you felt were important to ask or things to state?

Also has anyone had any luck with insurance (especially from SC

BCBS)? Also the asymmetry - what type of numbers were your children

to see how off he is when the measure him. i do apologize for so many

questions. but i am so scared and nervous about it all. I dont want

to band him for no reason, but i also dont want to not band him and

him have a misshapen head forever. I just thought the best place to

get answers would be from those who have and are going through the

same things i am. Any help is greatly appreciated and welcomed!

Thanks again!

[Guest guest]

Welcome!

I agree that you need to follow your gut on this one, at least to

investigate every possible avenue you have available to you and make

an informed decision. I did not and I really wish I had. I was told

over and over again that it would round out on it's own also, but at

least in my son's case, that was not true. We finally did band him

when he was 17 months old because his plagio was still

moderate/severe. We go to Cranial Tech in Charlotte and absolutely

love them. is our therapist, I highly recommend him. My son

is in his second DOCBand (because of his age) and we graduate next

week. He started out at 15mm of asymmetry for both traditional

cranial vault (or top of the head) and skull base (ears), and that's

considered borderline severe (at least high-end moderate), just to

give you some point of reference. There are severity assessment

charts available in our files section if you want to try to compare:

Plagiocephaly/files/DOCBand%

20Info/Severity%20Assessment/

CT should honestly almost answer your questions before you even have

a chance to ask them, they've heard them so many times before. I

remember that the one question I wanted to ask was " if he was your

son, would you band him? " and , who did our eval, answered

the question before I even asked it. They will take measurements and

photos and then let you know what they think. Has your ped written

the script for it yet, or is he waiting for the eval from CT? If you

do decide to band, you will be in good hands at CT Charlotte.

I had luck with insurance, BCBS of NC FEP, they covered 75% (CT was

out of network or it would have been 90%). I'm not sure about SC

though. Hopefully someone else can chime in on that.

Good luck, please keep us posted!

Jake-2 (tort resolved/rt plagio/DOCBand #2 14 weeks)

Jordan-4

>

> Hello all! i know you were all in my position at one point in

time.

> This is my first baby and he has flattening on one side of his

head,

> his cheek is puffier on one side, his ears are off from each

other.

> He liked looking to the right and still does to some extent, but

will

> look to the left. Dr. said not tort. He also said it would fix

> itself - but reluctantly gave us information on it. We had made an

> appt. between our 4-6 month appts at 5 months to talk to him about

it

> again. We mentioned it at the 4 month check-up. Again same

response,

> said if it was his kid he wouldnt band him. So that made my

husband

> feel better, but not me. The whole " should " get better doesn't sit

> well with me. I am a factual person. So to the point of my question

> (s). We are going in for a first visit with Cranial Tech - any

> opinions about that? especially in Charlotte? - and I wanted to

know

> what questions you felt were important to ask or things to state?

> Also has anyone had any luck with insurance (especially from SC

> BCBS)? Also the asymmetry - what type of numbers were your

children

> to see how off he is when the measure him. i do apologize for so

many

> questions. but i am so scared and nervous about it all. I dont

want

> to band him for no reason, but i also dont want to not band him

and

> him have a misshapen head forever. I just thought the best place

to

> get answers would be from those who have and are going through the

> same things i am. Any help is greatly appreciated and welcomed!

> Thanks again!

>

[Guest guest]

Hello and welcome to the group. Most members are in the US. Over time there have

been members from australia, but I remember in general there aren't that many

banding options there. You can search old messages for australia and see what

you can find. A neurosurgeon can prescribe the band, but many are not

pro-banding. from my experience the best doctors are cranio facial plastic

surgeons. I'm not sure if that is the case where you are, but in the US it is.

Neuros are often more concerned that the brain is healthy and don't mind the

head being misshapen. Of course some neuros will prescribe bands.

Hopefully you are doing some physical therapy for the tort too, but due to the

stroke it sounds like this won't be as effective for you as it is for many. Even

with healthy babies physical therapy along with helmet therapy seems to be the

best combination (unless tort isn't present and banding alone works).

-christine

sydney, 5 yrs, starband grad

>

> Hi everyone I am new and live in Australia. I have 6 children and my youngest

daughter who is 5.5 mths was diagnosed just over a month ago. She has a flat

spot on the left hand side of her head from severe torticollis due to suffering

a stroke prior to being born. We have been using repositioning and it has not

gotten any worse but we are getting more concerned. Her ears are out of

alignment and her cheek on the left side is a lot more prominent than the right

side. We have been struggling with the repositioning due to her stroke she has

no use of her left hand side and does not have good head and neck control.

>

> The actual shape of her head is not to bad but her ears and face seem to be

quite bad. Her physio has not suggested any treatment at this stage but we think

she might need more than just repositioning. The problem we have is keeping her

off her head her head and neck control are not good enough to sit her up and she

struggles with tummy time as she can not bear weight on her left arm so she can

not really lift her head off the floor. We don't see her neuro for another

1.5mths but this is a follow up from her stroke not about this but I will be

speaking to him about it. Should we be doing more to push our physio or do we

need to see a different type of specialist. Did you make the decision to have

further treatment or was it suggested. I don't know if we should be pushing to

get her in a helmet or just wait to see if it improves but her ears are now out

by about 1.5cm and it is getting very noticeable. Is there anything else we can

use to help her. Any advice would be greatly appreciated. Thanks

>