New Positional Plagiocephaly diagnosis...what now?

[Guest guest]

Hi Everyone,

So the good news is the CT scan showed my 9 month old son is fine. This group

has been so valuable for me in learning about this condition, though I still

have much to learn.

Here is my question: My doctor said that because the CT scan was fine my son

would be fine and if we reposition his head while he sleeps it will correct

itself. I'd LOVE to believe this, but thought I'd ask all of you what your

thoughts were? I know there is an ideal 'window' to have a baby start with the

bands and my concern is if I keep waiting as my sons doctor suggests, we'll miss

that window.

Is it considered cosmetic as far as insurance goes? I've asked for a second

opinion but my son's doctors office wasn't going to refer me until the CT scan

was done, and now that it's done, they seem to believe a second opinion or

referral to a specialist isn't needed.

Any advice on the best course of action, if any, I should take at this point?

Thank you so much for your time and for previous support while I was waiting for

the CT scan. I'm very glad the two doctors I saw previously were wrong for the

need of the CT scan....so relieved!

Ally

[Guest guest]

Well, I'm glad that the CT scan was negative. That's very good news. But, the

question of plagiocephaly still remains. I do not believe a 9 month old will get

a lot better without treatment. Repositioning works best for babies 3 months and

younger. Have you had your son's head measured to find out how much asymmetry he

has? If not, you should take him to a band provider for a consultation. Some

providers will see him without a prescription for an initial consultation, and

some won't. Many people have to go to the helmet provider first so they can use

the measurements to convince the pediatrician to write a prescription, and it

sounds like you are unfortunately in that position.

Check for locations on these sites if you live in the USA:

www.cranialtech.com - free evaluation without prescription

http://www.orthomerica.com/products/cranial/starband.htm - call locations to see

if they do evaluations without a prescription

http://www.hanger.com/locations/Pages/LocationByState.aspx - call locations to

see if they make orthotic helmets and if they do evaluations without a

prescription

Best of luck!

>

> Hi Everyone,

> So the good news is the CT scan showed my 9 month old son is fine. This group

has been so valuable for me in learning about this condition, though I still

have much to learn.

>

> Here is my question: My doctor said that because the CT scan was fine my son

would be fine and if we reposition his head while he sleeps it will correct

itself. I'd LOVE to believe this, but thought I'd ask all of you what your

thoughts were? I know there is an ideal 'window' to have a baby start with the

bands and my concern is if I keep waiting as my sons doctor suggests, we'll miss

that window.

>

> Is it considered cosmetic as far as insurance goes? I've asked for a second

opinion but my son's doctors office wasn't going to refer me until the CT scan

was done, and now that it's done, they seem to believe a second opinion or

referral to a specialist isn't needed.

>

> Any advice on the best course of action, if any, I should take at this point?

>

> Thank you so much for your time and for previous support while I was waiting

for the CT scan. I'm very glad the two doctors I saw previously were wrong for

the need of the CT scan....so relieved!

>

> Ally

>

[Guest guest]

Hi Ally,

I'm glad to hear about the CT results. If your baby is 9 mo old he has a lot of

control of his body, so repositioning him will be very difficult. If he is comfy

sleeping a certain way he'll find his way back to that. You can do what you can

to keep him off his flat spot, but it will only help so much - and maybe not at

all given his age. (babies below 6 mo are much easier to repo). If you're not

happy with the head shape this is definitely the time to change it will a

band/helmet. Neurosurgeons are generally concerned with brain growth, not head

shape, so frequently reluctant to recommend banding. Our band was prescribed by

a cranio facial plastic surgeon. He recommends banding at 10 mm or asymmetry or

more, or a cephalic index of 90% or greater - not sure if you've gotten any

measurements for your son's head. Some people even band at lower numbers.

Some babies do round out on their own, but it is not possible to say which will.

My daughter got a lot of correction in her band (age 5 - 10 mo) but very little

change once she was out of her band.

Insurance coverage varies widely. Some companies/plans do deny it as " cosmetic " ,

although there is research linking it to jaw problems etc down the road. Our

band was covered 100% which is a bit unusual.

You definitely should demand an appointment to assess your son's head shape with

someone familiar with banding. One route can be a visit to a band provider -

cranial tech (www.cranialtech.com) does free band assessments. Some starband

providers who have a starscanner will evaluate your child's head for a fee, but

put the fee towards a band if you end up with one. Once you have this info your

doc may be willing to write the prescription. Doctors familiar with banding are

great, but sometimes the wait for an appointment is long.

In the meantime do what you can to keep him off his head (no bouncer, swing

etc).

-christine

sydney, 4.5 yrs, starband grad

>

> Hi Everyone,

> So the good news is the CT scan showed my 9 month old son is fine. This group

has been so valuable for me in learning about this condition, though I still

have much to learn.

>

> Here is my question: My doctor said that because the CT scan was fine my son

would be fine and if we reposition his head while he sleeps it will correct

itself. I'd LOVE to believe this, but thought I'd ask all of you what your

thoughts were? I know there is an ideal 'window' to have a baby start with the

bands and my concern is if I keep waiting as my sons doctor suggests, we'll miss

that window.

>

> Is it considered cosmetic as far as insurance goes? I've asked for a second

opinion but my son's doctors office wasn't going to refer me until the CT scan

was done, and now that it's done, they seem to believe a second opinion or

referral to a specialist isn't needed.

>

> Any advice on the best course of action, if any, I should take at this point?

>

> Thank you so much for your time and for previous support while I was waiting

for the CT scan. I'm very glad the two doctors I saw previously were wrong for

the need of the CT scan....so relieved!

>

> Ally

>

[Guest guest]

Thank you thank you thank you!  This is very useful advice that I probably would have taken awhile to figure out.  I'll search my area to see where I can take my son to get the measurements.  It sounds like the measurements will be the most helpful in talking with my son's pediatrician.  Let the journey begin!

Thanks again for taking time out of your life to help me and my son...gosh, people are so wonderful...you are so wonderful:)Happy holiday season!Ally-- Ally son, MSW

Executive DirectorPositive Human Development

" There is no such thing as a spirit completely broken; therefore, all humans have the right to hope. " www.positivehumandevelopment.com