Re: treating non-synostotic scaphocephaly with doc band

April 17, 2008

Amy - is a DOLL!!!! What a great smile!

I want to say that the CT location close to you (Pasadena/Burbank) has undergone new ownership/managment. IF that Dr had a prejudice against it... it may have been with the previous owner... who passed away quite suddenly last year. As a result, CT in Arizona has taken it over.

You can go for yourself and get a free evaluation to see what you think and also what they think about the head shape and if a band would help.

Also, just to be sure... maybe get another opinion about the sutures... You have 2 differeing opinions so it might be a good idea to see what a 3rd dr says.

BTW - I'm in the LA area too!

Jen and Luli - 28 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

treating non-synostotic scaphocephaly with doc band

Hi Everyone - I just joined yesterday. My son is almost 4

months old. He was born with a long narrow head and a very prominent

occiput. Our Ped gave us a referal to the UCLA craniofacial clinic

when he was 5 weeks old to have him evaluated for suspected sagittal

craniosynostosis. Well, luckily his CT scans came back negative (well

actually the radiologist read it as his left coronal suture was

closing but the surgeons we have met with disagree and say he is fine,

no surgery required).

So with Cranio off the table we started researching the possibility of

correcting his head shape a bit with helmet therapy. He also, because

of the very prominent occiput, has developed some asymmetry since his

head shape forced him to lie to one side. The Ped at UCLA

cranio-facial prescribed a helmet to correct the asymmetry but told us

flat out that there is no way a helmet could correct the scaphocephaly

shape and that any claims by a company that they could were bogus. He

also seemed to insinuate that trying to do so would actually be

dangerous (as in, cause brain damage). When I asked specifically about

the Doc band and cranial tech and their FDA approval to treat it he

was dismissive and said he doesn't recommend them for various reasons

(he seems to have a bit of a grudge over someone who used to work

there who claimed to know more about helmet therapy than him or

something) Anyway, I've seen kids here (Quinn, Blythe), as well as the

paper about "sticky sagittal suture" that seem to directly contradict

the info he gave us today. But when I pushed him he just seemed to get

a bit defensive and dismissive. Kind of like he was annoyed that I had

done any research before talking to him.

We really aren't looking for a huge correction. It is not like I

expect my son to end up with a perfectly round Charlie Brown head or

anything. I happen to think he is adorable and perfect just the way he

is. But if there is a way to normalize his head shape a little bit and

make life a little easier for him down the road we want to do that. As

it is I think he would have a very hard time finding a bicycle helmet

that fits well and he can't lie on his back without his chin being

forced down to his chest. He actually looks uncomfortable because of

it sometimes.

So now we're wondering how to proceed. If we do the helmet we would be

going to him for follow up so I don't know how it would be to go to a

doctor with a doc band which he specifically recommended against. I

mean, we have the script so I guess we could just go get the helmet

and not follow up with him and see if our regular ped would do follow

up but he seemed to say that if we didn't follow up with a doctor who

was an expert in this that we would risk causing damage to our son.

I would love to hear from anyone else who had a kid treated for

scaphocephaly (without synostosis) and what the info their doctors

gave them is.

Thanks in advance for any help. And sorry for the novel!

here is a link to a pictures of his head shape.

http://tinyurl.com/6mvs72

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April 17, 2008

Hi Amy!

My name is , and I'm an *old* member (my son was born in November 1999).

But I lurk and post from time to

time. I'm the mom to Quinn, who was a big baby, breech, and also was born with

a long, narrow headshape, which

looked exactly like sagittal craniosynostosis. And, with a CT scan and xrays we

found it wasn't.

Our brief bio, with some pictures, are on the Craniosynostosis and Positional

Plagiocephaly Support board (CAPPS

kids). http://www.cappskids.org/CAPPSPlagioKidQuinn.htm -- there is also a

picture of how we " repositioned " him

between the time he was first seen by the neurosurgeon and the follow up (which

no doctor told us to do), which

kept him off the sides of his head and allowed him to look around more (towel or

mini-boppy behind neck).

However, after the 4th month, there was not much change from just doing this.

We used a DOCband, (he was casted on his 6 month birthday) and we DID get a

slope, (which was my main concern, as

his head jutted straight back), and more width to his narrowness, and the

indentations at his temples improved,

too. Take a look at Cranial Technolies, Inc (CT)'s cranial assessment for

scaphocephalic head shape.

http://www.cranialtech.com/medicalinfo/assessment/scaphocephaly.pdf

Quinn was a 3 in all areas.

At the time, CT was the only provider to correct this head shape (they have

different bands for different

shapes) -- I believe that at least one other provider says that they work with

this head shape. A passive helmet

will not work for this head shape.

For what is is worth, there are not too many neurosurgeons out there who are

full of positive things to say about

molding therapy. Ours was also reluctant, as well as put off by the fact that I

used medical terms, and had

information. But, he did give us a script.

If you have any questions, feel free to write tnt@...

Take care.

Kind regards,

mom to Quinn, now eight yrs old -- by the way, no brain issues from using the

band.

>------- Original Message -------

>From : Amy[mailto:amyhalpin@...]

>Sent : 4/17/2008 12:46:53 AM

>To : Plagiocephaly

>Cc :

>Subject : RE: treating non-synostotic scaphocephaly with doc band

>

>Hi Everyone - I just joined yesterday. My son is almost 4