treating non-synostotic scaphocephaly with doc band

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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