Re: New here...Anyone from Missouri?

June 26, 2006

Thanks for the reply. So, did you start out with treatment there in

KC? I've read so many great things about the DOC bands and the

clinics they have, and of course I only want the best for my precious

baby. I have read that you are supposed to follow up once a week, is

this the case for everyone or is it case specific? I wouldn't mind

the drive to Dallas if it were not every week.

Also, do you have to get a referral to go to the clinic down there or

can you just call and get an appointment? Does it take a long time

to get in to see them?

Avery will have the CAT scan on July 6th and then we will know if

it's just plagiocephaly (and what kind I guess) or if it's

craniosynostosis. According to the neuro, that would require

surgery. Hate that thought.

Anyway, sorry for all the questions, like I said, we are totally new

to this whole experience and I'm trying to get all the info I can.

Thanks,

Holly-MO

Avery-4 months (unsure yet of complete diagnosis)

> My daughter is 4 months and has just been to see the

neurosurgeon, Dr.

> Briggs. He is sending us to get a CAT scan and then to an

> orthotist locally in Springfield, MO. Larsen Orthotics. I

don't

> know a thing about this place and don't know if anyone out there

has

> had dealings or heard of anyone who has had dealings with them. I

> don't want to take my daughter to someone who may not know what

they

> are doing. I have read about the DOC helmets, but the closest

clinic

> to us is Dallas. Quite a drive for us. This is all happening

suddenly

> for us and we are trying to make sense of it all.

> I would love to hear from anyone who may be able to give us some

help

> or advice.

> Thank you.

>

June 30, 2006

I take my twin sons to a Hanger facility in Columbia, MO. We live

in Golden City, MO, so it is about a 3 1/2 hour drive for us, but it

was the closest facility that was in network for insurance. Plus,

the orthotist there does have quite a bit of experience, we had an

appointment yesterday and she had two other babies there at the same

time we were there. We were also very impressed with the

craniofacial specialist we saw there, he came down to see us the day

we saw our ortho because she thought we should get a second opinion

on craniosynostosis, and we didn't even have an appointment, he just

happened to be nearly finished with one surgery and came and saw us

before starting the next. He wanted us to get CAT scans done, and

the hospital worked us in that day, too. I was very pleased with

how we were treated at Columbia Children's Hospital. We really felt

like they bent over backwards for us, so I would definitely

recommend them. I did make a lot of calls to orthos in KC, even

though they would not have been considered in network, and I would

be glad to give you the information that I got if you are

interested. I don't know anything about Larson Orthotics, I

didn't even know there was anyone in Springfield that does bands,

but I think he would be worth checking into, because that would be

so much closer.

Good luck!

Dawson and Jayden, 14 mo. old

>

> My daughter is 4 months and has just been to see the neurosurgeon,

Dr.