Re: What to expect once the referral has been sent

[Guest guest]

Welcome,

We do not have a DOC band so I will let the others answer some of

your questions. I just wanted you to know you will find lots of

support here.

and Sam

4/11/00

Banded

1/16/01

> Hi everyone,

>

> I'm new at this and was hoping to gain some insight as to the next

> step. We just had our pediatrican fax over the referral to CT.

What

> happens at CT? Do they first take XRAYS, catscan? determine

> measurements, and then ultimately decide on the DOC Band?

>

> I will be travelling from out of town since they don't have a

clinic

> in Denver, CO. Has anyone else had to fly weekly to do this? I

have

> Aetna and will be looking into whether they cover travel expenses.

> Any insight would be helpful. I'm nervous about this whole process

> but I know it's the best thing from my son Ian who is 5 1/2 months

> old.

>

> Does anyone also know of older children that had the DOC Band as

> babies? How are those children doing? Any thoughts?

[Guest guest]

My daughter Hannah first had a skull x-ray ordered by her peditrician

(which was normal). Then she was referred to a pediatric

neurosurgeon who ordered a CAT scan to make sure there was nothing

serious going on and to confirm that her sutures were open. The

neurosurgeon then sent a script to the Cranial Tech. facility (RDA)

in our area. We met with the orthotist at RDA and she said that it

was strictly our decision if we wanted to get the band or not. It

has been a hard decision, but we are getting Hannah casted next

week. She is almost 10 months old, so I know time is critical. I

have read alot about banding older children and I think it is just a

wait and see game with everyone (they can't guarantee anything for

any child). The older the child, the slower the process and possibly

the longer they will have to wear the band. We have been told our

daughter will have to wear her band for at least 4 months, but I have

read postings of people whose children graduated earlier (and

later). I think it is odd that your neurosurgeon would not do a CAT

Scan before ordering the band. Our neuro. said that it was a

neccessity before treatment with the band. You are lucky that

someone caught your sons irregular shaped head early. Ian (I love

that name) should do really well if you decide to band.

As for insurance: our insurance company has denied the charges

(Humana). We will have to appeal their decision. We waited almost 2

months to hear something the first time, so we don't have time to

wait on them anymore. If they don't pay...we will have to. If you

can get travel expenses that would be excellent (and very

surprising). These insurance companys don't want to pay unless they

have to. Good luck with it.

I wanted to add: I really admire your dedication to Ian. Having to

travel that far would be really hard. We are lucky because we only

have a 2 hour drive each way to our clinic in Kansas City, MO. Of

course, we would do anything for our daughter too...

I would be happy to keep you informed with our whole banding process

if you would like. It helps to get some insight in the whole thing.

This group has really helped us. There are some great people here to

help you out.

Good luck...and keep me informed.

Stacey Chapman

Mother of Hannah (soon to be banded)

> Hi everyone,

>

> I'm new at this and was hoping to gain some insight as to the next

> step. We just had our pediatrican fax over the referral to CT.

What

> happens at CT? Do they first take XRAYS, catscan? determine

> measurements, and then ultimately decide on the DOC Band?

>

> I will be travelling from out of town since they don't have a

clinic

> in Denver, CO. Has anyone else had to fly weekly to do this? I

have

> Aetna and will be looking into whether they cover travel expenses.

> Any insight would be helpful. I'm nervous about this whole process

> but I know it's the best thing from my son Ian who is 5 1/2 months

> old.

>

> Does anyone also know of older children that had the DOC Band as

> babies? How are those children doing? Any thoughts?

[Guest guest]

Stacey,

Thanks for your support. There was a bit of confusion in the

beginning about the entire referral process. But it's straightened

out now - we have an appt with the neurosurgeon on Feb 7th (first

available of course) in Phoenix and upon that visit, he'll determine

Ian's severity of plagio and have xrays to rule out cs. We are

flying to Phoenix since the neurosurgeons here in CO don't support

it.

However, I found a place in Colorado - Rehab Designs of America that

make the Star Band. Upon receiving the prescription from the

neurosurgeon, it'll take another 2-3 weeks before getting the Star

band. I almost wish I could get the casting done now and receive the

the band once we complete our visit with the neurosurgeon. Time is

so precious.

Cranial Technologies in Phoenix is willing to work with us so we can

have the band casted and go home with it the very next week after the

neuro visit. I'm tempted to go that route simply b/c Ian will be in

the band 2-3 weeks earlier. Do you think that makes a difference?

The only downside is the travel aspect. Do you know the difference

b/n the star band and the doc band? Are they the same? Why is there

such a difference in price?

How's Hannah doing with her band?

> > Hi everyone,

> >

> > I'm new at this and was hoping to gain some insight as to the

next

> > step. We just had our pediatrican fax over the referral to CT.

> What

> > happens at CT? Do they first take XRAYS, catscan? determine

> > measurements, and then ultimately decide on the DOC Band?

> >

> > I will be travelling from out of town since they don't have a

> clinic

> > in Denver, CO. Has anyone else had to fly weekly to do this? I

> have

> > Aetna and will be looking into whether they cover travel

expenses.

> > Any insight would be helpful. I'm nervous about this whole

process

> > but I know it's the best thing from my son Ian who is 5 1/2

months

> > old.

> >

> > Does anyone also know of older children that had the DOC Band as

> > babies? How are those children doing? Any thoughts?

[Guest guest]

In a message dated 1/21/01 2:47:12 PM Pacific Standard Time, selena@... writes:

Do you know the difference b/n the star band and the doc band? Are they the same? Why is there such a difference in price?

We've had both the STAR and DOC. The STAR goes a little higher on the head.

They each attach on opposites sides, that is it! They really are almost the same. Price, good question! My DOC Band in WI was $2,500, this was last June. Our STAR is $1,000. DOC can cost up to $3,500 depending on location.

The STAR can range depending on the orthotics person. Each should take about the same amount of time after casting to get.

Tammy & 12/8/99

PS Check out the Tammy & folder for picture of each band to compare!

[Guest guest]

I happen to read your email about flying to Phoenix to see the neuro and

visit cranial tech's lab. I live here in Phoenix and was wondering who you

were seeing? Just for peace of mind I also wanted to let you know the the

people at cranial tech in Phx are wonderful. Everyone is so nice and easy to

work with. My son is still waiting to get casted (insurance nightmare) but

I've been to the lab and talked on the phone to several people there. Good

luck and if you want to call me for directions, lodging, eating, etc here in

phoenix............feel free. (602) 246-7781

Good luck, I think your making the right decision.

Heidi