Hello Again

March 31, 2000

Robyn

I am flying to Phoenix from San Francisco next week to the Cranial Tech for

my son.

I would fly to New York if I had to.

I understand that the DOC Band has weekly checks for the younger infants. My

son is nine months old and I think they will check him a week after banding

and then every two weeks thereafter because " his head will grow more slowly

than a younger infant " .

Good luck to you.

Judy

March 31, 2000

Hello Everyone - I was off line for a few days while we sorted out

some problems with our ISP. We are now using AOL so we can continue

research while our ISP is fixing the problem....It seems there are

many new names here within just a few days.

Our 4.5 month old daughter has an appt at UofM next Thursday to

assess her positional plagio. It is my understanding that they build

their own helmet thru the orthotics dept at UofM. The doc at the

cranialfacial clinic does not currently recommend the DOC band so I

will be trying to obtain further info next week on why. I did

however speak with someone in the Orthotics dept at of UofM who

builds the helmets and he felt the DOC band would work well, however

not any better than the helmet they manufacture. Apparently the

first Monday of every month is new patient day so we'll also the

opportunity to talk with and meet some other parents.

I also spoke with Cleveland Clinic and they manufacture their own

helmet as well and have a patent on theirs which utilizes a pnuematic

system for applying pressure rather than the use of the foam padding

which seems to be prevelant in most helmets and the DOC band (please

correct me if I'm wrong). They felt this provides a better way to

gauge and apply pressure where needed. The helmet they use is also

clear which they feel allows better viewing and assessing of the

child's head for potential problems (red spots that I've read about

here). Cleveland's orthotic dept also felt the DOC band was a good

product however again, not any better than what they are providing.

From what I remember, a couple of you are going to the cranial tech

clinic in Oak Brook. Is this north, south of Chicago? Our ped

recommended UofM, however if we are not happy with what they tell us

and the helmet they are using, we would like to speak with Cleveland

and Cranial Tech. Unfortunately for us Chicago is 6 hours one way in

good traffic with no stops :>) and Cleveland is 5 hours one way. Has

anyone else gone to Cleveland Clinic for treatment?

It sounds like the follow-up visits for most helmet therapy are ~3

weeks apart vs. weekly with the DOC band. Is this your experience?

If using the helmet therapy, do you feel this is frequent enough?

Is anyone making 5 - 6 hour drives one way for therapy or are you

making the trip via air with this kind of distance?

We're anxious for our first appt. Hopefully this will calm our

nerves a little when we can actually feel like we're starting

treatment and doing something.

Robyn Piper

March 31, 2000

Judy -

Did you speak with anyone locally or did you know that the DOC band was the

only option you wanted to pursue? We are still thinking about the DOC band

which would mean weekly flights to Chicago for quite a while. We want to

wait and see what they say in Ann Arbor first as we are not totally convinced

that the DOC band will work better or faster than what the helmet will. We

will see next week and hopefully have a strong feeling one way or another and

will be able to make a decision. will be 4.5 months next week.

Thanks for the input and I definitely admire your determination!

Robyn

March 31, 2000

,

I'm glad that there is another option for you and you were able to find it.

Wouldn't it be nice if all of these experts that we see to get help for our

children could be informed about all of the products and treatments available

in their area of specialty. I'm just amazed (and frustrated) at all of the

differences of opinion on this topic. You'd think they would keep up better

with the treatment options and come to some consensus (sp?) on what benefit

or lack of that repositioning has instead of - helmets are best, DOC bands

are best, repositioning is best, nothing is needed it will take care of

itself.... I think we're all finding out that in addition to being our

childrens parents, we need to be our childrens doctors as well!!

April 1, 2000

Hi Robyn:

I'm glad you were able to get on the 'net while you figure out your ISP

problem...

There are a lot of decisions to make, that's for sure. In a way, I wish that

a helmet was an option for us (it isn't because of the shape of my son's

head -- his positional plagiocephaly was in utero (he was breech), and as a

result, has a scaphocephalic, or long and narrow head, and the back of his

head juts out past the neck) because of the cost, and the fact that we will

have to travel so far. But I do feel comfortable with what I have

researched about the DOC band. Our neurosurgeon was also familiar with it,

though didn't know that Cranial Tech made 3 different kinds of bands for

different head shapes.

We live in Cincinnati, and will be taking the 6 hour trip to the Chicago

Cranial Tech clinic. It is most likely that we will drive every time. It

is most likely we will have to go every week as our son is also just 4.5

months old (and I think I recall that the younger they are, that adjustment

is needed more often). I've not looked into any flights for medical

necessity. Mainly because I don't want to fly on a small plane.... I've not

experience with learning about the helmet except from what I've read here,

and I think the adjustment time varies from case to case.

Like the formula -vs. breast feeding debate, the comparisons become moot

when it comes down to it. If your child needs correction and reshaping,

either the helmet or the band will help your child.

Good luck!

-

April 1, 2000

We have to be our children's doctors as well.

This is really the truth. I don't think much of the doctoring profession

anymore.

Judy

April 1, 2000

Robyn

I have consulted two pediatricians and a cranial specialist dealing with

helmets. This started when Bobby was two months old. They kept telling me

that his head would round out. The first ped told me to go home and

encourage Bobby to look to the left. Can you imagine? I called him back and

told him I want an Rx for Phyical Therapy. The second said we didn't need

any physical therapy just put his head under your arm and pull. Can you

imagine? These doctors have " NO IDEA " of what they are doing. The crani

specialist told me the bump and flat spots were minor imperfections and to

just cover them up with his hair when he gets some. I am so tired of rude,

uneducated doctors.

So next week we are going to the Cranial Tech, the experts who have banded

more than 6,000 children (according to their web site). Bobby is already 9

months old and I don't want that bump to be there when he looks in the mirror.

Judy

April 1, 2000

Judy wrote:

>

>We have to be our children's doctors as well.

>

>This is really the truth. I don't think much of the doctoring profession

>anymore.

>

>Judy

>

Judy,

You are very right. We have to look out for our children (and I would add

for ourselves and for others.) But even I think we have to be a bit

forgiving of the medical profession. The fact is that social institutions

are conservative (the anthropologist talking here). Medical training is an

social institution. It used to be that we expected (demanded) that

unswerving confidence from our medical professionals. So " we " created

institutions (medical schools) that taught doctors to act accordingly. What

I am trying to say is that physicians are trained to exude confidence (for

the very good reasons that it improves patient compliance and therefore your

health). However, that makes it difficult to say " I don't know. "

However, I must at this caveat. Say a friend ask you for advice. Let's add

that, if the friend takes your advice, your are responsible for their

well-being (you can take them to court if things don't work out!!!). If

that were the case, you would give your friend your best advice AND expect

them to follow it. What I'm saying is " if there is a problem with our

medical profession we are in part responsible. " After all, they are people

like the rest of us. Believe it or not!

December 12, 2000

> > At any rate, he removes the capsule and implant intact (mine are

> encapsulated & hard), and respects that I feel the implant a danger

to my

> body. I like the fact that we can disagree, but he respects my

feelings &

> will change a couple things about the surgery to make sure my

wishes are

> granted. That's nice! And he doesn't make me feel like a fool

because I

> believe them to be dangerous! He says there's still a lot more

study to be

> done so he hasn't made a final opinion - only one based on the

medical

> literature he receives. At least he's open-minded.

>

> I have scheduled my surgery for January 29th.

Hi Peggy,

Thanks for keeping us updated on your upcoming surgery. I am keeping

this in my prayers that the money will be there, and am thankful that

your doctor is flexible in granting your wishes and respecting your

decision. If you feel that he is open minded, I hope that he will

take a look at some of the studies that do show that silicone is a

human adjuvant. He may claim that silicone does not damage cellular

structure, but what about what it does to enzyme systems? I'd like

to see his answers to what it does to calcium metabolism, lipids and

minerals, as well as what the chemicals themselves do to the body

(like toulene, benzene, formaldehyde, tin, platinum, etc.) I think

most doctors are too content to spout off the platitudes of

silicone " inertness " that manufacturer-bought studies claimed, and

they don't respect the fact that our bodies are so complex,

biochemically individual, and they DON'T KNOW ALL THE ANSWERS WHEN IT

COMES TO THE IMMUNE SYSEM. The really knowledgeable doctors are the

ones who can honestly say, " We don't know. "

I am also glad that you have a good attitude about this! It is a

difficult thing, but I can tell you from experience that it is nice

to have soft breasts again.

Let us know how things are coming...I hope you are getting lots of

support.

Have a great Christmas!

Love,

Patty

December 12, 2000

Patty, Could you please tell me more about the connection between implants

and calcium metabolism? Thanks, Kay

----- Original Message -----

From: " Patty " <faussettdp@...>

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Sent: Tuesday, December 12, 2000 9:16 AM

Subject: Re: Hello again