Re: Anyone in Minnesota? LOOOONG

[Guest guest]

Hi Sheila:

Yes. I live in the Twin Cities (St.), and my now 6 1/2 month old

daughter wore the CranioCap.

Sheila, I am so sorry to tell you my story, as I know that you were

so filled with hope, but here it is...

I noticed my daughter's plagio almost right after birth. After the

obligatory rounds with a couple of peds who assured me " it will round

out " , " all babies heads are off " , yada, yada, and even went so far as

to say that her tort " will work itself out - just rub it " , I went to

Gillette on my own (we didn't need a referral for our insurance, but

I wouldn't have cared anyway. I figured we would eat mac and cheese

for 3 years if it meant getting our daughter well...)

SO - we go to Gillette's and Dr. Wood. He assures me that yes, my

daughter does have very severe tort/plagio, and that she was at risk

of surgery to release the scm with the olive-sized mass in the center

of it. He said that we would work on the tort first, and then in a

couple of weeks we would talk about the CranioCap.

So, off to PT we go. The first person we worked with we LOVED, but

unfortunately, I guess everyone loved her so we rarely got to work

with her again. Too bad, as the other PT's I saw were " looking

forward to working on a post-surgical SCM release " as they " had never

worked on one before " . How fun for them, I guess.

Well, being a believer in alternative/complimentary therapies - I

took my daughter to: a chiropractor, a rolfer, a cranial osteopath,

and a cranial-sacral therapist. Luckily, the olive-sized mass

released (in one treatment from the cranial-sacral therapist -

mindboggling, I know - but it did happen. I was there.) So back to

PT I go the next week, thrilled that we had avoided surgery. The PT

we had says " Well, it just doesn't look good. The surgery will still

be needed as now the muscle is hard. " You know, the classic move-the-

carrot a little farther away trick. So, I tell her about the other

therapies that we do and how everyone else seems to think it's a

nerve problem, not a muscle problem, and that the Accessory nerve is

for some reason firing all the time and keeping the muscle

contracted - what did she think about that? She looks at me blankly

and says " the accessory nerve? the scm is not innervated by the

accessory nerve. And by the way, I think she's not getting better

because YOU'RE not working with her at home " and picks up her chart

to write on it. Feeling really, really scared that they had alterior

motives, I called the head PT (the good one), and got that

straightened out. (Every anatomy book you read will clearly state

which muscle the accessory nerve innervates. It is the SCM.)

So next, about 4, maybe 5 weeks or so into this ordeal, we see Dr.

Wood again. He checked my daughter, says we do not have to do

surgery (as the good PT said he would) we then moved ahead with the

CranioCap.

On the day we casted for it, my now almost 4 month old and I went

into the room and met the Orthotist. She was cordial enough, but I

started asking questions " Tell me exactly what this helmet is

designed to do " . Thinking I would get an answer such as " Well, as

you can see, the occipitals on the right side are pushed out, which

in turn pulls on the all the other bones... (you see my point). Her

answer " Well,see how her head is not quite round? This helmet will

help make it rounder. " As though I am a 4th-grader. So, I

say " Well, OK. But please explain the design of your product, and

how it affects the growth direction of the cranial bones? " . She

looks at me, and says " What are you talking about? " I say " OK - how

will you get her ears into alignment and get her forehead even? " She

says " I don't know where you get this. I have NEVER, in my 13 years

of working here, ever heard of the ears moving. And while yes, we

HAVE worked on some foreheads, I will not be working on your

daughters. It will stay as it is. "

Sheila, I started to get really scared. My daughter had quite

significant facial asymmetries, and to be honest I couldn't give a

damn about if the back of her head was off a little, if we could fix

her bossed forehead, her " rounded " orbit, her cheeks, etc. so she

could have a normal appearance, this was what I wanted most. And

here they were, telling me it couldn't be done.

So, I go back to the cranial osteopath with this news (we did go

ahead and finish casting that day). I decided with his guidance that

we would give the CranioCap a try, as he was manually manipulating

the skull bones 2 days a week as well. We had already gotten her

ears to move about 3 mm with just his treatments, so we were hoping

that it would be enough if the CranioCap just kept her off the flat

spot at night.

NOPE. The CranioCap was designed with the strap pulling on her tort

side - the side that was already being pulled from the muscle! Just

from a physics standpoint, it was obvious that the strap was on the

wrong side. The design, while keeping her from laying on her flat

spot and therefore helping a little with the flatness, started to

pull the tort side out even more!!! AND the helmet was " digging in "

and leaving an actual vertical dent in the side of her head. (In

fact, it is still there today.)

The facial asymmetry? Well, I was told by the orthotist and by Dr.

Wood that it " would not get better " and that it " would grow with

her " . (I ended up taking her to a Pediatric Chinese Massage

Therapist - he rubbed her tight muscles and the asymmetries all but

melted before my eyes. That, coupled with the DOC Band, has really

helped the facial asymmetries, and you would now have to be a

tort/plagio parent to see it!) But, I digress...

OK, by now I am FRANTIC. I call Dr. Wood, and tell him over the

phone what is happening. I ask that they redo the helmet and put the

strap on the other side. His response? " In some cases the babies'

heads are too misshapen to achieve a good fit " . " We will not re-do

the helmet " . " I am not concerned about the plagio as it will not

cause her any problems, so it is basically cosmetic " . (A plastic

surgeon who does not care about cosmetics. Go figure) " As far as I'm

concerned, this is not a surgical problem and I don't care if she

wears the helmet or not " . " You can go ahead and take the helmet off. "

I cried. I screamed. I was damn scared. BUT - thankfully I called

CT in Madison, WI. We drive the 5 hour drive every week (now every 2

weeks) and my baby is in her second helmet and LOOKS GREAT!

Evidently my daughter was not " too misshapen " to achieve a good fit

with their product. AND it is actually cheaper than the CranioCap.

The CranioCap is $2300, and the PT therapies will run you from (if I

remember correctly) $137 to $200 each week. DOC Band is $2500 and

includes therapy sessions with a VERY experienced and WONDERFUL OT

who, by the way, told me that due to the severity of my daughter's

condition there was NO WAY that she would look as good as she did

(almost no asymmetry) and have the tort issue SOOOOO under control

had I not done all the alternative stuff I had done. (Quite different

than the " evil " PT who told me not to bring her anywhere else!!!)

OK, so that's my saga. Sorry so long. You can email me directly if

you need more info, details, names, numbers, data, etc.

My advise? Keep the appt. Get Dr. Wood's opinion and Dx. THEN,

think about your alternatives.

I realize that MY experience may not be YOURS. You may have a

terrific outcome. BUT, since your baby is already 5 months old, you

might not have the time to " waste " , only to go to the other band

later. OR...maybe there's a STAR Band orthotist here in town?????

Check out your alternatives - for your piece of mind.

Kind regards,

- a mom who has already been there....

> Hi again,

> Since my post this afternoon I have had a couple people tell me NOT

to

> go to Gillette's Children's Clinic for the CranioCap. Has anyone

else

> had any experience with them, good or bad? Who else does this kind

of

> thing in the Twin Cities area??? Tell me your experiences please!

>

> ~Sheila mommy to Amaya 5 months

[Guest guest]

Wow ! I never heard your story before. I'm so sorry. I'm glad

you shared it again though. I hope, what happened to you will help

other parents!!! I really can't believe all the BS you went through.

I'm so happy that you went with the DOC band and your happy with it!

> > Hi again,

> > Since my post this afternoon I have had a couple people tell me

NOT

> to

> > go to Gillette's Children's Clinic for the CranioCap. Has anyone

> else

> > had any experience with them, good or bad? Who else does this

kind

> of

> > thing in the Twin Cities area??? Tell me your experiences please!

> >

> > ~Sheila mommy to Amaya 5 months

[Guest guest]

In a message dated 7/22/2002 11:57:45 PM Eastern Daylight Time, dweston6587@... writes:

a rolfer

,

I am so glad you shared your experience- it really helps a lot of parents considering their options to weigh the pros and the cons. I would rather have more info than less, and i think you wrote a great post!!!!!! I can so relate to the 4th grader bit, they want you to be dumb and clueless and the minute you start using medical terminology, its like who the heck gave you a license to talk about that?!!!! We really do have to be our own health advocates and I really think you are an awesome mom for doing what had to be done for your daughter!!! By the way, what is a rolfer?

' Mom

[Guest guest]

Wow , what an awful story!! I can't believe some of the

things that happened to you. I am so glad that you were able to go

to CT and get help. You are a wonderful mommy, wow, I just can't

believe what you went through!!!

-/Logan 5 1/2 months

PA

> > Hi again,

> > Since my post this afternoon I have had a couple people tell me

NOT

> to

> > go to Gillette's Children's Clinic for the CranioCap. Has anyone

> else

> > had any experience with them, good or bad? Who else does this

kind

> of

> > thing in the Twin Cities area??? Tell me your experiences please!

> >

> > ~Sheila mommy to Amaya 5 months

[Guest guest]

,

Thanks- very interesting! I hate to say it, but can you imagine saying " yes,

I'm a rolfer " !! Haha, sorry just had to put a little (little!!!) humor

there! Thanks for explaining that to me!

' Mom