Re: CranioCap (another orthosis)

[Guest guest]

Hi Pattie:

I just wanted to say that I did not have very good results with the

CranioCap. My daughter had severe plagiocephaly due to inter-uterine

restraint and torticollis. She wore the CranioCap for 3 weeks - it

never fit correctly, even when during the last week I brought her in

EVERY DAY for an adjustment. In fact, I would go so far as to say

that while her head on the flat side was " coming out " , on the side

that was protruding, it started to protrude MORE!!! AND there

started to be a line dug into her skull from the helmet digging in on

the protruding side. I was very scared and very unhappy. Finally, I

talked with the referring Plastic Surgeon, who dismissed me by saying

that my daughter was " too severe " to achieve correction and that he

didn't care if she wore the helmet or not. (Of course, they had

already been paid.) Also, I was told that the costs were " the same "

as Cranial Tech, if not more. But the reality is the CT cost in my

area (St. , MN - we travel 5 hours to Wisconsin for CT) is $2,500

and includes weekly physical therapy, (the therapist even does

kinesio taping, has purchased a ball for my daughter to work with,

and is much more knowledgeable of CMT and plagiocephaly in general

than I encountered with the PT group at Gillette's). The CranioCap

cost $2,300 and weekly PT sessions ran me another $137 to over $200,

depending on who saw my daughter. So, in the end, the CranioCap

could easily cost much more than the DOC band - maybe even twice as

much depending on the therapy costs!

By the way, my daughter has received EXCELLENT correction with the

DOC band. She has " used up " the life of her first band in one month,

(meaning that she has achieved such great correction that we need a

new band to continue!) and we are casting for her second band to

achieve maximum correction, not only to head shape (she will be

completely round), but her ears have moved into alignment (they are

not perfect, but they have moved) and her facial asymmetries have

gotten better - you can really see it in her eyes and in her

jawline. Evidently, she was not " too severe " to receive corretion

with a professionally-designed helmet by a team who is specifically

treating heads and has the knowledge and and equipment to provide and

excellent product and top-knotch service.

My orthotist at Gillette's told me she " had never seen the ears

move " , and both she and the plastic surgeon said they " the facial

asymmetries will not go away - they will grow with her. There is

nothing that we can do. " Also, I was told by both that " she will

never be round. " CT and the DOC band said " She WILL be round, and we

will work on the asymmetries and the ears. They may not be perfect,

but they will move. Also, I brought my daughter to a Pediatric

Chinese Massage Therapist who showed me how to massage the muscles of

the face to release tightness and help the face become more

asymmetrical. After one treatment the asymmetries were noticeably

changed. So much for plastic surgeons in this case.

Just thought I would share my experience, and let the buyers beware.

Kind regards,

, Rhiannon's mom

--- In Plagiocephaly@y..., " littletwisters " <littletwisters@e...>

wrote:

> I found this and thought I would share:

> http://www.gillettechildrens.org/resource-center/pedperspective/def-

> plag.html

>

> One of these I hope to be able to catch up and be able to actively

> participate in the group...until then I will keep on reading the

> emails.

> Thanks,

> Pattie

[Guest guest]

Hi Pattie:

It's great to hear from you again! It's been a while. isn't

in a CranioCap now is he? I tried looking up the link, but it didn't

work for me, bummer! Thanks for posting it though.

Weren't you repositioning ? If so, how is that going? Have

you seen any improvement?

Debbie Abby's mom DOCGrad

MI

--- In Plagiocephaly@y..., " littletwisters " <littletwisters@e...>

wrote:

> I found this and thought I would share:

> http://www.gillettechildrens.org/resource-center/pedperspective/def-

> plag.html

>

> One of these I hope to be able to catch up and be able to actively

> participate in the group...until then I will keep on reading the

> emails.

> Thanks,

> Pattie

[Guest guest]

Patti,

Thanks for sending along that link, it was very informative! I've

never seen a CranioCap before and was surprised to how similar it

looked to the bands. Thanks again!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

--- In Plagiocephaly@y..., " littletwisters " <littletwisters@e...>

wrote:

> I found this and thought I would share:

> http://www.gillettechildrens.org/resource-center/pedperspective/def-

> plag.html

>

> One of these I hope to be able to catch up and be able to actively

> participate in the group...until then I will keep on reading the

> emails.

> Thanks,

> Pattie

[Guest guest]

,

I thought it was you who had the craniocap. Now it is all coming back to me like

a bad dream!

Marci

[Guest guest]

stinamom21 <dweston6587@...> wrote:

Please e-mail me at multiag@... I would love to speak to you about your experiences with the various bands. I am on my first but not sure if I made the right decision??? Thanks, Anastasia

[Guest guest]

,

I'm sorry to hear about your expierence with it. I thought it must

not be that popular because I have been looking at torticollis and

plagiocephaly websites now for over a year and never saw it mentioned

anywhere.

Their article mentions that the FDA has to approve orthosis but never

actually says that theirs has been approved. That made me wonder...

Thanks for sharing your story.

Pattie

[Guest guest]

In a message dated 6/25/2002 7:40:17 PM Eastern Daylight Time, dweston6587@... writes:

but her ears have moved into alignment (they are

not perfect, but they have moved) and her facial asymmetries have

gotten better - you can really see it in her eyes and in her

jawline.

!!!

So glad to read this!! I know this was a concern and you were glad to hear that this can be fixed, and now you know its the truth and nothing but since you have the evidence right in front of you! I hope you send them a before and after pic! I am so happy to hear of Rhiannon's great progress, especially after all that you've been through- way to go Mom!

' Mom

[Guest guest]

Hi Pattie:

When I see CranioCap, I just feel compelled to tell my story, as it

was so bad. Thankfully, everything worked out for me and my little

one, but I feel terrible knowing that some kids will not get the

proper treatment and help they need - especially those that really

need it (the more severe cases). It's a travesty, because they know

about the DOC and Star bands, yet insist that their product works,

when it really doesn't as in my case.

Kind regards,

, Rhiannon's mom

--- In Plagiocephaly@y..., " littletwisters " <littletwisters@e...>

wrote:

> ,

> I'm sorry to hear about your expierence with it. I thought it must

> not be that popular because I have been looking at torticollis and

> plagiocephaly websites now for over a year and never saw it

mentioned

> anywhere.

> Their article mentions that the FDA has to approve orthosis but

never

> actually says that theirs has been approved. That made me wonder...

> Thanks for sharing your story.

> Pattie