Does Cranial-Sacral therapy work? Need advice.

[Guest guest]

My 7 month old son has torticollis and plagio. I have been thru a

CT, MRI, and skull x-rays. Everything has come back normal, except

for the plagio and congential tort. Currently I have only found 1

place in Louisiana that I can get a helmet at. It would be a

STARband, however the only neuro that refers there said Zayne's head

was not severe enough for banding. I disagree, but don't know what

to do from here. Hanger will not see me w/o a referral from this

doctor. I'm so discouraged at this point. I drove to the neuro 3

times, which is a 2 hour drive from here, for basically nothing. I

have wasted 2 months of critcal time and I'm still nowhere with

getting his head fixed. The closest CT clinic is a 6 hour drive

(one way). I really can't take off from work to bring Zayne that

far weekly or bi-weekly. I won't to, but just can't.

I'm checking on Angelflight, but in the meantime I wanted to find

out if anyone had any experience with Crainal-Sacral therapy? Is it

a waste of time, will it help?

If you are don't mind look at Zayne's pics and let me know what you

think. Does it look like it will require a helmet or not? Will

therapy be enough? The most noticable problems he has is uneven

ears and a bulge by his right ear.

I'm so sick of hearing " he will grow hair " . Yeah, but he may loose

it one day too! It's about so much more than that. Thanks for any

advice and for reading this very long post.

Becky

Zayne

[Guest guest]

Becky,

I think I remember you posting about Zayne a while ago. I am so

sorry you are having such difficulty with the neuro referring you

for a helmet. I have heard that you can get a prescription for a

helmet from your pediatrician, or a specialist such as a neuro,

craniofacial specialist, or plastic surgeon. You may have to change

peds, or request a referral to a different type of specialist to

procure a prescription, which I think is all you would need for

Hanger to see you and Zayne. One parent here in the group brought

in a lot of info on plagio and treatment from this site, and before

and after photos, to educate her ped, into feeling comfortable

prescribing the band without having to deal with a difficult

specialist.

I looked at Zayne's photos. The shots of the back of his head do

show some ear asymmetry, but the shot of the top of his head is the

most helpful to me in evaluating his plagio asymmetry. I would

really like to see more top view shots, that may show whether or not

there is any forehead bossing, or may show the degree of ear

misalignment. Just from the photos you posted, I think that Zayne

would benefit from a helmet or band.

Have you tried to contact the major hospitals in New Orleans, in

their cranio facial or plastic surgery department to see if there

are any local helmets they are making there? I'm going to try some

internet searches to see if I can find anything out about new

options in Louisiana.

As far as cranio-sacral goes, there are a few parents in the group

with experience, so hopefully they will reply. I have read that

they thought it helped, or it didn't help at all, but it certainly

didn't hurt.

I hope you can get a referral from someone, and I'll post if I find

anything out.

Christie (Mom to Repo'd Remy)

> My 7 month old son has torticollis and plagio. I have been thru a

> CT, MRI, and skull x-rays. Everything has come back normal,

except

> for the plagio and congential tort. Currently I have only found 1

> place in Louisiana that I can get a helmet at. It would be a

> STARband, however the only neuro that refers there said Zayne's

head

> was not severe enough for banding. I disagree, but don't know

what

> to do from here. Hanger will not see me w/o a referral from this

> doctor. I'm so discouraged at this point. I drove to the neuro

3

> times, which is a 2 hour drive from here, for basically nothing.

I

> have wasted 2 months of critcal time and I'm still nowhere with

> getting his head fixed. The closest CT clinic is a 6 hour drive

> (one way). I really can't take off from work to bring Zayne that

> far weekly or bi-weekly. I won't to, but just can't.

>

> I'm checking on Angelflight, but in the meantime I wanted to find

> out if anyone had any experience with Crainal-Sacral therapy? Is

it

> a waste of time, will it help?

>

> If you are don't mind look at Zayne's pics and let me know what

you

> think. Does it look like it will require a helmet or not? Will

> therapy be enough? The most noticable problems he has is uneven

> ears and a bulge by his right ear.

>

> I'm so sick of hearing " he will grow hair " . Yeah, but he may

loose

> it one day too! It's about so much more than that. Thanks for any

> advice and for reading this very long post.

>

> Becky

> Zayne

[Guest guest]

Hi Becky,

My daughter had torticollis and plagio (diagnosed at 2.5

months, now she's 17 months and the issues are mostly resolved).

I don't know if Cranial-Sacral therapy works. I hear many people talk

about positive effects, but I don't know of any clinical studies that

prove this. However, there are clinical studies proving that skull

molding helmets do work and don't harm normal cranial growth etc.

It really sounds to me like your instincts are to pursue treatment. I

would trust those and keep looking into ways of making it happen (it

sounds to me like you are doing a great job researching different

options already). A few suggestions that come to mind are:

-Think of the neurosurgeon as the specialist required to rule out more

serious conditions like craniosynostosis. He's done that, so you can

now safely pursue treatement for plagiocephaly without him. Cranial

Technologies says that Pediatricians can write prescriptions for their

helmets. Could yours write one for the Star Band clinic near you? What

about asking the Star Band clinic for patient's parents references and

asking them who wrote their prescriptions.

-I noticed that several members of this group who travel long

distances make it work by traveling on a Sunday, going to a monday

morning appointment and traveling back that same day -thus minimizing

the time out of work to one day every two weeks. I traveled for

's helmet ( " just " 2.5 hours each way) but it did require a

whole work day off. While the idea seemed very daunghting before we

got into routine, once we did it went very well.

-You might try traveling to the distant Cranial Tech clinic for a free

evaluation to test out what the travel might be like - as well as to

speak with some experts who have a lot of experience evaluating the

severity of plagio (probably more than the neurosurgeon who's main

concerns have to be for the brain itself - rather than the skull shape).

-Is Zayne in a physical therapy program for tort? The neck stretches

needed to address the tort are critically important for addressing the

ear misalignment you mentioned as well as other facial assymetries

that might be there. We use Early Intervention (available in most

states) and are very happy with the therapy has recieved.

I think that if you keep working at this that you will find a solution

and that it will all be worth it.

Best Wishes,

(mom to , NOPCO dropout, DOC grad '03)

> My 7 month old son has torticollis and plagio. I have been thru a

> CT, MRI, and skull x-rays. Everything has come back normal, except

> for the plagio and congential tort. Currently I have only found 1

> place in Louisiana that I can get a helmet at. It would be a

> STARband, however the only neuro that refers there said Zayne's head

> was not severe enough for banding. I disagree, but don't know what

> to do from here. Hanger will not see me w/o a referral from this

> doctor. I'm so discouraged at this point. I drove to the neuro 3

> times, which is a 2 hour drive from here, for basically nothing. I

> have wasted 2 months of critcal time and I'm still nowhere with

> getting his head fixed. The closest CT clinic is a 6 hour drive

> (one way). I really can't take off from work to bring Zayne that

> far weekly or bi-weekly. I won't to, but just can't.

>

> I'm checking on Angelflight, but in the meantime I wanted to find

> out if anyone had any experience with Crainal-Sacral therapy? Is it

> a waste of time, will it help?

>

> If you are don't mind look at Zayne's pics and let me know what you

> think. Does it look like it will require a helmet or not? Will

> therapy be enough? The most noticable problems he has is uneven

> ears and a bulge by his right ear.

>

> I'm so sick of hearing " he will grow hair " . Yeah, but he may loose

> it one day too! It's about so much more than that. Thanks for any

> advice and for reading this very long post.

>

> Becky

> Zayne

[Guest guest]

Hi Becky,

Sorry you are having such a rough time getting Zayne treatment. I'm

not too sure about the cranial sacral therapy, thought the members

I've seen post about it seemed happy. By looking at Zayne's pics, I

also think he'd definitely benefit from a band. We have many

members that have used Hanger bands, though I'm not sure about the

same location. You do not need a script from a neuro, and if you

are certain you'd like to band him you can get one from your ped. I

really sense from your post that you'd like to see him banded, so

have you tried just demanding a script? If you've been repoing for

so long and are actively working to resolve the tort than you're

doing your part, and if you still aren't seeing results I think you

have a good argurment against your neuro or ped. Does this Hanger

absolutely require the script to be from that specific doctor?? I

didn't know that was possible if that's the case! I'd agree

w/'s post completely and also think that contacting your

nearest CT would be a good idea. You can ask them of any docs in

your area who have written scripts for bands and that might be a

good idea of where to start. Time wise, your best bet is probably

trying to demand one from your ped though. Good luck!

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> My 7 month old son has torticollis and plagio. I have been thru a

> CT, MRI, and skull x-rays. Everything has come back normal,

except

> for the plagio and congential tort. Currently I have only found 1

> place in Louisiana that I can get a helmet at. It would be a

> STARband, however the only neuro that refers there said Zayne's

head

> was not severe enough for banding. I disagree, but don't know

what

> to do from here. Hanger will not see me w/o a referral from this

> doctor. I'm so discouraged at this point. I drove to the neuro

3

> times, which is a 2 hour drive from here, for basically nothing.

I

> have wasted 2 months of critcal time and I'm still nowhere with

> getting his head fixed. The closest CT clinic is a 6 hour drive

> (one way). I really can't take off from work to bring Zayne that

> far weekly or bi-weekly. I won't to, but just can't.

>

> I'm checking on Angelflight, but in the meantime I wanted to find

> out if anyone had any experience with Crainal-Sacral therapy? Is

it

> a waste of time, will it help?

>

> If you are don't mind look at Zayne's pics and let me know what

you

> think. Does it look like it will require a helmet or not? Will

> therapy be enough? The most noticable problems he has is uneven

> ears and a bulge by his right ear.

>

> I'm so sick of hearing " he will grow hair " . Yeah, but he may

loose

> it one day too! It's about so much more than that. Thanks for any

> advice and for reading this very long post.

>

> Becky

> Zayne

[Guest guest]

Hi Becky,

I am so sorry that you are still struggling with treatment for

Zayne. It is so frustrating to hear that you are not getting the

help that you need from the medical communtiy in your area.

As for the CST, I don't know how much it would work for the plagio.

I have heard great things for the tx of tort, but I don't understand

how it could truly help the skull itself.

Best wishes!!!!

> My 7 month old son has torticollis and plagio. I have been thru a

> CT, MRI, and skull x-rays. Everything has come back normal, except

> for the plagio and congential tort. Currently I have only found 1

> place in Louisiana that I can get a helmet at. It would be a

> STARband, however the only neuro that refers there said Zayne's

head

> was not severe enough for banding. I disagree, but don't know what

> to do from here. Hanger will not see me w/o a referral from this

> doctor. I'm so discouraged at this point. I drove to the neuro 3

> times, which is a 2 hour drive from here, for basically nothing. I

> have wasted 2 months of critcal time and I'm still nowhere with

> getting his head fixed. The closest CT clinic is a 6 hour drive

> (one way). I really can't take off from work to bring Zayne that

> far weekly or bi-weekly. I won't to, but just can't.

>

> I'm checking on Angelflight, but in the meantime I wanted to find

> out if anyone had any experience with Crainal-Sacral therapy? Is

it

> a waste of time, will it help?

>

> If you are don't mind look at Zayne's pics and let me know what you

> think. Does it look like it will require a helmet or not? Will

> therapy be enough? The most noticable problems he has is uneven

> ears and a bulge by his right ear.

>

> I'm so sick of hearing " he will grow hair " . Yeah, but he may loose

> it one day too! It's about so much more than that. Thanks for any

> advice and for reading this very long post.

>

> Becky

> Zayne