Re: Angry/Confused with Cranial Tech

[Guest guest]

Since we haven't dealt with tort, I can't really comment on that. But, I have heard of Physiotherapy Associates. I believe that they are a chain and there are several locations around the Baltimore area. Unfortunately, I can't tell you about your local office; however, if CT has experience with them, I'm guessing that they worked with tort quite a bit.

It's too bad that Columbia land is too far for you. We went to New Beginnings Pediatric Rehab and there were a lot of babies there with helmets. They are just down the street from Star Cranial (so, of course, I always saw babies in STARbands). Our physical therapist did CST with , but I know that babies were there for tort as well. I think that some of them combined appointments. Go for an adjustment and then to PT.

Angry/Confused with Cranial Tech

We went in for our son's scan on Tuesday for them to tell us that they can not band him right now due to his torticollis. He is 5 1/2 months old and has been going to PT since he was 3 1/2 months old for his torticollis. They said to continue PT until he is 7 months and them come back to CT and see if we can band him then. Well by then the main window of opportunity is over! I don't understand why they can't band him with his torticollis. My ped thinks it would help him if they band himm now. My husband refuses to go anywhere but CT for a band even though I have a Hanger place 20 minutes from my house (CT is 25 minutes). He believe they are the best at what they do (even though he has no experience with anywhere else and is going by what others have told him). Anyone else been through this also? I'm not impressed so far with the CT in ndale, VA as the lady there says "I'm not a doctor BUT this is what I think you should do or this is what I think your child has, etc." Well since you're not a doctor, should you really be telling us things to make us worry more as she is stating the worse case scenerio with torticolllis and what can happen in the long run. I understand that but stop saying "I'm not a doctor but..." I guess that's just irritating to hear.Sorry for the babbling...I'm just upset with CT at this point. I don't want to miss the opportunity to band my son at the right time. CT recommended a new PT for me to try in Fairfax called Physiotherapy Associates. Has anyone had experience with them? I have an appointment next Wednesday and I'm hoping for a miracle and they will say go ahead and get your son banded while we work with him.Thanks for listening. :-)

[Guest guest]

Hi,

This sounds odd, and not the experience I've seen others post.

Although I do not always follow all the stories with younger babies,

since my son is older.

At 7 months, the main window is not over. I consider the main window

to go up until around 12 months, or even a little past this depending

on the child. However, this means it is best to start well before

then. Unfortunately, we didn't start until 12 months. Since my son

wasn't severe we were able to do fairly well, but with tons more stress

and time. If your son is 5.5 months, you would start the helmet at 6

months if the process started now, and I always thought this was

considered the ideal age to start. So, your CT experience confuses me

too. Maybe, others have more to say.

How severe is your son's head? Did they say?

-Kathy, mom to , turning 2

julieccarr wrote:

We went in for our son's scan on Tuesday for them to tell us that

they can not band him right now due to his torticollis. He is 5 1/2

months old and has been going to PT since he was 3 1/2 months old for

his torticollis. They said to continue PT until he is 7 months and them

come back to CT and see if we can band him then. Well by then the main

window of opportunity is over! I don't understand why they can't band

him with his torticollis. My ped thinks it would help him if they band

himm now. My husband refuses to go anywhere but CT for a band even

though I have a Hanger place 20 minutes from my house (CT is 25

minutes). He believe they are the best at what they do (even though he

has no experience with anywhere else and is going by what others have

told him). Anyone else been through this also? I'm not impressed so far

with the CT in ndale, VA as the lady there says "I'm not a doctor

BUT this is what I think you should do or this is what I think your

child has, etc." Well since you're not a doctor, should you really be

telling us things to make us worry more as she is stating the worse

case scenerio with torticolllis and what can happen in the long run. I

understand that but stop saying "I'm not a doctor but..." I guess

that's just irritating to hear.

Sorry for the babbling...I'm just upset with CT at this point. I don't

want to miss the opportunity to band my son at the right time. CT

recommended a new PT for me to try in Fairfax called Physiotherapy

Associates. Has anyone had experience with them? I have an appointment

next Wednesday and I'm hoping for a miracle and they will say go ahead

and get your son banded while we work with him.

Thanks for listening. :-)

[Guest guest]

I'm only familiar with CT because of the comments of people in this group.  There is no CT near me, so we go thru Hanger.  It's odd that they won't band because of the torticollis.  Many of the kids in this group have torticollis and wear bands.  I've only heard great things about CT and that they are the leader in this field.  Seems they should know that kids do get banded with torticollis.  Maybe try calling a different CT office or the district/corporate office for more info.  We are happy with Hanger, if you decide to go thru them.  Just be sure that the orthotist has extensive experience in banding.  Hanger makes other orthotics and prosthetics, so it's important to know that the orthotist bands several kids per year.  Good luck!

On Fri, May 21, 2010 at 9:21 AM, julieccarr <julieccarr@...> wrote:

 

We went in for our son's scan on Tuesday for them to tell us that they can not band him right now due to his torticollis. He is 5 1/2 months old and has been going to PT since he was 3 1/2 months old for his torticollis. They said to continue PT until he is 7 months and them come back to CT and see if we can band him then. Well by then the main window of opportunity is over! I don't understand why they can't band him with his torticollis. My ped thinks it would help him if they band himm now. My husband refuses to go anywhere but CT for a band even though I have a Hanger place 20 minutes from my house (CT is 25 minutes). He believe they are the best at what they do (even though he has no experience with anywhere else and is going by what others have told him). Anyone else been through this also? I'm not impressed so far with the CT in ndale, VA as the lady there says " I'm not a doctor BUT this is what I think you should do or this is what I think your child has, etc. " Well since you're not a doctor, should you really be telling us things to make us worry more as she is stating the worse case scenerio with torticolllis and what can happen in the long run. I understand that but stop saying " I'm not a doctor but... " I guess that's just irritating to hear.

Sorry for the babbling...I'm just upset with CT at this point. I don't want to miss the opportunity to band my son at the right time. CT recommended a new PT for me to try in Fairfax called Physiotherapy Associates. Has anyone had experience with them? I have an appointment next Wednesday and I'm hoping for a miracle and they will say go ahead and get your son banded while we work with him.

Thanks for listening. :-)

[Guest guest]

Cranial Technologies' own research would seem to be a good context

for further discussion!

(http://www.cranialtech.com/index.php?

option=com_content & view=article & id=172:research & catid=38:research & Itemid

=113)

Three-quarters of all their patients have some sort of " torticollis " :

http://www.cranialtech.com/images/stories/Research/

sternocleidomastoid_imbalance_versus_congenital_%

20muscular_torticollis.pdf

Age at start of treatment is even more significant to results than

length of treatment:

http://www.cranialtech.com/images/stories/Research/

importance_of_early_recognition_and_treatment_of_deformational_plagiocep

haly_with_orthotic_cranioplasty.pdf

I imagine two possibile explanations coming from the clinician. 1)

They perceive a direct causal connection between the muscle problem

and skull deformity, and on the basis of her own experience believes

that you'll get more bang for your buck by treating the problems

serially. The research would seem to support early intervention, so

you could appeal directly to her bosses (who also happen to be the

researchers) that their findings outweigh her intuition. 2) The

clinician believes that the helmet will interfere with PT. Your

arguments about that being beyond her purview seem valid. I guess CT

hires PTs, which may be part of the problem, but the tort is not what

you hired them to treat (or assess).

--

Thad Launderville

Montpelier, VT

Clara age 2, STARband '10

On May 21, 2010, at 10:21 AM, julieccarr wrote:

> We went in for our son's scan on Tuesday for them to tell us that

> they can not band him right now due to his torticollis. He is 5

> 1/2 months old and has been going to PT since he was 3 1/2 months

> old for his torticollis. They said to continue PT until he is 7

> months and them come back to CT and see if we can band him then.

> Well by then the main window of opportunity is over! I don't

> understand why they can't band him with his torticollis. My ped

> thinks it would help him if they band himm now. My husband refuses

> to go anywhere but CT for a band even though I have a Hanger place

> 20 minutes from my house (CT is 25 minutes). He believe they are

> the best at what they do (even though he has no experience with

> anywhere else and is going by what others have told him). Anyone

> else been through this also? I'm not impressed so far with the CT

> in ndale, VA as the lady there says " I'm not a doctor BUT this

> is what I think you should do or this is what I think your child

> has, etc. " Well since you're not a doctor, should you really be

> telling us things to make us worry more as she is stating the worse

> case scenerio with torticolllis and what can happen in the long

> run. I understand that but stop saying " I'm not a doctor but... "

> I guess that's just irritating to hear.

>

> Sorry for the babbling...I'm just upset with CT at this point. I

> don't want to miss the opportunity to band my son at the right

> time. CT recommended a new PT for me to try in Fairfax called

> Physiotherapy Associates. Has anyone had experience with them? I

> have an appointment next Wednesday and I'm hoping for a miracle and

> they will say go ahead and get your son banded while we work with him.

>

> Thanks for listening. :-)

>

[Guest guest]

Well they feel if they band him now that he won't get good results due to his tort. I don't know since I'm not a doctor but that sounds strange to me since the treat plagio, not tort. I'm just hoping that the new PT I will be seeing on Wednesday will give me some insight on what CT may be talking about. If they think he should be banded right now then I will contact CT and discuss getting him banded now instead of waiting like them want me too. I'm just disappointed that after being at CT on Monday for over an hour getting my son's head scanned (and by that point was crying so much due to them trying to get scans) that we are back to square one again. > We went in for our son's

scan on Tuesday for them to tell us that > they can not band him right now due to his torticollis. He is 5 > 1/2 months old and has been going to PT since he was 3 1/2 months > old for his torticollis. They said to continue PT until he is 7 > months and them come back to CT and see if we can band him then. > Well by then the main window of opportunity is over! I don't > understand why they can't band him with his torticollis. My ped > thinks it would help him if they band himm now. My husband refuses > to go anywhere but CT for a band even though I have a Hanger place > 20 minutes from my house (CT is 25 minutes). He believe they are > the best at what they do (even though he has no experience with > anywhere else and is going by what others have told him). Anyone > else been through this also? I'm not impressed so far with the CT > in ndale, VA as the lady

there says "I'm not a doctor BUT this > is what I think you should do or this is what I think your child > has, etc." Well since you're not a doctor, should you really be > telling us things to make us worry more as she is stating the worse > case scenerio with torticolllis and what can happen in the long > run. I understand that but stop saying "I'm not a doctor but..." > I guess that's just irritating to hear.>> Sorry for the babbling...I'm just upset with CT at this point. I > don't want to miss the opportunity to band my son at the right > time. CT recommended a new PT for me to try in Fairfax called > Physiotherapy Associates. Has anyone had experience with them? I > have an appointment next Wednesday and I'm hoping for a miracle and > they will say go ahead and get your son banded while we work with him.>> Thanks for listening. :-)>

[Guest guest]

that was my thought since a friend started treatment early and ended up having to have 4 docbands and I know even in the 3rd band he was still battling tort and in the 4th was still being treated for it.  however in his 3rd they became more aggressive with the tort, not only doing pt but doing cst and chiro at that point.

 

and I agree, I wouldnt consider prime over at all.  actually I favor trying repo in most cases until 6 mo old and then banding if the need is still there and also feel the prime is up to 12 mo old

 

is his tort severe?  maybe between his young age and a severe case of tort they are worried that even the helmets small amount of weight could be a hinderance to therapy?

On Sat, May 22, 2010 at 2:50 PM, Carr <julieccarr@...> wrote:

 

Well they feel if they band him now that he won't get good results due to his tort.  I don't know since I'm not a doctor but that sounds strange to me since the treat plagio, not tort.  I'm just hoping that the new PT I will be seeing on Wednesday will give me some insight on what CT may be talking about.  If they think he should be banded right now then I will contact CT and discuss getting him banded now instead of waiting like them want me too.  I'm just disappointed that after being at CT on Monday for over an hour getting my son's head scanned (and by that point was crying so much due to them trying to get scans) that we are back to square one again. 

> We went in for our son's scan on Tuesday for them to tell us that

> they can not band him right now due to his torticollis. He is 5 > 1/2 months old and has been going to PT since he was 3 1/2 months > old for his torticollis. They said to continue PT until he is 7

> months and them come back to CT and see if we can band him then. > Well by then the main window of opportunity is over! I don't > understand why they can't band him with his torticollis. My ped

> thinks it would help him if they band himm now. My husband refuses > to go anywhere but CT for a band even though I have a Hanger place > 20 minutes from my house (CT is 25 minutes). He believe they are

> the best at what they do (even though he has no experience with > anywhere else and is going by what others have told him). Anyone > else been through this also? I'm not impressed so far with the CT

> in ndale, VA as the lady there says " I'm not a doctor BUT this > is what I think you should do or this is what I think your child > has, etc. " Well since you're not a doctor, should you really be

> telling us things to make us worry more as she is stating the worse > case scenerio with torticolllis and what can happen in the long > run. I understand that but stop saying " I'm not a doctor but... "

> I guess that's just irritating to hear.>> Sorry for the babbling...I'm just upset with CT at this point. I > don't want to miss the opportunity to band my son at the right > time. CT recommended a new PT for me to try in Fairfax called

> Physiotherapy Associates. Has anyone had experience with them? I > have an appointment next Wednesday and I'm hoping for a miracle and > they will say go ahead and get your son banded while we work with him.

>> Thanks for listening. :-)>

-- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010

[Guest guest]

When we first took to CT at 3 1/2 months old they said he had severe plagio and tort. I think he has come a long way with both in 2 months now that he can sit on his own and stay on his tummy during the day and at night. His head has gotten less flat, as far as I can see and he now will turn his head the other way but CT still thinks he's pretty bad off. I guess we'll see once I take him to the PT that CT recommended. I always thought or was told that between ages 4-7 months is the best time to band a child so I'm nervous that we will be at the end of the optimal time. I really only want to go with one band though as our insurance will not pay for the costs and I can't imagine paying over $7000 for 2 bands as CT recommended he gave (at his first visit back in March). Maybe it'll be better for him later as hopefully he'll

get better results with just one band as an older infant.> We went in

for our son's scan on Tuesday for them to tell us that > they can not band him right now due to his torticollis. He is 5 > 1/2 months old and has been going to PT since he was 3 1/2 months > old for his torticollis. They said to continue PT until he is 7 > months and them come back to CT and see if we can band him then. > Well by then the main window of opportunity is over! I don't > understand why they can't band him with his torticollis. My ped > thinks it would help him if they band himm now. My husband refuses > to go anywhere but CT for a band even though I have a Hanger place > 20 minutes from my house (CT is 25 minutes). He believe they are > the best at what they do (even though he has no experience with > anywhere else and is going by what others have told him). Anyone > else been through this also? I'm not impressed so far with the CT > in ndale, VA

as the lady there says "I'm not a doctor BUT this > is what I think you should do or this is what I think your child > has, etc." Well since you're not a doctor, should you really be > telling us things to make us worry more as she is stating the worse > case scenerio with torticolllis and what can happen in the long > run. I understand that but stop saying "I'm not a doctor but..." > I guess that's just irritating to hear.>> Sorry for the babbling...I'm just upset with CT at this point. I > don't want to miss the opportunity to band my son at the right > time. CT recommended a new PT for me to try in Fairfax called > Physiotherapy Associates. Has anyone had experience with them? I > have an appointment next Wednesday and I'm hoping for a miracle and > they will say go ahead and get your son banded while we work with him.>> Thanks for listening.

:-)>

-- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010

[Guest guest]

Ka-ching!

Still, it's hard for me to believe that muscle problems would

preclude the documented benefit of early treatment. It's as if to

say that helmet is weaker than muscle in stabilizing the skull

plates. Maybe some lesser, ill-fitting helmet might lose it's

gravity-driven, subtle effects, but I would expect the skull plates

to move precisely as a DOC band directs.

It seems just as reasonable to assume that the bones are perpetuating

the muscle deformity as vice-versa. Take down a skull prominence,

and the muscle attached will slacken. Wouldn't THAT best be done

earlier in development, so it knows it doesn't need to grow so long?

Perhaps the flat spot is the problem. I guess you could say, all

helmets are " passive " in the void space. Instead of popping out a

new growth ridge, maybe something higher or lower on the skull goes

out of whack instead, when the tort has not been resolved?

--

Thad Launderville

Montpelier, VT

Clara age 2, STARband '10

On May 22, 2010, at 9:02 PM, Carr wrote:

> I really only want to go with one band though as our insurance will

> not pay for the costs and I can't imagine paying over $7000 for 2

> bands as CT recommended he gave (at his first visit back in March).

On May 22, 2010, at 11:57 AM, Thad Launderville wrote:

> I imagine two possibile explanations coming from the clinician. 1)

> They perceive a direct causal connection between the muscle problem

> and skull deformity, and on the basis of her own experience believes

> that you'll get more bang for your buck by treating the problems

> serially.