Re: Torticollis not improving-help

April 26, 2004

Hi Ann,

Is there any way that you can up the PT to once or even twice a

week? Going every other week may not be enough for her. My son

started off with PT at 2x a week but still didn't show improvement

until about 2 months into therapy. Now though he has almost full

range, but we go to PT still for other issues. Maybe if you spoke

with the doctor that suggested the PT and see what he/she says about

going at least once, if not twice a week.

Good luck and keep us posted!

Kim

mom to Kaela (9) and Jaxson 9 mo tort/CranioCap grad 04/09/04

> Good day to all.

> My daughter was born with tort on the left and then got plagio on

> right side of head from it. She is 9 months (diag very late) and

has

> had PT for 4 wks now and a Cranio Cap x 3wks. Her tort does not

seem

> to be improving at all. We go to PT every other wk and she does

> exercises every day (which she fights tooth and nail). The PT

thinks

> her head " tilt " is getting better but the range of motion is not.

> She still sleeps on her right side ALL the time. I am concerned

that

> she will not have her tort resolved before she is out of helmet and

> all our effort will be down the drain. I voiced my concerns at her

> last PT apt but felt I was just put off. I will ask again this wk

> and demand a better plan but until then-

>

> Has anyon else had similar problems? Does there come a point where

> they do surgery or something? Help!

> Thanx

>

> Ann

>

> Hope-32 wkers-6/29/03

April 26, 2004

I agree with Kim that maybe you should contact the doc and see if you

can get PT more often. We've been going once a week. Usually they

don't consider surgery until after a year old. Botox shots are also

used sometimes to help stretch a muscle that is still tight.

Connor (6 mo. - tort/plagio) casting tomorrow!

St. Louis, Mo.

> Good day to all.

> My daughter was born with tort on the left and then got plagio on

> right side of head from it. She is 9 months (diag very late) and has

> had PT for 4 wks now and a Cranio Cap x 3wks. Her tort does not seem

> to be improving at all. We go to PT every other wk and she does

> exercises every day (which she fights tooth and nail). The PT thinks

> her head " tilt " is getting better but the range of motion is not.

> She still sleeps on her right side ALL the time. I am concerned that

> she will not have her tort resolved before she is out of helmet and

> all our effort will be down the drain. I voiced my concerns at her

> last PT apt but felt I was just put off. I will ask again this wk

> and demand a better plan but until then-

>

> Has anyon else had similar problems? Does there come a point where

> they do surgery or something? Help!

> Thanx

>

> Ann

>

> Hope-32 wkers-6/29/03

April 26, 2004

Ann,

I also agree w/ the others that you need to up the PT. How many

times a day at home do you do it? Is there any way you can change

your approach at home so that she doesn't fight it? By that I mean

keeping the same exercises, just modifying how you go about doing it

w/ her so that she doesn't catch on as to what you are doing? And

also, is it possible that you can keep her in the CranioCap longer

in order to help out w/ the PT and to improve the tort? Since it's

a passive helmet, I wouldn't see the harm in it, and it would

prevent the flattening on her head again if her tort issue is not

resolved by the time they say she can quit officially wearing it.

Then maybe you can ask if she can keep wearing it for preventative

measures? Just a thought.

Good luck,

~Amy, mommy to Jaden, plagio/mild tort, started CranioCap 4/23/04

> Good day to all.

> My daughter was born with tort on the left and then got plagio on

> right side of head from it. She is 9 months (diag very late) and

has

> had PT for 4 wks now and a Cranio Cap x 3wks. Her tort does not

seem

> to be improving at all. We go to PT every other wk and she does

> exercises every day (which she fights tooth and nail). The PT

thinks

> her head " tilt " is getting better but the range of motion is not.

> She still sleeps on her right side ALL the time. I am concerned

that

> she will not have her tort resolved before she is out of helmet

and

> all our effort will be down the drain. I voiced my concerns at her

> last PT apt but felt I was just put off. I will ask again this wk

> and demand a better plan but until then-

>

> Has anyon else had similar problems? Does there come a point where

> they do surgery or something? Help!

> Thanx

>

> Ann

>

> Hope-32 wkers-6/29/03

April 26, 2004

Hello Ann

My daughter Willow also had torticollis. 4wks is really no time if

measured in in tort time. I agree with everyone else as far as

upping pt sessions. We also went 2ce a wk for the first few months

and it does take time to see results. My daughter's tort is

resolved, but it took about 9months to get here. It can be very

frustrating, but there is a light at the end of that tunnel believe

me. Maybe you can keep your daughter in the CranioCap a little

longer as a prevention. Good luck and keep us updated on the pt.

Sandy Willow's Mom Torticollis resolved 04/04 / CranioGermany

Grad02/04 / mild lowtone

> Good day to all.

> My daughter was born with tort on the left and then got plagio on

> right side of head from it. She is 9 months (diag very late) and

has

> had PT for 4 wks now and a Cranio Cap x 3wks. Her tort does not

seem

> to be improving at all. We go to PT every other wk and she does

> exercises every day (which she fights tooth and nail). The PT

thinks

> her head " tilt " is getting better but the range of motion is not.

> She still sleeps on her right side ALL the time. I am concerned

that

> she will not have her tort resolved before she is out of helmet

and

> all our effort will be down the drain. I voiced my concerns at her

> last PT apt but felt I was just put off. I will ask again this wk

> and demand a better plan but until then-

>

> Has anyon else had similar problems? Does there come a point where

> they do surgery or something? Help!

> Thanx

>

> Ann

>

> Hope-32 wkers-6/29/03

April 27, 2004

Hello,

My daughter has tort and was treated for plagio with a helmet

last year. She is now almost 18 months old and she still sees a

therapist once every 2 weeks.

One thing that is very difficult about tort is that it takes a long

time to really resolve (not just the tilting and the range of motion,

but other issues such as preferring the hand that the head was turned

towards and favoring one leg, etc). I really think you have to settle

in wiht a long view on the treatment - don't think it will be overwith

quickly (whenever I though that I got very frustrated)- think it is

something that you have to keep at for a long period of time. There is

another group where parents of children with tort discuss these

issues all the time. Its

torticolliskids/

I found it very helpful to read the book called Torticollis, but

Karmel-Ross (available on Amazon). It helps you to get an overview of

torticollis and the available therapies for it. You might want to get

a copy.

We found that we could get to do her stretches by doing crazy

things to distract her like wearing sunglasses (we wore them so she'd

look at them), placing a very attractive toy - like music box with a

dancing clown we had to the side she needed to rotate too, and I also

found that she was very complient while drinking a bottle soI used to

do excersizes then -she used to kind of zone out and let me stretch her.

Best Wishes,

, mom to tort and plagio mostly resolved.