Re: New member - Please HELP !

[Guest guest]

Hi Marcie & welcome to our group!!

We're glad to have you. Wow, we sure have had a lot of posts just

this month about your Seattle area as well as the Children's Hospital

& their helmet. I am sure those members will chime in to give you

their personal opinion & success stories.

At 6 mos old, you could still get very good correction in a passive

helmet like the one at Childrens Hospital. Especially if Leyton's (I

love the name!) plagio is mild. There was another post just this

morning saying the only other places where a STARband & DOCband are

available are many miles away (STARband in Portland, DOCband in AZ or

CA). That's unfortunate there aren't any other options closer to

your area.

You've had great results with repositioning though! 50%?? Way to

go! Repositioning can be very difficult, esp. when the child has

tort as well. Keep that up!!

As for the physical therapy, that would scare me if I called about it

& the place said they " had to read up on it " first!!! YIKES....you're

doing a good thing by looking for somewhere else. I'm hoping again

that one of our Seattle area members will know of somewhere good to

refer you to. I'm sure , another moderator in our group, will

offer you good tort. stretches & exercises to do in the mean time

with Leyton.

Welcome again, please keep us posted on your decision.

Debbie Abby's mom DOCGrad

MI

> Hello Everyone,

> I am new to the group, and so thankful for all this information! I

am

> a bit overwhelmed and don't know where to start. Here is our

> story...at 2 months we started repositioning for plagio and at 5

> months referred to childrens hospital cranialfacial in Seattle Wa.

> to evaluate his head shape.

> They diagnosed Leyton with torticollis and said his plagio is mild

> and left it up to us to decide to band him or not. (Looking back at

> pictures I see his head tilt to the left from almost day one.) I

> also need to start physical therapy. Here are a few of my

questions...

>

> How do i find a good physical therapist? seems in our town, just

> north of Seattle, there are not too many people who know how to

treat

> this...one place told me they could 'do it' but would need to 'read

> up on it'.

> What sort of band or helmet do I choose? Childrens has their own

> helmet, which i didn't like (has anyone used this and been happy

with

> it?) DOCband would mean flying to Arizona, and STARband would be a

6

> hour drive to Portland. Does anyone know of any closer or have any

> advice about helmets?

> Has anyone treated mild plagio without helmeting and had good

sucess

> beyond the 6 month mark? We are at 5 and a half months now and with

> the repositioning that my husband and I have done we have seen

about

> 50% improvement.

> I have many more questions but will start with these- any advise is

> welcome - I need knowlege !!!! Thank you all for being here!!!! I

> have read many postings and looked at all the pictures- you are all

> wonderful loving parents!!

>

> Thank you -

> Marcie

> Leyton's mom

[Guest guest]

Hi Marcie, and welcome to the group! I see that our other Marci has

already given you an excellent reply. Hopefully our other Seattle

members will reply soon too, to give you their opinions. Have you

checked into EI (early intervention) for your state to see if they

have a PT they could recommend to you? Maybe check out Orthomerica's

website http://orthomerica.com and go to their 'find an orthotist'

page to see if there is someone closer to you that will do the

STARband if you decide to go with that option. I'm sorry I couldn't

be of more help. Good luck to you and Leyton, be sure to let us know

what you find out.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Hello Everyone,

> I am new to the group, and so thankful for all this information! I

am

> a bit overwhelmed and don't know where to start. Here is our

> story...at 2 months we started repositioning for plagio and at 5

> months referred to childrens hospital cranialfacial in Seattle Wa.

> to evaluate his head shape.

> They diagnosed Leyton with torticollis and said his plagio is mild

> and left it up to us to decide to band him or not. (Looking back at

> pictures I see his head tilt to the left from almost day one.) I

> also need to start physical therapy. Here are a few of my

questions...

>

> How do i find a good physical therapist? seems in our town, just

> north of Seattle, there are not too many people who know how to

treat

> this...one place told me they could 'do it' but would need to 'read

> up on it'.

> What sort of band or helmet do I choose? Childrens has their own

> helmet, which i didn't like (has anyone used this and been happy

with

> it?) DOCband would mean flying to Arizona, and STARband would be a

6

> hour drive to Portland. Does anyone know of any closer or have any

> advice about helmets?

> Has anyone treated mild plagio without helmeting and had good

sucess

> beyond the 6 month mark? We are at 5 and a half months now and with

> the repositioning that my husband and I have done we have seen

about

> 50% improvement.

> I have many more questions but will start with these- any advise is

> welcome - I need knowlege !!!! Thank you all for being here!!!! I

> have read many postings and looked at all the pictures- you are all

> wonderful loving parents!!

>

> Thank you -

> Marcie

> Leyton's mom

[Guest guest]

Hi Marcie,

Welcome to the group! I posted a response to you sometime ago and it never showed up that I can see - Sorry!

You can start looking for physical therapists at the Children's Hospital you referred to. My neuro gave me no direction on this so I had to go digging for information just by calling all over. I found out that most hospitals (not just a childrens hospital) have a pediatric outpatient physical therapy dept. or can probably refer you to a hospital that does. You can call and ask if they have treated infants with torticollis. I called one private practice and they thought I said "tuberculosis"- when I told them that it was torticollis, she put me on hold and said they would have to look it up! Well, that was not what I was looking for, and I would recommend to you that you don't want someone learning about how to treat tort while working on your child and possibly losing valuable time and effort. A great suggestion that Niki offered was the EI program- Early Intervention that is at no cost to you if your child qualifies- tort in itself is a shoo in, but they evaluate the child and there must be a 25% delay to be eligible. Please also check into www.torticolliskids for more tips and advice- you may find a mom or dad from your area that can refer you to someone close by. I will attach a link of exercises to show you the idea of what your trying to achieve in resolving tort. On the band, we decided to do it and was in one by 5 months- a few reasons were that we found it close to impossible to reposition with the tort springing him back to the left, almost immediately, daycare, facial asymmetry to be brief. We used the DOC band and had about 95% correction- the facial asymmetry is gone and the ears are in alignment, although one will always be smaller. Really do your homework and decide what's best for your child, every case is not alike, so you have to do what you feel is the best option.

Please feel free to email me anytime. Good luck and please keep us posted!

' Mom

Stretches/Holds