Re: PT only advises and evaluates?

[Guest guest]

,

I went to a private PT as Early Intervention said they would only

recommend PT if my daughter has severe development delays due to the

tort.

My PT is also an MD. She showed me stretches that I need to do with

her at home. The PT doesn't do anything aggressive during the

appointment except to evaluate her.

Unless yo have problems doing the stretches yourself, then the PT

will do it for you.

Hooi-Imm

>

> Ok, my PT through Early Intervention finially started last week

after

> 2 months!!! I call it late intervention now!

>

> Anyway, she just assessed her progress and advised us on little

> things to work on over the next week. She did not do any aggessive

> stretching or anything. Is this the way it works? I want her to

> stretch and really work on .

>

> Is this because it is through Early Intervention? If she went to a

> private PT would they actually stretch her? I am very confused. I

> feel like she is coming to monitor what I am doing, I don't need

> that. In fact I bet I know more about Tort than she does!!

>

> She comes again today and if she just looks at again and

> moves her around a little, then I am done. I wasted 2 months

waiting

> for this!!!

>

> Am I crazy? What do your kids PT's do at their appt's?

>

>

> Mom to 6 months Tort/Plagio/DOC band

>

[Guest guest]

,

The privat PT that my son goes to does stretch him. His sessions are

apx. 30 mins. She is not stretching him the entire 30 mins but will

stretch him most of the time as well as talk to me about his

progress. I am not sure if your daugher has right or left tort but

the stretch should be done towards the opposite side of the tilt. You

can do the stretches yourself too. I find having my son lay down is

best way and then you tilt their head so that you are trying to get

her ear to touch her shoulder. The other stretch is if she is looking

straight ahead you turn her head all the way to the left and then all

the way to the right as if you are trying to get her to look behind

her without moving her body.

I hope I explained this correctly or so you understand.

My son is now 13mo so we are working more on strengthening exercises.

Let me know if I can be of any more help.

Best to luck to you.

Mom to CJ - 13mo

>

> Ok, my PT through Early Intervention finially started last week

after

> 2 months!!! I call it late intervention now!

>

> Anyway, she just assessed her progress and advised us on little

> things to work on over the next week. She did not do any aggessive

> stretching or anything. Is this the way it works? I want her to

> stretch and really work on .

>

> Is this because it is through Early Intervention? If she went to a

> private PT would they actually stretch her? I am very confused. I

> feel like she is coming to monitor what I am doing, I don't need

> that. In fact I bet I know more about Tort than she does!!

>

> She comes again today and if she just looks at again and

> moves her around a little, then I am done. I wasted 2 months

waiting

> for this!!!

>

> Am I crazy? What do your kids PT's do at their appt's?

>

>

> Mom to 6 months Tort/Plagio/DOC band

>

[Guest guest]

We started with private PT while waiting for our Early Intervention to

start. Our private PT apointments were an hour long and at least half

was strecthing and getting Raden into various positions to facilitate

movement. The therapist was very focused on his neck muscles and doing

head measurements.

We start Early Intervention PT next week. I am familiar with the

process since my oldest son had Early Intervention PT a few years ago

as a toddler. I find at these sessions they also do stretching, motor

planning and lots of instruction for the parent to continue the

exercise during the rest of the week. It is more a family approach.

-Crystal

Mom to Raden, 9 months with tort and plagio

[Guest guest]

,

My PT (from the hospital) does stretches with my son when we go to

appointments. She also gives me new stretches to do with him at

home. She will get me to do some of the stretches in her presence to

make sure I am doing them right, but she will also do them. However

my appointments are bi-weekly so her appointments are obviously not

enough to fix his Tort. Anyway, hope this helps.

Jen

> >

> > Ok, my PT through Early Intervention finially started last week

> after

> > 2 months!!! I call it late intervention now!

> >

> > Anyway, she just assessed her progress and advised us on little

> > things to work on over the next week. She did not do any

aggessive

> > stretching or anything. Is this the way it works? I want her to

> > stretch and really work on .

> >

> > Is this because it is through Early Intervention? If she went to

a

> > private PT would they actually stretch her? I am very confused. I

> > feel like she is coming to monitor what I am doing, I don't need

> > that. In fact I bet I know more about Tort than she does!!

> >

> > She comes again today and if she just looks at again

and

> > moves her around a little, then I am done. I wasted 2 months

> waiting

> > for this!!!

> >

> > Am I crazy? What do your kids PT's do at their appt's?

> >

> >

> > Mom to 6 months Tort/Plagio/DOC band

> >

>

[Guest guest]

Our PT through Indiana's First Steps programs works actively with Johann once a week (he has some motor skills delays because of tort) and is even more aggressive on Johann's stretches than we are. In fact, there is one or two stretches she's shown me that she does, but suggested I only do them if I feel comfortable because they are more difficult to do correctly. We purposely chose a PT who had experience working with tort so that may help. -, mom to Johann, 1 year old!

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[Guest guest]

:

I had such a bad experience with my first PT that I had to write

you. My daughter (6.5 months old now) was diagnosed with 'mild'

toricollis at only a few weeks old. We actually had our first appt

with a PT our pediatrician recommended when my DD was 1 month old.

I thought " great, no sweat, we've caught this way early and she'll

be fine. " The PT concurred with the pediatrician saying my DD's

case was mild and recommended we see her every other week. She gave

us 3 stretches to do. My daughter, Rowan, never liked the stretches

and i found it was easiest to do them during her naps throughout the

day. At two months old, my husband and I noticed my daughter had

developed plagiocephaly on top of the tort. The PT never said a

word about it, even when we pointed it out. The pedi said it would

go away with repositioning--it didn't.

We went through 4 full months of lackluster PT sessions with our

PT. When i asked for any updates on Rowan's condition, she said she

was fine. But my husband and I weren't seeing any results at all.

Even as Rowan was gaining new skills (head up, sitting up, etc) we

were never given anything new to try and as you mentioned, the PT

merely mimicked the same stretches i was doing. She never did

anything additional. She also never measured her tilt or gave any

indication of quantifiable measures of my DD's progress.

Obviously, we were getting worried. Long story short, I made an

appt on my own with Dr Vicari out of Children's Memorial in Chicago.

He runs their Head Shape Program. I thought I was probably wasting

his time.

What we found during our appt, was that my daughter's torticollis

was moderate to severe and he said that because she had been in PT

for so long with no results, that she should be banded right away.

We were really mad at all the time wasted.

I honestly believe that if we had had better PT at the beginning,

Rowan would not be in a helmet today. We have been in the Star Band

for 1 week.

Don't be afraid to ask a lot of hard questions and if you aren't

getting the answers or results you want, switch sooner than later.

It might also help to make sure you and the Early Intervention PT

are on the same page as far as what they do for you.

is at an age now (like Rowan) where you can't afford to

wait it out. Her head is growing now.

The PT we have now works with the hospital and she is phenomenal.

We get new " active instructions " every time we go there--which is

twice a week to start. Instead of the same 3 stretches, we are now

doing tons of head righting by tilting her towards her tort

shoulder, and rolling over to strengthen neck muscles and getting

her to look/play to the right, etc. Basically incorporating tons of

activities into her playtime to strengthen her neck and back, etc.

We are working on her neck and she doesn't even know it.

We should have switched a long time ago, but didn't know what bad PT

was until we'd experienced it for a while. You should see results

and get feedback and they should be giving quality input on

's progress as she grows and her motor skills improve.

Sorry for the long response. Good luck and keep us posted on her

progress.

Jackie

Mother to 6 month old Rowan (Right Tort/Plagio/1 week in StarBand)

Chicago, IL

PS: FOR THOSE IN CHICAGO, WANTING TO KNOW WHICH PT NOT TO USE, LET

ME KNOW.

>

> Ok, my PT through Early Intervention finially started last week

after

> 2 months!!! I call it late intervention now!

>

> Anyway, she just assessed her progress and advised us on little

> things to work on over the next week. She did not do any aggessive

> stretching or anything. Is this the way it works? I want her to

> stretch and really work on .

>

> Is this because it is through Early Intervention? If she went to a

> private PT would they actually stretch her? I am very confused. I

> feel like she is coming to monitor what I am doing, I don't need

> that. In fact I bet I know more about Tort than she does!!

>

> She comes again today and if she just looks at again and

> moves her around a little, then I am done. I wasted 2 months

waiting

> for this!!!

>

> Am I crazy? What do your kids PT's do at their appt's?

>

>

> Mom to 6 months Tort/Plagio/DOC band

>

[Guest guest]

I apologize in advance for how long this response is!

I have worked as a speech pathologist in Early Intervention and Early

Childhood in the schools. I know first hand how long the process of

evaluation and treatment takes and it is definitely frustrating,

especially for the parents! Once the process does get started and

therapy begins, though, it doesn't matter how good the therapist is

if the skills targeted in therapy sesions aren't carried over at

home. And that is probably the position your PT is taking. She

probably wants to demonstrate the exercises for you and then watch

you do them to make sure your child's home stretching is accurate to

help the torticollis. That way your child receives more " therapy "

(at home every day with you) than just once a week or every other

week with the PT. Most therapists will take this approach because

children typically demonstrate more progress with repeated practice

across multiple settings. With that said, however, services provided

by different individuals can vary greatly. My personal experience

with PT follows:

My daughter has torticollis and plagiocephaly. It took 45 days from

the time our EI program set up the " intake " interview until the time

we wrote the IFSP. And then another week to begin sessions with the

PT. Because it took so long to begin the process and because I felt

like my daughter's head was worsening every day, we made an

appointment with a private PT as well, while we were waiting for the

EI services to begin. Now both services have begun. The EI PT is

focused more on developmental milestones (i.e. what the child should

be doing by 3 months, 6 months, etc.), which is what the program is

based on. This is excellent for children exhibiting developmental

delays. But I prefer the more " medical " approach and the thorough

evaluation and documentation provided by our private PT in the case

of my daughter's tort/plagio (for reasons listed below).

1. The private PT took head measurements to assign a severity level

to the plagiocephaly. The EI PT didn't do this. The measurements

are important to prove the necessity of a helmet later on if there is

no improvement from repo/stretching and to document if the plagio

worsens. The insurance company requires documentation and the EI PT

never did any type of measurements or assign a severity level.

2. The private PT demonstrated AND gave me handouts on aggressive

repositioning and stretches to do at home that illustrated the exact

methods to use. The EI PT gave a few examples of stetches to do, but

without any handouts. I don't know about you, but I'm a visual

learner and these handouts helped a lot! It's hard to remember

EVERYTHING you're supposed to do, so I was thankful the private PT

provdied these.

3. The private PT is focusing on the plagiocephaly and how to put

pressure on the opposite side from the flat spot (with repositioning

techniques) to: a) keep pressure off the flat spot and help to

even out the skull shape. The EI PT told me to keep her off of her

head completely (no floor time when she's on her back, no swing, no

bouncy seat, etc.). The private PT told me if I just kept her off of

her head all the time, her skull would continue to grow in the shape

it is now rather than evening out.

4. The EI PT is putting more focus on tummy time (which

developmentally she should be better at) and strengthening her

abdominal muscles than on the tort/plagio. But our main concern at

this point is the tort/plagio which is why we sought help from EI in

the beginning.

5. The private PT knows a lot more about the process of getting

evaluated for a helmet and documentation that insurance companies

require (i.e. measurements, photo documentation, etc.). The EI PT

was more limited in her knowledge of insurance companies and

referrals because EI doesn't have to deal with insurance companies

(because their services are free).

6. Our appointments with the EI PT are weekly, and are every two

weeks with the private PT. On the visits with the EI PT, she does a

side bend neck stretch a couple of times, and then focuses more on

getting her to strengthen her tummy and arm muscles to be able to

lift herself. On our visits with the private PT, she does stretching

and demonstrates what she wants us to do at home to try and relieve

pressure from our daughter's flat spot.

***Both PTs do emphasize working at home to make progress.

This is just my experience and there are absolutely EXCELLENT PTs

that work in both Early Intervention and in private clinics. You

just have to find one you feel is best addressing your child's

needs.

Hope this helps and again, I'm sorry it was sooooo long!

>

> Ok, my PT through Early Intervention finially started last week

after

> 2 months!!! I call it late intervention now!

>

> Anyway, she just assessed her progress and advised us on little

> things to work on over the next week. She did not do any aggessive

> stretching or anything. Is this the way it works? I want her to

> stretch and really work on .

>

> Is this because it is through Early Intervention? If she went to a

> private PT would they actually stretch her? I am very confused. I

> feel like she is coming to monitor what I am doing, I don't need

> that. In fact I bet I know more about Tort than she does!!

>

> She comes again today and if she just looks at again and

> moves her around a little, then I am done. I wasted 2 months

waiting

> for this!!!

>

> Am I crazy? What do your kids PT's do at their appt's?

>

>

> Mom to 6 months Tort/Plagio/DOC band

>

[Guest guest]

Thank you for your response!! This is exactly the info I was looking

for. I really like the EI PT but the sessions are exactly as you

describe. I would like to add in a private PT but was not sure how

the experience would be different. I have been doing the stretches on

my own for the last two months but I was really hoping for a little

more aggressive support than the EI PT was providing.

The PT who provides my daughters DOC band (it is a private provider)

is an expert in Tort and wrote the book many PT schools use.

Unfortunately because we are driving 3 hours each way for services on

Saturdays she has no time to fit in for PT. It was from her

that I got the idea there may be a difference between the private and

EI PT.

Thank you again!!!!!!

> >

> > Ok, my PT through Early Intervention finially started last week

> after

> > 2 months!!! I call it late intervention now!

> >

> > Anyway, she just assessed her progress and advised us on little

> > things to work on over the next week. She did not do any

aggessive

> > stretching or anything. Is this the way it works? I want her to

> > stretch and really work on .

> >

> > Is this because it is through Early Intervention? If she went to

a

> > private PT would they actually stretch her? I am very confused. I

> > feel like she is coming to monitor what I am doing, I don't need

> > that. In fact I bet I know more about Tort than she does!!

> >

> > She comes again today and if she just looks at again

and

> > moves her around a little, then I am done. I wasted 2 months

> waiting

> > for this!!!

> >

> > Am I crazy? What do your kids PT's do at their appt's?

> >

> >

> > Mom to 6 months Tort/Plagio/DOC band

> >

>