Physical Therapy

[Guest guest]

,

Hi! My son was dx with tort at 2 mnths and by your child turning with the entire body, is very characteristic of tort- especially when you say that the non-plagio side is the side that he does not want to turn to. My son had left tort, which means his left neck muscle was tight, and he did not want to look left. So, he looked right, wanted to sleep right (really, he just couldn't turn left very well), and it created a flat right back of the head. When your child uses his whole body to turn, try to hold the shoulders and body in place, and see if the child will be able to turn his head (use a dog, Elmo tape, whatever, to make the baby want to turn that way). Also, when sleeping, see if you can position the head the non-favored way, and see if it stays there. If he can't or it seems to "snap back" like a slow rubber band, I would suspect tort.

Your pt may not be familiar with tort, I had a hard time finding those pt's knowledeable with infants and tort. Check with your pediatrician asap to get a dx of tort. The head may tilt towards the non-plagio side. Also, please check with www.torticolliskids.org or torticolliskids for more parents with early intervention experience, I know they had several parents going that route. The earlier you find out, the better chance of total resolve. Don't take no for an answer, even from your ped- as some have made light of tort as well. It sounds to me like a very good possibility of tort- which is very fixable with stretching excercises. If you have any questions I might be able to answer, please ask away! Good luck and let us know how it goes!

' Mom

[Guest guest]

In a message dated 1/3/2002 12:24:23 PM Central Standard Time, gerald2399@... writes:

What is an appropriate way to ask Early intervention or physical therapy about their experience with tort? They have not been focusing on the neck/head region (neither EI or PT has heard of the DOC Band) but of the developmental aspects.

Hey Kim- just ask and if they dont have experience see if you can get a new therapist that does!

beck

[Guest guest]

Kim,

I live in So. Florida and we went to CT in Kendall (south Miami). The early intervention should have someone familiar with tort- ask for someone to address this problem asap- tort is an automotic shoo-in for this service so I would think you should find someone in the program that has experience or at least would refer you to a pediatric pt for tort.

>>>>>>He said the plagio side was like a soft pillow while the non-plagio side was like sleeping on a park bench. He pefers the soft pillow that is why he is sleeping on the right. However, what the orthoist siad still bothers me. What kind of specialist can make the most percise diagnosis?<<<<<<<

This does not make sense to me and here's why:

Plagio is the flat part- this should be considered the "park bench" and the soft pillow would be the unaffected side. Kids with plagio will fall back onto the flat spot (which further increases flatness because they are constantly putting pressure on that area of the skull- thus- a flat spot is created/perpetuated. Sometimes plagio kids can't even sleep on the "pillow side" or fuller rounder area, because the flat spot is like the bottom of a bowl, it lands on the flat part and to roll it off the flat part, takes effort- so its easier to constantly lay the way that they are.

If your orthotist mentioned it, he may have a pretty good idea, because at CT, she knew right away he had tort and they do treat many kids with tort because plagio is sometimes a secondary factor to tort. If you feel your ped is not helpful, call around to other peds and ask if they have treated torticollis. Or call another nuerologist and ask the same. Don't let one opinion stall your efforts. Keep going until you know for sure. I have been on this board and the tort board, and I have known moms that never got an official dx of tort until the child was 9 or 10 months old, sometimes, years later because their peds never spotted it, or ignored their concerns! That's why its important to know now, so you can go to pt and start working on this. Again, check into the tort group, because I know they had plenty of moms that went through EI for therapy and they can further direct you in getting the right professional to look at your child. It may be that the ped has to officially dx before they will treat, so work on finding a ped or nuero that has dealt with it and will examine your child. I know this seems so overwhelming, but the worst part is not knowing what to do! I hated that no one (except these parents online!) helped me with anything! Keep in mind also that some Docs would rather pacify you than admit defeat and limited knowledge. You are your child's best advocate- only you can figure this out and find the best route.

Usually the ped will request an MRI or catscan to rule out any bony anomolies that might cause the neck to be so tight, usually its just a formality and most cases it is simply a tight muscle from lack of ability to move inutero (among other things). Ask your ped to refer you to another specialist, and ask why no MRI or catscan was needed. Let me know how your efforts are received and I would be more than happy to help you in anyway! Good luck!

' mom

[Guest guest]

Wow...

I believed the specialist ruled out tort but he only saw him a few minutes. From early on, the doctor's have told me to do neck exercises with , but the ped have never told me that he had tort. I feel that I need to find a physical therapist that will focus on the tort but he also needs help with the develomental aspects. What is an appropriate way to ask Early intervention or physical therapy about their experience with tort? They have not been focusing on the neck/head region (neither EI or PT has heard of the DOC Band) but of the developmental aspects.

P.S.: ...Do you take your son to Cranial Technologies in Charlotte..I was sitting by a when I was there.

Kim

Mom to from Virginia

Re: Physical Therapy

,Hi! My son was dx with tort at 2 mnths and by your child turning with the entire body, is very characteristic of tort- especially when you say that the non-plagio side is the side that he does not want to turn to. My son had left tort, which means his left neck muscle was tight, and he did not want to look left. So, he looked right, wanted to sleep right (really, he just couldn't turn left very well), and it created a flat right back of the head. When your child uses his whole body to turn, try to hold the shoulders and body in place, and see if the child will be able to turn his head (use a dog, Elmo tape, whatever, to make the baby want to turn that way). Also, when sleeping, see if you can position the head the non-favored way, and see if it stays there. If he can't or it seems to "snap back" like a slow rubber band, I would suspect tort. Your pt may not be familiar with tort, I had a hard time finding those pt's knowledeable with infants and tort. Check with your pediatrician asap to get a dx of tort. The head may tilt towards the non-plagio side. Also, please check with www.torticolliskids.org or torticolliskids for more parents with early intervention experience, I know they had several parents going that route. The earlier you find out, the better chance of total resolve. Don't take no for an answer, even from your ped- as some have made light of tort as well. It sounds to me like a very good possibility of tort- which is very fixable with stretching excercises. If you have any questions I might be able to answer, please ask away! Good luck and let us know how it goes!' MomFor more plagio info

[Guest guest]

While was in his crib..I put his head to the left and it stayed there. He is able to keep it there. I remeber the specialist saying the reason he perfers the right side has to do with the plagio. He said the plagio side was like a soft pillow while the non-plagio side was like sleeping on a park bench. He pefers the soft pillow that is why he is sleeping on the right. However, what the orthoist siad still bothers me. What kind of specialist can make the most percise diagnosis?

Kim A

Virginia..Mom to

Re: Physical Therapy

,Hi! My son was dx with tort at 2 mnths and by your child turning with the entire body, is very characteristic of tort- especially when you say that the non-plagio side is the side that he does not want to turn to. My son had left tort, which means his left neck muscle was tight, and he did not want to look left. So, he looked right, wanted to sleep right (really, he just couldn't turn left very well), and it created a flat right back of the head. When your child uses his whole body to turn, try to hold the shoulders and body in place, and see if the child will be able to turn his head (use a dog, Elmo tape, whatever, to make the baby want to turn that way). Also, when sleeping, see if you can position the head the non-favored way, and see if it stays there. If he can't or it seems to "snap back" like a slow rubber band, I would suspect tort. Your pt may not be familiar with tort, I had a hard time finding those pt's knowledeable with infants and tort. Check with your pediatrician asap to get a dx of tort. The head may tilt towards the non-plagio side. Also, please check with www.torticolliskids.org or torticolliskids for more parents with early intervention experience, I know they had several parents going that route. The earlier you find out, the better chance of total resolve. Don't take no for an answer, even from your ped- as some have made light of tort as well. It sounds to me like a very good possibility of tort- which is very fixable with stretching excercises. If you have any questions I might be able to answer, please ask away! Good luck and let us know how it goes!' MomFor more plagio info

[Guest guest]

:

Make sure that your PT is familiar with torticollis. If not, ask to work with someone else. If tort is an issue, it is important that it be resolved.

Good luck.

Kendra in Canada

Physical Therapy

Hello.

was casted for his DOC Band December 27. He was not happy but he eventually calmed down. However, the person that did the castingsaid that turns to one side head only but when turn (non-plagio side) he tended to move his whole body to look. I mentioned this to the physical therapist but she did not seem to be too concerned (or it maybe that it is not part of her knowledge base). Since is a preemie, PT is provided through an agreement between the PT and Early intervention. Basically, they have my husband and I establish goals (like crawling, rolling..ect). I am not sure if it is our fault, but the PT just focuses on the developmental aspect not the plagio (like you all were describing about head therapy ect). However this can be do to the fact that we did not establish goals that deal with this. To my understanding, Early intervention and related services are for to help preemies to catch up with developmental milestones. Does anyone have expereince with Early intervention and the physical therapy that is part of early intervention. Thanks.

s

Mom to 8-months from VirginiaFor more plagio info

[Guest guest]

Thanks for the advice. Can tort be a result of plagio or is it usually tort is the cause of plagio? I should have mentioned this was a specialist is plastic surgery (cranio-facial). was about to fall asleep and I moved his head..Oh well..he moved it back. What happens if Tort is left untreated? Are the stretching exercises enough? I feel so bad because I thought his head postioning was due to the plagio so I ceased doing the neck exercises months ago ( is 8-months)

Kim A

Re: Physical Therapy

Kim,I live in So. Florida and we went to CT in Kendall (south Miami). The early intervention should have someone familiar with tort- ask for someone to address this problem asap- tort is an automotic shoo-in for this service so I would think you should find someone in the program that has experience or at least would refer you to a pediatric pt for tort. >>>>>>He said the plagio side was like a soft pillow while the non-plagio side was like sleeping on a park bench. He pefers the soft pillow that is why he is sleeping on the right. However, what the orthoist siad still bothers me. What kind of specialist can make the most percise diagnosis?<<<<<<<This does not make sense to me and here's why: Plagio is the flat part- this should be considered the "park bench" and the soft pillow would be the unaffected side. Kids with plagio will fall back onto the flat spot (which further increases flatness because they are constantly putting pressure on that area of the skull- thus- a flat spot is created/perpetuated. Sometimes plagio kids can't even sleep on the "pillow side" or fuller rounder area, because the flat spot is like the bottom of a bowl, it lands on the flat part and to roll it off the flat part, takes effort- so its easier to constantly lay the way that they are. If your orthotist mentioned it, he may have a pretty good idea, because at CT, she knew right away he had tort and they do treat many kids with tort because plagio is sometimes a secondary factor to tort. If you feel your ped is not helpful, call around to other peds and ask if they have treated torticollis. Or call another nuerologist and ask the same. Don't let one opinion stall your efforts. Keep going until you know for sure. I have been on this board and the tort board, and I have known moms that never got an official dx of tort until the child was 9 or 10 months old, sometimes, years later because their peds never spotted it, or ignored their concerns! That's why its important to know now, so you can go to pt and start working on this. Again, check into the tort group, because I know they had plenty of moms that went through EI for therapy and they can further direct you in getting the right professional to look at your child. It may be that the ped has to officially dx before they will treat, so work on finding a ped or nuero that has dealt with it and will examine your child. I know this seems so overwhelming, but the worst part is not knowing what to do! I hated that no one (except these parents online!) helped me with anything! Keep in mind also that some Docs would rather pacify you than admit defeat and limited knowledge. You are your child's best advocate- only you can figure this out and find the best route. Usually the ped will request an MRI or catscan to rule out any bony anomolies that might cause the neck to be so tight, usually its just a formality and most cases it is simply a tight muscle from lack of ability to move inutero (among other things). Ask your ped to refer you to another specialist, and ask why no MRI or catscan was needed. Let me know how your efforts are received and I would be more than happy to help you in anyway! Good luck!' momFor more plagio info

[Guest guest]

hi, where are you in Virginia, and where are you going for EI. I have a

6month old and he is getting developemental testing on 1/20/02. our

insurance doesnt pay for it, so we have to pay out of pocket based on a

sliding scale, can you tell me your experience?. We live in Manassas Park,

VA. Sommer-Campos

>From: " gerald andrews " <gerald2399@...>

>Reply-Plagiocephaly

><Plagiocephaly >

>Subject: Physical Therapy

>Date: Wed, 2 Jan 2002 22:31:59 -0500

>

>Hello.

>

> was casted for his DOC Band December 27. He was not happy but he

>eventually calmed down. However, the person that did the castingsaid that

> turns to one side head only but when turn (non-plagio side) he

>tended to move his whole body to look. I mentioned this to the physical

>therapist but she did not seem to be too concerned (or it maybe that it is

>not part of her knowledge base). Since is a preemie, PT is provided

>through an agreement between the PT and Early intervention. Basically,

>they have my husband and I establish goals (like crawling, rolling..ect).

>I am not sure if it is our fault, but the PT just focuses on the

>developmental aspect not the plagio (like you all were describing about

>head therapy ect). However this can be do to the fact that we did not

>establish goals that deal with this. To my understanding, Early

>intervention and related services are for to help preemies to catch up with

>developmental milestones. Does anyone have expereince with Early

>intervention and the physical therapy that is part of early intervention.

>Thanks.

>

> s

>Mom to 8-months from Virginia

_________________________________________________________________

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[Guest guest]

Hey lots of Moms on the board have worked with EI so you should have agood response. I feel that despite the fact that you are setting the goals the PT is still the "expert" and should be leading you in the right direction. If takes his whole body to turn to one side then I think you probably need to address that. You may want to ask if this PT has experience with Tort and Plagio and if not then maybe you want to request a new PT. Good Luck and Keep us posted!

Beck Mom to

doc grad

[Guest guest]

I believe I am on the other side of the state from you. Bluefield (southwestern Va).

KImberly ANdrews

Physical Therapy>Date: Wed, 2 Jan 2002 22:31:59 -0500>>Hello.>> was casted for his DOC Band December 27. He was not happy but he >eventually calmed down. However, the person that did the castingsaid that > turns to one side head only but when turn (non-plagio side) he >tended to move his whole body to look. I mentioned this to the physical >therapist but she did not seem to be too concerned (or it maybe that it is >not part of her knowledge base). Since is a preemie, PT is provided >through an agreement between the PT and Early intervention. Basically, >they have my husband and I establish goals (like crawling, rolling..ect). >I am not sure if it is our fault, but the PT just focuses on the >developmental aspect not the plagio (like you all were describing about >head therapy ect). However this can be do to the fact that we did not >establish goals that deal with this. To my understanding, Early >intervention and related services are for to help preemies to catch up with >developmental milestones. Does anyone have expereince with Early >intervention and the physical therapy that is part of early intervention. >Thanks.>> s>Mom to 8-months from Virginia_________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspxFor more plagio info

[Guest guest]

Kim,

Probably a neurosurgeon, neurologist or cranial-facial specialist - just make

sure to see what that specializes in pediatrics!

Marci (Mom to )

Oklahoma

[Guest guest]

Kim,

I THINK it is more commonly believed that the plagio is caused by the tort.

If your baby has issues with range of motion in the neck then PT is

definitely necessary. You should continue with the stretches.

Marci (Mom to )

Oklahoma

[Guest guest]

Please let me know if it helps you. I desperatly need to start PT. I would

like to know what works for someone in extreme pain with muscle damage.

[Guest guest]

Dear Lynn...I hope the warm water therapy helps EVERYTHING feel better!

Hang in there, kiddo.

Much Love & Many Hugs....

Tess

[Guest guest]

Lynn,

I¹m sorry your neck report is not so good. The water therapy may help

strengthen the muscles around the spine and help support your neck.

I wish your GI doctor had more encouraging news, but at least you know what

to expect.

If this is as good as it gets, you can plan around your limitations.

BTW I¹m really far behind on email and didn¹t congratulate you on your grade

for economics.

That¹s excellent for a class that was so difficult!

So when you you start therapy?

a

On 6/4/02 7:23 AM, " Ruf-Caimi " <ruf-caimi@...> wrote:

> I went yesterday to see about physical therapy for the carpal tunnel and

> neck. The therapist told me there are three herinated disk, the

> original pinched nerve, and a bulge. He started to go through some test

> in the end he told me, he felt at this time I should only do aquatic

> therapy. It was so painful when he was trying to move my head around.

> I told him that wc had said the injury was no longer there, he laughed.

> He did tell me, they may not be able to do much since this injury is

> seven years old. So I will be glad to get into a warm pool.

> GI doctor told me, I am as good as I am going to get with this whipple

> thing. I am glad she was honest with me. The intestines are going into

> spasms and she feels there maybe scar tissue at the stomach/intestine

> resectioning. So if the medicine she gave me doesn't help I will have

> to go for some GI test. I was glad the pain I am experiencing isn't

> something else but from the surgery. She says this is what happens with

> this type of surgery.

> I'm hoping the warm water makes the RA, neck, and even stomach feel

> better.

> Lynn (MeMom)

>

>

>

[Guest guest]

well i've tried and failed water therapy before, but i am going to try again

kathy in il

[Guest guest]

Thank you,

[Guest guest]

Hi a,

How are you feeling? I hope rested, I know you were not feeling great after

the graduation. Ours is next week and I will be glad when it is over.

I'm glad the stomach was honest. Your right I can build around this. I am

concerned about the pains and possible scar tissue. Doesn't sound too good to

me but I'll wait and see what happens. I start therapy on Thursday. I know the

warm water will make the RA feel better, not sure about the neck. I didn't

expect they would be able to do to much. So we will see what happens with this

too. I am shocked at my grade for economics. I thought if I passed I was

lucky. The only thing I can figure was I did well on the models. I just didn't

understand that class but I did give it my best shot. I always said if I got a

C I would take the class over but that is not going to happen. It is just too

difficult anyway I don't need it to go to Temple.

I really hope you are feeling and able to enjoy our weather. I can't stay in the

sun long but I do enjoy its warmth.

Lynn (MeMom)

a wrote:

> Lynn,

> I¹m sorry your neck report is not so good. The water therapy may help

> strengthen the muscles around the spine and help support your neck.

> I wish your GI doctor had more encouraging news, but at least you know what

> to expect.

> If this is as good as it gets, you can plan around your limitations.

> BTW I¹m really far behind on email and didn¹t congratulate you on your grade

> for economics.

> That¹s excellent for a class that was so difficult!

> So when you you start therapy?

> a

>

> On 6/4/02 7:23 AM, " Ruf-Caimi " <ruf-caimi@...> wrote:

>

> > I went yesterday to see about physical therapy for the carpal tunnel and

> > neck. The therapist told me there are three herinated disk, the

> > original pinched nerve, and a bulge. He started to go through some test

> > in the end he told me, he felt at this time I should only do aquatic

> > therapy. It was so painful when he was trying to move my head around.

> > I told him that wc had said the injury was no longer there, he laughed.

> > He did tell me, they may not be able to do much since this injury is

> > seven years old. So I will be glad to get into a warm pool.

> > GI doctor told me, I am as good as I am going to get with this whipple

> > thing. I am glad she was honest with me. The intestines are going into

> > spasms and she feels there maybe scar tissue at the stomach/intestine

> > resectioning. So if the medicine she gave me doesn't help I will have

> > to go for some GI test. I was glad the pain I am experiencing isn't

> > something else but from the surgery. She says this is what happens with

> > this type of surgery.

> > I'm hoping the warm water makes the RA, neck, and even stomach feel

> > better.

> > Lynn (MeMom)

> >

> >

> >

[Guest guest]

Hi ,

I won't be doing pt. I am going into aquatic therapy. It will be a little

kinder to me. I'll let you know how it goes.

Lynn (MeMom)

localady33@... wrote:

> Please let me know if it helps you. I desperatly need to start PT. I would

> like to know what works for someone in extreme pain with muscle damage.

>

>

>

[Guest guest]

Thanks Tess,

I hope it brings a little relief.

Lynn (MeMom)

Tess_St_Pierre@... wrote:

> Dear Lynn...I hope the warm water therapy helps EVERYTHING feel better!

> Hang in there, kiddo.

>

> Much Love & Many Hugs....

>

> Tess

>

>

>

[Guest guest]

ann,

When was in PT.. my PT did both. She was hands on with

,but she also showed me how to do everything she was doing. She

definitely worked !! My poor baby would leave there exhausted!

But it worked. Her tort is fully resolved. YEA!!

> I just went to our first PT visit for . I was wondering if

anyone can

> tell me what exactly is done at PT? All she did was watch him play

and

> recommend to me how I should play with him (ie: put his toys on his

> right and encourage him to reach over so he will tip his head to

the left

> rather than the right to build up his muscles on the left, help him

roll

> to his right when he is on his back because he only rolls to the

left).

> It just seemed alittle bogus to me.

> I thought there was more direct manipulation. Wondering what

> experiences anyone else has had.

>

> Thanks,

> ann/

> NJ

> DOCband 2 weeks

[Guest guest]

HI,

I'm so with you on this one. The exact same thing has

happened to me two weeks in a row and I'm done with

that P.T. I learned from another mom in the tort

group that there's a program in California that is for

children w/ disabilities and they will come out for

free too evaluate your child. If the child qualifies

they will send a p.t. to your house for free! No

income qualifications. It's based on the child's

disability. It's for children between 0 and 3 years.

You might want to see if your state offers the same

type of program. This mother is extremely pleased

with the p.t. they've sent. You might also want to

ask the doctor who prescribed the band or CT if they

can recommend a p.t. who knows what they're doing w/

infant tort. Good luck!

, 's mom

Southern California

--- ann Breslow <smilemtb@...> wrote:

> I just went to our first PT visit for . I

> was wondering if anyone can

> tell me what exactly is done at PT? All she did was

> watch him play and

> recommend to me how I should play with him (ie: put

> his toys on his

> right and encourage him to reach over so he will tip

> his head to the left

> rather than the right to build up his muscles on the

> left, help him roll

> to his right when he is on his back because he only

> rolls to the left).

> It just seemed alittle bogus to me.

> I thought there was more direct manipulation.

> Wondering what

> experiences anyone else has had.

>

> Thanks,

> ann/

> NJ

> DOCband 2 weeks

>

>

__________________________________________________

[Guest guest]

Hi again,

That program I'm talking about is called Early Intervention and the

website is http://www.nichcy.org/

, 's mom

Southern California

> I just went to our first PT visit for . I was wondering if

anyone can

> tell me what exactly is done at PT? All she did was watch him play

and

> recommend to me how I should play with him (ie: put his toys on his

> right and encourage him to reach over so he will tip his head to the

left

> rather than the right to build up his muscles on the left, help him

roll

> to his right when he is on his back because he only rolls to the

left).

> It just seemed alittle bogus to me.

> I thought there was more direct manipulation. Wondering what

> experiences anyone else has had.

>

> Thanks,

> ann/

> NJ

> DOCband 2 weeks

[Guest guest]

ann,

It is important for your pt to do those things, but I think depending upon

's severity, more agressive stretching needs to be done. My pt would

also focus on different aspects, because tort can affect milestones,

especially where balance is concerned (they tend to not want to use the tort

side and ignore it because its more frustrating or harder)- so its great that

they are on top of that part. An example of more agressive pt: my pt would

use me as a distraction, with bubbles, or musical toys, laying on his back on

the mat, and when he would look to his tort side, she would place her palm on

his cheek and " help " him rotate more fully by pushing his face that way- it

sounds really cruel, and he did cry (I think mostly because he did not want

her hands on his head), but this was important for us because he was severe-

ear to shoulder- and she was not doing this forcefully, it was a very gradual

process. You don't want to be over aggressive, but work with it and push it

to the limit a little. I know that some parents feel that if their child

cries, they would slack off and try again- that may work for some- but again

I think severity is key here. If we had stopped everytime he cried, we

wouldn't have gotten anywhere- and eventually with the pt he was cool and it

was no big deal (at home he rarely even woke up when I stretched him, so I

know he was not in severe pain with her). Good luck- I also gave my pt the

KKR book, and she also learned a lot in the process.

' Mom

[Guest guest]

In a message dated 7/10/2002 8:53:07 PM Eastern Daylight Time, christina_a444@... writes:

This mother is extremely pleased

with the p.t. they've sent.

,

I think EI is fantastic! But we also had a member that was unhappy with several of her pt's lack of experience in tort who used EI, so I think just finding the right pt is the key, sometimes they will act as they know so much, but as parents we really need to see what they are doing and keep on top of them by educating ourselves as well. I think EI is a great program too, in the right hands of course! Thanks for sharing that!

' Mom