Re: Help Needed in South Dakota!

[Guest guest]

Hi ,

Welcome to the group! Does your son have a flat spot on the opposite side of the tilt? Does he have problems turning his head in one direction? My son was dx with tort at 2 mnths, and we were told to get into physical therapy asap, along with doing stretches at home. First though, we were sent to a neuro for an MRI to rule out any bony anomalies that may be causing the head tilt (in other words, they want to make sure the spinal bones are not fused the wrong way- this is very rare, most tort is a muscular problem, and the stretching helps to stretch the muscle that is very tight, causing the tilt). Check into the support group, torticolliskids , and the website, www.torticolliskids.com for more tips and info on torticollis- they helped me immensely! Even at 2 mnths, we knew that the flat spot was a problem and tried to reposition. With the tort being a factor, would spring back to the same position. You really need to attack the torticollis with serious stretching and exercises as this is what is causing one side to flatten- because they are constantly favoring one side. We ended up going against our peds advice and got the DOC band. This helped with the facial asymmetry (he also had the puffier cheek, smaller eye and misaligned ears). Now his asymmetry is not noticeable to anyone that is not looking for it. Please feel free to email me personally for more info on tort. I would seek out pt from a professional to coincide with your daily stretches, they can offer you more tips and also give you a much needed break from doing the stretches yourself. You can look into Early Intervention for this, a state funded program ,but the child will only qualify if they have a 25% delay. I will attach a few links to help you in your new journey. On a personal note, many us of parents are here because we didn't seem to get answers about this from professionals, so just be aware that sometimes Docs do not pursue aggressive treatment until that effective window of opportunity has somewhat passed. Educate yourself, and in the long run, you and your son will be better off so that you can take immediate and aggressive action for both the tort and plagio. Again, if I can help you in any way with questions, please let me know!! Good luck!

' Mom

Stretches/Holds

More stretches

Early Intervention

[Guest guest]

Hi and welcome. Unfortunately so many of us here have had that exact

experience. So often doctors send moms away with a " it will round out on its

own " statement and a suggestion to reposition. The problem is that those

heads don't always round out on their own even if repositioning!!!! However,

we have people here who have tried repositioning and have very good success -

in fact, some have had all the success they needed/wanted.

Others have had only marginal success with repositioning and have ultimately

decided to use a helmet or band. If your baby has torticollis then it may be

beneficial for him to see a physical therapist at least a few times so that

you can learn the proper way to do the stretching excercises that will be

vital to correcting the tort and also help with the plagio. Ultimately if you

want to try helmet/band therapy your specialist should honor that wish and

give you a prescription for a helmet or band. Your baby is at a GREAT age to

see some really good correction with a helmet or band. Hopefully someone in

the group can point you in the direction of a specialist in your area who

will at least discuss band/helmet therapy with you.

Whichever way you decide to go I would suggest aggressively repositioning him

and also be very persistent with the stretching exercises. Check out

www.plagiocephaly.org/support for tips on repositioning. You might also check

out torticolliskids which is another group like this one that

specializes in torticollis.

Good luck and let us know what you decide to do. You will have our support

whichever direction you go!!

Marci (Mom to )

(Oklahoma)

[Guest guest]

Thanks Kel, I enjoy reading your posts too!

' Mom

[Guest guest]

Kel,

Thanks for speaking up on the tilt with ROM, its important because so many Docs feel that if they have ROM, they don't have tort!! Good info Kel! Thanks!!

' Mom (who will also tilt when he gets sick or tired!)

[Guest guest]

Hi , are you close to a DOC band facility, or

someone that works with banding? I'm just saying

this, because our so called specialist had no clue.

You need to go to someone who works with infants and

flat spots. Over Half of the DOCband or Cranial Tech

offices offer free consults. It's well worth the time

and effort. If they tell you no worries, then that's

great!! You have Tort, and the flat spot tends to get

worse with Torticollis babies, I know mine did. In

our links section, there is a link to Cranial

Technologies... please, go look at their site... try

this too, I think this is the link.

http://www.cranialtech.com/

Kelli and DOCgrad

__________________________________________________

[Guest guest]

, if you need to fly there, here's a site that

will help on expenses, I think they'll pay your way...

www.aircareall.org

__________________________________________________

[Guest guest]

, your awesome!!! Way to go girl. I love the

detail you provide!!

Kel

__________________________________________________

[Guest guest]

Thanks so much for your response! My pediatrician felt that

did not have tort, as he had good range of motion. However, his head

tilt is the opposite side of the flat spot. The ped. neuro. took x-

rays to rule out problems with his spine. I too am very concerned

about missing the window of opportunity if correction is needed. Did

you need a prescription for the DOC band? If so, who did you get one

from if your ped. did not recommend it? I am just wondering where to

turn next since the specialist did not recommend further treatment--

how many doctors should I take him to before I should just accept

their opinion that he will be OK? It is frustrating that I seem to

be the only one who is worried about this!!

> Hi ,

> Welcome to the group! Does your son have a flat spot on the

opposite side of

> the tilt? Does he have problems turning his head in one

direction? My son

> was dx with tort at 2 mnths, and we were told to get into

physical

> therapy asap, along with doing stretches at home. First though, we

were sent

> to a neuro for an MRI to rule out any bony anomalies that may be

causing the

> head tilt (in other words, they want to make sure the spinal bones

are not

> fused the wrong way- this is very rare, most tort is a muscular

problem, and

> the stretching helps to stretch the muscle that is very tight,

causing the

> tilt). Check into the support group, torticolliskids@y..., and

> the website, www.torticolliskids.com for more tips and info on

torticollis-

> they helped me immensely! Even at 2 mnths, we knew that the flat

spot was a

> problem and tried to reposition. With the tort being a factor,

> would spring back to the same position. You really need to attack

the

> torticollis with serious stretching and exercises as this is what

is causing

> one side to flatten- because they are constantly favoring one

side. We ended

> up going against our peds advice and got the DOC band. This helped

with the

> facial asymmetry (he also had the puffier cheek, smaller eye and

misaligned

> ears). Now his asymmetry is not noticeable to anyone that is not

looking for

> it. Please feel free to email me personally for more info on

tort. I would

> seek out pt from a professional to coincide with your daily

stretches, they

> can offer you more tips and also give you a much needed break from

doing the

> stretches yourself. You can look into Early Intervention for this,

a state

> funded program ,but the child will only qualify if they have a 25%

delay. I

> will attach a few links to help you in your new journey. On a

personal note,

> many us of parents are here because we didn't seem to get answers

about this

> from professionals, so just be aware that sometimes Docs do not

pursue

> aggressive treatment until that effective window of opportunity has

somewhat

> passed. Educate yourself, and in the long run, you and your son

will be

> better off so that you can take immediate and aggressive action for

both the

> tort and plagio. Again, if I can help you in any way with

questions, please

> let me know!! Good luck!

>

> ' Mom

>

> <A HREF= " http://www.orthoseek.com/articles/ifs-

left.html " >Stretches/Holds</A>

>

> <A HREF= " http://www.pedisurg.com/PtEduc/Torticollis.htm " >More

stretches</A>

>

> <A HREF= " http://www.nectas.unc.edu/partc/partc.html " >Early

Intervention</A>

[Guest guest]

Hi, head tilting is torticollis too. My little

had the tilt, but full range of motion. To this day,

when she's not feeling well, she'll revert back to her

tilt.

Kel

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