Re: Torticollis just won't go away

[Guest guest]

Haylee,

Tort really sucks doesn't it? It is even more stubborn than my

Irish and Calabrese grandparents (didn't know that was possible).

Can you get him back in PT? Make sure to get someone experienced in

dealing with Tort. Dane was first referred to a PT who discharged

us twice. Then when we went to get the band (thanks to this group)

Karmel Ross became his new PT and took care of all of it. I

still can't believe he was discharged twice! His tort has been

resolved since 8 months.

has written a book about tort. You can get it on Amazon.com.

I haven't read it but I know many parents have it and use it to help

them out with tort. A new book is coming out soon too.

I feel for you. Cece's tort has been so frustrating. We thought it

was gone in November. Then it came back with the latest growth

spurt. They are considered resolved when they go through 3 growth

spurts without it returning.

Mom to Dane 4 yo and Cece 12 mo (DOC Grads)

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing

forehead

> and cheek, and the bottom of his jaw when you look at him from

under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to

cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left

and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up

and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

Haylee,

Tort really sucks doesn't it? It is even more stubborn than my

Irish and Calabrese grandparents (didn't know that was possible).

Can you get him back in PT? Make sure to get someone experienced in

dealing with Tort. Dane was first referred to a PT who discharged

us twice. Then when we went to get the band (thanks to this group)

Karmel Ross became his new PT and took care of all of it. I

still can't believe he was discharged twice! His tort has been

resolved since 8 months.

has written a book about tort. You can get it on Amazon.com.

I haven't read it but I know many parents have it and use it to help

them out with tort. A new book is coming out soon too.

I feel for you. Cece's tort has been so frustrating. We thought it

was gone in November. Then it came back with the latest growth

spurt. They are considered resolved when they go through 3 growth

spurts without it returning.

Mom to Dane 4 yo and Cece 12 mo (DOC Grads)

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing

forehead

> and cheek, and the bottom of his jaw when you look at him from

under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to

cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left

and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up

and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

I could maybe get him back in pt but they don't seem to know what

they are doing. It is so frustrating. Thanks for the info on the

book. I am going to go look for it on amazon right now.

does your child who has resolved tort show any signs of ever having

it or is it like it was never there? (i mean as far as a tilt and

preferance to turn only one way and cheating by moving the whole

body instead of just turning the head)

Thanks for your response.

Haylee

> >

> > I posted this on the tort board but i thought i would post it

here

> > to.

> >

> > My son is 16 months old and he also has a twin sister. He has had

> > torticollis since he was 2 month old as far as I can tell. He

> > developed plagiocephaly shortly after and it is now being treated

> > with a doc band. He received physio for 2 months 2 times a week.

> > At that time he was released. Very passive streches were done at

> > these physio sessions. His ears are misaligned they were about an

> > inch off and now I'd say it is like half an inch. He has facial

> > assymetries including one eye lower than the other, bossing

> forehead

> > and cheek, and the bottom of his jaw when you look at him from

> under

> > his chin looks pretty bad. The back of his head is starting to

> > round out now. We do streches at every diaper change, and

> > stregnthening excersises on a large gym ball, and he goes to

> cranial

> > sacral therapy.

> >

> > Inspite off all of this my son still prefers to look to the left

> and

> > will spin his whole body instead of turn his head to the right.

> > When he walks in a straight line his head is always tilted to up

> and

> > to the left. He always sleeps on the right side of his face which

> > is the flat side and I am worried that once he comes out of his

doc

> > band everything will get worse.

> >

> > When will this Torticollis go away? Should I expect to be

streching

> > him until he is 12 years old?

> >

> > Our ped and some specialists have told us not to worry about it

> > there is no problem (without even coming within 5 feet of my son

> > they are somehow able to determine this). I am 99% sure they have

> > no clue about torticollis.

> >

> > What should i do? Any advice would be greatly appreciated. Thank

> > you.

> >

> > Haylee

> >

>

[Guest guest]

I could maybe get him back in pt but they don't seem to know what

they are doing. It is so frustrating. Thanks for the info on the

book. I am going to go look for it on amazon right now.

does your child who has resolved tort show any signs of ever having

it or is it like it was never there? (i mean as far as a tilt and

preferance to turn only one way and cheating by moving the whole

body instead of just turning the head)

Thanks for your response.

Haylee

> >

> > I posted this on the tort board but i thought i would post it

here

> > to.

> >

> > My son is 16 months old and he also has a twin sister. He has had

> > torticollis since he was 2 month old as far as I can tell. He

> > developed plagiocephaly shortly after and it is now being treated

> > with a doc band. He received physio for 2 months 2 times a week.

> > At that time he was released. Very passive streches were done at

> > these physio sessions. His ears are misaligned they were about an

> > inch off and now I'd say it is like half an inch. He has facial

> > assymetries including one eye lower than the other, bossing

> forehead

> > and cheek, and the bottom of his jaw when you look at him from

> under

> > his chin looks pretty bad. The back of his head is starting to

> > round out now. We do streches at every diaper change, and

> > stregnthening excersises on a large gym ball, and he goes to

> cranial

> > sacral therapy.

> >

> > Inspite off all of this my son still prefers to look to the left

> and

> > will spin his whole body instead of turn his head to the right.

> > When he walks in a straight line his head is always tilted to up

> and

> > to the left. He always sleeps on the right side of his face which

> > is the flat side and I am worried that once he comes out of his

doc

> > band everything will get worse.

> >

> > When will this Torticollis go away? Should I expect to be

streching

> > him until he is 12 years old?

> >

> > Our ped and some specialists have told us not to worry about it

> > there is no problem (without even coming within 5 feet of my son

> > they are somehow able to determine this). I am 99% sure they have

> > no clue about torticollis.

> >

> > What should i do? Any advice would be greatly appreciated. Thank

> > you.

> >

> > Haylee

> >

>

[Guest guest]

Haylee,

Dane hasn't shown any signs of tort since he was an infant. He

didn't have CMT though. We were told to lay and hold him only on

his right side because of his reflux. This is what did the damage.

The damage had really been done in just 4-6 weeks.

did an updated photostudy of him this fall. He was trying to

be all cute and shrugging his shoulders. I kept telling him to stop

because it was going to look like he was tilting!

There actually is a boy in his preschool class who got 2 DOC Bands

and had PT with . He doesn't tilt either. At least I've never

noticed it.

> > >

> > > I posted this on the tort board but i thought i would post it

> here

> > > to.

> > >

> > > My son is 16 months old and he also has a twin sister. He has

had

> > > torticollis since he was 2 month old as far as I can tell. He

> > > developed plagiocephaly shortly after and it is now being

treated

> > > with a doc band. He received physio for 2 months 2 times a

week.

> > > At that time he was released. Very passive streches were done

at

> > > these physio sessions. His ears are misaligned they were about

an

> > > inch off and now I'd say it is like half an inch. He has facial

> > > assymetries including one eye lower than the other, bossing

> > forehead

> > > and cheek, and the bottom of his jaw when you look at him from

> > under

> > > his chin looks pretty bad. The back of his head is starting to

> > > round out now. We do streches at every diaper change, and

> > > stregnthening excersises on a large gym ball, and he goes to

> > cranial

> > > sacral therapy.

> > >

> > > Inspite off all of this my son still prefers to look to the

left

> > and

> > > will spin his whole body instead of turn his head to the right.

> > > When he walks in a straight line his head is always tilted to

up

> > and

> > > to the left. He always sleeps on the right side of his face

which

> > > is the flat side and I am worried that once he comes out of

his

> doc

> > > band everything will get worse.

> > >

> > > When will this Torticollis go away? Should I expect to be

> streching

> > > him until he is 12 years old?

> > >

> > > Our ped and some specialists have told us not to worry about it

> > > there is no problem (without even coming within 5 feet of my

son

> > > they are somehow able to determine this). I am 99% sure they

have

> > > no clue about torticollis.

> > >

> > > What should i do? Any advice would be greatly appreciated.

Thank

> > > you.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

Haylee,

Dane hasn't shown any signs of tort since he was an infant. He

didn't have CMT though. We were told to lay and hold him only on

his right side because of his reflux. This is what did the damage.

The damage had really been done in just 4-6 weeks.

did an updated photostudy of him this fall. He was trying to

be all cute and shrugging his shoulders. I kept telling him to stop

because it was going to look like he was tilting!

There actually is a boy in his preschool class who got 2 DOC Bands

and had PT with . He doesn't tilt either. At least I've never

noticed it.

> > >

> > > I posted this on the tort board but i thought i would post it

> here

> > > to.

> > >

> > > My son is 16 months old and he also has a twin sister. He has

had

> > > torticollis since he was 2 month old as far as I can tell. He

> > > developed plagiocephaly shortly after and it is now being

treated

> > > with a doc band. He received physio for 2 months 2 times a

week.

> > > At that time he was released. Very passive streches were done

at

> > > these physio sessions. His ears are misaligned they were about

an

> > > inch off and now I'd say it is like half an inch. He has facial

> > > assymetries including one eye lower than the other, bossing

> > forehead

> > > and cheek, and the bottom of his jaw when you look at him from

> > under

> > > his chin looks pretty bad. The back of his head is starting to

> > > round out now. We do streches at every diaper change, and

> > > stregnthening excersises on a large gym ball, and he goes to

> > cranial

> > > sacral therapy.

> > >

> > > Inspite off all of this my son still prefers to look to the

left

> > and

> > > will spin his whole body instead of turn his head to the right.

> > > When he walks in a straight line his head is always tilted to

up

> > and

> > > to the left. He always sleeps on the right side of his face

which

> > > is the flat side and I am worried that once he comes out of

his

> doc

> > > band everything will get worse.

> > >

> > > When will this Torticollis go away? Should I expect to be

> streching

> > > him until he is 12 years old?

> > >

> > > Our ped and some specialists have told us not to worry about it

> > > there is no problem (without even coming within 5 feet of my

son

> > > they are somehow able to determine this). I am 99% sure they

have

> > > no clue about torticollis.

> > >

> > > What should i do? Any advice would be greatly appreciated.

Thank

> > > you.

> > >

> > > Haylee

> > >

> >

>

[Guest guest]

Hi Haylee,

I'm sorry to hear about your frustration. I would say that most

babies outgrow tort by the time that they are walking well but that

hasn't been the case for my son. He didn't even start PT until he

was walking. He is now almost 4 and still tilts. My advice is to

continue the PT as long as you can. We also see a chiro that treats

children. I'm not suggesting that you do that but it is an option

out there. No one notices except my husband and myself. Bigs hugs

and I wish I had more advice!

Natasha

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing

forehead

> and cheek, and the bottom of his jaw when you look at him from

under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to

cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left

and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up

and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

Hi Haylee,

I'm sorry to hear about your frustration. I would say that most

babies outgrow tort by the time that they are walking well but that

hasn't been the case for my son. He didn't even start PT until he

was walking. He is now almost 4 and still tilts. My advice is to

continue the PT as long as you can. We also see a chiro that treats

children. I'm not suggesting that you do that but it is an option

out there. No one notices except my husband and myself. Bigs hugs

and I wish I had more advice!

Natasha

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing

forehead

> and cheek, and the bottom of his jaw when you look at him from

under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to

cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left

and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up

and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

Haylee,

He needs to get back into PT and now. He will need PT to correct the

tort. and now to learn how to move correctly because he has spent

this long compensating. If you do not like who saw him before, get

someone new, but get him PT. Good Luck and let me know what happens.

CAROLG

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing forehead

> and cheek, and the bottom of his jaw when you look at him from under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

Haylee,

He needs to get back into PT and now. He will need PT to correct the

tort. and now to learn how to move correctly because he has spent

this long compensating. If you do not like who saw him before, get

someone new, but get him PT. Good Luck and let me know what happens.

CAROLG

--- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing forehead

> and cheek, and the bottom of his jaw when you look at him from under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

I would consider putting him back in PT also - or at least talking

to his previous PT or a new one with expereince with tort kids. My

son was diagnosed with tort around four months and he's now 14

months - he graduated from a DOC band in late Sept but he still goes

to physical therapy every other week. Our doctor told us to

continue him with PT until he was walking and at least a year old

adjusted (he was premie) - if you can get insurance to cover it

(ours still has been covering it) - it probably couldn't hurt b/c I

found doing it on my own was hard. good luck!

-- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing

forehead

> and cheek, and the bottom of his jaw when you look at him from

under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to

cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left

and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up

and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>

[Guest guest]

I would consider putting him back in PT also - or at least talking

to his previous PT or a new one with expereince with tort kids. My

son was diagnosed with tort around four months and he's now 14

months - he graduated from a DOC band in late Sept but he still goes

to physical therapy every other week. Our doctor told us to

continue him with PT until he was walking and at least a year old

adjusted (he was premie) - if you can get insurance to cover it

(ours still has been covering it) - it probably couldn't hurt b/c I

found doing it on my own was hard. good luck!

-- In Plagiocephaly , " haylee204 " <rascle204@h...>

wrote:

>

> I posted this on the tort board but i thought i would post it here

> to.

>

> My son is 16 months old and he also has a twin sister. He has had

> torticollis since he was 2 month old as far as I can tell. He

> developed plagiocephaly shortly after and it is now being treated

> with a doc band. He received physio for 2 months 2 times a week.

> At that time he was released. Very passive streches were done at

> these physio sessions. His ears are misaligned they were about an

> inch off and now I'd say it is like half an inch. He has facial

> assymetries including one eye lower than the other, bossing

forehead

> and cheek, and the bottom of his jaw when you look at him from

under

> his chin looks pretty bad. The back of his head is starting to

> round out now. We do streches at every diaper change, and

> stregnthening excersises on a large gym ball, and he goes to

cranial

> sacral therapy.

>

> Inspite off all of this my son still prefers to look to the left

and

> will spin his whole body instead of turn his head to the right.

> When he walks in a straight line his head is always tilted to up

and

> to the left. He always sleeps on the right side of his face which

> is the flat side and I am worried that once he comes out of his doc

> band everything will get worse.

>

> When will this Torticollis go away? Should I expect to be streching

> him until he is 12 years old?

>

> Our ped and some specialists have told us not to worry about it

> there is no problem (without even coming within 5 feet of my son

> they are somehow able to determine this). I am 99% sure they have

> no clue about torticollis.

>

> What should i do? Any advice would be greatly appreciated. Thank

> you.

>

> Haylee

>