Re: Grant's Tort is not getting better...help!

[Guest guest]

,

Angie mentioned Early Intervention and I must agree that they are

definitely worth checking into. Isabella also has torticollis and

her doc recommended therapy however there is nobody in our area who

would take babies. We were given the Early Intervention number and

they are great!! How severe is Grant's tort?? He would have to be

severe enough to qualify for the program, at least that's how it

works in my area. I was also concerned with Bella's neck looking

worse some days while other days it looked perfect. The therapist

told me that sometimes during growth spurts it looks like the neck

is getting worse but it should catch up quickly. She also said it's

possible the weather(dampness) could affect the way she holds it. I

guess it's kind of like being achy when the weather is damp, etc.

Anyway, it took us a few weeks to get everything organized with the

EI program so I would check into it as soon as possible. They have

to schedule an appointment for an intake(gathering info.) then

another appointment for an evaluation to see if the child qualifies

then sometimes it's another few weeks till the therapy starts. I

guess it just depends on the availability of therapists in your

area. Hope this helps. Good luck!!

Crystal (Bella's proud mommy!!)

tort/plagio

STARbanded 11/24/04

> Does anyone know who I should be having my son seen by for his

tort. We

> have got him in the helmet for the plagio. We are seeing the OT

about once

> a month, but should he be seen by an actual doctor/specialist for

it? He

> has a lump in the side of his neck that seems worse and I try to

do his

> excercises as often as possible. It is hard to do it more than a

few times

> a day with the triplets now getting mobile and only being home 1/2

> days. Should he be seen by some sort of doctor who specializes in

Torticollis?

>

>

> Thanks,

>

> Mom to Grant 8 months

> Plagio/Tort

> Rec'd Helmet 11/22/04

> Rec'd 2nd Helmet 12/08/04

[Guest guest]

When Connor was being treated for tort, we went to PT once a week,

then towards the end every 2 weeks. Has Grant had any x-rays or other

tests to rule out any other causes for the tilt? It seems unusual

that he would still have a lump at his age. If you are really

concerned, you should schedule an appt. with a specialist. There are

several different types who see tort kids. You might try calling the

local children's hospital or the Shriners and see if you can get a

recommendation from them. As some others mentioned, Early

Intervention is another option to check out. Good luck and keep us

updated.

P.S. You might want to try posting the question on the

TorticollisKids board. The link is:

torticolliskids/

Connor - 13.5 months

(PPO helmet grad 8/04, tort resolved, mild craniofacial microsomia)

> Does anyone know who I should be having my son seen by for his tort.

We

> have got him in the helmet for the plagio. We are seeing the OT

about once

> a month, but should he be seen by an actual doctor/specialist for

it? He

> has a lump in the side of his neck that seems worse and I try to do his

> excercises as often as possible. It is hard to do it more than a

few times

> a day with the triplets now getting mobile and only being home 1/2

> days. Should he be seen by some sort of doctor who specializes in

Torticollis?

>

>

> Thanks,

>

> Mom to Grant 8 months

> Plagio/Tort

> Rec'd Helmet 11/22/04

> Rec'd 2nd Helmet 12/08/04

[Guest guest]

-

Ashton was diagnosed with tort by a pediatric neurosurgeon, when we found out he had plagio. His regular pediatrician actually referred us to him for the RX for his plagio and that is when he was diagnosed with tort. The neurosurgeon recommended at hom PT and if it didn't get better, which it is, then outpatient PT. The lump you are talking of worries me though. I would definitely talk with your regular pediatrician about recommending you to someone. I would not put it off. Hey, how is Grant's new helmet working out? I hope it is a better fit for him!

Lori...mom to Ashton, 5 months old

tort and L plagio

received helmet 11/18/04 <andileigh@...> wrote:

When Connor was being treated for tort, we went to PT once a week,then towards the end every 2 weeks. Has Grant had any x-rays or othertests to rule out any other causes for the tilt? It seems unusualthat he would still have a lump at his age. If you are reallyconcerned, you should schedule an appt. with a specialist. There areseveral different types who see tort kids. You might try calling thelocal children's hospital or the Shriners and see if you can get arecommendation from them. As some others mentioned, EarlyIntervention is another option to check out. Good luck and keep usupdated. P.S. You might want to try posting the question on theTorticollisKids board. The link is: torticolliskids/Connor - 13.5 months(PPO helmet grad 8/04, tort resolved, mild craniofacial microsomia)> Does anyone know who I should be having my son seen by for his tort.We > have got him in the helmet for the plagio. We are seeing the OTabout once > a month, but should he be seen by an actual doctor/specialist forit? He > has a lump in the side of his neck that seems worse and I try to do his > excercises as often as possible. It is hard to do it more than afew times > a day with the triplets now getting mobile and only being home 1/2 > days. Should he be seen by some sort of doctor who specializes inTorticollis?> > > Thanks,> >

Mom to Grant 8 months> Plagio/Tort> Rec'd Helmet 11/22/04> Rec'd 2nd Helmet 12/08/04For more plagio info

[Guest guest]

Who diagnosed it as muscular tort? Wer other causes of tort ruled

out? Did you get xrays? I would try to see a pediatric orthopedist

or, in our case at Children's Hospital in DC it is physiatrists that

see the tort kids. We were evaluated there and then see the doc

every 3-4 months to follow progress and order treatment. We also

went to PT 2x week. (still do but now it is for the low tone). It

seems unusual that the lump is still there, and even getting bigger.

I would definately get it check out by more than the ped.

's tort board has been a lifesaver for us.

Dara

mom to Jonah/21 mo/tort resolved/Doc Band grad/low tone

> Does anyone know who I should be having my son seen by for his

tort. We

> have got him in the helmet for the plagio. We are seeing the OT

about once

> a month, but should he be seen by an actual doctor/specialist for

it? He

> has a lump in the side of his neck that seems worse and I try to do

his

> excercises as often as possible. It is hard to do it more than a

few times

> a day with the triplets now getting mobile and only being home 1/2

> days. Should he be seen by some sort of doctor who specializes in

Torticollis?

>

>

> Thanks,

>

> Mom to Grant 8 months

> Plagio/Tort

> Rec'd Helmet 11/22/04

> Rec'd 2nd Helmet 12/08/04