Re: SEVERE Plagio & Torticollis

[Guest guest]

I would definitely go to physical therapy for the torticollis. My You are lucky

your son is so young.We started my daughter in p.t. at two months and after 2

months of p.t. you would never know she has torticollis.

We use Cranial Technologies for our band. The will put a band on at 3 months.Our

daughter has the DOC band and we love it.My daughter got her band at 3 months

and after 3 weeks we are noticing a difference.

Remember insurance might not cover the bands from certain facilities so

contacting them would be a good idea. The insurance company can tell you where

to go in your area and what to expect financially.I hope this helps and good

luck.

Mom of a beautiful banded baby girl

>

> Hi, dear moms and dads!

>

> I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant

assymetry and preferred left side. But his pediatrician was not concerned, he

said my son would " grow out of it " .

>

> Now at 3 months I am really alarmed. At this point my son's head is so flat on

the left, that that is the only side he would lay on and he doesn't turn his

head to the right at all.

>

> I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever

plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2

stretching escercies for neck muscles and suggested Dmitri gets a helmet.

>

> I have no faith or trust in Dmitri's pediatrician. I am scared to think I

would have listened to him and just let my son be with such severe deformity.

>

> Since I am new to all this, could you give me your input on whether I am doing

enough? Should I request CT scan or MRI? Should I as for physical therapy?

Which brand of helmets is better: Star or Doc?

> Any information would be much appreciated!

>

> Regards,

> Katrina

>

[Guest guest]

Thank you for your response. I also heard about Cranial Technologies and have a

consultation scheduled already. I just hope that my insurance will work with

them.

I called my sons pediatrician's office today asking for a referral to physical

theraphy and they acted as if they never heard about PT for torticollis. I

insisted and they are working on it now.

I am also wondering why the neurosurgeon didn't order CT scan or MRI right away

to rule out craniosinostosis... Any ideas?

> >

> > Hi, dear moms and dads!

> >

> > I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant

assymetry and preferred left side. But his pediatrician was not concerned, he

said my son would " grow out of it " .

> >

> > Now at 3 months I am really alarmed. At this point my son's head is so flat

on the left, that that is the only side he would lay on and he doesn't turn his

head to the right at all.

> >

> > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever

plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2

stretching escercies for neck muscles and suggested Dmitri gets a helmet.

> >

> > I have no faith or trust in Dmitri's pediatrician. I am scared to think I

would have listened to him and just let my son be with such severe deformity.

> >

> > Since I am new to all this, could you give me your input on whether I am

doing enough? Should I request CT scan or MRI? Should I as for physical

therapy? Which brand of helmets is better: Star or Doc?

> > Any information would be much appreciated!

> >

> > Regards,

> > Katrina

> >

>

[Guest guest]

You may also want to have a chiropractor check to make sure that the tort isn't being influenced by misalignment of the neck bones. I've heard of a couple cases where this was happening. An adjustment to the bones made a huge difference and then physical therapy was able to progress more quickly with loosening the muscles.

, mom to , 25 months

STARband grad May 2009

Chiro and CST

land

Re: SEVERE Plagio & Torticollis

Thank you for your response. I also heard about Cranial Technologies and have a consultation scheduled already. I just hope that my insurance will work with them.I called my sons pediatrician's office today asking for a referral to physical theraphy and they acted as if they never heard about PT for torticollis. I insisted and they are working on it now.I am also wondering why the neurosurgeon didn't order CT scan or MRI right away to rule out craniosinostosis... Any ideas?> >> > Hi, dear moms and dads!> > > > I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant assymetry and preferred left side. But his pediatrician was not concerned, he said my son would "grow out of it".> > > > Now at 3 months I am really alarmed. At this point my son's head is so flat on the left, that that is the only side he would lay on and he doesn't turn his head to the right at all. > > > > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2 stretching escercies for neck muscles and suggested Dmitri gets a helmet.> > > > I have no faith or trust in Dmitri's pediatrician. I am scared to think I would have listened to him and just let my son be with such severe deformity.> > > > Since I am new to all this, could you give me your input on whether I am doing enough? Should I request CT scan or MRI? Should I as for physical therapy? Which brand of helmets is better: Star or Doc? > > Any information would be much appreciated!> > > > Regards,> > Katrina> >>

[Guest guest]

It depends on the surgeon and the case.  CTs are not necessarily SOP.  With a phsyical examination they generally know what's going on with out further expensive testing, but you can request it.  We go to an excellent crainofacial plastic surgeon.  In our case the surgeon was sure there was no fusing going on, but our daughter also had a tumor.  They did a series of x-rays on her as it was the least invasive option (and she was younger than two months at the time).  If there were any questions they would have done further testing, but the x-rays alone confirmed the type of tumor (well best that can be done until it's removed and sent to the lab) and the lack of fusing.  Had she not had the tumor, they wouldn't have ordered any tests unless I requested it.

Stay on top of the severe tort.  We went through PT multiple times a week for months and it improved drastically, but still not enough.  Elaine underwent surgery at 6months old to help resolve it, and it (along with follow up PT) did the trick. 

Elaine (twin A), helmet grad in June '09On Thu, Oct 8, 2009 at 6:28 PM, kosipovasunkissed <kosipovasunkissed@...> wrote:

 

Thank you for your response. I also heard about Cranial Technologies and have a consultation scheduled already. I just hope that my insurance will work with them.

I called my sons pediatrician's office today asking for a referral to physical theraphy and they acted as if they never heard about PT for torticollis. I insisted and they are working on it now.

I am also wondering why the neurosurgeon didn't order CT scan or MRI right away to rule out craniosinostosis... Any ideas?

> >

> > Hi, dear moms and dads!

> >

> > I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant assymetry and preferred left side. But his pediatrician was not concerned, he said my son would " grow out of it " .

> >

> > Now at 3 months I am really alarmed. At this point my son's head is so flat on the left, that that is the only side he would lay on and he doesn't turn his head to the right at all.

> >

> > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2 stretching escercies for neck muscles and suggested Dmitri gets a helmet.

> >

> > I have no faith or trust in Dmitri's pediatrician. I am scared to think I would have listened to him and just let my son be with such severe deformity.

> >

> > Since I am new to all this, could you give me your input on whether I am doing enough? Should I request CT scan or MRI? Should I as for physical therapy? Which brand of helmets is better: Star or Doc?

> > Any information would be much appreciated!

> >

> > Regards,

> > Katrina

> >

>

[Guest guest]

Hi! You are lucky starting early. My son had an assymetry of 20mm and was put

in the band at 4 months. He just graduated from it yesterday (3 months earlier

than they anticipated at the beginning). They also said he was very severe and

our hopes were very low. But the results have been amazing. Very focused on

stretching his neck out (5 times a day) and he wore the helmet 23 hours a day

with weekly adjustments at the hospital. Now he looks great. He still has slight

assymetry but he is basically perfect. We were with Cranial Technologies. If you

want any more advice, please let me know I'd be happy to help.

> >

> > Hi, dear moms and dads!

> >

> > I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant

assymetry and preferred left side. But his pediatrician was not concerned, he

said my son would " grow out of it " .

> >

> > Now at 3 months I am really alarmed. At this point my son's head is so flat

on the left, that that is the only side he would lay on and he doesn't turn his

head to the right at all.

> >

> > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever

plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2

stretching escercies for neck muscles and suggested Dmitri gets a helmet.

> >

> > I have no faith or trust in Dmitri's pediatrician. I am scared to think I

would have listened to him and just let my son be with such severe deformity.

> >

> > Since I am new to all this, could you give me your input on whether I am

doing enough? Should I request CT scan or MRI? Should I as for physical

therapy? Which brand of helmets is better: Star or Doc?

> > Any information would be much appreciated!

> >

> > Regards,

> > Katrina

> >

>

[Guest guest]

Luckily we did not have to see the neurosurgeon. Two reasons they might not have

done a MRI or CT is age or insurance.If you are concerned call the surgeon and

ask.

Mom of a beautiful banded baby girl

> > >

> > > Hi, dear moms and dads!

> > >

> > > I am a mom of the 3 month old Dmitri. Since birth my son had a

signifficant assymetry and preferred left side. But his pediatrician was not

concerned, he said my son would " grow out of it " .

> > >

> > > Now at 3 months I am really alarmed. At this point my son's head is so

flat on the left, that that is the only side he would lay on and he doesn't turn

his head to the right at all.

> > >

> > > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever

plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2

stretching escercies for neck muscles and suggested Dmitri gets a helmet.

> > >

> > > I have no faith or trust in Dmitri's pediatrician. I am scared to think I

would have listened to him and just let my son be with such severe deformity.

> > >

> > > Since I am new to all this, could you give me your input on whether I am

doing enough? Should I request CT scan or MRI? Should I as for physical

therapy? Which brand of helmets is better: Star or Doc?

> > > Any information would be much appreciated!

> > >

> > > Regards,

> > > Katrina

> > >

> >

>

[Guest guest]

We're in UK so cant help you with choice of helmets, but just to give you reassurance, our granddaughter D was also classed severe at 2.5cm . The paed was confident she didnt have craniosinostosis as was the cranio sacral therapist with whom they had a few sessions so there was no scan or xray.  She had physio twice a week with repeats at home  for the tort and a Cranio helmet by 5mths. Now at 8mths she is unbelievably down to 4mm and the tort seems resolved. My daughter also bought her a sleepcurve mattress to keep the pressure off her head in the weeks before helmet fitting .and thick dense sheepskins to lie on/against when there was no alternative during the day (such as in buggy) ,So, dont worry too much that the plagio is so severe, it can still all come good. Good luck.

 

 

On Fri, Oct 9, 2009 at 7:39 PM, kimhester@... <kimhester@...> wrote:

 

Luckily we did not have to see the neurosurgeon. Two reasons they might not have done a MRI or CT is age or insurance.If you are concerned call the surgeon and ask. Mom of a beautiful banded baby girl

> > >> > > Hi, dear moms and dads!> > > > > > I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant assymetry and preferred left side. But his pediatrician was not concerned, he said my son would " grow out of it " .

> > > > > > Now at 3 months I am really alarmed. At this point my son's head is so flat on the left, that that is the only side he would lay on and he doesn't turn his head to the right at all.

> > > > > > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2 stretching escercies for neck muscles and suggested Dmitri gets a helmet.

> > > > > > I have no faith or trust in Dmitri's pediatrician. I am scared to think I would have listened to him and just let my son be with such severe deformity.> > > > > > Since I am new to all this, could you give me your input on whether I am doing enough? Should I request CT scan or MRI? Should I as for physical therapy? Which brand of helmets is better: Star or Doc?

> > > Any information would be much appreciated!> > > > > > Regards,> > > Katrina> > >> >>

[Guest guest]

I am new to this group but had to reply. You sound like your in the same boat

that I was in with my twins. 1 son had Tort and Plagio and the other had

Plagio. We noticed the torticollis at 2 months. Our ped sent us in for x-rays

and then referred us to physical therapy which he was in for 1 year. We tried

everything to change his sleeping position. We got a special headrest for the

car seat which stopped him from turning his neck. Working with the therapist

really did help especailly as he got older and mobile. It turns out he didn't

need the helment but...the other twin did. He was put in the starband at 7

months and was in it for 4 months. My advice is to get a referral to a

therapist that is experienced with infants and torticollis. We are in viginia

and went to CHKD.

~

>

> Hi, dear moms and dads!

>

> I am a mom of the 3 month old Dmitri. Since birth my son had a signifficant

assymetry and preferred left side. But his pediatrician was not concerned, he

said my son would " grow out of it " .

>

> Now at 3 months I am really alarmed. At this point my son's head is so flat on

the left, that that is the only side he would lay on and he doesn't turn his

head to the right at all.

>

> I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever

plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2

stretching escercies for neck muscles and suggested Dmitri gets a helmet.

>

> I have no faith or trust in Dmitri's pediatrician. I am scared to think I

would have listened to him and just let my son be with such severe deformity.

>

> Since I am new to all this, could you give me your input on whether I am doing

enough? Should I request CT scan or MRI? Should I as for physical therapy?

Which brand of helmets is better: Star or Doc?

> Any information would be much appreciated!

>

> Regards,

> Katrina

>

[Guest guest]

Hi Katrina,

My son has severe plagio – his asymmetry was 2 cm when he was 2 months old and

started wearing the helmet. He has been wearing his helmet for a little over

two months now, and his asymmetry is down to .5 cm. His head was also totally

flat on one side when we started. We couldn't get him to lie in any other

position. The results we have seen so far are just phenomenal. At this point,

you can hardly tell in the back. He still has some growing to do in his brow

which I have been told is the slowest part to grow. Our doctor said he would

probably be in his helmet 4-6 months total, and since we started when he was so

young we should see a good result.

Our doctor did x rays of my son's head before we even started to rule out

craniosynostosis. I guess this condition is pretty rare, but if your child does

have it, then the treatment plan would be different.

I think you are doing the right thing by seeing the specialists. The initial

doctor's appointments and the first few weeks in the helmet are a trying time,

but it is amazing how quickly you and your child will adapt if a helmet is

needed.

Good luck!

> > > >

> > > > Hi, dear moms and dads!

> > > >

> > > > I am a mom of the 3 month old Dmitri. Since birth my son had a

signifficant assymetry and preferred left side. But his pediatrician was not

concerned, he said my son would " grow out of it " .

> > > >

> > > > Now at 3 months I am really alarmed. At this point my son's head is so

flat on the left, that that is the only side he would lay on and he doesn't turn

his head to the right at all.

> > > >

> > > > I insisted on referral to a neurosurgeon who diagnosed Dmitri with sever

plagiocephaly and torticollis. His assymetry is 2.2 cm !!! He showed us 2

stretching escercies for neck muscles and suggested Dmitri gets a helmet.

> > > >

> > > > I have no faith or trust in Dmitri's pediatrician. I am scared to think

I would have listened to him and just let my son be with such severe deformity.

> > > >

> > > > Since I am new to all this, could you give me your input on whether I am

doing enough? Should I request CT scan or MRI? Should I as for physical

therapy? Which brand of helmets is better: Star or Doc?

> > > > Any information would be much appreciated!

> > > >

> > > > Regards,

> > > > Katrina

> > > >

> > >

> >

>