Re: Differences on each side of the face

[Guest guest]

I'm sorry if this has already been stated but - What band do you have?

Also, does your baby have Tort?

My dd has facial asym and had 2 bands - but it did not fix the facial asym. Hers is from the tort not all from the plagio.

Have you seen a craniofacial specialist? They maybe able to help you with the face shape.

I will also add - As my baby grew the face asym does get less noticable... not sure if it because I am more used to her face or if it truely is better - because sometimes I still see it - but her crooked little smile is just part of her and who she is!! :-)

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

Differences on each side of the face

My son has been in a band for 4 months and is 8 1/2 months old. His flat spot has improved significantly, but I have concerns about the front half of his head.

From his eyes to his ears, his face goes straight back on one side and slopes back on the other. So, it appears as though his face has slightly moved over to one side.

The shape of his helmet is exactly the same shape as his head was at the beginning of his treatment, except that there was room for the flat spot to fill in. So, there has been no change in the shape of his head elsewhere.

You can see from the outside of the helmet that it is sloped where the shape of his head is also. Unfortunately, the velcro is on this side too, so the band is weaker here & looks like it just caves in. I don't think it's actually caving in though, it was just made in the shape of his head, instead of being round.

From other people's experience, is this how your babies' plagio was treated? (just concentrating on filling in the flat spot?) At several appointments, I would keep bringing up the differences in the shape of his face from the right & the left side. (from the ears forward) I was always told not to worry about it & that that would work itself out. But he's pretty much grown out of the helmet now & there's been no change. I'm upset about this because if this is fixable, his most rapid growth period has passed.

I've also been told that there's nothing that can be done about ear misalignment. Do the ears never re-align?

Does anyone have any comments?

thanks

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[Guest guest]

My sons helmets are the sme as you described. His head in fact after number 1 helmet made dramatic changes. I as so happy about the shape of my mans head and would of stopped there after number 1. I was told by his OT that the second helmet he got was going to help with the alignment of his ears. He was placed in number 1 on 1-26-09 graduated by march 18 and just recieved number 2 on friday. We have seen no change in the alignment of his ears or eyes but they keep reassuring me that this is the last to correct and we should start to see a change with the way my son grows so we have our fingers crossed. We decided that after 3 weeks if we dont see at least a 1 mm change we will discontinue the helmet and walk away with what has already happened. I can notice my sons assymentry but i have also noticed that looking at people as I am out and about that no one

is perfect and my son is truely beautiful and his features play no role in the out come of his life. SO if it dont happen we are ok with that. We have also thought of the long road he has ahead in life with finding a partner in life and all and we know that when it comes to that his true love in life would look past the imperfections of his ears and eyes.ANyways good luck with your little precious one !!!

mom to Justice age 6 months in starband number 2 since 3-20-09

From: JenandLuli@... <JenandLuli@...>Subject: Re: Differences on each side of the facePlagiocephaly Date: Sunday, March 29, 2009, 7:03 AM

I'm sorry if this has already been stated but - What band do you have?Also, does your baby have Tort?My dd has facial asym and had 2 bands - but it did not fix the facial asym. Hers is from the tort not all from the plagio.Have you seen a craniofacial specialist? They maybe able to help you with the face shape.I will also add - As my baby grew the face asym does get less noticable... not sure if it because I am more used to her face or if it truely is better - because sometimes I still see it - but her crooked little smile is just part of her and who she is!! :-)

JenMom to Luli - 3 yrs oldTorticollis, Plagio, Syringomyelia Differences on each side of the face

My son has been in a band for 4 months and is 8 1/2 months old. His flat spot has improved significantly, but I have concerns about the front half of his head. From his eyes to his ears, his face goes straight back on one side and slopes back on the other. So, it appears as though his face has slightly moved over to one side. The shape of his helmet is exactly the same shape as his head was at the beginning of his treatment, except that there was room for the flat spot to fill in. So, there has been no change in the shape of his head elsewhere. You can see from the outside of the helmet that it is sloped where the shape of his head is also. Unfortunately, the velcro is on this side too, so the band is weaker here & looks like it just caves in. I don't think it's actually caving in though, it was just made in the shape of his head, instead of being round.From other people's experience, is this how your babies'

plagio was treated? (just concentrating on filling in the flat spot?) At several appointments, I would keep bringing up the differences in the shape of his face from the right & the left side. (from the ears forward) I was always told not to worry about it & that that would work itself out. But he's pretty much grown out of the helmet now & there's been no change. I'm upset about this because if this is fixable, his most rapid growth period has passed.I've also been told that there's nothing that can be done about ear misalignment. Do the ears never re-align?Does anyone have any comments? thanks

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[Guest guest]

I don't think my son's band has a brand name. I asked once if it was a Doc

band. I was told that it wasn't & that it's made at a local hosiptal. I'm in

Canada.

Yes, my baby has torticollis. How would I know if the facial asym was from that

or the plagio?

We saw a neurosurgeon last week. He kept commenting on how great he looked. He

wasn't concerned about his facial asym. No one seems to be but me. Maybe I'm

being too particular.

>

>

> I'm sorry if this has already been stated but - What band do you have?

>

> Also, does your baby have Tort?

>

> My dd has facial asym and had 2 bands - but it did not fix the facial asym.?

Hers is from the tort not all from the plagio.

>

> Have you seen a craniofacial specialist?? They maybe able to help you with the

face shape.

>

> I will also add - As my baby grew the face asym does get less noticable... not

sure if it because I am more used to her face or if it truely is better -

because sometimes I still see it - but her crooked little smile is just part of

her and who she is!!? :-)

>

>

>

> Jen

> Mom to Luli - 3 yrs old

> Torticollis, Plagio, Syringomyelia

>

>

> Differences on each side of the face

>

>

>

>

>

>

> My son has been in a band for 4 months and is 8 1/2 months old. His flat spot

has improved significantly, but I have concerns about the front half of his

head.

>

> From his eyes to his ears, his face goes straight back on one side and slopes

back on the other. So, it appears as though his face has slightly moved over to

one side.

>

> The shape of his helmet is exactly the same shape as his head was at the

beginning of his treatment, except that there was room for the flat spot to fill

in. So, there has been no change in the shape of his head elsewhere.

>

> You can see from the outside of the helmet that it is sloped where the shape

of his head is also. Unfortunately, the velcro is on this side too, so the band

is weaker here & looks like it just caves in. I don't think it's actually caving

in though, it was just made in the shape of his head, instead of being round.

>

> From other people's experience, is this how your babies' plagio was treated?

(just concentrating on filling in the flat spot?) At several appointments, I

would keep bringing up the differences in the shape of his face from the right &

the left side. (from the ears forward) I was always told not to worry about it &

that that would work itself out. But he's pretty much grown out of the helmet

now & there's been no change. I'm upset about this because if this is fixable,

his most rapid growth period has passed.

>

> I've also been told that there's nothing that can be done about ear

misalignment. Do the ears never re-align?

>

> Does anyone have any comments?

>

> thanks

>

[Guest guest]

I'm concerned with Elly's face.  She has made excellent progress with the helmet regarding assm. though.  The rest will just take time.  Due to the way she was squished the last couple months of pregnancy her entire right side of her face is smaller.  She also developed severe tort.  I know a girl who actually had a similar issue and was very lopsided.  She's close to graduating high school so this was long before helmets were offered.  Her face evened of it's own accord enough by the time she was four that you could barely notice it.  We see a craniofacial plastic surgeon and she say all of Elaine's facial asymmetry is " slight " and shouldn't even need to be addressed beyond what the helmet is helping.  In time now that her growth isn't restricted, it will continue to even out.  I still worry about it as I don't see it as 'slight' but I'm her mom so I guess worrying is normal.

 

The helmet has helped her though.  They left room in the forehead for the front to round out as much as the back, and it's made a big difference.  I was told that the ears and face are generally last on the list to realign, along with the base of the scull.  They were right.  She was into her second helmet before we started seeing significant changed in her asymmetry.

 

Elaine (twin A), plagio & tort, 2nd helmet since 1/5/09, 10mos old

On Mon, Mar 30, 2009 at 11:25 PM, maria01508 <maria01508@...> wrote:

I don't think my son's band has a brand name. I asked once if it was a Doc band. I was told that it wasn't & that it's made at a local hosiptal. I'm in Canada.Yes, my baby has torticollis. How would I know if the facial asym was from that or the plagio?

We saw a neurosurgeon last week. He kept commenting on how great he looked. He wasn't concerned about his facial asym. No one seems to be but me. Maybe I'm being too particular.

>> > I'm sorry if this has already been stated but - What band do you have?

> > Also, does your baby have Tort?> > My dd has facial asym and had 2 bands - but it did not fix the facial asym.? Hers is from the tort not all from the plagio.> > Have you seen a craniofacial specialist?? They maybe able to help you with the face shape.

> > I will also add - As my baby grew the face asym does get less noticable... not sure if it because I am more used to her face or if it truely is better - because sometimes I still see it - but her crooked little smile is just part of her and who she is!!? :-)

> > > > Jen> Mom to Luli - 3 yrs old> Torticollis, Plagio, Syringomyelia> > > Differences on each side of the face

> > > > > > > My son has been in a band for 4 months and is 8 1/2 months old. His flat spot has improved significantly, but I have concerns about the front half of his head.

> > From his eyes to his ears, his face goes straight back on one side and slopes back on the other. So, it appears as though his face has slightly moved over to one side. > > The shape of his helmet is exactly the same shape as his head was at the beginning of his treatment, except that there was room for the flat spot to fill in. So, there has been no change in the shape of his head elsewhere.

> > You can see from the outside of the helmet that it is sloped where the shape of his head is also. Unfortunately, the velcro is on this side too, so the band is weaker here & looks like it just caves in. I don't think it's actually caving in though, it was just made in the shape of his head, instead of being round.

> > From other people's experience, is this how your babies' plagio was treated? (just concentrating on filling in the flat spot?) At several appointments, I would keep bringing up the differences in the shape of his face from the right & the left side. (from the ears forward) I was always told not to worry about it & that that would work itself out. But he's pretty much grown out of the helmet now & there's been no change. I'm upset about this because if this is fixable, his most rapid growth period has passed.

> > I've also been told that there's nothing that can be done about ear misalignment. Do the ears never re-align?> > Does anyone have any comments? > > thanks>

[Guest guest]

I was told that I was looking at my daughter too closely! @@

Is the smaller side of the face on the tort side? For my dd she has left tort and the smaller side is the left... but her left hip is higher and her left leg is slightly shorter too.

In her various scans (CT and MRI) her skull base is higher on the left too - which is what I think is contributing to the tort.

Again, my dd's face has started to look more "normal" and people don't see it in her - But when I hold her up to a mirror or look at pics of her I (and others) can clearly see it.

Neurosurgeons - and even craniofacial drs - will not see a minor asym as a problem... they see so many case that are severe. A minor case is not something that they see as a problem. I remember going to the craniofacial drs and in the waiting room I started to feel bad for even being there - So many of these babies had severe facial problems. I can deal with a crooked smile!

Jen

Mom to Luli - 3 yrs old

Torticollis, Plagio, Syringomyelia

Differences on each side of the face

>

>

>

>

>

>

> My son has been in a band for 4 months and is 8 1/2 months old. His flat spot has improved significantly, but I have concerns about the front half of his head.

>

> From his eyes to his ears, his face goes straight back on one side and slopes back on the other. So, it appears as though his face has slightly moved over to one side.

>

> The shape of his helmet is exactly the same shape as his head was at the beginning of his treatment, except that there was room for the flat spot to fill in. So, there has been no change in the shape of his head elsewhere.

>

> You can see from the outside of the helmet that it is sloped where the shape of his head is also. Unfortunately, the velcro is on this side too, so the band is weaker here & looks like it just caves in. I don't think it's actually caving in though, it was just made in the shape of his head, instead of being round.

>

> From other people's experience, is this how your babies' plagio was treated? (just concentrating on filling in the flat spot?) At several appointments, I would keep bringing up the differences in the shape of his face from the right & the left side. (from the ears forward) I was always told not to worry about it & that that would work itself out. But he's pretty much grown out of the helmet now & there's been no change. I'm upset about this because if this is fixable, his most rapid growth period has passed.

>

> I've also been told that there's nothing that can be done about ear misalignment. Do the ears never re-align?

>

> Does anyone have any comments?

>

> thanks

>

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[Guest guest]

I hear you on that.  Plagio/brachey & tort even as bad as Elly has it is still mild compared to what they see.  Yes the smaller side of her face is the side with all the tight neck muscles.  It's also the " up " side of her crooked smile.  Her jaw doesn't meet on her left side it's that smushed which is why I don't see it as 'slight' in the least.  Though it is SO much better than when she was born.  The only fix (other than what the helmet can help with and time) is a very involved surgery where they basically break her jaw and rebuild it.  Not something they will even consider before the age of 4, and probably best left until after she has her adult teeth in if she does need it.

 

As for her skull shape, sounds about the same as you're describing.  It was very round and even bulgy on her tort side and generally flatter (not necessarily her flat spot either) on the non tort.  I could tell it was how she grew before she was born, and continued to grow after due to how bad her tort was.  It's hard to say how much the tort changes the skull shape and how much the skull shape will cause tort, but there's a well documented link.  She's not better enough imo regarding her tort.  I think she'll be going in for a second surgery to help release a knot that just won't give.  Three + months of PT 3 times a week after her first surgery have helped in other areas, but the one still tight area of her SCM refuses to release at all (different area than the first surgery).  We'll find out when we talk to the surgeon later this week.

 

Elaine (twin A), plagio & tort, 2nd helmet since 1/5/09, 10mos old

 

On Tue, Mar 31, 2009 at 11:43 AM, <JenandLuli@...> wrote:

I was told that I was looking at my daughter too closely!  @@Is the smaller side of the face on the tort side?  For my dd she has left tort and the smaller side is the left... but her left hip is higher and her left leg is slightly shorter too.

In her various scans (CT and MRI) her skull base is higher on the left too - which is what I think is contributing to the tort.Again, my dd's face has started to look more " normal " and people don't see it in her - But when I hold her up to a mirror or look at pics of her I (and others) can clearly see it.

Neurosurgeons - and even craniofacial drs - will not see a minor asym as a problem... they see so many case that are severe.  A minor case is not something that they see as a problem.  I remember going to the craniofacial drs and in the waiting room I started to feel bad for even being there - So many of these babies had severe facial problems.  I can deal with a crooked smile!

JenMom to Luli - 3 yrs oldTorticollis, Plagio, Syringomyelia Differences on each side of the face> > > > > > > My son has been in a band for 4 months and is 8 1/2 months old. His flat spot has improved significantly, but I have concerns about the front half of his head.

> > From his eyes to his ears, his face goes straight back on one side and slopes back on the other. So, it appears as though his face has slightly moved over to one side. > > The shape of his helmet is exactly the same shape as his head was at the beginning of his treatment, except that there was room for the flat spot to fill in. So, there has been no change in the shape of his head elsewhere.

> > You can see from the outside of the helmet that it is sloped where the shape of his head is also. Unfortunately, the velcro is on this side too, so the band is weaker here & looks like it just caves in. I don't think it's actually caving in though, it was just made in the shape of his head, instead of being round.

> > From other people's experience, is this how your babies' plagio was treated? (just concentrating on filling in the flat spot?) At several appointments, I would keep bringing up the differences in the shape of his face from the right & the left side. (from the ears forward) I was always told not to worry about it & that that would work itself out. But he's pretty much grown out of the helmet now & there's been no change. I'm upset about this because if this is fixable, his most rapid growth period has passed.

> > I've also been told that there's nothing that can be done about ear misalignment. Do the ears never re-align?> > Does anyone have any comments? > > thanks>

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