Re: Travel for Treatment...any tips??

[Guest guest]

Hi AMY

We live in Arlington Heights IL and go to the Oakbrook Terrace location. If you have any questions about the area, airports, transportation or anything - please email me at merleebird@... and I would be happy to answer anything!!

Kimamynvb <amyn27@...> wrote:

We've decided to get our Aidan casted for a DOC Band and discontinue using our helmet. We've had so many fit issues with the helmet...my Mommy instinct is telling me that we should make this change. We've been in for adjustments almost every week since he's had the helmet and I still don't feel confident that it fits properly or that the "pressure points" are in the right place. I had to bring to the attention of the ortho that it was tight on the left side of the forehead where it should be more open for growth. And he said he didn't realize there was any facial asymmetry..that he thought the focus was just on the back of his head. UGGHH! I've been so frustrated that we decided to either give up all together and continue to keep him off his back or switch to an active band. He just turned 9 months over the weekend

so I'm hoping we still see good correction! It's a long story...but we emailed pictures of Aidan to Carol in the headquarteers for Cranial Tech and she thinks his plagio is moderate..not mild...which is what we've been told by every doctor we've seen here. We'll be travelling from a suburb of Detroit to Chicago every 2 weeks..the Oakbrook Terrace Office...anyone familiar with this one and which orthotists are recommended?? We may actually get him casted next week in Arizona (if we can find cheap tickets) so we don't get delayed by another 2-3 weeks. I talked to Kay in Chicago today and she said we don't have to do the quick turn around thing because he's not growing as quickly as a 5 month old but I think my guilt is continuing to grow and I don't want to lose time. So we'll either be in Chicago at the beginning of the week for casting or in arizona sometime next week...wish us luck! Amy

(Aidan V's Mom) For more plagio info

[Guest guest]

Amy,

I feel your pain!!! My daughter is on her second helmet and she is being casted for her third tomorrow. My husband and I are looking to go out of state also to get this taken care of. When we got Kiley's first helmet, she was 5 months old. We were at the Ortho's office every week getting the helmet adjusted. Same problems as Aiden, pressure points off, red marks that would not go away etc... Kiley's head was actually rounding out nicely. The problem was that the helmet was now to big because of the adjustments. She would turn her head and it would fall off. We had her casted for the second helmet 1 month after receiving the 1st. It took 2 weeks for the helmet to come in, these are also made in Arizona. By the time the helmet came in, her head was flat again. We kept the big helmet on her and put padding in it to make it fit better, but it did not help. Two days after we got the 2nd

helmet, Kiley's head started to round out again. Now this helmet is getting big and her head is starting to regress (we got this helmet 2 weeks ago). We went to the Neuro Friday and he said he has never seen this before. He has never seen a head change so fast. He could not offer us an explanation. When she was first diagnosed with Tort and Plagio, she had an ultra-sound, an MRI and a Cat Scan done. Everything was normal. The doctor suggested we quit using the helmet and see what happens. We chose to keep it on and he wrote a prescription for her third helmet. This helmet will probably do the same as the first two. My husband and I are doing a little research and trying to find another doctor. It is so frustrating when a doctor says "I am sorry, I can not offer you an intelligent explanation." What???? I think the helmets

are not working because Kiley's head does change so fast. By the time the helmet comes in, it does not fit good and has to keep being adjusted. Let me know how it goes with Aiden in Chicago or Arizona. We may be traveling to Arizona soon!!! Also, let me know how the band works compared to the helmet. The Neuro recommended the helmet, he said it works better. I am thinking of trying the band.

Thanks,

Traci & Kiley amynvb <amyn27@...> wrote:

We've decided to get our Aidan casted for a DOC Band and discontinue using our helmet. We've had so many fit issues with the helmet...my Mommy instinct is telling me that we should make this change. We've been in for adjustments almost every week since he's had the helmet and I still don't feel confident that it fits properly or that the "pressure points" are in the right place. I had to bring to the attention of the ortho that it was tight on the left side of the forehead where it should be more open for growth. And he said he didn't realize there was any facial asymmetry..that he thought the focus was just on the back of his head. UGGHH! I've been so frustrated that we decided to either give up all together and continue to keep him off his back or switch to an active band. He just turned 9 months over the weekend

so I'm hoping we still see good correction! It's a long story...but we emailed pictures of Aidan to Carol in the headquarteers for Cranial Tech and she thinks his plagio is moderate..not mild...which is what we've been told by every doctor we've seen here. We'll be travelling from a suburb of Detroit to Chicago every 2 weeks..the Oakbrook Terrace Office...anyone familiar with this one and which orthotists are recommended?? We may actually get him casted next week in Arizona (if we can find cheap tickets) so we don't get delayed by another 2-3 weeks. I talked to Kay in Chicago today and she said we don't have to do the quick turn around thing because he's not growing as quickly as a 5 month old but I think my guilt is continuing to grow and I don't want to lose time. So we'll either be in Chicago at the beginning of the week for casting or in arizona sometime next week...wish us luck! Amy

(Aidan V's Mom) For more plagio info

[Guest guest]

Hi Amy:

I'm so sorry Aidan's helmet hasn't worked out & you'll now be faced

with the dreaded drive with child! But I'm sure you'll be happy with

the DOCband. How long of a drive is it from Detroit, about 4 hrs one

way?

We too drove from Grand Rapids to Chicago for my Abby's DOCband after

our first band didn't work. We were very very thrilled with her

DOCband & Cranial Tech's care. It was worth every last screaming

minute in the car for 5 mos!

I'm happy to hear Kay is still there, she was terrific. They

only have a couple physical/occupational therapists who work there,

and they've all been trained prior to being allowed to treat

patients, so you shouldn't have to worry about who to see, although

it never hurts to still ask them tons of questions. Kay was

there 3 yrs ago when we brought our Abby, so she's got plenty of

experience and knowledge.

Let us know if you end up flying to Phx for a casting. Best of luck

to you. Oh as for traveling, always bring someone for the drives and

if possible, stay overnight on occasion, we never stayed overnight,

but it would've been much easier sometimes!

I wish your other helmet would've worked, but I'm certain you'll be

happy w/the DOCband & Chicago from here on out.

Debbie Abby's mom DOCGrad

Grand Rapids, MI

> amynvb <amyn27@m...> wrote:

> We've decided to get our Aidan casted for a DOC Band and

discontinue

> using our helmet. We've had so many fit issues with the helmet...my

> Mommy instinct is telling me that we should make this change. We've

> been in for adjustments almost every week since he's had the helmet

> and I still don't feel confident that it fits properly or that

> the " pressure points " are in the right place. I had to bring to the

> attention of the ortho that it was tight on the left side of the

> forehead where it should be more open for growth. And he said he

> didn't realize there was any facial asymmetry..that he thought the

> focus was just on the back of his head. UGGHH! I've been so

> frustrated that we decided to either give up all together and

> continue to keep him off his back or switch to an active band.

> He just turned 9 months over the weekend so I'm hoping we still see

> good correction! It's a long story...but we emailed pictures of

> Aidan to Carol in the headquarteers for Cranial Tech and she thinks

> his plagio is moderate..not mild...which is what we've been told by

> every doctor we've seen here. We'll be travelling from a suburb of

> Detroit to Chicago every 2 weeks..the Oakbrook Terrace

> Office...anyone familiar with this one and which orthotists are

> recommended?? We may actually get him casted next week in Arizona

> (if we can find cheap tickets) so we don't get delayed by another 2-

> 3 weeks. I talked to Kay in Chicago today and she said we

don't

> have to do the quick turn around thing because he's not growing as

> quickly as a 5 month old but I think my guilt is continuing to grow

> and I don't want to lose time. So we'll either be in Chicago at the

> beginning of the week for casting or in arizona sometime next

> week...wish us luck!

>

>

> Amy (Aidan V's Mom)

>

>

>

> For more plagio info

[Guest guest]

Hi Amy, I just wanted to second everyting everyone else said and add

my best travel trip. Buy a portable DVD player!!! It has been

worth every cent. We used it our whole flight out to Phoenix and

back and also to our all our trips from Mass to Connecticut's

Cranial tech for adjustments. I'm so thankful for my DVD player and

Baby Einstein, LOL! Good luck, and let us know what you do about

the casting.

, mom to Hannah, DOC #3 3/30

Cape Cod, Ma

> > We've decided to get our Aidan casted for a DOC Band and

> discontinue

> > using our helmet. We've had so many fit issues with the

helmet...my

> > Mommy instinct is telling me that we should make this change.

We've

> > been in for adjustments almost every week since he's had the

helmet

> > and I still don't feel confident that it fits properly or that

> > the " pressure points " are in the right place. I had to bring to

the

> > attention of the ortho that it was tight on the left side of the

> > forehead where it should be more open for growth. And he said

he

> > didn't realize there was any facial asymmetry..that he thought

the

> > focus was just on the back of his head. UGGHH! I've been so

> > frustrated that we decided to either give up all together and

> > continue to keep him off his back or switch to an active band.

> > He just turned 9 months over the weekend so I'm hoping we still

see

> > good correction! It's a long story...but we emailed pictures of

> > Aidan to Carol in the headquarteers for Cranial Tech and she

thinks

> > his plagio is moderate..not mild...which is what we've been told

by

> > every doctor we've seen here. We'll be travelling from a suburb

of

> > Detroit to Chicago every 2 weeks..the Oakbrook Terrace

> > Office...anyone familiar with this one and which orthotists are

> > recommended?? We may actually get him casted next week in

Arizona

> > (if we can find cheap tickets) so we don't get delayed by

another 2-

> > 3 weeks. I talked to Kay in Chicago today and she said we

> don't

> > have to do the quick turn around thing because he's not growing

as

> > quickly as a 5 month old but I think my guilt is continuing to

grow

> > and I don't want to lose time. So we'll either be in Chicago at

the

> > beginning of the week for casting or in arizona sometime next

> > week...wish us luck!

> >

> >

> > Amy (Aidan V's Mom)

> >

> >

> >

> > For more plagio info