Re: Trouble at Cranial Tech

[Guest guest]

I'm curious which CT site you are at. Honestly, we went for an eval at

CT and were not too impressed. They couldn't make us a band and since

then we've been happy with our older Starband. Other than the fact

they could not make us a band, which we complained to this board about,

there were other small things we noticed. I don't want to knock CT too

much, since I know they have helped so many babies! We went to the

Pasadena site and I vaguely recall a couple other emails on this board

questioning this site. Perhaps, our opinion would be better if we had

been able to try a DOCband. Or maybe, CT is not for everyone.

edpsp wrote:

It seems like everyone loves their CT experience, but I have to

say I'm disturbed by a few things. My child is 11 months, in the band

for 9 weeks for plagio. She has torticollis which we spotted right away

and has been in PT since 7 weeks old. I saw the flat spot develop and

asked drs, pt, etc., about helmeting at 3-4 months and was told not to

worry about it. Finally got one at 9 months. Familiar story.

We've seen some rounding out in the flat spot in the back and filling

out in the front on the other side. My concern is really about the

skull base asymmetry because if the place where the sternocleidomastoid

muscles attach is not the same, I can't see how they'll ever be equal

in length, strength, and flexibility. I think the bad advise had us

miss the boat on this. We'll never get the ears in line so the

torticollis will always be a problem even if improved. Maybe that

sounds fatalistic, but I've been dragging this baby to a reputable PT

twice a week and having our own torture sessions at home 4-5 times a

day for 9 months. I'm a bit fed up, but won't finish PT for another 6

months at least.

Anyway, it's not CTs fault the helmets won't correct much skull base

asym if you don't get them early. My problem with CT is that from the

start I felt like the helmet didn't hold on the high point over/behind

her left ear. I'd ask and the tech would talk in circles around the

question. In the last 2-3 appts as growth has slowed I asked if they

really needed to shave the foam every visit. What if she hadn't grown

in the 2 weeks? The fit is getting worse, becoming more tilted and

rotating more because she hadn't yet grown into the space put there in

the previous adjustment. Again, the tech talked in circles. She said

what if there's a growth spurt in the coming 2 weeks. There needs to be

room for it. I said there already is room from the previous adjustment.

This went around and around. Ultimately it seems that no matter what

you ask/say CT techs will never admit there is any kind of a problem.

So, maybe that's my question. Has anyone had an experience where CT

said there was a problem with the helmet they made? Do they shave foam

every single time with or without growth between appointments? Every

time we go the tech looks at her head and claims to see rounding since

the last appointment. They see many, many kids, each for a few minutes.

I don't believe she remembers my kid's head well enough to see such

minute changes every 2 weeks. I think it's just their standard scripted

line to parents.

To make a long rambling story longer (sorry), the tech now wants us to

buy a second helmet already. This is really my husbands fault, but the

tech jumped all over the chance to upsell us. We were told she'd use

the helmet probably for 3-4 months depending on growth. We have not had

any growth spurts so I don't see how she could be growing out of this

one early. Nonetheless, when I was saying it wasn't fitting as well and

she hadn't grown into the space already made in it, the tech said they

lose strength on the holding points. My husband asked if that meant we

needed a new helmet. I want to know why it would be losing

effectiveness in less than 2 months when it was sold to us as lasting

twice this long?

I think she will need another helmet which we would have to pay for out

of pocket, but I want to get full use out of both. Would you schedule a

DSi in 2 weeks so we'd get a new helmet in about 4 after only 13 weeks

or less in the band? Would you push it off for 4 weeks so we'd get

about 15 weeks in it? Or would it be best to get a new band as early as

possible because they are most effective in the beginning?

Has anyone else felt like CT is just a factory with techs trained to do

and say the same thing for every baby? Has anyone switched from a

DOCband to Starband or some other active helmet?

If anyone is till reading this far I thank you for that and for any

response you may be able to offer.

[Guest guest]

Have they done another photostudy of her head yet? If not, I recommend you ask for one. She might have made more progress than you may think. A photostudy might help you see that. Also, if there is no more foam left to shave off the band, then that might be the reason why they are recommending a new band early. From what I understand, the holding points hold better at the start.

My daughter got her first DOC band at 9.5 months and outgrew it in three months. I expected her to wear it for a 4 months but, to my surprise, there was nothing to shave off the band after 3 months and we ended up getting a new one when she was 12.5 months old.

If you look at Maysa's blog, you'll notice that I trusted CT but that in parallel, I frequently took her for starscan report from orthomerica to double check on her progress.

I hope you find the answers to your quesions,

Leila,Maysa, 2 yo, DOC band Grad 5.26.09www.mymaysa.wordpress.com

From: edpsp <edpsp@...>Subject: Trouble at Cranial TechPlagiocephaly Date: Saturday, February 27, 2010, 2:54 PM

It seems like everyone loves their CT experience, but I have to say I'm disturbed by a few things. My child is 11 months, in the band for 9 weeks for plagio. She has torticollis which we spotted right away and has been in PT since 7 weeks old. I saw the flat spot develop and asked drs, pt, etc., about helmeting at 3-4 months and was told not to worry about it. Finally got one at 9 months. Familiar story.We've seen some rounding out in the flat spot in the back and filling out in the front on the other side. My concern is really about the skull base asymmetry because if the place where the sternocleidomastoid muscles attach is not the same, I can't see how they'll ever be equal in length, strength, and flexibility. I think the bad advise had us miss the boat on this. We'll never get the ears in line so the torticollis will always be a problem even if improved. Maybe that sounds fatalistic, but I've been dragging this baby to a reputable PT

twice a week and having our own torture sessions at home 4-5 times a day for 9 months. I'm a bit fed up, but won't finish PT for another 6 months at least.Anyway, it's not CTs fault the helmets won't correct much skull base asym if you don't get them early. My problem with CT is that from the start I felt like the helmet didn't hold on the high point over/behind her left ear. I'd ask and the tech would talk in circles around the question. In the last 2-3 appts as growth has slowed I asked if they really needed to shave the foam every visit. What if she hadn't grown in the 2 weeks? The fit is getting worse, becoming more tilted and rotating more because she hadn't yet grown into the space put there in the previous adjustment. Again, the tech talked in circles. She said what if there's a growth spurt in the coming 2 weeks. There needs to be room for it. I said there already is room from the previous adjustment. This went around and around.

Ultimately it seems that no matter what you ask/say CT techs will never admit there is any kind of a problem.So, maybe that's my question. Has anyone had an experience where CT said there was a problem with the helmet they made? Do they shave foam every single time with or without growth between appointments? Every time we go the tech looks at her head and claims to see rounding since the last appointment. They see many, many kids, each for a few minutes. I don't believe she remembers my kid's head well enough to see such minute changes every 2 weeks. I think it's just their standard scripted line to parents.To make a long rambling story longer (sorry), the tech now wants us to buy a second helmet already. This is really my husbands fault, but the tech jumped all over the chance to upsell us. We were told she'd use the helmet probably for 3-4 months depending on growth. We have not had any growth spurts so I don't see how she could be

growing out of this one early. Nonetheless, when I was saying it wasn't fitting as well and she hadn't grown into the space already made in it, the tech said they lose strength on the holding points. My husband asked if that meant we needed a new helmet. I want to know why it would be losing effectiveness in less than 2 months when it was sold to us as lasting twice this long? I think she will need another helmet which we would have to pay for out of pocket, but I want to get full use out of both. Would you schedule a DSi in 2 weeks so we'd get a new helmet in about 4 after only 13 weeks or less in the band? Would you push it off for 4 weeks so we'd get about 15 weeks in it? Or would it be best to get a new band as early as possible because they are most effective in the beginning? Has anyone else felt like CT is just a factory with techs trained to do and say the same thing for every baby? Has anyone switched from a DOCband to Starband

or some other active helmet? If anyone is till reading this far I thank you for that and for any response you may be able to offer.

[Guest guest]

First, I want to say that CT has always seemed very accomodating - and

any concern you have they will listen to. If you feel like the tech is

not hearing you, then go higher and talk to the office manager, if they

are not listening, then email corporate. I doubt you will need to go

that far, but in all the concerns I've seen here, CT always responds

and helps out with issues.

What really caught my eye was the " skull base asymmetry " . My dd also

has skull base asym and her tort will never be resolved. Have you been

to a craniofacial dr? No amount of PT will correct bone asym. My dd

also has spinal cord abnormalitiies and we wonder what damage all the

PT she had could have done to her spine. But that to say, that you are

correct, the band will not hep the skull basse, it is too deep and the

band does not adjust that part of the skull, but it can help lessen the

effects of plagio. My dd's ears were corrected by the band. But

piggytails will never look right.

Jen

Mom to Luli - 4 yrs old

Torticollis, Plagio, Syringomyelia

Trouble at Cranial Tech

It seems like everyone loves their CT experience, but I have to say I'm

disturbed by a few things. My child is 11 months, in the band for 9

weeks for plagio. She has torticollis which we spotted right away and

has been in PT since 7 weeks old. I saw the flat spot develop and asked

drs, pt, etc., about helmeting at 3-4 months and was told not to worry

about it. Finally got one at 9 months. Familiar story.

We've seen some rounding out in the flat spot in the back and filling

out in the front on the other side. My concern is really about the

skull base asymmetry because if the place where the sternocleidomastoid

muscles attach is not the same, I can't see how they'll ever be equal

in length, strength, and flexibility. I think the bad advise had us

miss the boat on this. We'll never get the ears in line so the

torticollis will always be a problem even if improved. Maybe that

sounds fatalistic, but I've been dragging this baby to a reputable PT

twice a week and having our own torture sessions at home 4-5 times a

day for 9 months. I'm a bit fed up, but won't finish PT for another 6

months at least.

Anyway, it's not CTs fault the helmets won't correct much skull base

asym if you don't get them early. My problem with CT is that from the

start I felt like the helmet didn't hold on the high point over/behind

her left ear. I'd ask and the tech would talk in circles around the

question. In the last 2-3 appts as growth has slowed I asked if they

really needed to shave the foam every visit. What if she hadn't grown

in the 2 weeks? The fit is getting worse, becoming more tilted and

rotating more because she hadn't yet grown into the space put there in

the previous adjustment. Again, the tech talked in circles. She said

what if there's a growth spurt in the coming 2 weeks. There needs to be

room for it. I said there already is room from the previous adjustment.

This went around and around. Ultimately it seems that no matter what

you ask/say CT techs will never admit there is any kind of a problem.

So, maybe that's my question. Has anyone had an experience where CT

said there was a problem with the helmet they made? Do they shave foam

every single time with or without growth between appointments? Every

time we go the tech looks at her head and claims to see rounding since

the last appointment. They see many, many kids, each for a few minutes.

I don't believe she remembers my kid's head well enough to see such

minute changes every 2 weeks. I think it's just their standard scripted

line to parents.

To make a long rambling story longer (sorry), the tech now wants us to

buy a second helmet already. This is really my husbands fault, but the

tech jumped all over the chance to upsell us. We were told she'd use

the helmet probably for 3-4 months depending on growth. We have not had

any growth spurts so I don't see how she could be growing out of this

one early. Nonetheless, when I was saying it wasn't fitting as well and

she hadn't grown into the space already made in it, the tech said they

lose strength on the holding points. My husband asked if that meant we

needed a new helmet. I want to know why it would be losing

effectiveness in less than 2 months when it was sold to us as lasting

twice this long?

I think she will need another helmet which we would have to pay for out

of pocket, but I want to get full use out of both. Would you schedule a

DSi in 2 weeks so we'd get a new helmet in about 4 after only 13 weeks

or less in the band? Would you push it off for 4 weeks so we'd get

about 15 weeks in it? Or would it be best to get a new band as early as

possible because they are most effective in the beginning?

Has anyone else felt like CT is just a factory with techs trained to do

and say the same thing for every baby? Has anyone switched from a

DOCband to Starband or some other active helmet?

If anyone is till reading this far I thank you for that and for any

response you may be able to offer.

[Guest guest]

I don't agree that skull base cannot be corrected if not done early.

My son didn't start his band until 9 month and at the age your son is

at we had probably seen no skull base improvement. But back then they

had molds so even though that made me think he was making no

improvement the mold always reminded me how far he had come. The

skull base was the very last thing we saw improvement in, I think it

only started in our last month and the most was the last 2 wks. So if

you are not that far you may not see any yet. And my son had severe

ear assymetry as well as some minor facial assymetry. It wasn't until

the skull base improvement that we saw those improve either so I was

very paranoid that it wouldn't get done b/c the ears concerned me

most.

Yes, the helmet was shaved every visit even with less growth but less

growth meant less shaving. No he never grew completely into it, that

would be bad as it would change pressure areas. Yes it fit worse over

the one side but he had almost like a lump behind and above his 1 ear

and the ear assymetry.

Yes, he outgrew it in only 12 wks so it didn't last the 16 even though

he was older. But he ended up not being recommended for a 2nd band.

As for staff, some staff I did feel at times were scripted

encouragement but at the same time I wouldn't want to be discouraged

either. I also felt that some were almost non chalant, like oh you

are asking such a dumb question or I am so tired of answering that

type attitude. But many others were great. Can you see a different

orthotist?

For us it didn't matter, hanger was our other choice and they would

have agreed to treat even though they " could see he had very obvious

assymetry " they measured him as within normal. They also told us they

don't ever see ear improvement and didn't even scan enough to be able

to measure skull base and ears. Forget that. Instead when I called

ct back to find out about ear assymetry specifically b/c of what

hanger said ct was able to very thoroughly explain that ear assymetry

had to do with skull base assymetry and the skull base is more and

smaller bones therefore harder to change and also takes longer to

change but that they do indeed get improvement in skull base and ear

assymetry.

On 2/27/10, edpsp <edpsp@...> wrote:

> It seems like everyone loves their CT experience, but I have to say I'm

> disturbed by a few things. My child is 11 months, in the band for 9 weeks

> for plagio. She has torticollis which we spotted right away and has been in

> PT since 7 weeks old. I saw the flat spot develop and asked drs, pt, etc.,

> about helmeting at 3-4 months and was told not to worry about it. Finally

> got one at 9 months. Familiar story.

>

> We've seen some rounding out in the flat spot in the back and filling out in

> the front on the other side. My concern is really about the skull base

> asymmetry because if the place where the sternocleidomastoid muscles attach

> is not the same, I can't see how they'll ever be equal in length, strength,

> and flexibility. I think the bad advise had us miss the boat on this. We'll

> never get the ears in line so the torticollis will always be a problem even

> if improved. Maybe that sounds fatalistic, but I've been dragging this baby

> to a reputable PT twice a week and having our own torture sessions at home

> 4-5 times a day for 9 months. I'm a bit fed up, but won't finish PT for

> another 6 months at least.

>

> Anyway, it's not CTs fault the helmets won't correct much skull base asym if

> you don't get them early. My problem with CT is that from the start I felt

> like the helmet didn't hold on the high point over/behind her left ear. I'd

> ask and the tech would talk in circles around the question. In the last 2-3

> appts as growth has slowed I asked if they really needed to shave the foam

> every visit. What if she hadn't grown in the 2 weeks? The fit is getting

> worse, becoming more tilted and rotating more because she hadn't yet grown

> into the space put there in the previous adjustment. Again, the tech talked

> in circles. She said what if there's a growth spurt in the coming 2 weeks.

> There needs to be room for it. I said there already is room from the

> previous adjustment. This went around and around. Ultimately it seems that

> no matter what you ask/say CT techs will never admit there is any kind of a

> problem.

>

> So, maybe that's my question. Has anyone had an experience where CT said

> there was a problem with the helmet they made? Do they shave foam every

> single time with or without growth between appointments? Every time we go

> the tech looks at her head and claims to see rounding since the last

> appointment. They see many, many kids, each for a few minutes. I don't

> believe she remembers my kid's head well enough to see such minute changes

> every 2 weeks. I think it's just their standard scripted line to parents.

>

> To make a long rambling story longer (sorry), the tech now wants us to buy a

> second helmet already. This is really my husbands fault, but the tech jumped

> all over the chance to upsell us. We were told she'd use the helmet probably

> for 3-4 months depending on growth. We have not had any growth spurts so I

> don't see how she could be growing out of this one early. Nonetheless, when

> I was saying it wasn't fitting as well and she hadn't grown into the space

> already made in it, the tech said they lose strength on the holding points.

> My husband asked if that meant we needed a new helmet. I want to know why it

> would be losing effectiveness in less than 2 months when it was sold to us

> as lasting twice this long?

>

> I think she will need another helmet which we would have to pay for out of

> pocket, but I want to get full use out of both. Would you schedule a DSi in

> 2 weeks so we'd get a new helmet in about 4 after only 13 weeks or less in

> the band? Would you push it off for 4 weeks so we'd get about 15 weeks in

> it? Or would it be best to get a new band as early as possible because they

> are most effective in the beginning?

>

> Has anyone else felt like CT is just a factory with techs trained to do and

> say the same thing for every baby? Has anyone switched from a DOCband to

> Starband or some other active helmet?

>

> If anyone is till reading this far I thank you for that and for any response

> you may be able to offer.

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

Girl Scout cookies are coming!

[Guest guest]

Which CT were you at? Which city?

KIM DAVIS, PH.D.

Clinical Psychologist, PSY 21796

Individual, Couples, Adolescent & Child Psychotherapy

16055 Ventura Boulevard, Suite 1033

Encino, California 91436

(310) 281-6645

drkimdavis@...

IMPORTANT WARNING: This email (and any attachments) is only intended for the use of the person or entity to which it is addressed, and may contain information that is privileged and confidential. You, the recipient, are obligated to maintain it in a safe, secure and confidential manner. Unauthorized disclosure or failure to maintain confidentiality may subject you to federal and state penalties. If you are not the intended recipient, please immediately notify us by return email, and delete this message from your computer.

[Guest guest]

Sorry to hear of your worries.

How much is the band rotating? Up and down (because it's not holding on the

high point) or side to side?

Our band fits slightly different after each adjustment, and the fit continues to

change slightly over the course of the two weeks in between appointments as he

grows. That happened even during a 2-week stretch where he didn't have any

measured circumference growth, but still had some changes to his head shape.

Are you sure your daughter's head isn't growing in some ways that aren't

captured by the circumference measurement?

Do you see changes each week as you compare it to the " headsicle " mold? I feel

like that's when the tech and I really communicate well about the changes we

both see--when we're holding the mold and feeling it,comparing it to his head,

and discussing the different regions that have changed and which ones still need

change.

We've been going to the Pasadena site of CT and are very pleased with both techs

we've seen and are experiencing great results. There have been a couple times

when I asked a tough question, and I felt like I might have gotten a little bit

of a canned answer. I pressed a little more and at that point she realized I

needed more details and we had a more open dialogue about the topic. Some

parents don't want a 10 minute answer to a question, so I think they're used to

giving abbreviated responses that are easily understood; but if you've delved

into these issues and are educated about them, then chances are you want a more

in-depth explanation and you should keep pressing them to get it (and one that

makes sense to you so you can feel at ease about the process).

I think one of the benefits of CT is that there's an organizational structure in

place that would allow you to go beyond just the tech you've been using if

you're not satisfied with her work or don't feel she's communicating well with

you. As others have suggested, I'd ask to meet with another tech (perhaps the

managing tech at your site), and/or discuss the case with someone higher up at

the corporate level in AZ. Don't be afraid of offending someone by going above

them if you feel you need better answers. This is about your baby, not their

feelings! I do have one question about the process--something that doesn't

affect my son's treatment but that I'm just generally curious about--that our

tech doesn't really answer to my satisfaction, and I've considered contacting HQ

to see if they can answer it. Maybe I still will.

We haven't had any major problems with fit and I think in general most DOCbands

don't, so if you feel like you ARE, then I would definitely push to resolve

that. Perhaps you feel it's too late for this band. I don't think it's true

that all CT techs won't admit there's a problem, as I've read many accounts here

where the techs seem to respond to parents' concerns and work together with them

to resolve them. If yours isn't doing this, ask to use another tech. (Does

your location have more than one tech?) If you're going to get another band

with CT, and you're not happy with your current technician, I'd start off with

another tech for the course of the next band.

The average time in a DOCband is 12-16 weeks, so it sounds like you will fall

within that range.

I've heard of plenty of experiences where CT doesn't necessarily recommend a

second band because the plagio is so mild, even when the parents want one, so I

don't think they generally try to upsell you.

Anyway, just some thoughts. Good luck to you as you decide where to go from

here!

Mom to , 10 months, DOCband 12/29

> >

> >

> > It seems like everyone loves their CT experience, but I have to say

> > I'm disturbed by a few things. My child is 11 months, in the band for

> > 9 weeks for plagio. She has torticollis which we spotted right away

> > and has been in PT since 7 weeks old. I saw the flat spot develop and

> > asked drs, pt, etc., about helmeting at 3-4 months and was told not to

> > worry about it. Finally got one at 9 months. Familiar story.

> >

> > We've seen some rounding out in the flat spot in the back and filling

> > out in the front on the other side. My concern is really about the

> > skull base asymmetry because if the place where the

> > sternocleidomastoid muscles attach is not the same, I can't see how

> > they'll ever be equal in length, strength, and flexibility. I think

> > the bad advise had us miss the boat on this. We'll never get the ears

> > in line so the torticollis will always be a problem even if improved.

> > Maybe that sounds fatalistic, but I've been dragging this baby to a

> > reputable PT twice a week and having our own torture sessions at home

> > 4-5 times a day for 9 months. I'm a bit fed up, but won't finish PT

> > for another 6 months at least.

> >

> > Anyway, it's not CTs fault the helmets won't correct much skull base

> > asym if you don't get them early. My problem with CT is that from the

> > start I felt like the helmet didn't hold on the high point over/behind

> > her left ear. I'd ask and the tech would talk in circles around the

> > question. In the last 2-3 appts as growth has slowed I asked if they

> > really needed to shave the foam every visit. What if she hadn't grown

> > in the 2 weeks? The fit is getting worse, becoming more tilted and

> > rotating more because she hadn't yet grown into the space put there in

> > the previous adjustment. Again, the tech talked in circles. She said

> > what if there's a growth spurt in the coming 2 weeks. There needs to

> > be room for it. I said there already is room from the previous

> > adjustment. This went around and around. Ultimately it seems that no

> > matter what you ask/say CT techs will never admit there is any kind of

> > a problem.

> >

> > So, maybe that's my question. Has anyone had an experience where CT

> > said there was a problem with the helmet they made? Do they shave foam

> > every single time with or without growth between appointments? Every

> > time we go the tech looks at her head and claims to see rounding since

> > the last appointment. They see many, many kids, each for a few

> > minutes. I don't believe she remembers my kid's head well enough to

> > see such minute changes every 2 weeks. I think it's just their

> > standard scripted line to parents.

> >

> > To make a long rambling story longer (sorry), the tech now wants us to

> > buy a second helmet already. This is really my husbands fault, but the

> > tech jumped all over the chance to upsell us. We were told she'd use

> > the helmet probably for 3-4 months depending on growth. We have not

> > had any growth spurts so I don't see how she could be growing out of

> > this one early. Nonetheless, when I was saying it wasn't fitting as

> > well and she hadn't grown into the space already made in it, the tech

> > said they lose strength on the holding points. My husband asked if

> > that meant we needed a new helmet. I want to know why it would be

> > losing effectiveness in less than 2 months when it was sold to us as

> > lasting twice this long?

> >

> > I think she will need another helmet which we would have to pay for

> > out of pocket, but I want to get full use out of both. Would you

> > schedule a DSi in 2 weeks so we'd get a new helmet in about 4 after

> > only 13 weeks or less in the band? Would you push it off for 4 weeks

> > so we'd get about 15 weeks in it? Or would it be best to get a new

> > band as early as possible because they are most effective in the

> > beginning?

> >

> > Has anyone else felt like CT is just a factory with techs trained to

> > do and say the same thing for every baby? Has anyone switched from a

> > DOCband to Starband or some other active helmet?

> >

> > If anyone is till reading this far I thank you for that and for any

> > response you may be able to offer.

> >

> >

>