Re: Visist with Dr. Dobbs

June 26, 2004

Pam-

I totally understand your frustration. Good job sticking up for your son!

Informed parents are so valuable! This board is a great way to get info and

I am so thankful for it'.

Visist with Dr. Dobbs

> Just returned from a visit to Shriner's with Dr. Dobbs. He said

> 's feet look great. Before we saw him the nurse sent us to the

> shop to get his shoes and brace length checked. Usually things go

> okay (I say ususally because we have had problems before) with the

> brace shop. But I am not happy with them right now. The orthotist

> had us to put 's shoes on and he said okay, they are fine. I

> said, " No, we have had these shoes for 8 months now and he is

> begining to pull one of his feet out in the early morning hours

> because they are uncomfortable and he says it's too tight. " (He's

> almost 3--he's pretty good about telling you what's wrong.) His toes

> on one foot come to almost the end of the shoe, but are not hanging

> off. This is usually where he begins feeling uncomfortable. Well

> the orthotist says these are a size 5 right? And I say yes and he

> says these shoes don't come any larger that that. (And thankfully

> due to the time I spend on this board each day trying to keep up with

> all the latest on caring for my child) I say no, that's not correct,

> these shoes go up to a size 8 and due to an increase in some kids

> relapsing due to growth spurts when they are in their third year

> Markwell has put a size 8 1/2 and 9 into production. So he goes and

> looks and comes back and said I was wrong I found a size 5 1/2, but I

> don't know what you're going to do after that because my supervisor

> doesn't order them past that. Isn't the Dr. going to be taking him

> out of them soon anyway. I said I don't know I haven't seen the Dr.

> yet, but I know we're not getting out of them now because he is still

> tolerating them well and the risk for relapse is too high for me. We

> also can't extend the length of his bar any and according to the way

> Dr. Dobbs checks it it is exactly right right now. The orthotis said

> it's actually too wide right now because HE (the orthotist) measures

> from the middle of his leg and not from his heels. So we have a

> shoes that are a half size bigger and a bar that has no room to

> grow. We definitely won't make it six months on that. I'm not upset

> with Dr. Dobbs he said to e-mail him as soon as we start to see that

> he is going to have problems. But the brace shop upsets me. Bracing

> is such an important part of this treatment. We have worked so hard,

> never missed a night in the shoes and they almost have an attitude

> like sorry, can't help you anymore. They should be encouraging and

> trying to do things to help not be an obstacle you have to overcome.

> Don't get me wrong, I am so thankful to Shriner's. We were able to

> see Dr. Dobbs and not have to fight our insurance and pay out of

> network. And when I first went there I would never dream of

> complaining over anything they did. I am so thankful for what they

> have done for us, but you don't want results comprimised. If I

> didn't know the things that I do I probably would have a different

> attitude toward the shoes like why do we still need them? That guy

> didn't even know they come that big and he's an orthotist and he

> thinks it's time for not to have them anymore. But thankfully

> from reading this board I know better. But what about the next

> person?

>

> Pam and (8-12-01)

>

June 26, 2004

Pam

Be proud of yourself! I think I have dealt with the same guy there. He told me

about how HE measures the shoes too. He also set Shaloms shoes too close and not

at the proper angle. I believe from what I have learned from a nurse there that

there is a very strong difference of opinion at the hospital regarding the two

" methods " of treating clubfoot. I think most lean towards the surgery method

over Ponsetti method. It sounds like that particular Ortho is surgery minded.

Thankfully Dr. Dobbs has been trained in the Ponsetti method but the Orthos need

to be also. Dr. Dobbs needs to have a team that can work with him, not against

him. It really seems like this Ortho guy is challenging Dr. Dobbs authority or

knowlegde or something.

When Shalom got out of the casts and was being fitted for her shoes I came with

previous knowledge and experience as we had gone through a fitting before in

Montreal Shriners Hospital. Shalom had relapsed, thus the need for casting

again......

Anyway, the Ortho argued with me over the degree of the shoes and the width of

the bar. I told him straight out he was wrong and I would be talking to

Dr.Dobbs. I did. Dr.Dobbs sent a to explain exactly what " we " wanted so

the guy had to make a whole new set of shoes and bar.

I can't wait to see what happens when I get there this July : ) Armed with more

info, I will be informing who ever it is with the proper info. And perhaps i

will let Dr. Dobbs know he needs to have the Orthos trained in the Ponsetti

method as well.

and Shalom

---------------------------------

Post your free ad now! Yahoo! Canada Personals

June 26, 2004

I have really been struggling with this since I left there. It

bothers me to complain or vent because it is Shriner's and I also

wouldn't want to upset Dr. Dobbs. After I posted my message to the

group (venting) it didn't help as much as I hoped. So I e-mailed Dr.

Dobbs. I mentioned while we were there that I wasn't happy with the

brace shop, but I didn't get into details. But I e-mailed him to let

him know the details. I feel like they could compromise his

results. We have gotten to where we almost dread to go to the brace

shop. I'm hoping I get a survery and I will let them now my feelings.

Pam and (8-12-01)

>

> Pam

>

> Be proud of yourself! I think I have dealt with the same guy there.

He told me about how HE measures the shoes too. He also set Shaloms

shoes too close and not at the proper angle. I believe from what I

have learned from a nurse there that there is a very strong

difference of opinion at the hospital regarding the two " methods " of

treating clubfoot. I think most lean towards the surgery method over

Ponsetti method. It sounds like that particular Ortho is surgery

minded.

>

> Thankfully Dr. Dobbs has been trained in the Ponsetti method but

the Orthos need to be also. Dr. Dobbs needs to have a team that can

work with him, not against him. It really seems like this Ortho guy

is challenging Dr. Dobbs authority or knowlegde or something.

>

> When Shalom got out of the casts and was being fitted for her shoes

I came with previous knowledge and experience as we had gone through

a fitting before in Montreal Shriners Hospital. Shalom had relapsed,

thus the need for casting again......

>

> Anyway, the Ortho argued with me over the degree of the shoes and

the width of the bar. I told him straight out he was wrong and I

would be talking to Dr.Dobbs. I did. Dr.Dobbs sent a to

explain exactly what " we " wanted so the guy had to make a whole new

set of shoes and bar.

>

> I can't wait to see what happens when I get there this July : )

Armed with more info, I will be informing who ever it is with the

proper info. And perhaps i will let Dr. Dobbs know he needs to have

the Orthos trained in the Ponsetti method as well.

>

> and Shalom

>

> ---------------------------------

> Post your free ad now! Yahoo! Canada Personals

>

June 26, 2004

The information here helps me to make informed decisions for 's

care. It's been helping me do that for almost 3 years now! Thanks

for the encouragement. It bothers me to vent or complain considering

it's Shriner's. Did you get my reply to your e-mail?

Pam and (8-12-01)

> Pam-

>

> I totally understand your frustration. Good job sticking up for

your son!

> Informed parents are so valuable! This board is a great way to get

info and

> I am so thankful for it'.

>

> Visist with Dr. Dobbs

>

> > Just returned from a visit to Shriner's with Dr. Dobbs. He said

> > 's feet look great. Before we saw him the nurse sent us to

the

> > shop to get his shoes and brace length checked. Usually things go

> > okay (I say ususally because we have had problems before) with the

> > brace shop. But I am not happy with them right now. The

orthotist

> > had us to put 's shoes on and he said okay, they are fine. I

> > said, " No, we have had these shoes for 8 months now and he is

> > begining to pull one of his feet out in the early morning hours

> > because they are uncomfortable and he says it's too tight. " (He's

> > almost 3--he's pretty good about telling you what's wrong.) His

toes

> > on one foot come to almost the end of the shoe, but are not

hanging

> > off. This is usually where he begins feeling uncomfortable. Well

> > the orthotist says these are a size 5 right? And I say yes and he

> > says these shoes don't come any larger that that. (And thankfully

> > due to the time I spend on this board each day trying to keep up

with

> > all the latest on caring for my child) I say no, that's not

correct,

> > these shoes go up to a size 8 and due to an increase in some kids

> > relapsing due to growth spurts when they are in their third year

> > Markwell has put a size 8 1/2 and 9 into production. So he goes

and

> > looks and comes back and said I was wrong I found a size 5 1/2,

but I

> > don't know what you're going to do after that because my

supervisor

> > doesn't order them past that. Isn't the Dr. going to be taking

him

> > out of them soon anyway. I said I don't know I haven't seen the

Dr.

> > yet, but I know we're not getting out of them now because he is

still

> > tolerating them well and the risk for relapse is too high for

me. We

> > also can't extend the length of his bar any and according to the

way

> > Dr. Dobbs checks it it is exactly right right now. The orthotis

said

> > it's actually too wide right now because HE (the orthotist)

measures

> > from the middle of his leg and not from his heels. So we have a

> > shoes that are a half size bigger and a bar that has no room to

> > grow. We definitely won't make it six months on that. I'm not

upset

> > with Dr. Dobbs he said to e-mail him as soon as we start to see

that

> > he is going to have problems. But the brace shop upsets me.

Bracing

> > is such an important part of this treatment. We have worked so

hard,

> > never missed a night in the shoes and they almost have an attitude

> > like sorry, can't help you anymore. They should be encouraging

and

> > trying to do things to help not be an obstacle you have to

overcome.

> > Don't get me wrong, I am so thankful to Shriner's. We were able

to

> > see Dr. Dobbs and not have to fight our insurance and pay out of

> > network. And when I first went there I would never dream of

> > complaining over anything they did. I am so thankful for what

they

> > have done for us, but you don't want results comprimised. If I

> > didn't know the things that I do I probably would have a different

> > attitude toward the shoes like why do we still need them? That

guy

> > didn't even know they come that big and he's an orthotist and he

> > thinks it's time for not to have them anymore. But

thankfully

> > from reading this board I know better. But what about the next

> > person?

> >

> > Pam and (8-12-01)

> >

June 26, 2004

Pam, I can understand why you're frustrated. I certainly would be

too!

If you go the Files section here and open up the folder entitled " DBB

articles from Iowa " , you will find 3 files. The first

one, " CF_OrthotistInst.doc " gives specific instructions for the

orthotist following the Ponseti method. It gives instructions

exactly how the width of the bar is measured! Print it out and send

it to Mr. Braceshop guy or bring it to him yourself. Let him try to

argue with that! (It also gives the model #'s of the shoes for

specific sizes - up to size 8).

Good luck hon!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

> >

> > Pam

> >

> > Be proud of yourself! I think I have dealt with the same guy

there.

> He told me about how HE measures the shoes too. He also set Shaloms

> shoes too close and not at the proper angle. I believe from what I

> have learned from a nurse there that there is a very strong

> difference of opinion at the hospital regarding the two " methods "

of

> treating clubfoot. I think most lean towards the surgery method

over

> Ponsetti method. It sounds like that particular Ortho is surgery

> minded.

> >

> > Thankfully Dr. Dobbs has been trained in the Ponsetti method but

> the Orthos need to be also. Dr. Dobbs needs to have a team that can

> work with him, not against him. It really seems like this Ortho guy

> is challenging Dr. Dobbs authority or knowlegde or something.

> >

> > When Shalom got out of the casts and was being fitted for her

shoes

> I came with previous knowledge and experience as we had gone

through

> a fitting before in Montreal Shriners Hospital. Shalom had

relapsed,

> thus the need for casting again......

> >

> > Anyway, the Ortho argued with me over the degree of the shoes and

> the width of the bar. I told him straight out he was wrong and I

> would be talking to Dr.Dobbs. I did. Dr.Dobbs sent a to

> explain exactly what " we " wanted so the guy had to make a whole new

> set of shoes and bar.

> >

> > I can't wait to see what happens when I get there this July : )

> Armed with more info, I will be informing who ever it is with the

> proper info. And perhaps i will let Dr. Dobbs know he needs to have

> the Orthos trained in the Ponsetti method as well.

> >

> > and Shalom

> >

> > ---------------------------------

> > Post your free ad now! Yahoo! Canada Personals

> >

June 27, 2004

Hi Pam--

I just had a run-in of sorts with the orthotics department at the Shriner's in

Sacramento, CA where Jonah is treated. Over the last couple of months, they've

overnighted us parts and new shoes twice so I was very eager to go in and thank

them at our appointment last week. After offering profuse thanks, I argued with

the orthotist about how to measure for bar length. I couldn't get him to

listen, so I went and tracked down the doc and had her write an order for a

longer bar. Then I pointed out that he hadn't bent the new bar correctly. I

felt like maybe he thought I was being a pain, but he is part of Jonah's care

team and he needs to get things right. What bugged me the most though was that

as we were leaving he asked me whether I knew how to put the shoes on. Sheesh.

According to our doctor, clubfoot is being treated at our Shriner's about half

surgically, half Ponseti(so it's luck of the draw which doc you get unless you

know who to ask for). One of the doctor's has recently been placed on Ponseti's

list--and I have seen him with patients in the castroom where he works slowly

and carefully.

I know about the files from Iowa available in the files section, but what about

specific training for orthotists?

Good for you, Pam, for letting your doctor know about your experience with your

orthotics department. I do know the feeling of not wanting to complain about

something you are getting for free. And it takes a certain kind of guts.

Best to you and yours,

Naomi

The Family

Naomi Hannah Jonah(06/20/03, bcf)

pammi_kay pammi_kay@...> wrote:

Just returned from a visit to Shriner's with Dr. Dobbs. He said

's feet look great. Before we saw him the nurse sent us to the

shop to get his shoes and brace length checked. Usually things go

okay (I say ususally because we have had problems before) with the

brace shop. But I am not happy with them right now. The orthotist

had us to put 's shoes on and he said okay, they are fine. I

said, " No, we have had these shoes for 8 months now and he is

begining to pull one of his feet out in the early morning hours

because they are uncomfortable and he says it's too tight. " (He's

almost 3--he's pretty good about telling you what's wrong.) His toes

on one foot come to almost the end of the shoe, but are not hanging

off. This is usually where he begins feeling uncomfortable. Well

the orthotist says these are a size 5 right? And I say yes and he

says these shoes don't come any larger that that. (And thankfully

due to the time I spend on this board each day trying to keep up with

all the latest on caring for my child) I say no, that's not correct,

these shoes go up to a size 8 and due to an increase in some kids

relapsing due to growth spurts when they are in their third year

Markwell has put a size 8 1/2 and 9 into production. So he goes and

looks and comes back and said I was wrong I found a size 5 1/2, but I

don't know what you're going to do after that because my supervisor

doesn't order them past that. Isn't the Dr. going to be taking him

out of them soon anyway. I said I don't know I haven't seen the Dr.

yet, but I know we're not getting out of them now because he is still

tolerating them well and the risk for relapse is too high for me. We

also can't extend the length of his bar any and according to the way

Dr. Dobbs checks it it is exactly right right now. The orthotis said

it's actually too wide right now because HE (the orthotist) measures

from the middle of his leg and not from his heels. So we have a

shoes that are a half size bigger and a bar that has no room to

grow. We definitely won't make it six months on that. I'm not upset

with Dr. Dobbs he said to e-mail him as soon as we start to see that

he is going to have problems. But the brace shop upsets me. Bracing

is such an important part of this treatment. We have worked so hard,

never missed a night in the shoes and they almost have an attitude

like sorry, can't help you anymore. They should be encouraging and

trying to do things to help not be an obstacle you have to overcome.

Don't get me wrong, I am so thankful to Shriner's. We were able to

see Dr. Dobbs and not have to fight our insurance and pay out of

network. And when I first went there I would never dream of

complaining over anything they did. I am so thankful for what they

have done for us, but you don't want results comprimised. If I

didn't know the things that I do I probably would have a different

attitude toward the shoes like why do we still need them? That guy

didn't even know they come that big and he's an orthotist and he

thinks it's time for not to have them anymore. But thankfully

from reading this board I know better. But what about the next

person?

Pam and (8-12-01)

June 27, 2004

I had a similar problem with the place here in town where I used to order my

sons shoes and bar from. We switched Dr.s and he gave us a number for a new

place to get shoes and the bar from. They are in California. I don't know

where you live. Anyway I just ordered a new pair of shoes for my son. Because

our Dr. is four hours away I faxed the Distributor. I traced an outline of my

son's feet and faxed it to them. They mailed my my son's shoe's. I don't

know if this will work for you. The name of the Distributor is Easee

Distributor talk to Gloria . I am sure there are other people on

the board

who could give you other names of places to look.

LaRena

June 28, 2004

Hi, Pam,

I'm sorry you had so many issues, but so glad that you are

an " informed parent " . Good for you in telling Dr. Dobbs the

details! How else is he supposed to find out?? It seems that Dr.

Dobbs has a great program set up, so unless he gets feedback from

parents, he's not going to know where it's deficient and needs help,

and it does seem that he's completely dedicated to making it work for

his patients. Remember that he can always print out a flyer for his

patients regarding what they should expect from the orthotists and

the brace itself...if he knows that the orthotists aren't doing

what's necessary, or misleading patients, he might have to go that

extra step. He published that study about families not being

diligent with wearing the brace and demographics...I'm wondering if

his results were indicative of issues within the orthotics group that

works with Shriners there also (if the orthotists were telling the

parents contradictory information so they listened to the " brace

guys " instead of the doctor)!

Don't hold back when you tell him about your experiences- you're

doing it to help other families, not to complain!

I hope he responds to you soon!

Regards,

& (3-16-00)

> Just returned from a visit to Shriner's with Dr. Dobbs. He said

> 's feet look great. Before we saw him the nurse sent us to

the

> shop to get his shoes and brace length checked. Usually things go

> okay (I say ususally because we have had problems before) with the

> brace shop. But I am not happy with them right now. The orthotist

> had us to put 's shoes on and he said okay, they are fine. I

> said, " No, we have had these shoes for 8 months now and he is

> begining to pull one of his feet out in the early morning hours

> because they are uncomfortable and he says it's too tight. " (He's

> almost 3--he's pretty good about telling you what's wrong.) His

toes

> on one foot come to almost the end of the shoe, but are not hanging

> off. This is usually where he begins feeling uncomfortable. Well

> the orthotist says these are a size 5 right? And I say yes and he

> says these shoes don't come any larger that that. (And thankfully

> due to the time I spend on this board each day trying to keep up

with

> all the latest on caring for my child) I say no, that's not

correct,

> these shoes go up to a size 8 and due to an increase in some kids

> relapsing due to growth spurts when they are in their third year

> Markwell has put a size 8 1/2 and 9 into production. So he goes

and

> looks and comes back and said I was wrong I found a size 5 1/2, but

I

> don't know what you're going to do after that because my supervisor

> doesn't order them past that. Isn't the Dr. going to be taking him

> out of them soon anyway. I said I don't know I haven't seen the

Dr.

> yet, but I know we're not getting out of them now because he is

still

> tolerating them well and the risk for relapse is too high for me.

We

> also can't extend the length of his bar any and according to the

way

> Dr. Dobbs checks it it is exactly right right now. The orthotis

said

> it's actually too wide right now because HE (the orthotist)

measures

> from the middle of his leg and not from his heels. So we have a

> shoes that are a half size bigger and a bar that has no room to

> grow. We definitely won't make it six months on that. I'm not

upset

> with Dr. Dobbs he said to e-mail him as soon as we start to see

that

> he is going to have problems. But the brace shop upsets me.

Bracing

> is such an important part of this treatment. We have worked so

hard,

> never missed a night in the shoes and they almost have an attitude

> like sorry, can't help you anymore. They should be encouraging and

> trying to do things to help not be an obstacle you have to