Re: New Markell Shoes

[Guest guest]

Ruth,

I'm so glad to hear that it all worked out! What do you plan to do

for follow-up care?

Daiga

> Hello everyone!

> I just thought that I would drop a line and update you about

> 's foot.

> Let me backtrack a bit. A few months ago my son

> was 'finished' his clubfoot treatment in Halifax and his doctor

said

> that his foot was 'fine'. No brace was prescribed. He had had 9

> short casts and a tenotomy and I could practically see his foot

> regressing. This was not good.

> I took the plunge and came out to BC 6 weeks ago to see Dr. Pirani.

> Well he looked at Ben's 'fine' foot and said it was still a 5.5 out

> of 6 in severity!!!!

> Dr. Pirani's first cast took Ben to a 3.5 out of 6 and the second

> cast to a 2 out of 6. And even from a layman's point of view Ben's

> foot was looking almost normal!!!

> Ben had another tenotomy (and I must say that when he had his first

> one he screamed for days, but with Dr. Pirani he was fine right

> away, not a tear was shed), and then the cast for three weeks.

> Well yesterday he had his cast off, and Dr. Pirani pronounced it

> a " perfect " foot, fully corrected. It is still a 1 out of 6

(creases)

> but Dr. Pirani is optimistic that those will dissappear over time.

> I contacted Mr. Markell a few weeks ago and he was kind enough to

> provide me with an advance pair of the new shoes and they are

> excellent! With the padded heel and tongue and the new more rigid

> bulbous heel cup seems just fine, mind you a little

> frustrated at the whole game. Nothing unusual.

> I had a bit of difficulty getting the correct bar however, Mr.

> Markell gave me the name of an orthotist in Burnaby to get the

shoes

> through, which we did. At the office the bars which they had were

> the non adjustable type, not what I had expected, however, they

> seemed to know what they were doing and the orthotist told us she

> would check with Mr. Markell to see what was the latest, fair

> enough, we requested a bar through them. They were even kind enough

> to run it over to the hospital for us on the day. Well what they

> ended up bringing was a fillhauer bar with the clamps on it, not

the

> plates. Dr. Pirani nor myself were particularly impressed with

those

> contraptions, so after a whole lot of whoo haw and driving around

> and desperate phone calls, we ended up back at the hospital and got

> a Markell brace with plates for . The orthotist at the

> hospital, , was from Valley orthotics in Surrey and was

> excellent, very helpful, stayed late to help this panicking Mum

out,

> and really knew her stuff!! So it was all sorted out in the long

run

> and the lesson learned is DON'T TAKE ANYONE'S WORD FOR IT, it seems

> to me that a lot of grief would have been saved had I stuck to my

> guns and asked for what I beleived was the right thing!

>

> Anyway the orthotist in Burnaby has now received some plates which

> will fit the fillhauer bar, so she is forwarding those to me at

> home. I could not return the bar as it was bent for clubfoot by

this

> point. I am not sure what I am going to do with and extra bar, I

> think perhaps I will send it off to Dr. Pirani as they sometimes

> provide kids with boots and bars if they are not able to afford

them.

>

> Anyway Ben is doing really well. I am going to add a new picture to

> his album in the photos section so have a look at this happy boy

> with a 'perfect' foot!

> Cheers Ruth Hiltz

[Guest guest]

Daiga,

My plans for follow up are still a little shakey.

Dr. Pirani invited me to send him lots of photos and keep him up to

date with anything I may have concerns about. He also said that

anytime I am over visiting my sister to make an appointment and stop

in.

As for the IWK I think I may make my follow up appointment with Dr.

Cook, he was at least a bit receptive to the Ponseti method. I am

not sure yet though. How was your last appointment? Any news?

We are leaving tomorrow morning and I can't wait to be home! I'll

drop you a line next week some time and maybe we can get together!

Cheers

Ruth

> Ruth,

>

> I'm so glad to hear that it all worked out! What do you plan to

do

> for follow-up care?

>

> Daiga

>

[Guest guest]

Our appointment with Dr. Cook went relatively well. He examined

Owen's foot and thought that it looked good (as did I). I mentioned

the upcoming availability of the new shoes to him and he took

somewhat of an interest...he called (the nurse) in to take

some contact info from me on the shoes - this is at least encouraging.

Owen and I had our orthotist appointment today to get sized for the

new shoes. I brought a couple of copies of Hall's FAO Setup

doc's (from the files section here) with me and gave one to give to

her. She read it over and then after examining Owen's bar (that Dr.

Pirani had 'adjusted'), she still couldn't grasp the dorsiflexion

adjustment. I guess I should be glad that Owen's bar is already

adjusted! I asked her if she'd had any other clients using the DBB

and she told me that I was the only one...and the first one that

she'd ever of heard of using it. Oh well. On our way back to the

car (I parked at the IWK), I stopped in at the Orthopaedic office and

gave a copy of the AFO setup doc's. I told her that I

didn't know if they were interested in them but just in case, I

thought I'd pass them along. She was surprisingly enthusiastic about

receiving them and thanked me - apparently Dr. Cook had asked her to

look into it.

So, there seems to be at least a little bit of progression toward the

use of more of the Ponseti protocol. I think that they realize by

now that I am committed to making sure that the full protocol is

followed and that I've become educated in the method enough to know

what that entails - they can't just snow me over by telling me that

they ARE using it without following through. Hopefully sometime in

the near future, we'll able to get the 'real' Ponseti method there

without having to 'police' every procedure.

Can't wait to meet up when you guys get home. Have a safe flight!

Daiga

> > Ruth,

> >

> > I'm so glad to hear that it all worked out! What do you plan to

> do

> > for follow-up care?

> >

> > Daiga

> >

[Guest guest]

No, the new ones do not need it (theoretically - they're too new a design

to know if it works for every CF baby's feet but they are very much better

IMO). They pushed out the heel pocket and padded the ankle so the insert

is not needed. check out the profile of the shoe and you'll see what I

mean where the heel pocket pouches out the back. I would take it out if it

were me (assuming you know these are the new model). Absolutely. There

should not be any bruising. What color is the bruising? Having that

insert in there is like having two in the old shoes. You may want to pass

the PDF document from Markell (in the files section

http://groups.yahoo.com/group/nosurgery4clubfoot ) onto the orthotist that

put the insert in. It explains how the shoes have been modified so as not

to need the insert (I still think the tongue should sit lower but that's

just what works for us and the shoes are by no means perfect for everyone yet)

Kori

\

At 01:43 PM 2/16/2004, you wrote:

>Do the new Markell shoes need the insert in the back? Lyssa

>got a pair when she received the DBB 2 weeks ago and the ortho

>guy put an insert, sort of upside down U shaped in the back.

>Now she has some slight brusing around her ankle and I was

>concerned about what might be causing it. Any suggestions?

>

>Kathy and Lyssa (DBB 23/7)

>

>

>

>

[Guest guest]

Kori,

How would I go about getting it out? It is glued in place. The

bruising is light purple in color, it doesn't look too bad but I don't

want it to get worse.

Kathy and Lyssa (DBB 23/7)

>>> frogabog@... - 2/16/04 5:16 PM >>>

No, the new ones do not need it (theoretically - they're too new a

design

to know if it works for every CF baby's feet but they are very much

better

IMO). They pushed out the heel pocket and padded the ankle so the

insert

is not needed. check out the profile of the shoe and you'll see what I

mean where the heel pocket pouches out the back. I would take it out

if it

were me (assuming you know these are the new model). Absolutely. There

should not be any bruising. What color is the bruising? Having that

insert in there is like having two in the old shoes. You may want to

pass

the PDF document from Markell (in the files section

http://groups.yahoo.com/group/nosurgery4clubfoot ) onto the orthotist

that

put the insert in. It explains how the shoes have been modified so as

not

to need the insert (I still think the tongue should sit lower but

that's

just what works for us and the shoes are by no means perfect for

everyone yet)

Kori

\

At 01:43 PM 2/16/2004, you wrote:

>Do the new Markell shoes need the insert in the back? Lyssa

>got a pair when she received the DBB 2 weeks ago and the ortho

>guy put an insert, sort of upside down U shaped in the back.

>Now she has some slight brusing around her ankle and I was

>concerned about what might be causing it. Any suggestions?

>

>Kathy and Lyssa (DBB 23/7)

>

>

>

>

[Guest guest]

try something like desolve-it... you know, that orange glue remover

stuff. I dunno what they use actually. You could cut it out with a very

sharp knife but that leaves gunk there to irritate. What a PITA....

Here's what I would do if I were you... I'd take the shoes back and demand

that they take it out and make sure it's as smooth and clean inside as if

they'd never put it in. If they can't do that then they should give you a

new pair. I'd actually be kind of ticked off about it, especially with the

bruising. The Orthotic store would surely know I expect a correct fit for

my child and would accept nothing else. They should have known they don't

need the insert. It's kind of obvious if you ask me. The heel pouches way

out already and there's obvious padding at the ankle.

Kori

At 06:32 AM 2/17/2004, you wrote:

>Kori,

>

>How would I go about getting it out? It is glued in place. The

>bruising is light purple in color, it doesn't look too bad but I don't

>want it to get worse.

>

>Kathy and Lyssa (DBB 23/7)

>

> >>> frogabog@... - 2/16/04 5:16 PM >>>

>No, the new ones do not need it (theoretically - they're too new a

>design

>to know if it works for every CF baby's feet but they are very much

>better

>IMO). They pushed out the heel pocket and padded the ankle so the

>insert

>is not needed. check out the profile of the shoe and you'll see what I

>

>mean where the heel pocket pouches out the back. I would take it out

>if it

>were me (assuming you know these are the new model). Absolutely. There

>

>should not be any bruising. What color is the bruising? Having that

>insert in there is like having two in the old shoes. You may want to

>pass

>the PDF document from Markell (in the files section

>http://groups.yahoo.com/group/nosurgery4clubfoot ) onto the orthotist

>that

>put the insert in. It explains how the shoes have been modified so as

>not

>to need the insert (I still think the tongue should sit lower but

>that's

>just what works for us and the shoes are by no means perfect for

>everyone yet)

>

>

>Kori

>

>

>

>\

>At 01:43 PM 2/16/2004, you wrote:

> >Do the new Markell shoes need the insert in the back? Lyssa

> >got a pair when she received the DBB 2 weeks ago and the ortho

> >guy put an insert, sort of upside down U shaped in the back.

> >Now she has some slight brusing around her ankle and I was

> >concerned about what might be causing it. Any suggestions?

> >

> >Kathy and Lyssa (DBB 23/7)

> >

> >

> >

> >

[Guest guest]

problem is that we go the the Shriners in St. Louis, MO but we live in

south central Texas. We have an appointment next week for a check up.

I also e-mailed Dr. Dobbs, maybe he has an answer to the problem. I

will make sure that it doesn't happen again. I really didn't know what

to expect since this is our first pair of DBBs.

Thanks for the input.

Kathy

>>> frogabog@... - 2/17/04 10:47 AM >>>

try something like desolve-it... you know, that orange glue remover

stuff. I dunno what they use actually. You could cut it out with a

very

sharp knife but that leaves gunk there to irritate. What a PITA....

Here's what I would do if I were you... I'd take the shoes back and

demand

that they take it out and make sure it's as smooth and clean inside as

if

they'd never put it in. If they can't do that then they should give

you a

new pair. I'd actually be kind of ticked off about it, especially with

the

bruising. The Orthotic store would surely know I expect a correct fit

for

my child and would accept nothing else. They should have known they

don't

need the insert. It's kind of obvious if you ask me. The heel pouches

way

out already and there's obvious padding at the ankle.

Kori

At 06:32 AM 2/17/2004, you wrote:

>Kori,

>

>How would I go about getting it out? It is glued in place. The

>bruising is light purple in color, it doesn't look too bad but I

don't

>want it to get worse.

>

>Kathy and Lyssa (DBB 23/7)

>

> >>> frogabog@... - 2/16/04 5:16 PM >>>

>No, the new ones do not need it (theoretically - they're too new a

>design

>to know if it works for every CF baby's feet but they are very much

>better

>IMO). They pushed out the heel pocket and padded the ankle so the

>insert

>is not needed. check out the profile of the shoe and you'll see what

I

>

>mean where the heel pocket pouches out the back. I would take it out

>if it

>were me (assuming you know these are the new model). Absolutely.

There

>

>should not be any bruising. What color is the bruising? Having that

>insert in there is like having two in the old shoes. You may want to

>pass

>the PDF document from Markell (in the files section

>http://groups.yahoo.com/group/nosurgery4clubfoot ) onto the orthotist

>that

>put the insert in. It explains how the shoes have been modified so

as

>not

>to need the insert (I still think the tongue should sit lower but

>that's

>just what works for us and the shoes are by no means perfect for

>everyone yet)

>

>

>Kori

>

>

>

>\

>At 01:43 PM 2/16/2004, you wrote:

> >Do the new Markell shoes need the insert in the back? Lyssa

> >got a pair when she received the DBB 2 weeks ago and the ortho

> >guy put an insert, sort of upside down U shaped in the back.

> >Now she has some slight brusing around her ankle and I was

> >concerned about what might be causing it. Any suggestions?

> >

> >Kathy and Lyssa (DBB 23/7)

> >

> >

> >

> >

[Guest guest]

Well then, Shriners should fix it without fail. Just because it's free

doesn't mean you have to deal with an incorrect fit. Is Texas close to MO

at all???? Wow! If that's the case, I'd just cut it out as best I can

till I got to the checkup. Then go to the brace shop and get new shoes or

make them take the insert out. I'm pretty sure they've got the stuff to

remove the glue they use. I don't know how many times I was at the brace

shop (we go to Shriners too) after Darbi went into the DBB - they have lots

of little tricks to get things to work with orthotics. We had a horrible

time with pressure sores - which BTW start out looking like a bruise so be

cautious of anything dark or purple colored. Don't let it get to the point

where the pressure kills the skin and it falls off because that's a nasty

sore to heal when you've got to keep the DBB on all the time. Best to not

let it happen.

So... till the appointment I'd use an exacto knife of scalpel or razor

blade and shave that insert down as far as possible. Then cover it with

moleskin so it's soft where you shaved. And then make them fix it next

week. They shouldn't have any problem, if they do just tell them she was

getting a pressure sore (which the bruising indicates IMO) and it had to go.

Sorry so problematic! At least she isn't screaming all the time (or is she?)

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28 - Rt. CF - DBB 14hr/d

[Guest guest]

We are about 800 miles from the Shriners. Lyssa doesn't seem upset

about it at all, thats why I haven't been to concerned. I check it

every night to make sure it hasn't changed.

Kathy

>>> frogabog@... - 2/17/04 11:31 AM >>>

Well then, Shriners should fix it without fail. Just because it's free

doesn't mean you have to deal with an incorrect fit. Is Texas close to

MO

at all???? Wow! If that's the case, I'd just cut it out as best I can

till I got to the checkup. Then go to the brace shop and get new shoes

or

make them take the insert out. I'm pretty sure they've got the stuff

to

remove the glue they use. I don't know how many times I was at the

brace

shop (we go to Shriners too) after Darbi went into the DBB - they have

lots

of little tricks to get things to work with orthotics. We had a

horrible

time with pressure sores - which BTW start out looking like a bruise so

be

cautious of anything dark or purple colored. Don't let it get to the

point

where the pressure kills the skin and it falls off because that's a

nasty

sore to heal when you've got to keep the DBB on all the time. Best to

not

let it happen.

So... till the appointment I'd use an exacto knife of scalpel or razor

blade and shave that insert down as far as possible. Then cover it

with

moleskin so it's soft where you shaved. And then make them fix it next

week. They shouldn't have any problem, if they do just tell them she

was

getting a pressure sore (which the bruising indicates IMO) and it had

to go.

Sorry so problematic! At least she isn't screaming all the time (or is

she?)

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28 - Rt. CF - DBB 14hr/d