Re: Re: DBB - shoes and heels -not seeing eye to eye LONG

[Guest guest]

Kori,

I tend to agree with . We had problems with Kai getting sores in the

beginning, and eventually found that his foot was not seating down right. We

finally figured out how to get it down in the shoe correctly, and the sores went

away. If Darbi's foot simply will not seat down into the shoe, no matter what

you have tried, then it is possible that her foot is just not fully corrected.

Am I remembering correctly that she did NOT have the tenotomy? Maybe it is

possible that it is still just tight enough to be pulling her heel up. Keep in

mind if you decide on the second opinion that you will only have to go as far as

Seattle. Best of luck, and big hugs ... I know your frustration.

Angel & Kai

Re: DBB - shoes and heels -not seeing eye to eye

LONG

Kori,

This is just my opinion, and you probably won't want to hear

it.....but I think you need to get a second opinion on Darby's foot

from a doctor who is very experienced w/ the Ponseti method. It

sounds to me like her foot is not fully corrected and this is why

it's not fitting into the FAB shoes correctly. I've been reading

posts on this and other clubfoot boards for 3 years, and in my

personal experience, the majority of cases where children have

problems with the FAB are either because the brace is fitted

incorrectly (i.e. bar too short), the child's foot is not fully

corrected, or the shoes are the wrong size. You rarely hear about

children having problems with the brace if they are treated in Iowa,

but we hear all kinds of complaints from families who are going to

doctors who are not well-versed in the Ponseti method. There are

stories similar to yours in the archives on this board...the family

that comes to mind first is Mike Z and his son when they

started off with Dr. Tuck

http://groups.yahoo.com/group/nosurgery4clubfoot/message/11442.

You're not the first parent in this situation. I am so upset for you

and Darby that you're going through all the problems that you are!

If it's possible for you to see another doctor, that would be my

recommendation to you.

Good luck-

& (3-16-00)

> Well it's been quite a ride since the beginning of the sore...

about 5

> weeks now. Can you say I'm a little upset about the whole thing?

The

> hospital has been great, but I'm not sure what to do now or how to

approach

> the next step.

>

> Here's where we are. Sore keeps coming back. She was in casts for

a week

> and a half with duoderm on the sore and the cast soft in the heel

> area. The sore is right above her heel on the Achilles tendon

area. At

> first the orthotics guy Andy used lipstick over the sore to find

where the

> shoe is wearing. Found it to be right on the heel insert itself.

Way up

> high at the bottom of the insert at the top of the shoe. This told

us that

> her foot wasn't going all the way into the shoe (which caused some

question

> on my part about her being fully corrected but all the docs that

see her

> foot amaze at what a good correction it is). So we thought we'd

got her

> foot all the way in, measured it, compared it and came up with a

game plan

> for getting her all the way into the shoes (how I put them on).

Then come

> the reshaping of the shoes, pad ground off, new pads on top of the

old pads

> - softer pads that go up and over the back of the shoe to the

outside and

> all the way down to the inside sole. Nice pads. They help a

lot. Then

> into casts because the pressure and wetness isn't helping it heal

when

> she's in the shoes. See all the while I was tere putting her

*back* into

> them, and letting her wear them as long as she allows to which has

been up

> to 24 hours at times. Each time I take them off after a long stint

> thinking she's doing ok something comes up. So after the 11 days

casts for

> healing she's back in the DBB after more grinding of pads which I

hated

> because it looked rough and made them just put new ones in. This

was

> Tuesday morning and I let her poor skin get used to being out of a

cast

> till the next morning when we tried it again for a few hours mid

day and on

> at bedtime overnight... and the next morning I take them off find

a purple

> spot right in the center where the original large sore was. But

she's ok

> so I give her a few hours out of them and back on for a few hours

in the

> afternoon but take them off because she's now telling me there's

something

> wrong.. can't get the shoes off fast enough for her now... Well

you

> guessed it... sore is back. She's good till it hurts. I wish she

were

> easier to read with this. I can't figure out when to keep them off

> apparently... so back to the brace shop where my guy isn't there

that day

> and another guy suggests cutting out the leather of the shoe. I'm

all for

> it, relieve the pressure please!! So the big hole shows up. I'm

cool

> with this. We can't go wrong with a giant gaping hole in the back

of the

> shoe can we? I've got my own duoderm now - they actually gave me

some this

> time. I'm in a hurry to go, the trip we'd planned a long time ago

when she

> was first in the DBB never happened... it IS happening this

> weekend. We're leaving that day (didn't leave till Sat though) and

I'm

> thrilled that she'll be able to finally get past all this.

uhhhuh... you

> guessed it... sore problems after one night in them. I didn't put

her

> back into the dbb again the rest of the weekend. Sorry... I will

not

> cause my baby to be in pain and make her get sores any more. I

keep

> putting them on her and every time there's a problem. So I went

back today

> and had the inside padding cut out. We're thinking just *any*

pressure is

> causing this, the tissue is so damaged there it can't have anything

> pressing there. Well, it's a good thing I tried them on before we

left (I

> was late picking them up so I didn't see Andy when I picked them

up)

> because I saw that her sore was nowhere near the hole in the shoe

at

> all. I took her sock off, put her bare foot into the shoe and

> freaked! Even when I push her tightly into the shoes her heel does

not go

> all the way down and the sore is rubbing still. It doesn't really

matter

> how I try, with the laces and the shape of the boot top she's not

going in

> there all the way. She's very flexible, but at first docs are

puzzled

> because she's strong and like her brothers were at this age likes

to stand

> on her toes or point them a lot and when you try to flex her foot

she

> pushes against you at first. Once she's overpowered she lets them

bend it

> all around just fine. She's not unable to flex her foot enough to

get it

> into the shoe. OK... so because she's just not fitting in them

well the

> hole gets elongated a little bit... and brand new pads (second set

of new

> pads just today) all nicely glued in so as not to bother her.

Ugh... but

> it's not enough. but it's the end of the day, well past go home

time and I

> knew Andy had another brace to work on that night for someone else

so I

> didn't press it. I told them I wasn't happy when I left. I can

see that

> the sore is rubbing there, I can get the tip of my finger under her

heel

> when she's all done up in the shoes tightly. I'm not going to

tighten them

> up more, especially now when I saw what happened to her unsocked

foot when

> he tightened them up as tight as he did that first day (for us

that's 7

> holes on the straps, the magic number of holes that ALWAYS causes

her to

> look like she's in a great deal of pain and she's absolutely

inconsolable,

> I use 5 and 6 depending on how she tolerates it - 6 is pretty

> tight)... her whole foot turned purple in half a minute. I could

see it

> through the hole! And there wasn't even space for a fingernail to

go in at

> the top of the boot it was so tight. AND... he heel still pulled

up

> anyway. Not the answer to the problem IMO.

>

> I left there unhappy and very frustrated, my mom was there and

agreed with

> me. The shoes either need more work to make it so the sore isn't

touching

> anything or we need to get her feet all the way into the shoes.

The more I

> think about this I think it's her calf that's making it difficult.

I have

> muscular calves and high boots sometimes bother me. The way the

shoe is

> made it cinches up around the smaller part of her ankle and that's

pulling

> her feet up even more.

>

> But I put her back into it tonight after she fell asleep (seems to

be the

> only way I can get her to sleep in them at night, daytime naps are

fine)

> and I'm sure it's not going to be good for the sore. I'm torn

between

> keeping the correction and not making a sore on her so I keep

putting them

> back on. I always regret it. She's seeing her ped tomorrow

morning for

> her 2 mo visit (she's almost 11w), maybe he's got a suggestion?

>

> sorry to write a novel here. I don't know what I'm looking for, it

seems

> that most don't have this type of problem... I don't know exactly

how to

> get through it. I'm considering asking for an AFO for the times

that she

> can't wear the dbb. At least it'd be *something* while she's

healing or we

> figure out the calf problem and get her into the shoes properly.

But they

> can take as long as 2 weeks to make :~{

>

> Kori

> Mamma of

> Kenton 6/18/98

> Merek (Maki) 3/5/00

> Darbi Ruth 3/28/03

> http://www.users.qwest.net/~frogabog/

[Guest guest]

Kori,

I am currious, did you tell them what you needed the appointment for? When I

first called for Kai, they told me June, but then I told them it was for

clubfoot ... they transferred me and I got an appointment within 3 weeks. You

might tell them the foot appears to be uncorrected and needs a check ASAP. I

know that Dr. Mosca is constantly travelling to do Ortho Clinics in places like

Alaska, which just goes to show his passion, but there must be some way for them

to get you and Darbi in! Dr. Mosca would know the importance of identifying the

need for further correction ASAP, but I wonder about the scheduler ...

Also, if you havent made any progress by next Tuesday, let me know. We are

going to Seattle on Wednesday, and I could at least try to talk to Dr. Mosca for

you about getting that appointment ... I check my e-mail several times a day,

but if I dont respond quickly, give me a call at . I am almost

always here.

Angel & Kai

Re: Re: DBB - shoes and heels -not seeing eye to

eye LONG

Thanks ,

None of my kidlets have narrow feet lol... we're a wide foot kind of

family... in fact my oldest is double wide. I am interested in the tennis

shoes though. Do you mean the ones of Isabella at the bottom? They look

like they are hightops too. But it's an interesting idea that I'll pass by

them when I see them next. I also noticed a couple of other different

shoes that they are putting on bars. One, in Brooklyn's file looks like an

AFO attached to a bar. The other, in Dan P's file is a completely

different type of boot with velcro and one other still had a black flap and

what looked like snaps on the top. Anyone know much about those different

kinds of shoes and why they don't use them more often? The AFO looking one

seems like it would be the best choice since it's molded to the feet exactly.

I've got her sleeping right now with the shoes too tight for her comfort 6

holes in. She keeps waking up crying and kicking her feet to get them

off. But I think I've got her foot (at least the one I can see through the

hole) all the way down into the shoe this time and I really shoved on the

other one and flexed it up hoping it would take as well. I'll take them

of at 7pm tonight and put them back on after she's asleep for the evening,

somewhere around 9-10 if history repeats itself. Dr. Sussman told me to

put her in them at night and for 4 hours during the day because she's so

well corrected... dunno if he was trying to make it easier for me to put

them on her because I keep telling them I put them on like I'm supposed to

and she ends up with problems when I do or if she's really such a mild case

that it's not a big deal. Either way, I wasn't going to leave them on 23

hours at a time anyway... not after what we've been through. We're

working up to full time slowly if at all. I also let the tongue settle low

over her toes instead of pulling it up high so it's in the *proper*

placement according to where the straps go in. This seems to let her ankle

move a little more which might help keep her from pointing her toes in the

shoes and lifting the heel up. I remember reading that the strap is

supposed to be under the tongue of the shoe in the Tips file... this seems

weird. I haven't done it because it seems like it would be hard on the top

of her foot. Does anyone actually do this?

I called to get an appointment with Dr. Mosca in Seattle... and he's

booked out to September... AND... I need a referral even though we have a

PPO and don't need them for coverage. Like I'm going to go calling Dr.

Sussman and tell him I think we need a second opinion. It's so far out

that it won't help anyway right now.

Thanks for all the help. I'm interested in the other kinds of shoes

available. I'll have to look into it. If anyone has information about who

to contact for these I'd be very grateful.

Kori

Mamma of

Kenton 6/18/98

Merek (Maki) 3/5/00

Darbi Ruth 3/28/03

http://www.users.qwest.net/~frogabog/

At 03:01 PM 6/11/2003 -0700, you wrote:

>Kori-

>

>One more thing are you aware the Markell Straight Last shoe comes in narrow

>widths as well as medium widths. Perhaps she needs the narrow width instead.

> You may want to get the name of the guy in Mexico who makes tennis shoes

>to go on the DBB. You have to replace them more often (because they outgrow

>them fast because the tennis shoes have a closed toe) but they don't come

>all the way like the Markell. Maybe Darbi would do better in those. They

>connect to the same DBB bar. I think there is still a picture of them in

>the photo's file.

>

>