Re: DDB slipping, creased foot

[Guest guest]

Becky,

The mfr. doesn't put the plastizode in, the orthotist (brace shop) who

fitted your shoes does. The new model shoes don't need this insert and you

might consider going with the new shoes next time around or perhaps even

now if after trying everything you can your only other option is to

discard the DBB. I would hesitate to move that insert down at all because

having it press low on my daughter's foot because her heel wasn't all the

way down in the shoe caused it to press hard in the wrong place of her heel

and caused her to have a terrible pressure sore that didn't heal because I

kept putting the shoes back on. I don't think moving the insert will help

keep the shoes on at all, it might however cause another sore though. They

are likely either too loose or the heel isn't all the way down when they

are tightened up (and seem very tight) and this is causing slippage and

them actually being too loose.

As far as the blister... 2-3 hours out of the shoe a day may not be enough

to heal it. If it doesn't get better in a few days it will not get better

being put back in the shoe. If it stays the same or gets worse you will

have to consider either going back to a cast to get it healed (really not

so bad when you compare it to weeks and weeks of pain and weeping sores for

your baby - casts were easy compared to a badly fitted DBB that caused her

pain) and then back into the shoes but making sure they're not slipping and

he's in them properly. Or you could do what we finally did and some others

have resorted to doing to get the foot healed but keeping baby in the brace

which is to cut a hole where the sore is and remove all pressure from that

area. Keep in mind that cutting a hole without solving the problem will

not help, especially if he's slipping in that shoe. Solve the slippage

problem and remove the pressure spot at the same time (having a window to

see what was actually going on really helped us figure out how to solve our

problems). And remember, if you ruin a pair of shoes now by cutting a hole

it'll only be a few months before you'll need new ones so it's really not

that big of a deal.

AFO's take a couple of weeks to make, so in that time you could figure out

how to keep these shoes on and solve your problems. If it were me I'd try

that route first instead of going with $2K AFO's that aren't considered to

work as well as the DBB/FAB.

If you need help with putting the shoes on let me know. I had to make a

concerted effort to make sure the heel was down in the shoes because that's

what caused the problem in the first place. Once I did that I got the

strap tighter by two holes and she didn't scream. wow... It really made a

difference for us to know she was all the way down in the shoe. Also, I am

very sure that the tongue sits too high in these shoes and makes it so that

it's difficult to keep the heel down and not slip. I stopped putting the

tongue where it naturally sits (high on the ankle - above the top of the

boot) and pulled it way down over the toes so that it was level or under

the top of the boot and it made a huge difference keeping her heel down

once the shoe was buckled and tied. On the new shoes I had the brace shop

slit the tongue keeper so that I could do this and I feel it's very

important because babies have fat calves and the tighter the shoe is at the

ankle the less chance of slipping.

HTH,

Kori

At 11:53 PM 11/14/2003 -0500, you wrote:

>I hope reads my email. I think she must work with Dr Ponseti?

>According to the emails she is in Iowa. But I read an email from Meredith,

>about her

>daughter with a crease on her L foot. Meredith, your case is just like my

>son's only it's his right foot and his right foot big toe does not curl up

>but it

>is considerably shorter than the other toes on that foot. He has been in the

>DDB about 2 1/2 weeks and I believe the crease is getting worse not sure, I

>will watch it. His right foot slips alot and because of the slipping he has a

>blister area. I lately have been leaving the DDB off for 2 hrs to help the

>blister heal. It is kinda deep, and bled some the other day. To help prevent

>slipping my doctors physical therapist said that the sponge heel insert (I

>think it

>is called plastazote) could be moved down. She did move it a little but I

>think it has moved back up because it hardly looks different from the

>other shoe.

>I do think if it was down alot further then it may help it not slip, but why

>then does the manufacturer place it soo high. I have been nervous to move it

>because I thought there must be reason for the placement so high.

>Meredith also mentioned that a AFO helped keep the foot flat, should I ask my

>MD for this? I sure hate to go back to casts, would like to know if there is

>something I should be doing. Son is 12 weeks old now.

>Is it good advise not to use jumper or saucer so he doesn't use toes?

>Meredith also mentioned that she got custom shoes in Iowa City. How are these

>different from DDB? Is there something I should be doing to prevent problems?

>Becky

>

>

>

[Guest guest]

Becky,

What you describe is just like Kai's foot - toe is not scrunched up, but shorter

than the others, as well as a crease. For some reason, the shoes DO stay on

Kai, but he is the only one with a crease that the Markell shoes stay on (I

think! Cant remember about Sadie). Anyway, Kai and Meredith's daughter have

the same thing wrong - as well as several others here. There is a ligament in

the bottom of the foot that causes the foot to scrunch up in the middle.

I hate to say it, but the only way to fix it is to go back into casts. I know

that isnt what you want to hear, but it is the truth. At this time, the DBB is

not going to do anything for your son's foot - in fact, it almost seems to make

it worse. There are 4 here whose children have had to be recasted for this very

reason, and two of them now have custom made shoes/bar, and two are using the

DBB with modifications ok'd by Dr Ponseti. Three of the four were recasted by

Dr Ponseti himself, and the fourth was recasted by Dr Mosca, my son's doctor,

after I brought back info to him from Iowa City.

Please understand that neither you nor your doctor have done anything wrong to

cause this, but that other than casting, there is nothing to repair it now,

either. No matter what you do to the shoes, it will not get better. It is not

slippage causing the problem.

Please feel free to contact me at m_kitaki@... for more information,

including stretches you can do after recasting to help prevent a recurrance. I

have alot of information compiled, but way too much to post here. I also

suggest contacting Dr Ponseti by e-mail ignacio-ponseti@... and urging

your doctor to contact him as well, sinch this is not a " normal " clubfoot and

only 3 or 4 doctors in the country are familiar with it.

Angel

Kai 12/31/02 - Unilat. R CF w/Plantaris

Treated by Dr Mosca (Seattle) and Dr Ponseti

[Guest guest]

Hi Becky,

My daughter is Sadie and she has creases like you describe. We were

unable to get much response from anyone (except from this group)

until we emailed pictures to Dr Ponseti. He corresponded with her

doctor and Sadie returned to casts. Dr Ponseti has been very helpful.

He has not seen her yet but we may end up in Iowa soon. Where do you

live?

Her feet did stay in her DBB but she developed blisters also. We cut

holes in the back of her shoes to relieve the pressure.

Best wishes,

and Sadie

[Guest guest]

Becky,

I sent you the information you requested ... let me know if you get it. It was

a very long e-mail with about 18 photos attached, so I just hope it will deliver

to you! If it doesnt, I will be happy to break it up into smaller files or zip

it or something so that it will get to you

Angel

Kai 12/31/03 Unilat R CF w/Plantaris

Casted by Dr Mosca in Seattle and Dr Ponseti in Iowa City