Re: We're approaching 3yo...

January 5, 2006

Kori:

I am not in that situation yet, another couple years and I will be. But just

going down to 20,21 hours from 23 hours I have been reluctant and wanted to take

it very slowly. I would rather error on the side of caution and take my time. I

don't think an extra six months of bracing would be a bad idea. I've had it in

my head since the beginning that Austin will be in the brace until he's four..

Your right, chances are very low that Darbi would relapse but from what you say,

I don't think the extra 6 months or so will bother her at all.

Reid

And I'm starting to get nervous. Darbi's got an appointment on the

13th with Dr. Sussman. Who, if anyone remembers wanted to let her

discard the FAB at 17mo's. I refused, and said at least till 3. Now

I'm getting nervous as 3 is about 3 mo's away and I'm thinking

another 6mo's would be the best option for her. She was considered

mild at birth, corrected easily and has never had any issues with

relapse or correction. In fact... her foot looks about as normal as

can be except the heel which is more rounded than her non CF. She'll

be getting an x-ray at her appointment (well SEE if any bones are

crossed lol!). I am fairly certain that she would be fine with

discarding the FAB but I'm not entirely sure and it just seems to me

that it would be so much better and easier to play it safe and go to

3-1/2yo now. She can't hardly sleep without it and it's so much a

part of her life that it wouldn't be so much to just go the extra

6mo's. I don't think she'll need it past that though. I have a

feeling that even Dr. P. would say she could stop wearing it.

I'd be kicking myself big time if she did have a relapse though. It

would be very difficult to go back to it if that happened and I

really don't even want to risk the possibility. But then

again... she's in such good shape with this the chances are low.

Thoughts?

Kori

January 5, 2006

Kori -

We were in those same shoes last summer. We ended up not seeing Dr.

Ponseti for our checkup, but saw a local doc (Dr. ) who kind of

looked at me as if to say " So, what do you think " ? I told him that we

felt more comfortable leaving Zach in the DBB a little longer. What

could it hurt, right? Then I got to thinking - COULD it hurt

anything? So, I emailed Dr. Ponseti. He said it wouldn't hurt Zach

in any way to keep him in the DBB longer. He felt I could take him

out of it, or leave him in it - he basically left the decision up to

us. (my biggest concern was knees and hips - would it affect them?)

Zach is 3 1/2 now and we still aren't thinking of taking him out of

the DBB. He doesn't bat an eyelash when we put it on him at night -

so I'm going the better safe than sorry route. We'll be going to Iowa

this summer to see Dr. Ponseti and will see what he thinks then.

The day we take away the DBB will be an emotional one. It'll be hard

in so many ways. I'm nervous of relapse, it's been a part of our

lives for SO long, the whole night time routine will feel thrown off -

LOL, etc.

Zach's foot was moderate in severity and corrected very easily. The

whole process has been ideal for us - so there's a superstitious part

of me that says " since it's all gone so well something bad just HAS to

happen - aka relapse. Silly thinking, I know....

So, in short - I totally understand your qualms.

OH, and I did get the video to work. Your response made me chuckle.

Yes, I did need to download the current version of whatever program

that was. The video brought me to tears - it was so well done.

Hugs,

Holly

Zachary 7/27/02

Unilateral Right C/F

Treated By Dr. Ponseti

DBB Nights Only

>

> And I'm starting to get nervous. Darbi's got an appointment on the

> 13th with Dr. Sussman. Who, if anyone remembers wanted to let her

> discard the FAB at 17mo's. I refused, and said at least till 3. Now

> I'm getting nervous as 3 is about 3 mo's away and I'm thinking

> another 6mo's would be the best option for her. She was considered

> mild at birth, corrected easily and has never had any issues with

> relapse or correction. In fact... her foot looks about as normal as

> can be except the heel which is more rounded than her non CF. She'll

> be getting an x-ray at her appointment (well SEE if any bones are

> crossed lol!). I am fairly certain that she would be fine with

> discarding the FAB but I'm not entirely sure and it just seems to me

> that it would be so much better and easier to play it safe and go to

> 3-1/2yo now. She can't hardly sleep without it and it's so much a

> part of her life that it wouldn't be so much to just go the extra

> 6mo's. I don't think she'll need it past that though. I have a

> feeling that even Dr. P. would say she could stop wearing it.

>

> I'd be kicking myself big time if she did have a relapse though. It

> would be very difficult to go back to it if that happened and I

> really don't even want to risk the possibility. But then

> again... she's in such good shape with this the chances are low.

>

> Thoughts?

>

> Kori

>

January 5, 2006

Kori,

Dr. Morcuende told me about the time of the 2004 symposium that after

seeing a number of relapses in older kids (ages 4 to 6), they were

urging parents to have kids wear the brace to age 4, if tolerated,

and sometimes even longer.

Of course the risk goes down with each year that goes by, and each

case is different; some feet are milder, some are too loose and need

be released earlier.. but I think the idea is that if the child is

doing OK wearing the brace, then it is extra insurance to continue.

I'm sure you've seen the following from Dr. Morcuende,

" The rate of relapse decreases with age until about 5-6 years of age.

Overall, the odds of relapse if no bracing is used whatsoever is

something like: <12 months = 80-90 %; <2 years: 60-70%; 3-4 years:

20%, 4-6 years; 1%. However, it is not possible to know in which

group a particular patient is in, so you have to treat everyone

cautiously. "

He also did a paper on how hyperabduction in the last cast combined

with brace wear were the keys to preventing relapse.

Here is what Dr. Ponseti wrote to me in August '05:

" in the past two years or so we have had a few late relapses. We

cannot predict beforehand who is going to relapse. Owing to our

interest in avoiding relapses, we are encouraging parents to continue

the bracing longer, especially if the child tolerates it well. Feet

that were very severe at birth and difficult to correct seem to be

the most vulnerable to relapse. Unfortunately we do not know the

pathology that causes this nor do we know why relapses occur in some

children after 5 years of age. "

So, I can understand your skittishness about stopping.. I felt the

same way, at the age 3 and 3 1/2 checkpoints. If Darbi is doing well

with the brace, and you are too, I would keep on a while. It might

not be necessary, but that's the way of insurance ..

Also, I never figured we were 'safe' just because Claire's foot

looked great and functioned so well. I figured it was the brace that

was keeping it that way..

Hope this helps,

and Claire

January 5, 2006

so what you're saying is that maybe I should really consider 4y

then? It's always been there as a possibility but with her history I

was thinking 3-1/2 would be *plenty*. Then again I'd made that

decision over a year ago about 3 to 3-1/2 minimum and if Dr. P. is

saying in Aug. '05 a little more caution is indicated I will have to

go with that. She does tolerate them well still, although I may let

her drop to 12 hours max for that 4th year. I could do that... I'm

pretty strict with the minimum 13-14 now so she's been braced a lot

so far and if she could get them off at 8am she'd be thrilled. I

think I'll need to bring in this info with me... and probably my dh

for backup (he's never been!). I'd thought she wouldn't need new

shoes but tonight I noticed she is nearly over the edge of the toes

already so she'll need new ones for sure. Probably have them do the

impressions for when we're there. That is IF... they let her

stay in them. Otherwise... well I guess I'll have to actually use

our insurance and get a script from Dr. P. for them or something. Oh

yeah... new year = deductible time. blech.

If you can't guess, I'm worried they'll pull her Shriner's card (or

whatever she's got to be treated there lol) because I'm going against

her Dr's recommendations. If my dh and I, and our backup papers

can't convince him to give her another script it'll be right fun to

do this huh? I wonder if Dr. P. has time in his schedule to consult

with me via email. I don't want to bug him but if he says it, I may

have better backup. I think I'll take pictures of her feet tomorrow

for him and send them to him and ask for his opinion. It's time to

take yearly pics anyway.

Thanks, I like how you stated all this, it really shed some light on

what being cautious is all about with this. Like I don't *know* this

stuff myself... sometimes it's nice to hear others say it out

loud. Makes it much easier to be confident with my convictions.

Kori

At 08:25 PM 1/5/2006, you wrote:

>Kori,

>

>Dr. Morcuende told me about the time of the 2004 symposium that after

>seeing a number of relapses in older kids (ages 4 to 6), they were

>urging parents to have kids wear the brace to age 4, if tolerated,

>and sometimes even longer.

>

>Of course the risk goes down with each year that goes by, and each

>case is different; some feet are milder, some are too loose and need

>be released earlier.. but I think the idea is that if the child is

>doing OK wearing the brace, then it is extra insurance to continue.

>

>I'm sure you've seen the following from Dr. Morcuende,

>

> " The rate of relapse decreases with age until about 5-6 years of age.

>Overall, the odds of relapse if no bracing is used whatsoever is

>something like: <12 months = 80-90 %; <2 years: 60-70%; 3-4 years:

>20%, 4-6 years; 1%. However, it is not possible to know in which

>group a particular patient is in, so you have to treat everyone

>cautiously. "

>

>He also did a paper on how hyperabduction in the last cast combined

>with brace wear were the keys to preventing relapse.

>

>Here is what Dr. Ponseti wrote to me in August '05:

>

> " in the past two years or so we have had a few late relapses. We

>cannot predict beforehand who is going to relapse. Owing to our

>interest in avoiding relapses, we are encouraging parents to continue

>the bracing longer, especially if the child tolerates it well. Feet

>that were very severe at birth and difficult to correct seem to be

>the most vulnerable to relapse. Unfortunately we do not know the

>pathology that causes this nor do we know why relapses occur in some

>children after 5 years of age. "

>

>So, I can understand your skittishness about stopping.. I felt the

>same way, at the age 3 and 3 1/2 checkpoints. If Darbi is doing well

>with the brace, and you are too, I would keep on a while. It might

>not be necessary, but that's the way of insurance ..

>

>Also, I never figured we were 'safe' just because Claire's foot

>looked great and functioned so well. I figured it was the brace that

>was keeping it that way..

>

>Hope this helps,

>

> and Claire

>

January 6, 2006

Kori,

I think from what you have described it is certainly do-able for you

guys to continue to age 4 without a problem. You could even maybe

reduce hours to the 10-12 range, I dunno. I wonder if you have

trouble getting the doc to agree, if the Shriner's is part of the

issue if you could get a consult w/ Dobbs since he is w/ Shriner's too

if that would help?

Just thinking outloud,

> >Kori,

> >

> >Dr. Morcuende told me about the time of the 2004 symposium that after

> >seeing a number of relapses in older kids (ages 4 to 6), they were

> >urging parents to have kids wear the brace to age 4, if tolerated,

> >and sometimes even longer.

> >

> >Of course the risk goes down with each year that goes by, and each

> >case is different; some feet are milder, some are too loose and need

> >be released earlier.. but I think the idea is that if the child is

> >doing OK wearing the brace, then it is extra insurance to continue.

> >

> >I'm sure you've seen the following from Dr. Morcuende,

> >

> > " The rate of relapse decreases with age until about 5-6 years of age.

> >Overall, the odds of relapse if no bracing is used whatsoever is

> >something like: <12 months = 80-90 %; <2 years: 60-70%; 3-4 years:

> >20%, 4-6 years; 1%. However, it is not possible to know in which

> >group a particular patient is in, so you have to treat everyone

> >cautiously. "

> >

> >He also did a paper on how hyperabduction in the last cast combined

> >with brace wear were the keys to preventing relapse.

> >

> >Here is what Dr. Ponseti wrote to me in August '05:

> >

> > " in the past two years or so we have had a few late relapses. We

> >cannot predict beforehand who is going to relapse. Owing to our

> >interest in avoiding relapses, we are encouraging parents to continue

> >the bracing longer, especially if the child tolerates it well. Feet

> >that were very severe at birth and difficult to correct seem to be

> >the most vulnerable to relapse. Unfortunately we do not know the

> >pathology that causes this nor do we know why relapses occur in some

> >children after 5 years of age. "

> >

> >So, I can understand your skittishness about stopping.. I felt the

> >same way, at the age 3 and 3 1/2 checkpoints. If Darbi is doing well

> >with the brace, and you are too, I would keep on a while. It might

> >not be necessary, but that's the way of insurance ..

> >

> >Also, I never figured we were 'safe' just because Claire's foot

> >looked great and functioned so well. I figured it was the brace that

> >was keeping it that way..

> >

> >Hope this helps,

> >

> > and Claire

> >

January 6, 2006

>

>I was wondering something about the s. Was the original idea

>in developing them that they were for those littler kids who were

>having trouble, for whatever reason, wearing the standard brace, but

>that as they got older they would go back to the Markell FAB? Or am I

>wrong about that? Can the shoes be custom made up to any

>size? or have none of the kids gotten old enough yet to be

>at that point?

Darbi has the largest size he makes so far, and he made that size for

her first I think. And I think Kai isn't far behind her either, he

may have 6's too. We, won't be going back to Markells if I have

anything to say about it. Our problem with the Markells was that the

toe box would push her toes together and I believe it was causing her

curvy toes problem. It has helped to have more room there for her,

the one toe was getting pretty bad but it is now a little straighter

and I feel that it will eventually grow more straight with the room

she's got in the PM's (however I will be discussing a script for some

kind of splint for that toe with the doc this time - we have never

actually seen him about this, only sent pics because we keep missing

appointments or they reschedule her for months after the original

appointment). They were originally developed like you said to be

used initially only, but since there are some children (such as Kai)

who will need them throughout the bracing term the larger sizes are

needed regardless. I don't hate the Markells, I like them a lot

actually but there are some things about the PM's that I like much,

much better, especially for older kids. The flatness of the bar for

one, she's not wobbling on top of a bar standing with her feet

pointing down (toes touching floor) and she can walk unaided nicely

with flat feet in these. They are also so flexible she can dance in

them lol! She's simply more comfortable in them and I feel strongly

about not squashing her toes so they're all curved and sitting on top

of the other toes like they were before. will have to make a

larger mold for her next pair, I suppose I should warn him prior to

sending her impressions...

>you should definitely write to Dr. Ponseti. I'm sure he'd be willing

>to consult with you, esp. as related to the s, brace time,

>etc. (It sounds like those issues have been on his mind especially as

>of late..)

>

January 6, 2006

I'm still concerned my dh seems set on 3 years. the other day I said, " By this

time next year he'll be able to put that on himself! " haha cuz he was trying to

put it on at the time...and husband says, " This time next year he won't even

need it. "

we keep going around about it because Ponseti said at our last appt. " Probably

three years " . but everyone else I hear on here is saying four now. His feet are

soooo good I hate to risk any loss.

s.

Re: We're approaching 3yo...

Kori,

Dr. Morcuende told me about the time of the 2004 symposium that after

seeing a number of relapses in older kids (ages 4 to 6), they were

urging parents to have kids wear the brace to age 4, if tolerated,

and sometimes even longer.

Of course the risk goes down with each year that goes by, and each

case is different; some feet are milder, some are too loose and need

be released earlier.. but I think the idea is that if the child is

doing OK wearing the brace, then it is extra insurance to continue.

I'm sure you've seen the following from Dr. Morcuende,

" The rate of relapse decreases with age until about 5-6 years of age.

Overall, the odds of relapse if no bracing is used whatsoever is

something like: <12 months = 80-90 %; <2 years: 60-70%; 3-4 years:

20%, 4-6 years; 1%. However, it is not possible to know in which

group a particular patient is in, so you have to treat everyone

cautiously. "

He also did a paper on how hyperabduction in the last cast combined

with brace wear were the keys to preventing relapse.

Here is what Dr. Ponseti wrote to me in August '05:

" in the past two years or so we have had a few late relapses. We

cannot predict beforehand who is going to relapse. Owing to our

interest in avoiding relapses, we are encouraging parents to continue

the bracing longer, especially if the child tolerates it well. Feet

that were very severe at birth and difficult to correct seem to be

the most vulnerable to relapse. Unfortunately we do not know the

pathology that causes this nor do we know why relapses occur in some

children after 5 years of age. "

So, I can understand your skittishness about stopping.. I felt the

same way, at the age 3 and 3 1/2 checkpoints. If Darbi is doing well

with the brace, and you are too, I would keep on a while. It might

not be necessary, but that's the way of insurance ..

Also, I never figured we were 'safe' just because Claire's foot

looked great and functioned so well. I figured it was the brace that

was keeping it that way..

Hope this helps,

and Claire

January 6, 2006

's wife, Jean, told me that the s were designed for " the

worst cases " which did not respond well to the Markells. Although my daughter's

feet are not severe are atypical, her toes are, which caused the Markells to

give her a terrible pressure sore. So we are in the process of ordering the

s for her. It seems that the Markells work fine for many kids but not

for others and the ones for whom the Markells do not work need the s.

Dr. Ponseti, in his reply to my email, recommended the s since

has atypical toes and the Markells caused her problems. Hope that helps!

Carol

Re: Re: We're approaching 3yo...