Re: In the brace - and protocol question

January 10, 2006

At 07:27 AM 1/10/2006, you wrote:

>Well, here we are...finally in the brace. Marcus had his doctor's

>appointment yesterday. The tenotomy cast was removed. His foot looks

>good, but his little toes are curled down somewhat. He's very jumpy

>with that foot. Every time I touch it he jerks it or pulls away. I

>think it's just tenderness from being in the casts so long.

yes, you are right. This will pass. It is normal. Just don't be too

gentle with his foot, imagine if your skin had been in casts for that

long and then someone touches you lightly... yeeeeewwww! the skin is

so tender that you should use a firm touch, do not caress him for a

few days till he gets used to being out of the casts.

>When he

>relaxes the foot, the toes seem to straighten. As soon as I touch

>that leg, they curl. The doctor said that the curled toes should

>straighten as time goes by and when he starts walking. We put the

>p/M brace on at the doctor's office. He didn't even seem to notice

>that he had it on. When we got home and I took him out of the car

>seat, he started the crying. It was on and off crying for maybe

>about two hours and then he settled down. I don't think it was pain -

> just frustration because he couldn't figure out how to move his

>legs with the brace. He slept pretty well last night. I did take the

>brace off before I put him to bed. I gave him a bath and then he

>fussed again when I put the brace back on. Now, as some of you know,

>my little guy's foot looked on the severe side when he was born. The

>doctor said yesterday that even though his foot had looked severe,

>it was actually very flexible. When I asked him about the hours in

>the brace after these initial three months at 23/7, he felt that it

>would probably be safe to bring him down to the 12-14 hours for a

>total of about 2 years. He said he is basing it on the flexibility

>of the foot so far.

While that may be true, it also is not recommended for various

reasons. Not only is the Ponseti protocol to reduce gradually over

the first year so that you are eventually at 12-14hr/d at or around

the time of walking (let's just say 13mo's old on average) but there

have been many many parents who have reported that the little one

stops tolerating the brace at night if you drop right away. That

first year is important to maintain correction (the foot SHOULD be

flexible after correction) but they need that time to adjust to

wearing the brace so that when nightime only does come they won't

fight it. You have to make it their *normal* or you will more than

likely get resistance. So many parents have said that babe won't

sleep with the brace on after the 23/7 even though during the full

time phase the child was perfectly happy. If you are going to make

it through this for 4y, your 2-4yo must not think they can get you to

take it off and they must also know that it's simply part of their

routine and there is no other choice. To make this as smooth as

possible (not to mention chances of relapse regardless of flexibility

or severity are higher) you really must do it as specified.

> I asked him about the possibility of relapsing

>and the protocol of keepig them in the brace until 4 years of age.

>He said a lot depended on how flexible the foot is and how compliant

>parents are with actually keeping the brace on the recommended

>amount of time during the bracing period. I think I will still come

>down in hours more gradually and keep the brace on for a longer

>period of time (probably 3 1/2 -4 years). I know this subject has

>been ongoing, but I am wondering if your children's doctors are

>saying the same thing.

A lot of docs are new to this and haven't actually seen children go

through the full 4y. They haven't seen the results of discarding the

brace early, but Iowa has. I don't know if your doc has been doing

this for little time or not, but the bracing protocol changed about

3y ago to the 3-4 (or 5 for some children) duration. This isn't

because they want the kids to wear it for that long, it's because

they don't want kids to have to either go back to casts and then back

to long hours (imagine a 3yo at 18hr/d? it would work, it can be done

but after not wearing it like that it's not going to be pleasant for

either parents or child to get back to that routine) or have to have

the ATTT surgery. Since they have started keeping them in longer the

rate of relapse has declined drastically as well as the ATTT

surgeries. I think the last I heard was that there were only a very

few of these surgeries done on Iowa patients in the past couple of

years, if that.

I know it sounds like a lot but someday you'll be in my

situation... where you're facing the possibility of release and it

just doesn't seem right. After this long... what's another 6mo- a

year more for insurance? I will know after this is finally all over

that I did all that I could with bracing and should she

relapse... it's not because I discarded the brace prematurely. And

BTW... my daughter (like so many others) can't hardly sleep without

her brace! The few times I've put her down without it she kicks

around and is restless till I go get it and put it on. So I stopped

even doing that at all lol... She even asks for it :~}

>By the way, I did take some pictures of my son's foot when the brace

>was off, but he was so jumpy and fussy and they didn't come out very

>well. So I will try again today.

>

Can't wait! And I'm more than thrilled to hear that the first hours

were so smooth... that is totally opposite of the response with the

Markells even if they do eventually become comfortable. I love that!!!

Kori

>

January 10, 2006

My first doctor said that we were out of the shoes when he started to walk, so

we switched. 's foot looked severe as well, but they only took 6 casts

and no tenotomy, so looks can be deceiving. We did 23/7 for 3 months, then

gradually reduced hours. When was 6 months, 4 months in the brace, our

doctor told us we could go to nights only. We didn't actually do this until

was 10 months. It would have been longer too, but he has had other

developmental issues, and we felt he needed this free time to gain the skills he

needed. At 13 1/2 months, he is just now starting to crawl and try to pull up.

We took a risk, and so far it has been fine, but I would wait as long as

possible to go to just nights if you can.

11/19/04

novemberfable wrote:

Well, here we are...finally in the brace. Marcus had his doctor's

appointment yesterday. The tenotomy cast was removed. His foot looks

good, but his little toes are curled down somewhat. He's very jumpy

with that foot. Every time I touch it he jerks it or pulls away. I

think it's just tenderness from being in the casts so long. When he

relaxes the foot, the toes seem to straighten. As soon as I touch

that leg, they curl. The doctor said that the curled toes should

straighten as time goes by and when he starts walking. We put the

p/M brace on at the doctor's office. He didn't even seem to notice

that he had it on. When we got home and I took him out of the car

seat, he started the crying. It was on and off crying for maybe

about two hours and then he settled down. I don't think it was pain -

just frustration because he couldn't figure out how to move his

legs with the brace. He slept pretty well last night. I did take the

brace off before I put him to bed. I gave him a bath and then he

fussed again when I put the brace back on. Now, as some of you know,

my little guy's foot looked on the severe side when he was born. The

doctor said yesterday that even though his foot had looked severe,

it was actually very flexible. When I asked him about the hours in

the brace after these initial three months at 23/7, he felt that it

would probably be safe to bring him down to the 12-14 hours for a

total of about 2 years. He said he is basing it on the flexibility

of the foot so far. I asked him about the possibility of relapsing

and the protocol of keepig them in the brace until 4 years of age.

He said a lot depended on how flexible the foot is and how compliant

parents are with actually keeping the brace on the recommended

amount of time during the bracing period. I think I will still come

down in hours more gradually and keep the brace on for a longer

period of time (probably 3 1/2 -4 years). I know this subject has

been ongoing, but I am wondering if your children's doctors are

saying the same thing.

By the way, I did take some pictures of my son's foot when the brace

was off, but he was so jumpy and fussy and they didn't come out very

well. So I will try again today.

January 10, 2006

Dolores (feels weird actually having a name to address you with, lol),

I say, no matter what your doc says, do not drop hours directly from

23/7 to 12-14. Most people who have done this experience more

problems with non-compliance. Baby gets that taste of freedom then

wants nothing to do with the brace. I think a good way to do this if

you are not being directed by your doc is after the 23/7 period do

20-22 for a month or two, then 16-18 for a month or two, and finally

12-14, which should bring you to about 1 year old or walking age,

which is the time Dr. P usually recommends 12-14.

I also think it is better to be safe than sorry and I plan to continue

with Sammy's bracing til he is at least 4 even if for some reason our

doctor should say it is okay to take him out of it sooner.

About him being jumpy when you touch the foot, I remember a couple

other people who experienced this, they seemed to find that a light

touch was more irritating than a firm touch when needing to touch that

leg/foot. You can try a good firm massage, to help get him used to

having it touched again.

Oh, and the toes, Sammy's toes were totally funky curly when he got

out of casts but they have indeed straightened out now that he is

older (15 months).

Hope this helps,

>

> Well, here we are...finally in the brace. Marcus had his doctor's

> appointment yesterday. The tenotomy cast was removed. His foot looks

> good, but his little toes are curled down somewhat. He's very jumpy

> with that foot. Every time I touch it he jerks it or pulls away. I

> think it's just tenderness from being in the casts so long. When he

> relaxes the foot, the toes seem to straighten. As soon as I touch

> that leg, they curl. The doctor said that the curled toes should

> straighten as time goes by and when he starts walking. We put the

> p/M brace on at the doctor's office. He didn't even seem to notice

> that he had it on. When we got home and I took him out of the car

> seat, he started the crying. It was on and off crying for maybe

> about two hours and then he settled down. I don't think it was pain -

> just frustration because he couldn't figure out how to move his

> legs with the brace. He slept pretty well last night. I did take the

> brace off before I put him to bed. I gave him a bath and then he

> fussed again when I put the brace back on. Now, as some of you know,

> my little guy's foot looked on the severe side when he was born. The

> doctor said yesterday that even though his foot had looked severe,

> it was actually very flexible. When I asked him about the hours in

> the brace after these initial three months at 23/7, he felt that it

> would probably be safe to bring him down to the 12-14 hours for a

> total of about 2 years. He said he is basing it on the flexibility

> of the foot so far. I asked him about the possibility of relapsing

> and the protocol of keepig them in the brace until 4 years of age.

> He said a lot depended on how flexible the foot is and how compliant

> parents are with actually keeping the brace on the recommended

> amount of time during the bracing period. I think I will still come

> down in hours more gradually and keep the brace on for a longer

> period of time (probably 3 1/2 -4 years). I know this subject has

> been ongoing, but I am wondering if your children's doctors are

> saying the same thing.

> By the way, I did take some pictures of my son's foot when the brace

> was off, but he was so jumpy and fussy and they didn't come out very

> well. So I will try again today.

>

January 10, 2006

Thank you all for your reply. It helps to have it confirmed by

others. I do plan on coming down more slowly in hours and continuing

with the bracing until about 4 years of age.

Well, at least now there's an actual name behind the posts.

> >

> > Well, here we are...finally in the brace. Marcus had his

doctor's

> > appointment yesterday. The tenotomy cast was removed. His foot

looks

> > good, but his little toes are curled down somewhat. He's very

jumpy

> > with that foot. Every time I touch it he jerks it or pulls away.

I

> > think it's just tenderness from being in the casts so long. When

he

> > relaxes the foot, the toes seem to straighten. As soon as I

touch

> > that leg, they curl. The doctor said that the curled toes should

> > straighten as time goes by and when he starts walking. We put

the

> > p/M brace on at the doctor's office. He didn't even seem to

notice

> > that he had it on. When we got home and I took him out of the

car

> > seat, he started the crying. It was on and off crying for maybe

> > about two hours and then he settled down. I don't think it was

pain -

> > just frustration because he couldn't figure out how to move his

> > legs with the brace. He slept pretty well last night. I did take

the

> > brace off before I put him to bed. I gave him a bath and then he

> > fussed again when I put the brace back on. Now, as some of you

know,

> > my little guy's foot looked on the severe side when he was born.

The

> > doctor said yesterday that even though his foot had looked

severe,

> > it was actually very flexible. When I asked him about the hours

in

> > the brace after these initial three months at 23/7, he felt that

it

> > would probably be safe to bring him down to the 12-14 hours for

a

> > total of about 2 years. He said he is basing it on the

flexibility

> > of the foot so far. I asked him about the possibility of

relapsing

> > and the protocol of keepig them in the brace until 4 years of

age.

> > He said a lot depended on how flexible the foot is and how

compliant

> > parents are with actually keeping the brace on the recommended

> > amount of time during the bracing period. I think I will still

come

> > down in hours more gradually and keep the brace on for a longer

> > period of time (probably 3 1/2 -4 years). I know this subject

has

> > been ongoing, but I am wondering if your children's doctors are

> > saying the same thing.

> > By the way, I did take some pictures of my son's foot when the

brace

> > was off, but he was so jumpy and fussy and they didn't come out

very

> > well. So I will try again today.

> >

>

January 11, 2006

His foot hasn't been handled in a long time so he might be sensitive about

having it touched, it's a new experience with him. Warm baths and massage in

the water might help.

It was said here just this week I think about dropping hours too fast causing

kids to reject the entire brace...for that reason, and because it's not

Ponseti's protocol to jump down so fast, I would reduce hours slowly. And as

was also said here just very recent, Iowa's research still cannot determine

which kids are at a higher risk of relapse so wearing the FAB the full 4 years

or as long as the child will tolerate it past 4 years is the goal to avoid

relapse.

s.

In the brace - and protocol question