Re: Any advice?

August 23, 2004

Wow, Jen. That was an excellent response. I know it wasn't to me or

pertaining to anything going on with us, but that was a nice response, IMHO.

Freeman

August 23, 2004

How long as she been " taking a break " from the DBB? And if we can ask, what

were the " issues " that convinced you to stop the use of her DBB?

s.

Any advice?

Hi, I am new to this group and seeking advice. My one year old

daughter with bilateral clubfoot has just had her checkup. She was

first casted at barely two days old. She has had the tendon surgury

and has been in shoes with DBB until about three months ago when we

took a break due to a number of issues with it. Although her feet are

in good shape, we need to start using the DBB again to prevent any

regression. We are newly determined to do this right. (Wish I had

read all your posts before we tried it the first time!) Any advice on

reintroducing this to an older baby? We have tried putting it on

while she is sleeping but this can be a production. Also, the doc

now says that she can wear regular shoes during waking hours. He

suggested Stride Rite as she needs shoes that have high tops and a

relatively straight side. Any thoughts?

August 23, 2004

We stopped using it consistantly about three months ago. The main

issue was her lack of sleep. There were some other (much more lame)

reason such as the screws not working with the new shoes (Markell)

and trying to go easy on her while she had a sustained series of

unrelated illnesses. I think our main problem was that we were under

the impression that once she started walking, the DBB wasn't a real

need, just an additional tool. We have figured out that is def. not

the case and now intend to use it. The trouble is that she is now

used to sleeping without it. We are going to try the cosleeping

thing for a while (we did this quite a bit when she was a newborn.

Any other ideas?

> How long as she been " taking a break " from the DBB? And if we can

ask, what were the " issues " that convinced you to stop the use of her

DBB?

> s.

>

> Any advice?

>

> Hi, I am new to this group and seeking advice. My one year old

> daughter with bilateral clubfoot has just had her checkup. She was

> first casted at barely two days old. She has had the tendon

surgury

> and has been in shoes with DBB until about three months ago when we

> took a break due to a number of issues with it. Although her feet

are

> in good shape, we need to start using the DBB again to prevent any

> regression. We are newly determined to do this right. (Wish I had

> read all your posts before we tried it the first time!) Any advice

on

> reintroducing this to an older baby? We have tried putting it on

> while she is sleeping but this can be a production. Also, the doc

> now says that she can wear regular shoes during waking hours. He

> suggested Stride Rite as she needs shoes that have high tops and a

> relatively straight side. Any thoughts?

>

August 23, 2004

Did she always suffer lack of sleep while wearing the DBB or did the sleeping

issue start because she was ill and got in to the habit of being a bad sleeper

because of it? Sounds like you're on the righ track by recommiting yourself to

use the DBB but you'll have some other related things to deal with for a while -

like teaching her how to sleep. I'm the wrong person to ask there, I'm a real

hard @$$ when it comes to bed time, and it takes a lot of convincing to let one

of my kids get back up once I put them to bed, this includes the 11 month old I

have in a DBB right now.

Have you asked your dr. if her feet are OK to put back in the DBB? If they

have relapsed, you have time to correct that successfully, but if they are

relapsed, the DBB will not solve the problem, they will aggrivate the problem

by creating blisters, etc., on her feet and not doing a thing to gain correction

nor maintain correction....you'll be wasting valuable time using a DBB if her

feet relapsed. You may need to re-cast. Just keep that in mind, but it's

better than the alternative.

About sleeping - is she in a crib? Some have found using a mattress laid on the

floor good for older kids in the bar, more room to move around but not far to

fall. We gave up the crib and went to a play pen as a bed because he hit the

rails and woke himself up too much. Otherwise, can you establish a bed time

routine and stick to it rather tightly? This will put her in the habit of going

to bed after some days. Then don't run right to her every minute she cries, let

her learn to comfort her self and learn how to go to sleep by herself. Let her

cry it out - not brutally so, you know, but not spoiling her to bring you

running at every peep, either. Eventually I believe a parent has to say enough

is enough and just let them cry out their fit to learn their fit won't win them

the rewards they want. My dh is not so good at this, but then again, he doesn't

spend all day with them and need a couple hours of quiet time in the evening

like I do. He got ours so spoiled to crying it was hell until finally my dh

was totally exhausted from getting up fourteen times a night and me in bed

saying, " I told ya so! " haha He came to see the light of my thinking after

that....but by then I had to teach the baby how to go to bed all over again.

Ugh, men! (haha)

Good luck and let us know how it goes, if you see your dr. and he gives you the

OK to put them back on.

s.

Any advice?

>

> Hi, I am new to this group and seeking advice. My one year old

> daughter with bilateral clubfoot has just had her checkup. She was

> first casted at barely two days old. She has had the tendon

surgury

> and has been in shoes with DBB until about three months ago when we

> took a break due to a number of issues with it. Although her feet

are

> in good shape, we need to start using the DBB again to prevent any

> regression. We are newly determined to do this right. (Wish I had

> read all your posts before we tried it the first time!) Any advice

on

> reintroducing this to an older baby? We have tried putting it on

> while she is sleeping but this can be a production. Also, the doc

> now says that she can wear regular shoes during waking hours. He

> suggested Stride Rite as she needs shoes that have high tops and a

> relatively straight side. Any thoughts?

>

August 23, 2004

I have experience in this area, so I thought I would give you our story. My

daughter, Olivia (severe left clubfoot) was treated at 5.5 months old by Dr.

Ponseti. She was fully corrected and began wearing the FAB (DBB) at about 6.5

months old. She was in it 23 hours a day for a month and a half when Dr.

Ponseti reduced her hours to 14-16 because he suspected she had loose ligaments.

We began seeing another doctor for follow-ups since we live in Pennsylvania and

it's a loooonnnnggg way to Iowa from here. At 1.5 years old, her new doctor

suggested that we stop using the FAB altogether because of loose ligaments.

Unfortunately, I decided to go the easy route and stopped the FAB wear. I now

regret not following up with Dr. Ponseti himself anf wish we had at the very

least checked in with this board and had seen that Dr. Ponseti no longer takes

loose ligments kids out of the FAB early, he just reduces the angle.

Anyway, just about six months later I noticed Olivia turning her foot in

slightly when she was walking. She did not walk on the outside of her foot, but

it was concerning me. At her next appointment, I pointed it out to the doctor,

but he felt it was nothing to worry about. Over the next three months it

continued to get worse. At her next appointment I again pointed it out to her

doctor who said that she might need to have the ATTT surgery, but that she was

not having a relapse.

We contacted Dr. Ponseti, who confirmed that she was indeed having a relapse and

we took her directly back to Iowa. He recorrected her foot with just one two

week cast, but she did not gain back all of the flexability that she had before.

After the cast came off, Dr. Ponseti had us put her back in the FAB for 16 hours

a day. Let me tell you, that if you think getting a one year old to wear a FAB

when she's not used to it is bad, try a 2.5 year old.

We ultimately have just needed to stick to our guns. Olivia has learned that

this is a TOTALLY non-negotiable issue. She WILL wear the FAB at the times that

she needs to. We have been completely unbending in this rule, even making her

wear it for her two hours in the afternoon while we were at an amusement park.

We kept a close eye on her feet at first, because she developed some disturbing

red marks, and I didn't want them to turn into blisters. We put some blister

blocker bandaids on them every couple of days to let them heal up and the skin

eventually toughened up and she has had no problems since. There were quite a

few sleepless nights here, but she has learned to live with it.

She's been back in the FAB for almost 4 months now and it's back to being a

normal part of her routine again. She still complains about having to wear her

" bwace " as she calls it, but she knows that we aren't going to give in to crying

and whining.

All that being said, since your little one has been FAB free for three months, I

would definitely make sure that she has not lost any correction before

reintroducing the FAB. Wearing a FAB on uncorrected feet is quite painful for a

child. If she seems to be annoyed, stick to your guns, but if she seems to be

in pain, then see the doctor about some more corrective casting.

Good luck and hope I've helped a little!!

Jen & Livie (10-18-01 severe left clubfoot)

August 24, 2004

Thank you for sharing your story. It made me thankful that we have

wised up about the bar so early on. Its too bad that your doctor's

misdiagnosis caused you all this heartache. It's terrible to have to

listen to our little ones cry. I am the weak willed one in our

family. My husband is the most patient man on earth. I think I need

some earplugs.

Thank you all for your replies. Luckily, just yesterday Eden had her

checkup and the doc confirmed that her feet are still corrected, but

he wants to be sure they stay that way. There are times when I think

I see her step onto the outer edge of her left foot just slightly

before setting it down fully, but he watched her walk, took xrays

etc. He believes that if we stick to the DBB at night we can head

this off at the pass. I am going to try your suggestions (esp. being

a hard @$$). We all share a bedroom at the moment as we are

remodeling our second story so I think I will send her to bed first

(before her brother) and see how it goes.

Thanks so much for all your advice.

Christa & Eden

> I have experience in this area, so I thought I would give you our

story. My daughter, Olivia (severe left clubfoot) was treated at 5.5

months old by Dr. Ponseti. She was fully corrected and began wearing

the FAB (DBB) at about 6.5 months old. She was in it 23 hours a day

for a month and a half when Dr. Ponseti reduced her hours to 14-16

because he suspected she had loose ligaments. We began seeing

another doctor for follow-ups since we live in Pennsylvania and it's

a loooonnnnggg way to Iowa from here. At 1.5 years old, her new

doctor suggested that we stop using the FAB altogether because of

loose ligaments. Unfortunately, I decided to go the easy route and

stopped the FAB wear. I now regret not following up with Dr. Ponseti

himself anf wish we had at the very least checked in with this board

and had seen that Dr. Ponseti no longer takes loose ligments kids out

of the FAB early, he just reduces the angle.

>

> Anyway, just about six months later I noticed Olivia turning her

foot in slightly when she was walking. She did not walk on the

outside of her foot, but it was concerning me. At her next

appointment, I pointed it out to the doctor, but he felt it was

nothing to worry about. Over the next three months it continued to

get worse. At her next appointment I again pointed it out to her

doctor who said that she might need to have the ATTT surgery, but

that she was not having a relapse.

>

> We contacted Dr. Ponseti, who confirmed that she was indeed having

a relapse and we took her directly back to Iowa. He recorrected her

foot with just one two week cast, but she did not gain back all of

the flexability that she had before. After the cast came off, Dr.

Ponseti had us put her back in the FAB for 16 hours a day. Let me

tell you, that if you think getting a one year old to wear a FAB when

she's not used to it is bad, try a 2.5 year old.

>

> We ultimately have just needed to stick to our guns. Olivia has

learned that this is a TOTALLY non-negotiable issue. She WILL wear

the FAB at the times that she needs to. We have been completely

unbending in this rule, even making her wear it for her two hours in

the afternoon while we were at an amusement park. We kept a close

eye on her feet at first, because she developed some disturbing red

marks, and I didn't want them to turn into blisters. We put some

blister blocker bandaids on them every couple of days to let them

heal up and the skin eventually toughened up and she has had no

problems since. There were quite a few sleepless nights here, but

she has learned to live with it.

>

> She's been back in the FAB for almost 4 months now and it's back to

being a normal part of her routine again. She still complains about

having to wear her " bwace " as she calls it, but she knows that we

aren't going to give in to crying and whining.

>

> All that being said, since your little one has been FAB free for

three months, I would definitely make sure that she has not lost any

correction before reintroducing the FAB. Wearing a FAB on

uncorrected feet is quite painful for a child. If she seems to be

annoyed, stick to your guns, but if she seems to be in pain, then see

the doctor about some more corrective casting.

>

> Good luck and hope I've helped a little!!

>

> Jen & Livie (10-18-01 severe left clubfoot)

>

August 24, 2004

Christa,

I'm so glad that our story was helpful for you! And that Eden's doctor still

thinks that her feet are corrected!

You are so right about listening to little ones cry. I came across as quite the

harda$$ in my last message, but believe me, it has not been easy for me.

Someone just asked me the other day how Livie adjusted to be being back in her

brace. I told them that she cried a lot at first, but I would much rather deal

with her crying and whining about having to wear a brace now than to have to

hear her crying and complaining about any pain she may have later because of

surgery. I can help her to try to adjust to wearing the FAB, I could also help

her deal with pain caused by scarring from surgery, but why take the risk?

I do try to be sympathetic to her complaints and let her know that I understand

that she doesn't want to wear her brace, but still remain unbending in the

rules. To me it's no different than if she wanted to suddenly take up running

into the street. That would be very bad for her so I will not allow it. Not

wearing her brace could be very bad for her so I will not allow it.

Again, good luck and I hope it's a smooth transition for you. Believe it or

not, there will come a time when she is used to wearing it again!