More questions...

[Guest guest]

isn't a DAFO what that research person was talking about a few weeks back?

BTW, I agree that the DBB is the ONLY way to go, especially if you are

following the Ponseti Method.

Freeman

[Guest guest]

Hi. First just my thoughts to the mom who's baby is having

seizures...I'm no doc but febrile seizures are fairly common, and

generally harmless (IF that's what your baby is having). Some babies

get them when they have a fever. My cousin's baby had them and it

was scary & they had to undergo all this testing & in the end they

just said it's febrile seizures & anytime he starts to get a temp

they have to give him Baby Tylenol RIGHT AWAY to keep his temp down.

Anyway, that may not be what's happening to your baby, but that's my

2 cents!! I hope everything turns out okay!

Anyway, my daughter got her last cast off last Tuesday, and her foot

is BEAUTIFUL!!! Here's the thing...my doc uses Ponsetti's casting

method, but not the DBB. He's prescribed a DAFO for my daughter. I

tried doing some research because I had asked here before about the

AFO & KAFO, but I never heard of a DAFO (Dynamic Ankle-Foot

Orthodic). I can't completely understand it's function from what I

read online, but from the pic I found, it looks VERY different from

the AFOs & KAFOs. I'm EXTREMELY confused and VERY NERVOUS...I very

much trust my doc, and I've questioned him before about the Ponsetti

method, because he does certain things differently. He is actually

in close contact with Dr. Ponsetti & is going to Iowa next week to

meet with him. The reason he prescribed the DAFO is because he said

he can't get the DBB to work, he's had alot of trouble with it, blah

blah blah & that's why he's going to Iowa next week. But he also

said their relapse rate is around 50%, as opposed to Dr. P's 10% or

so. I was hoping someone knew something about the DAFO & could help

me understand it before I meet with the orthodist or whatever

they're called to get her fitted. Please help! I can't exactly

express my confusion in words, but I'm sure everyone understands. I

feel like I've been strong about the whole process so far...but now

I see her kicking her little legs & wiggling her toes and I'm

feeling resentful. I don't want her to have to wear a brace or bar

or shoes or whatever! I just want to put cute little shoes on her

like I did my other two and watch her learn to pull her feet up &

suck on her toes....not go back to the stiff little leg that's hard

to hold. I don't know what I'm saying, but like I said I'm sure you

all understand the feelings I'm having. I absolutely know that

bracing is essential, so don't lecture me!! I'm just letting off

steam!! :-)

Thanks,

mommy of:

Guinevere 5/28/00 (no CF)

on 4/12/02 (no CF)

Ava Ireland 8/4/04 (right CF)

[Guest guest]

I would email Dr. Ponseti and let him know your circumstance and also tell

him your doctor is coming to Iowa this week. Maybe Dr. P can give your

doctor some pointers for your situation directly? Maybe your doctor and

DR. P can work together and come up with what is best for your daughter.

I also have never heard of the DAFO's. We had the AFO's and relapsed with

them. If his relapse percentage is 50%, you would think he would consider

the DBB. In what way were they not working for him? Do you know?

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

,

Is your baby out of casts waiting for the DAFO to be made for her? A lot of

your letter worries me. There is only " ONE " Ponseti-Method. Your doctor is

doing things differently and losing 40% of his correction by changing things

around. He is not using the Ponseti Method, he's using his method which is not

Ponseti's.

If your doctor is not having success with the DBB it's either a) he is not

getting the feet corrected before applying it, or he is not stressing to

parents how important it is to follow a very strick regeim in wearing it.

You should be worried. Other types of braces have been used, none of them give

the results the DBB gives.

All of us here know you want to hold a " normal " baby with " Normal " shoes but the

things is, we have club footed babies who have to wear special shoes (the DBB).

I cannot stress to you enough the importance of the DBB and following the hourly

schedule for these next few years......23/7 for about three months, then 18

hours till they stand/cruise/walk, then reduce to 16 and later, much later,

down to 12 hours until they are 3 to 4 years old. Sounds like a lot - but

trust me it's worth it. If you baby is out of casts waiting for a DAFO your

baby is losing major correction (if she had full correction at all, which I'm

sort of doubting here).

Sorry to rain on your parade but I bet others here agree.

s.

More questions...

Here's the thing...my doc uses Ponsetti's casting

method, but not the DBB. He's prescribed a DAFO for my daughter. I

tried doing some research because I had asked here before about the

AFO & KAFO, but I never heard of a DAFO (Dynamic Ankle-Foot

Orthodic). I can't completely understand it's function from what I

read online, but from the pic I found, it looks VERY different from

the AFOs & KAFOs. I'm EXTREMELY confused and VERY NERVOUS...I very

much trust my doc, and I've questioned him before about the Ponsetti

method, because he does certain things differently. He is actually

in close contact with Dr. Ponsetti & is going to Iowa next week to

meet with him. The reason he prescribed the DAFO is because he said

he can't get the DBB to work, he's had alot of trouble with it, blah

blah blah & that's why he's going to Iowa next week. But he also

said their relapse rate is around 50%, as opposed to Dr. P's 10% or

so. I was hoping someone knew something about the DAFO & could help

me understand it before I meet with the orthodist or whatever

they're called to get her fitted. Please help! I can't exactly

express my confusion in words, but I'm sure everyone understands. I

feel like I've been strong about the whole process so far...but now

I see her kicking her little legs & wiggling her toes and I'm

feeling resentful. I don't want her to have to wear a brace or bar

or shoes or whatever! I just want to put cute little shoes on her

like I did my other two and watch her learn to pull her feet up &

suck on her toes....not go back to the stiff little leg that's hard

to hold. I don't know what I'm saying, but like I said I'm sure you

all understand the feelings I'm having. I absolutely know that

bracing is essential, so don't lecture me!! I'm just letting off

steam!! :-)

Thanks,

mommy of:

Guinevere 5/28/00 (no CF)

on 4/12/02 (no CF)

Ava Ireland 8/4/04 (right CF)

[Guest guest]

Hi,

My son, , used both AFOs and DAFOs. If I had to choose between

the two, I like the DAFOs much better because they were easier to

put on. However, both are very similar. The nice thing about the

braces is that it's a clear plastic so you can tell if the heal is

down all the way. As for buying shoes, you can still do that.

Stride Rite makes shoes that fit over braces.

I do want to add that the AFOs, DAFOs and clam shell braces

constantly slipped off of 's feet. We were seeing a doctor who

casted, did a release then uses AFOs. Since none of the braces ever

stayed on his feet, he lost correction and we have to start all

over. is now 16 months old and is being casted again, is

going to have to have another tenotomy and then go to the DBB.

I don't want to say not to use the AFOs, DAFOs etc. Just because it

didn't work for my son doesn't mean it won't work for your child. I

was told that was an unusual circumstance. We finally found

the Markell shoes which don't come off of his feet. However, we

found the shoes too late. We are now seeing another doctor who only

uses the Ponseti method. However, be cautious and keep questioning

the doctor...there's nothing wrong with that. If you have any

questions, don't hesitate to ask.

Thanks,

Proud Mom to -15 months old, microcephaly, bilateral ptosis

(repaired 1/04), GERD (and associated eating challenges), bilateral

club feet, left kidney: hydronephrosis due to Grade V reflux, right

kidney: low functioning due to cysts on upper 20%, undescended

testes (corrected 9/04), milk allergy, low muscle tone, global

delays.

[Guest guest]

I wanted to mention one more thing. We noticed that 's feet

would still turn in with the braces. The braces only seemed to hold

his feet into a neutral position but it didn't help with the

allignment of his feet with his knee. If we would turn his feet so

that they were pointing straight out, his knees would bow out.

Anyhow, I don't know if this is because 's feet were not 100%

corrected or not but you might want to address your concerns with

your doctor.

Thanks,

>

> Hi,

> My son, , used both AFOs and DAFOs. If I had to choose

between

> the two, I like the DAFOs much better because they were easier to

> put on. However, both are very similar. The nice thing about the

> braces is that it's a clear plastic so you can tell if the heal is

> down all the way. As for buying shoes, you can still do that.

> Stride Rite makes shoes that fit over braces.

> I do want to add that the AFOs, DAFOs and clam shell braces

> constantly slipped off of 's feet. We were seeing a doctor

who

> casted, did a release then uses AFOs. Since none of the braces

ever

> stayed on his feet, he lost correction and we have to start all

> over. is now 16 months old and is being casted again, is

> going to have to have another tenotomy and then go to the DBB.

> I don't want to say not to use the AFOs, DAFOs etc. Just because

it

> didn't work for my son doesn't mean it won't work for your child.

I

> was told that was an unusual circumstance. We finally found

> the Markell shoes which don't come off of his feet. However, we

> found the shoes too late. We are now seeing another doctor who

only

> uses the Ponseti method. However, be cautious and keep

questioning

> the doctor...there's nothing wrong with that. If you have any

> questions, don't hesitate to ask.

> Thanks,

> Proud Mom to -15 months old, microcephaly, bilateral ptosis

> (repaired 1/04), GERD (and associated eating challenges),

bilateral

> club feet, left kidney: hydronephrosis due to Grade V reflux,

right

> kidney: low functioning due to cysts on upper 20%, undescended

> testes (corrected 9/04), milk allergy, low muscle tone, global

> delays.

[Guest guest]

I wanted to mention one more thing. We noticed that 's feet

would still turn in with the braces. The braces only seemed to hold

his feet into a neutral position but it didn't help with the

allignment of his feet with his knee. If we would turn his feet so

that they were pointing straight out, his knees would bow out.

Anyhow, I don't know if this is because 's feet were not 100%

corrected or not but you might want to address your concerns with

your doctor.

Thanks,

>

> Hi,

> My son, , used both AFOs and DAFOs. If I had to choose

between

> the two, I like the DAFOs much better because they were easier to

> put on. However, both are very similar. The nice thing about the

> braces is that it's a clear plastic so you can tell if the heal is

> down all the way. As for buying shoes, you can still do that.

> Stride Rite makes shoes that fit over braces.

> I do want to add that the AFOs, DAFOs and clam shell braces

> constantly slipped off of 's feet. We were seeing a doctor

who

> casted, did a release then uses AFOs. Since none of the braces

ever

> stayed on his feet, he lost correction and we have to start all

> over. is now 16 months old and is being casted again, is

> going to have to have another tenotomy and then go to the DBB.

> I don't want to say not to use the AFOs, DAFOs etc. Just because

it

> didn't work for my son doesn't mean it won't work for your child.

I

> was told that was an unusual circumstance. We finally found

> the Markell shoes which don't come off of his feet. However, we

> found the shoes too late. We are now seeing another doctor who

only

> uses the Ponseti method. However, be cautious and keep

questioning

> the doctor...there's nothing wrong with that. If you have any

> questions, don't hesitate to ask.

> Thanks,

> Proud Mom to -15 months old, microcephaly, bilateral ptosis

> (repaired 1/04), GERD (and associated eating challenges),

bilateral

> club feet, left kidney: hydronephrosis due to Grade V reflux,

right

> kidney: low functioning due to cysts on upper 20%, undescended

> testes (corrected 9/04), milk allergy, low muscle tone, global

> delays.

[Guest guest]

Unusual case or not, the deal with the AFO or DAFO is there is no bar - thus

they do not hold the feet where the feet need to be held in order to maintain

correction. .... Now you are starting from scratch again. My oldest used the

AFO's for 18 months and ended up worse than he began with. There is a reason

Dr. Ponseti uses DBB's - and a reason his success rate is nearly 100%. I've

gone both routes with two children here - believe me, stick to the DBB!

s.

Hi,

My son, , used both AFOs and DAFOs. If I had to choose between

the two, I like the DAFOs much better because they were easier to

put on. However, both are very similar. The nice thing about the

braces is that it's a clear plastic so you can tell if the heal is

down all the way. As for buying shoes, you can still do that.

Stride Rite makes shoes that fit over braces.

I do want to add that the AFOs, DAFOs and clam shell braces

constantly slipped off of 's feet. We were seeing a doctor who

casted, did a release then uses AFOs. Since none of the braces ever

stayed on his feet, he lost correction and we have to start all

over. is now 16 months old and is being casted again, is

going to have to have another tenotomy and then go to the DBB.

I don't want to say not to use the AFOs, DAFOs etc. Just because it

didn't work for my son doesn't mean it won't work for your child. I

was told that was an unusual circumstance. We finally found

the Markell shoes which don't come off of his feet. However, we

found the shoes too late. We are now seeing another doctor who only

uses the Ponseti method. However, be cautious and keep questioning

the doctor...there's nothing wrong with that. If you have any

questions, don't hesitate to ask.

Thanks,

Proud Mom to -15 months old, microcephaly, bilateral ptosis

(repaired 1/04), GERD (and associated eating challenges), bilateral

club feet, left kidney: hydronephrosis due to Grade V reflux, right

kidney: low functioning due to cysts on upper 20%, undescended

testes (corrected 9/04), milk allergy, low muscle tone, global

delays.

[Guest guest]

,

No, that wasn't in reference to you- there was an orthotist who

posted prior to you coming to the board about having a DKAFO in place

of casts. It was a coincidence that you came on shortly afterward

and posted something similar.

> were you guys talking about me working on replacing or

> revising the bar stuff? cuz we are definitely keeping

> the bar, although we may have new attatchments (quick

> release) for the shoes or an afo, designing is still

> in process.

>