New to the group

[Guest guest]

DeeDee, You are describing what I call the Zing! Zap! Zoomers!, and what my late father called,

"Aunt Agatha's Traveling Pains". Yeah, it's pretty common to have peripheral neuropathy with Lupus

and many other autoimmune diseases, such as Diabetes, Fibromyalgia, and when you have brain

involvement. However, there are medications which can help, and also homeopathic remedies which

also can help. Neurontin and Topomax are commonly prescribed for peripheral neuropathy.

Herbal foot baths, warm medicinal wax treatments, and massage can also be helpful. When my pains

are especially bad, I am helped by taking prescription strength Allegra. It not only helps with this

type of pain, but also does a great job on the under the skin itching to which we are susceptible.

Hope this is helpful information. Hugs, MM

[Guest guest]

DeeDee, You are describing what I call the Zing! Zap! Zoomers!, and what my late father called,

"Aunt Agatha's Traveling Pains". Yeah, it's pretty common to have peripheral neuropathy with Lupus

and many other autoimmune diseases, such as Diabetes, Fibromyalgia, and when you have brain

involvement. However, there are medications which can help, and also homeopathic remedies which

also can help. Neurontin and Topomax are commonly prescribed for peripheral neuropathy.

Herbal foot baths, warm medicinal wax treatments, and massage can also be helpful. When my pains

are especially bad, I am helped by taking prescription strength Allegra. It not only helps with this

type of pain, but also does a great job on the under the skin itching to which we are susceptible.

Hope this is helpful information. Hugs, MM

[Guest guest]

DeeDee, Ten years on the same med, huh? I have only managed to stick with a few meds that long.

Part of this disease is that you can develop sensitivies over night to things you have used for years.

You can also develop a tolerance level that makes the drugs much less effective than they need to

be. So, it would be wise to check and see if there is a drug that will do what's needed without inter-

fering with your circulation. Seems sort of like a self-defeating drug, doesn't it? Good luck, and keep

us posted on how you are doing. Hugs, MM

[Guest guest]

DeeDee, Ten years on the same med, huh? I have only managed to stick with a few meds that long.

Part of this disease is that you can develop sensitivies over night to things you have used for years.

You can also develop a tolerance level that makes the drugs much less effective than they need to

be. So, it would be wise to check and see if there is a drug that will do what's needed without inter-

fering with your circulation. Seems sort of like a self-defeating drug, doesn't it? Good luck, and keep

us posted on how you are doing. Hugs, MM

[Guest guest]

DeeDee, Ten years on the same med, huh? I have only managed to stick with a few meds that long.

Part of this disease is that you can develop sensitivies over night to things you have used for years.

You can also develop a tolerance level that makes the drugs much less effective than they need to

be. So, it would be wise to check and see if there is a drug that will do what's needed without inter-

fering with your circulation. Seems sort of like a self-defeating drug, doesn't it? Good luck, and keep

us posted on how you are doing. Hugs, MM

[Guest guest]

> DeeDee, You are describing what I call the Zing! Zap! Zoomers!

HI MM,

Thanks so much for the info. I have felt like I am loosing my

mind. The tingling is so aggrevating at times that I can't stand

it. It is especially bad at night when I go to bed. I do have an

appointment next week with my GP. I am on a blood pressure

medication that reduces blood flow to my extremeties, so I am sure

that doesn't help. The only thing is I have taken the same

medication for at least 10 years.

It'll be interesting to see what the doc says.

DeeDee

[Guest guest]

> DeeDee, You are describing what I call the Zing! Zap! Zoomers!

HI MM,

Thanks so much for the info. I have felt like I am loosing my

mind. The tingling is so aggrevating at times that I can't stand

it. It is especially bad at night when I go to bed. I do have an

appointment next week with my GP. I am on a blood pressure

medication that reduces blood flow to my extremeties, so I am sure

that doesn't help. The only thing is I have taken the same

medication for at least 10 years.

It'll be interesting to see what the doc says.

DeeDee

[Guest guest]

Hi DeeDee, Well pins and needles can be related to a variety of things. I get this as well, and for me it is due more than likely to my hypothyroidism. I was also diagnosed with Fibromyalgia.

Welcome to our family here. My name is a, I am 33 years old, and live in northern cali. I have been diagnosed with Fibromyalgia, hypothyroid, and raynauds. Origionally they had diagnosed me with Lupus for 1 1/2 years. I have a 3 year old daughter, and go to college full-time. I am also one of the moderators here.

God Bless, love and hugs, a

deedee1258 wrote:

HI, I AM NEW TO THE SUPPORT GROUP AND I AM NOT SURE WHAT TO DO TO CONTACT OTHERS. I AM A 46 YEAR OLD MOTHER OF 3 AND I LIVE IN NH. AFTER DEALING WITH ITP FOR 10 YEARS, I RECEIVED A DIAGNOSIS OF LUPUS IN AUGUST, 2001. THIS DIAGNOSIS CAME AFTER A SPLENECTOMY IN JANUARY, 2001. I HAVE LOTS OF QUESTIONS. RIGHT NOW I CONSTANTLY HAVE PINS AND NEEDLES IN MY FEET AND HANDS. IS THIS SOMETHING THAT ANYONE ELSE HAS? OR IS THIS TOTALLY UNRELATED TO THE LUPUS??THANKS,DEEDEE"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow

Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Hi DeeDee, Well pins and needles can be related to a variety of things. I get this as well, and for me it is due more than likely to my hypothyroidism. I was also diagnosed with Fibromyalgia.

Welcome to our family here. My name is a, I am 33 years old, and live in northern cali. I have been diagnosed with Fibromyalgia, hypothyroid, and raynauds. Origionally they had diagnosed me with Lupus for 1 1/2 years. I have a 3 year old daughter, and go to college full-time. I am also one of the moderators here.

God Bless, love and hugs, a

deedee1258 wrote:

HI, I AM NEW TO THE SUPPORT GROUP AND I AM NOT SURE WHAT TO DO TO CONTACT OTHERS. I AM A 46 YEAR OLD MOTHER OF 3 AND I LIVE IN NH. AFTER DEALING WITH ITP FOR 10 YEARS, I RECEIVED A DIAGNOSIS OF LUPUS IN AUGUST, 2001. THIS DIAGNOSIS CAME AFTER A SPLENECTOMY IN JANUARY, 2001. I HAVE LOTS OF QUESTIONS. RIGHT NOW I CONSTANTLY HAVE PINS AND NEEDLES IN MY FEET AND HANDS. IS THIS SOMETHING THAT ANYONE ELSE HAS? OR IS THIS TOTALLY UNRELATED TO THE LUPUS??THANKS,DEEDEE"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow

Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Hi DeeDee, Well pins and needles can be related to a variety of things. I get this as well, and for me it is due more than likely to my hypothyroidism. I was also diagnosed with Fibromyalgia.

Welcome to our family here. My name is a, I am 33 years old, and live in northern cali. I have been diagnosed with Fibromyalgia, hypothyroid, and raynauds. Origionally they had diagnosed me with Lupus for 1 1/2 years. I have a 3 year old daughter, and go to college full-time. I am also one of the moderators here.

God Bless, love and hugs, a

deedee1258 wrote:

HI, I AM NEW TO THE SUPPORT GROUP AND I AM NOT SURE WHAT TO DO TO CONTACT OTHERS. I AM A 46 YEAR OLD MOTHER OF 3 AND I LIVE IN NH. AFTER DEALING WITH ITP FOR 10 YEARS, I RECEIVED A DIAGNOSIS OF LUPUS IN AUGUST, 2001. THIS DIAGNOSIS CAME AFTER A SPLENECTOMY IN JANUARY, 2001. I HAVE LOTS OF QUESTIONS. RIGHT NOW I CONSTANTLY HAVE PINS AND NEEDLES IN MY FEET AND HANDS. IS THIS SOMETHING THAT ANYONE ELSE HAS? OR IS THIS TOTALLY UNRELATED TO THE LUPUS??THANKS,DEEDEE"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow

Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Welcome Missy

Try not to worry too much, I don't think the shoes are the worst part of

it and they are not a problem for the majority of children. flew

back from Iowa to South Africa with casts on, we removed them ourselves

3 weeks later and put his shoes on. It took him a couple of days to get

used to wearing them, mainly because he had to learn to move both legs

in tandem, instead of wiggling them about all over the place like babies

like to do. But we've had no issues at all and I think that almost 90%

of people polled in this group said the same. Which doctor are you

with?

If there is anything you're worried about when you start with the shoes,

the people in this group has loads of useful advice.

I did a website for South African parents, and there's a section there

on 'hints and tips'. www.clubfoot.co.za

Hope this helps

and

24 Jan 2003,

www.clubfoot.co.za

new to the group

My name is Missy and I have a six week old son with club feet. He

started with the Ponseti method when he was two weeks old. He is

having the tenotomy done on 10/29 and then to the shoes. I've seen a

lot of posts about the shoes and I'm already starting to get

nervous. Everyone I've talked to said that the shoes are the hardest

part.

Any suggestions?

[Guest guest]

Welcome Missy

Try not to worry too much, I don't think the shoes are the worst part of

it and they are not a problem for the majority of children. flew

back from Iowa to South Africa with casts on, we removed them ourselves

3 weeks later and put his shoes on. It took him a couple of days to get

used to wearing them, mainly because he had to learn to move both legs

in tandem, instead of wiggling them about all over the place like babies

like to do. But we've had no issues at all and I think that almost 90%

of people polled in this group said the same. Which doctor are you

with?

If there is anything you're worried about when you start with the shoes,

the people in this group has loads of useful advice.

I did a website for South African parents, and there's a section there

on 'hints and tips'. www.clubfoot.co.za

Hope this helps

and

24 Jan 2003,

www.clubfoot.co.za

new to the group

My name is Missy and I have a six week old son with club feet. He

started with the Ponseti method when he was two weeks old. He is

having the tenotomy done on 10/29 and then to the shoes. I've seen a

lot of posts about the shoes and I'm already starting to get

nervous. Everyone I've talked to said that the shoes are the hardest

part.

Any suggestions?

[Guest guest]

Hi Missy and welcome to this group!

To make the transition as smooth as possible, make sure that your

baby is put into the FAB right after the casts are removed. There is

more of a tendency to fight and resist FAB wear with babies who have

had a " taste " of mobility/freedom between casting and FAB use.

You may want to use a couple of pairs of socks at the beginning in

case the feet are tender. Many parents on this list have found that

cotton socks with grippers on the bottoms (like those found at the

Gap)work best to keep baby's feet from slipping in the shoes.

Stock up on sleepers/outfits that open up all the way up the legs and

the ankles - they can be put on or removed over the head. At the

beginning, it's important that your baby wear the FAB for the

prescribed 23 hours per day so you don't want to have to remove the

FAB and put it back on for outfit changes other than the 1 hour at

bathtime.

Also, you want to be sure that the FAB is set up correctly - being

prepared ahead of time will definitely ease the transition.

You can go to the files section here and click on the " Bracing file,

FAB (DBB) " tab, then click on " Articles from Hall " which

will lead to the appropriate files for the correct set up of the FAB

(previously called the DBB).

Don't hesitate to ask your questions here as they arise!

Good luck!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

PS- What is your baby's name?

>

>

> My name is Missy and I have a six week old son with club feet. He

> started with the Ponseti method when he was two weeks old. He is

> having the tenotomy done on 10/29 and then to the shoes. I've seen

a

> lot of posts about the shoes and I'm already starting to get

> nervous. Everyone I've talked to said that the shoes are the

hardest

> part.

>

> Any suggestions?

[Guest guest]

Hi Missy and welcome to this group!

To make the transition as smooth as possible, make sure that your

baby is put into the FAB right after the casts are removed. There is

more of a tendency to fight and resist FAB wear with babies who have

had a " taste " of mobility/freedom between casting and FAB use.

You may want to use a couple of pairs of socks at the beginning in

case the feet are tender. Many parents on this list have found that

cotton socks with grippers on the bottoms (like those found at the

Gap)work best to keep baby's feet from slipping in the shoes.

Stock up on sleepers/outfits that open up all the way up the legs and

the ankles - they can be put on or removed over the head. At the

beginning, it's important that your baby wear the FAB for the

prescribed 23 hours per day so you don't want to have to remove the

FAB and put it back on for outfit changes other than the 1 hour at

bathtime.

Also, you want to be sure that the FAB is set up correctly - being

prepared ahead of time will definitely ease the transition.

You can go to the files section here and click on the " Bracing file,

FAB (DBB) " tab, then click on " Articles from Hall " which

will lead to the appropriate files for the correct set up of the FAB

(previously called the DBB).

Don't hesitate to ask your questions here as they arise!

Good luck!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

PS- What is your baby's name?

>

>

> My name is Missy and I have a six week old son with club feet. He

> started with the Ponseti method when he was two weeks old. He is

> having the tenotomy done on 10/29 and then to the shoes. I've seen

a

> lot of posts about the shoes and I'm already starting to get

> nervous. Everyone I've talked to said that the shoes are the

hardest

> part.

>

> Any suggestions?

[Guest guest]

Missy,

Welcome to the board and congrats on your baby boy! Please keep in

mind that there are *many* more people who don't have any problems

with the brace at all compared to those who do encounter major

problems, but because this is a " support board " you will see people

posting looking for help with issues and not so many posts saying " we

have no issues to report " ! If you look in the polls section, you'll

see that the majority of people who voted in the poll asking how long

it took their child to adjust to the brace answered that they had no

problems or 1-2 days of adjustment. What doctor are you currently

seeing? I firmly believe that if you are seeing a doctor who is

completely dedicated to doing the Ponseti method correctly (without

variation) and if that doctor is working closely with the orthotist,

then the odds of having issues with the brace are pretty slim. Below

I'll re-post something that I posted here a while ago, I hope it will

help ease your anxieties. Please let us know if you have any

questions/issues!

Regards,

& (3-16-00)

left clubfoot

Here's my old post:

As a 4 year veteran of various clubfoot support boards and the

Ponseti method, I'm going to attempt to type some of my

personal " OBSERVATIONS " and things I've picked up along the way

pertaining to the foot abduction brace (also known as DBB)- please

don't flame me or get upset with any of the text below- just take it

or leave it (or parts thereof) if it pertains to your child's

situation.

1) Almost all families who have posted on the internet about major

issues with the brace are working with doctors who are new to the

method, who are modifying or only using parts of the method, or

orthotists who are not setting up the brace properly. Very rarely,

if ever, have I heard of families who have severe or chronic issues

with the brace when they are treated by the U of Iowa staff and

American Prosthetics & Orthotics in Iowa City. Bracing seems to be a

non-issue for the families who are in experienced hands, where

bracing can be a nightmare for families who are not working with

experienced staff. An exception would be children with a-typical

clubfeet where the regular straight last shoe could cause issues

regardless- but the new sandals seem to have helped this

group of children also; it will just take some time for doctors to

get experience in diagnosing these cases.

2) The child's foot **must** be completely corrected in order to wear

the brace comfortably. It seems that some doctors (even those with

good reputations and experience) can " think " the child's foot is

corrected, when, in fact, it is not. There cannot be an attitude

of " this is as good as this foot is going to get- let's try the brace

and hope that we can maintain it (or improve it) " . If your doctor is

new to the Ponseti method, is modifying the method, or if you're just

not 100% confident that the foot is corrected, you should consider

seeking a second, third, or fourth opinion on the foot/feet. Even

pictures or video sent to a doctor can help in diagnosing uncorrected

feet or problem areas, though a physical examination is really the

best.

3) The FAB must be set up correctly for the child to be comfortable.

The shoe can be a straight last shoe, reverse last shoe, regular high-

top shoe glued to a board, or sandal........but

the " standard " at this time is the Markell straight last shoe. The

inside edges of the heels of the shoes should be set at a distance

equal to the width of the child's shoulders. The shoe for a clubfoot

should be set at an outward rotation of 70 degrees for a straight

last shoe (less for reverse last shoe), but the parent

must ensure that the last cast that was applied also rotated the foot

outward to this angle. If the foot wasn't casted at that angle, then

it won't be comfortable in the brace at that angle. A non-clubfoot

should be set at 25-45 degrees. There is a slight bend in the bar to

facilitate

the front of the foot flexing upward on the clubfoot. We have heard

of cases of orthotists setting up the brace wrong- even when the

doctor has given correct instructions.

4) The FAB is the preferred brace because of it's success in

preventing relapse. The brace keeps the foot rotated outward and the

forefoot pointed upward to maintain the correction. The AFO and

Wheaton brace cannot maintain the outward rotation. The KAFO is not

preferred due to the potential of causing muscle atrophy in the calf

since the knee is tied in with the foot/ankle.

5) Unfortunately, there's no " guideline " or prediction about how well

your child will adjust to the brace- however, some things to keep in

mind are: the foot/leg will most likely be sensitive to the touch and

muscles will be sore when the last cast is removed, the foot may

also be swollen when the last cast is removed, red marks are okay but

they should fade within a half hour of the shoe being removed,

movement between the shoe and foot is what causes blisters, you can

punch more holes in the strap as the leather stretches, saddlesoap

can be used to soften the shoe leather, sometimes a custom foam

(plastizode) insert is used to keep the heel down, the foot should be

flat in the shoe before strapping/lacing up, be on-guard for blisters

and pressure sores and deal with them immediately. Teach the child

how to kick their legs in unison when wearing the brace.

I guess what I'm trying to stress is that if everything is " right " ,

the child shouldn't have any major problems with the brace, and the

brace should never cause pain. It's just unfortunate that many

parents have to struggle to get things " right " and they may end up

being more educated than the orthotists and doctors they're working

with. Bracing is crucial to prevent relapse, and it's in the child's

best interest for the parent to persevere in their attempts to get

everything on track. We've had many families come to this board in

desparation, barely clinging to their sanity, but after some

troubleshooting (addressing both minor and major issues) they got

their bracing issues resolved and their life back to " normal " .

To all the new families- please ask questions- and feel free to

search the archives using key words in your search (you have to keep

hitting the next button to scroll through the posts one section at a

time), the files, photos, and links sections.....

I hope this is useful to some.....I feel fortunate that my daughter

had zero issues with the brace, we were prepared for the worst

(tolerance-wise) since she first wore it at the *mature* age of 5

months old! I feel for the families who have struggled and continue

to struggle to get the brace right for their child- I hope this board

can continue to help them diagnose problems and get the support they

need. I know this is a major issue, because it never goes away or

dies down as a topic on our board- it's a constant problem that we

see with so many new families.

[Guest guest]

Missy,

Welcome to the board and congrats on your baby boy! Please keep in

mind that there are *many* more people who don't have any problems

with the brace at all compared to those who do encounter major

problems, but because this is a " support board " you will see people

posting looking for help with issues and not so many posts saying " we

have no issues to report " ! If you look in the polls section, you'll

see that the majority of people who voted in the poll asking how long

it took their child to adjust to the brace answered that they had no

problems or 1-2 days of adjustment. What doctor are you currently

seeing? I firmly believe that if you are seeing a doctor who is

completely dedicated to doing the Ponseti method correctly (without

variation) and if that doctor is working closely with the orthotist,

then the odds of having issues with the brace are pretty slim. Below

I'll re-post something that I posted here a while ago, I hope it will

help ease your anxieties. Please let us know if you have any

questions/issues!

Regards,

& (3-16-00)

left clubfoot

Here's my old post:

As a 4 year veteran of various clubfoot support boards and the

Ponseti method, I'm going to attempt to type some of my

personal " OBSERVATIONS " and things I've picked up along the way

pertaining to the foot abduction brace (also known as DBB)- please

don't flame me or get upset with any of the text below- just take it

or leave it (or parts thereof) if it pertains to your child's

situation.

1) Almost all families who have posted on the internet about major

issues with the brace are working with doctors who are new to the

method, who are modifying or only using parts of the method, or

orthotists who are not setting up the brace properly. Very rarely,

if ever, have I heard of families who have severe or chronic issues

with the brace when they are treated by the U of Iowa staff and

American Prosthetics & Orthotics in Iowa City. Bracing seems to be a

non-issue for the families who are in experienced hands, where

bracing can be a nightmare for families who are not working with

experienced staff. An exception would be children with a-typical

clubfeet where the regular straight last shoe could cause issues

regardless- but the new sandals seem to have helped this

group of children also; it will just take some time for doctors to

get experience in diagnosing these cases.

2) The child's foot **must** be completely corrected in order to wear

the brace comfortably. It seems that some doctors (even those with

good reputations and experience) can " think " the child's foot is

corrected, when, in fact, it is not. There cannot be an attitude

of " this is as good as this foot is going to get- let's try the brace

and hope that we can maintain it (or improve it) " . If your doctor is

new to the Ponseti method, is modifying the method, or if you're just

not 100% confident that the foot is corrected, you should consider

seeking a second, third, or fourth opinion on the foot/feet. Even

pictures or video sent to a doctor can help in diagnosing uncorrected

feet or problem areas, though a physical examination is really the

best.

3) The FAB must be set up correctly for the child to be comfortable.

The shoe can be a straight last shoe, reverse last shoe, regular high-

top shoe glued to a board, or sandal........but

the " standard " at this time is the Markell straight last shoe. The

inside edges of the heels of the shoes should be set at a distance

equal to the width of the child's shoulders. The shoe for a clubfoot

should be set at an outward rotation of 70 degrees for a straight

last shoe (less for reverse last shoe), but the parent

must ensure that the last cast that was applied also rotated the foot

outward to this angle. If the foot wasn't casted at that angle, then

it won't be comfortable in the brace at that angle. A non-clubfoot

should be set at 25-45 degrees. There is a slight bend in the bar to

facilitate

the front of the foot flexing upward on the clubfoot. We have heard

of cases of orthotists setting up the brace wrong- even when the

doctor has given correct instructions.

4) The FAB is the preferred brace because of it's success in

preventing relapse. The brace keeps the foot rotated outward and the

forefoot pointed upward to maintain the correction. The AFO and

Wheaton brace cannot maintain the outward rotation. The KAFO is not

preferred due to the potential of causing muscle atrophy in the calf

since the knee is tied in with the foot/ankle.

5) Unfortunately, there's no " guideline " or prediction about how well

your child will adjust to the brace- however, some things to keep in

mind are: the foot/leg will most likely be sensitive to the touch and

muscles will be sore when the last cast is removed, the foot may

also be swollen when the last cast is removed, red marks are okay but

they should fade within a half hour of the shoe being removed,

movement between the shoe and foot is what causes blisters, you can

punch more holes in the strap as the leather stretches, saddlesoap

can be used to soften the shoe leather, sometimes a custom foam

(plastizode) insert is used to keep the heel down, the foot should be

flat in the shoe before strapping/lacing up, be on-guard for blisters

and pressure sores and deal with them immediately. Teach the child

how to kick their legs in unison when wearing the brace.

I guess what I'm trying to stress is that if everything is " right " ,

the child shouldn't have any major problems with the brace, and the

brace should never cause pain. It's just unfortunate that many

parents have to struggle to get things " right " and they may end up

being more educated than the orthotists and doctors they're working

with. Bracing is crucial to prevent relapse, and it's in the child's

best interest for the parent to persevere in their attempts to get

everything on track. We've had many families come to this board in

desparation, barely clinging to their sanity, but after some

troubleshooting (addressing both minor and major issues) they got

their bracing issues resolved and their life back to " normal " .

To all the new families- please ask questions- and feel free to

search the archives using key words in your search (you have to keep

hitting the next button to scroll through the posts one section at a

time), the files, photos, and links sections.....

I hope this is useful to some.....I feel fortunate that my daughter

had zero issues with the brace, we were prepared for the worst

(tolerance-wise) since she first wore it at the *mature* age of 5

months old! I feel for the families who have struggled and continue

to struggle to get the brace right for their child- I hope this board

can continue to help them diagnose problems and get the support they

need. I know this is a major issue, because it never goes away or

dies down as a topic on our board- it's a constant problem that we

see with so many new families.

[Guest guest]

Thank you for the advice!!!!! I'm already excited I found this

message board. My son's name is Nate and will be six weeks tomorrow.

I've just starting buying some of the outfits that are open at the

bottom and button all of the way up. How are cotton pants? Is that

more of a pain because they don't button?

I know I will have tons of questions once the casts have been

removed and we move to the shoes, but please let me know if there is

anything else I should prepare for. Or, if there are certain

questions I should be asking our doctor as it gets closer.

Thanks again,

Missy

> >

> >

> > My name is Missy and I have a six week old son with club feet.

He

> > started with the Ponseti method when he was two weeks old. He is

> > having the tenotomy done on 10/29 and then to the shoes. I've

seen

> a

> > lot of posts about the shoes and I'm already starting to get

> > nervous. Everyone I've talked to said that the shoes are the

> hardest

> > part.

> >

> > Any suggestions?

[Guest guest]

Hi ,

We are seeing Dr. Westberry in Greenville, SC. We got kind of lucky

that he was the only dr that our insurance would cover us on and

then we found out that he was one of two drs in SC that was trained

on the Ponseti method. From everything I read so far, he seems to be

following everything exactly how he should. I try to ask a lot of

questions and I've tried to read everything I can so that I know

what to look for, but there always seems to be more.

Thanks for the input so far. I know I'll have a lot more questions

in the upcoming weeks.

Missy

>

> Missy,

> Welcome to the board and congrats on your baby boy! Please keep

in

> mind that there are *many* more people who don't have any problems

> with the brace at all compared to those who do encounter major

> problems, but because this is a " support board " you will see

people

> posting looking for help with issues and not so many posts

saying " we

> have no issues to report " ! If you look in the polls section,

you'll

> see that the majority of people who voted in the poll asking how

long

> it took their child to adjust to the brace answered that they had

no

> problems or 1-2 days of adjustment. What doctor are you currently

> seeing? I firmly believe that if you are seeing a doctor who is

> completely dedicated to doing the Ponseti method correctly

(without

> variation) and if that doctor is working closely with the

orthotist,

> then the odds of having issues with the brace are pretty slim.

Below

> I'll re-post something that I posted here a while ago, I hope it

will

> help ease your anxieties. Please let us know if you have any

> questions/issues!

> Regards,

> & (3-16-00)

> left clubfoot

>

> Here's my old post:

> As a 4 year veteran of various clubfoot support boards and the

> Ponseti method, I'm going to attempt to type some of my

> personal " OBSERVATIONS " and things I've picked up along the way

> pertaining to the foot abduction brace (also known as DBB)- please

> don't flame me or get upset with any of the text below- just take

it

> or leave it (or parts thereof) if it pertains to your child's

> situation.

>

> 1) Almost all families who have posted on the internet about major

> issues with the brace are working with doctors who are new to the

> method, who are modifying or only using parts of the method, or

> orthotists who are not setting up the brace properly. Very rarely,

> if ever, have I heard of families who have severe or chronic issues

> with the brace when they are treated by the U of Iowa staff and

> American Prosthetics & Orthotics in Iowa City. Bracing seems to be

a

> non-issue for the families who are in experienced hands, where

> bracing can be a nightmare for families who are not working with

> experienced staff. An exception would be children with a-typical

> clubfeet where the regular straight last shoe could cause issues

> regardless- but the new sandals seem to have helped this

> group of children also; it will just take some time for doctors to

> get experience in diagnosing these cases.

>

> 2) The child's foot **must** be completely corrected in order to

wear

> the brace comfortably. It seems that some doctors (even those with

> good reputations and experience) can " think " the child's foot is

> corrected, when, in fact, it is not. There cannot be an attitude

> of " this is as good as this foot is going to get- let's try the

brace

> and hope that we can maintain it (or improve it) " . If your doctor

is

> new to the Ponseti method, is modifying the method, or if you're

just

> not 100% confident that the foot is corrected, you should consider

> seeking a second, third, or fourth opinion on the foot/feet. Even

> pictures or video sent to a doctor can help in diagnosing

uncorrected

> feet or problem areas, though a physical examination is really the

> best.

>

> 3) The FAB must be set up correctly for the child to be

comfortable.

> The shoe can be a straight last shoe, reverse last shoe, regular

high-

> top shoe glued to a board, or sandal........but

> the " standard " at this time is the Markell straight last shoe. The

> inside edges of the heels of the shoes should be set at a distance

> equal to the width of the child's shoulders. The shoe for a

clubfoot

> should be set at an outward rotation of 70 degrees for a straight

> last shoe (less for reverse last shoe), but the parent

> must ensure that the last cast that was applied also rotated the

foot

> outward to this angle. If the foot wasn't casted at that angle,

then

> it won't be comfortable in the brace at that angle. A non-clubfoot

> should be set at 25-45 degrees. There is a slight bend in the bar

to

> facilitate

> the front of the foot flexing upward on the clubfoot. We have heard

> of cases of orthotists setting up the brace wrong- even when the

> doctor has given correct instructions.

>

> 4) The FAB is the preferred brace because of it's success in

> preventing relapse. The brace keeps the foot rotated outward and

the

> forefoot pointed upward to maintain the correction. The AFO and

> Wheaton brace cannot maintain the outward rotation. The KAFO is not

> preferred due to the potential of causing muscle atrophy in the

calf

> since the knee is tied in with the foot/ankle.

>

> 5) Unfortunately, there's no " guideline " or prediction about how

well

> your child will adjust to the brace- however, some things to keep

in

> mind are: the foot/leg will most likely be sensitive to the touch

and

> muscles will be sore when the last cast is removed, the foot may

> also be swollen when the last cast is removed, red marks are okay

but

> they should fade within a half hour of the shoe being removed,

> movement between the shoe and foot is what causes blisters, you can

> punch more holes in the strap as the leather stretches, saddlesoap

> can be used to soften the shoe leather, sometimes a custom foam

> (plastizode) insert is used to keep the heel down, the foot should

be

> flat in the shoe before strapping/lacing up, be on-guard for

blisters

> and pressure sores and deal with them immediately. Teach the child

> how to kick their legs in unison when wearing the brace.

>

> I guess what I'm trying to stress is that if everything is " right " ,

> the child shouldn't have any major problems with the brace, and the

> brace should never cause pain. It's just unfortunate that many

> parents have to struggle to get things " right " and they may end up

> being more educated than the orthotists and doctors they're working

> with. Bracing is crucial to prevent relapse, and it's in the

child's

> best interest for the parent to persevere in their attempts to get

> everything on track. We've had many families come to this board in

> desparation, barely clinging to their sanity, but after some

> troubleshooting (addressing both minor and major issues) they got

> their bracing issues resolved and their life back to " normal " .

> To all the new families- please ask questions- and feel free to

> search the archives using key words in your search (you have to

keep

> hitting the next button to scroll through the posts one section at

a

> time), the files, photos, and links sections.....

>

> I hope this is useful to some.....I feel fortunate that my daughter

> had zero issues with the brace, we were prepared for the worst

> (tolerance-wise) since she first wore it at the *mature* age of 5

> months old! I feel for the families who have struggled and continue

> to struggle to get the brace right for their child- I hope this

board

> can continue to help them diagnose problems and get the support

they

> need. I know this is a major issue, because it never goes away or

> dies down as a topic on our board- it's a constant problem that we

> see with so many new families.

>

[Guest guest]

Hi Carolyn, Welcome to our group. Sorry you had to join us because of

being sick. But here you will find lots of knowledge and support. Also

will enjoy a few laughs here as well. Thanks for joining us. Ingrid

> Wanted to say hello to the group. I was diagnosed with rectal cancer

> 11 months ago and went through chemo, radiation, surgery and another

> round of chemo. This ended 3 weeks ago. I am now in post treatment

> testing. It was stage 3 and non nmetastatic.

> I hope I can get and give some encouragement from the group.

>

> Thanks

> Carolyn

[Guest guest]

Welcome Carolyn

You must be thrilled to have a break. Still I am sure there are times

when NOT having treatment is going to feel strange like you lost your

security blanket sdo to speak. So be sure to stop in for advice and

support.

Much success in your recovery and God Bless

Narice

> > Wanted to say hello to the group. I was diagnosed with rectal

cancer

> > 11 months ago and went through chemo, radiation, surgery and

another

> > round of chemo. This ended 3 weeks ago. I am now in post treatment

> > testing. It was stage 3 and non nmetastatic.

> > I hope I can get and give some encouragement from the group.

> >

> > Thanks

> > Carolyn

[Guest guest]

Hey gal, enjoy yourself tonight and hope you had good time with Hillary

last night.. Must be coming out time. I had lovely time at the Pub last

night. on sang. He is really nice man, married of course.

But we have good time visiting and talking about irish music etc. He

even bought me my supper. What a sweetheart.

I recylcled some CD's and covered them with pretty clipart etc, did

most patriotic and only couple with Irish Blessings, course they wanted

the Irish Blessings. So I have a bunch made up and ready to print out.

Had to get printer ink, and some real necessities... I sold several of

the CD's and got a prepaid order for an Irish Blessing one. So

thankfully had some spending money... I will be glad when it is pay day

next week. Hope will finally get caught up with bills. Tried to find out

if they sold anything at the gift shop, but gal there didn't know and

said owners were out of town until next week.. So I have to wait. I

can't do anything with the glass blocks until I get some sold. Got

several to decorate for the gift shop but can't finish yet.. Trying to

work on other stuff. Maybe make some CD;s for truck stop where JOhn

works, also maybe some new tile magnets. At least she buys my stuff out

right, don't have to wait until they sell..

Well sorry I am rambling. Is time for a nap soon. Wore myself out going

to store this morning... Need to eat something too.

Take care and have a good time... Jolene

[Guest guest]

>Hi ,

My son is 5, but we have been struggling with GI issues for 3 1/2 yrs.

You might find the attached conference given by Dr. Wakefield & Dr. Krigsman

helpful. It is the best explanation of what happens in the intestines of some of

the ASD kids, that I have seen. Also it confirms from GI specialist, that you

are doing the right things. CF/GF seems to be an important factor, and they

mention one child who was healed using SCD only.

My son had formed stool for the first time ever, a week after we started SCD.

As I added more food however I lost it. He is one of those kids who has multiple

allergies, so we are very restricted on this diet. He has not yet been on any

anti-inflamitory med., but I know after watching this conference, that I have to

explore this next.

A moderated panel discussion will immediately follow the lecture. Panel

members include: Vicky Debold, RN, PhD; Yazbak, MD; Debbie

Darnley-Fisch, MD; and Arthur Krigsman, MD.

>

> http://www.chem.cmu.edu/wakefield/ (you may have to copy this to google to

get into it. I am sorry, but I am not very savvy at this stuff.)

>

Good luck,

Philomena Mom of ASD(5) (SCD 12mths)

---------------------------------

Yahoo! Shopping

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[Guest guest]

>Hi ,

My son is 5, but we have been struggling with GI issues for 3 1/2 yrs.

You might find the attached conference given by Dr. Wakefield & Dr. Krigsman

helpful. It is the best explanation of what happens in the intestines of some of

the ASD kids, that I have seen. Also it confirms from GI specialist, that you

are doing the right things. CF/GF seems to be an important factor, and they

mention one child who was healed using SCD only.

My son had formed stool for the first time ever, a week after we started SCD.

As I added more food however I lost it. He is one of those kids who has multiple

allergies, so we are very restricted on this diet. He has not yet been on any

anti-inflamitory med., but I know after watching this conference, that I have to

explore this next.

A moderated panel discussion will immediately follow the lecture. Panel

members include: Vicky Debold, RN, PhD; Yazbak, MD; Debbie

Darnley-Fisch, MD; and Arthur Krigsman, MD.

>

> http://www.chem.cmu.edu/wakefield/ (you may have to copy this to google to

get into it. I am sorry, but I am not very savvy at this stuff.)

>

Good luck,

Philomena Mom of ASD(5) (SCD 12mths)

---------------------------------

Yahoo! Shopping

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[Guest guest]

>Hi ,

My son is 5, but we have been struggling with GI issues for 3 1/2 yrs.

You might find the attached conference given by Dr. Wakefield & Dr. Krigsman

helpful. It is the best explanation of what happens in the intestines of some of

the ASD kids, that I have seen. Also it confirms from GI specialist, that you

are doing the right things. CF/GF seems to be an important factor, and they

mention one child who was healed using SCD only.

My son had formed stool for the first time ever, a week after we started SCD.

As I added more food however I lost it. He is one of those kids who has multiple

allergies, so we are very restricted on this diet. He has not yet been on any

anti-inflamitory med., but I know after watching this conference, that I have to

explore this next.

A moderated panel discussion will immediately follow the lecture. Panel

members include: Vicky Debold, RN, PhD; Yazbak, MD; Debbie

Darnley-Fisch, MD; and Arthur Krigsman, MD.

>

> http://www.chem.cmu.edu/wakefield/ (you may have to copy this to google to

get into it. I am sorry, but I am not very savvy at this stuff.)

>

Good luck,

Philomena Mom of ASD(5) (SCD 12mths)

---------------------------------

Yahoo! Shopping

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[Guest guest]

Thanks Philomena for the video of Dr. Wakefield and company.How do you find your

son has been doing since a year of being on the diet? Toni from Canada

Re: New to the group

>Hi ,

My son is 5, but we have been struggling with GI issues for 3 1/2 yrs.

You might find the attached conference given by Dr. Wakefield & Dr. Krigsman

helpful. It is the best explanation of what happens in the intestines of some of

the ASD kids, that I have seen. Also it confirms from GI specialist, that you

are doing the right things. CF/GF seems to be an important factor, and they

mention one child who was healed using SCD only.

My son had formed stool for the first time ever, a week after we started

SCD. As I added more food however I lost it. He is one of those kids who has

multiple allergies, so we are very restricted on this diet. He has not yet been

on any anti-inflamitory med., but I know after watching this conference, that I

have to explore this next.

A moderated panel discussion will immediately follow the lecture. Panel

members include: Vicky Debold, RN, PhD; Yazbak, MD; Debbie

Darnley-Fisch, MD; and Arthur Krigsman, MD.

>

> http://www.chem.cmu.edu/wakefield/ (you may have to copy this to google to

get into it. I am sorry, but I am not very savvy at this stuff.)

>

Good luck,

Philomena Mom of ASD(5) (SCD 12mths)

---------------------------------

Yahoo! Shopping

Find Great Deals on Holiday Gifts at Yahoo! Shopping