Re: NEW TO GROUP: clubfoot with neurological problems

[Guest guest]

I'm so sorry that your physician said those things to you - he needs to do a bit

more research before he opens his mouth, let alone improve that bedside manner.

Good grief. If you do just a bit of research you'll realize that the

overwhelming majority of the time cf is just one of those things that happens.

Yes it can be genetic and yes, it can be tied in to some neurological thing but

alas most of the time it just is. And given the things that could be wrong,

I'll take club feet over other things any day. Sure it's a pain right now but

it's completely fixable. Can't beat that!

Chris

NEW TO GROUP: clubfoot with neurological

problems

When my son was born with clubfeet he was seen by a docot at all

childrens hospital and he said it was probably either genetic or

neurological, and nothing was said any further he put casts on when

he was three days old. Well now he is six months and is having

seizures and my son is going to see a nerologist on 11/10/04 and had

a EEG done on 11/04/04 does anyone now anything about this?

[Guest guest]

I'm so sorry to hear about your son. Our son also has some neurological issues

but it has nothing to do with his clubfeet. He was born with bilateral clubfeet

and was perfectly healthy otherwise until he was born 2 1/2 months premature.

He had some hemorraging in his head do to the early birth and acquired

hydrocephalus. However, again nothing to do with his feet.

I haven't ever read anything about the two being related. I would think there

would be something else there. Clubfoot can accompany other birth defects like

Spinabifida, Down Syndrome, Trisome 18 (not sure if that's the right number).

But I've never heard of there being a case of clubfeet because of a neurological

issue.

I wish you all the best. Please keep us posted.

arianat2002 arianat2002@...> wrote:

When my son was born with clubfeet he was seen by a docot at all

childrens hospital and he said it was probably either genetic or

neurological, and nothing was said any further he put casts on when

he was three days old. Well now he is six months and is having

seizures and my son is going to see a nerologist on 11/10/04 and had

a EEG done on 11/04/04 does anyone now anything about this?

[Guest guest]

i am also saddened to hear about your son. my son also has

neurological issues and so i think i have some sense of what youre

going through.

clubfeet is very often associated with neurological problems; the

link between clubfoot and neurological problems is well established

in fact. just before my son was born i read an excellent academic

paper by a group out of london, Bakalis, et. al., who did a study on

100,000 patients, 108 of which had clubfeet, and their outcomes. one

of the main finding of this study (verified by my own personal story)

is that even when no other anamolies can be detected, there is still

a 20% chance that there are significant neurodevelopmental issues.

while it is the conventional wisdom that bilateral and unilateral

clubfeet occur with equal frequency, that is only looking at births

and not at actual incidence. that is, bilateral is more common than

unilateral and is more likely to result in something bad (like death

or termination) and so it appears that bilateral and unilateral are

represented equally.

indeed, of bilateral clubfoot births, 60% are associated with " poor

outcomes " whereas in unilateral clubfoot, only about 25% are

associated with poor outcomes. similarly, idiopathic clubfoot

consists roughly 50%/50% of unilateral and bilateral clubfoot, but in

clubfoot cases of " complex " etiology, about 70% are bilateral.

so, have your son checked out carefully. trust your own instincts

about his behavior. i have found that a lot of doctors who spend

fifteen minutes with you and your son and then make pronouncements

are not as good as you who are able to pick up on very subtle cues

that he may be sending. it took me a while to find the right doctors

that i trust.

good luck to you. if anyone would like to read the Bakalis article,

i can email it.

bill

>

>

> When my son was born with clubfeet he was seen by a docot at all

> childrens hospital and he said it was probably either genetic or

> neurological, and nothing was said any further he put casts on when

> he was three days old. Well now he is six months and is having

> seizures and my son is going to see a nerologist on 11/10/04 and

had

> a EEG done on 11/04/04 does anyone now anything about this?

>

>

>

>

>

>

>

>

>

[Guest guest]

i am also saddened to hear about your son. my son also has

neurological issues and so i think i have some sense of what youre

going through.

clubfeet is very often associated with neurological problems; the

link between clubfoot and neurological problems is well established

in fact. just before my son was born i read an excellent academic

paper by a group out of london, Bakalis, et. al., who did a study on

100,000 patients, 108 of which had clubfeet, and their outcomes. one

of the main finding of this study (verified by my own personal story)

is that even when no other anamolies can be detected, there is still

a 20% chance that there are significant neurodevelopmental issues.

while it is the conventional wisdom that bilateral and unilateral

clubfeet occur with equal frequency, that is only looking at births

and not at actual incidence. that is, bilateral is more common than

unilateral and is more likely to result in something bad (like death

or termination) and so it appears that bilateral and unilateral are

represented equally.

indeed, of bilateral clubfoot births, 60% are associated with " poor

outcomes " whereas in unilateral clubfoot, only about 25% are

associated with poor outcomes. similarly, idiopathic clubfoot

consists roughly 50%/50% of unilateral and bilateral clubfoot, but in

clubfoot cases of " complex " etiology, about 70% are bilateral.

so, have your son checked out carefully. trust your own instincts

about his behavior. i have found that a lot of doctors who spend

fifteen minutes with you and your son and then make pronouncements

are not as good as you who are able to pick up on very subtle cues

that he may be sending. it took me a while to find the right doctors

that i trust.

good luck to you. if anyone would like to read the Bakalis article,

i can email it.

bill

>

>

> When my son was born with clubfeet he was seen by a docot at all

> childrens hospital and he said it was probably either genetic or

> neurological, and nothing was said any further he put casts on when

> he was three days old. Well now he is six months and is having

> seizures and my son is going to see a nerologist on 11/10/04 and

had

> a EEG done on 11/04/04 does anyone now anything about this?

>

>

>

>

>

>

>

>

>

[Guest guest]

Just want to add that when you have CF " sometimes " its associated

with something called Spina Bifida Occulta, minimal form of Spina

Bifida. Millions of people have it and don't know that they do. With

the SPO, you can also have a " tethered cord " which is quite common

with a foot deformity. If the tethered cord is left untreated

neurological signs will show later on as the spine grows. I have

searched out the internet on this because when we saw Dr. Ponseti he

noticed a dimple and a hairy patch on Ava's lumbar-sacral area. Two

signs of a tethered cord. He did tell me its nothing to worry about

and he didn't feel she had a tethered cord. You know us Mothers and

the internet, I am having her checked anyway after reading up on it.

The longer you wait to see neurological signs the worse it could be

for her. I am feeling very confident that this is all nothing but I

would rather find out now then later. We are getting our MRI in 2

wks. Just thought I would share.

KK

>

>

> When my son was born with clubfeet he was seen by a docot at all

> childrens hospital and he said it was probably either genetic or

> neurological, and nothing was said any further he put casts on when

> he was three days old. Well now he is six months and is having

> seizures and my son is going to see a nerologist on 11/10/04 and

had

> a EEG done on 11/04/04 does anyone now anything about this?

[Guest guest]

Neurodevelopment Issues....... such as, what?

indeed, of bilateral clubfoot births, 60% are associated with " poor

outcomes "

What kind of poor out comes? Could we even begin to estimate if 60% of our bcf

children on this board have " Poor Outcomes " ? Just from the posts I've been

reading here off and on for the past four years I would guess that % to be much,

much lower.

This all sounds very frightening yet very vague and I would really need more

information to even process what the study is claiming. Is 108 children out of

100,000 really a fair assessment?

s.

Re: NEW TO GROUP: clubfoot with neurological

problems

i am also saddened to hear about your son. my son also has

neurological issues and so i think i have some sense of what youre

going through.

clubfeet is very often associated with neurological problems; the

link between clubfoot and neurological problems is well established

in fact. just before my son was born i read an excellent academic

paper by a group out of london, Bakalis, et. al., who did a study on

100,000 patients, 108 of which had clubfeet, and their outcomes. one

of the main finding of this study (verified by my own personal story)

is that even when no other anamolies can be detected, there is still

a 20% chance that there are significant neurodevelopmental issues.

while it is the conventional wisdom that bilateral and unilateral

clubfeet occur with equal frequency, that is only looking at births

and not at actual incidence. that is, bilateral is more common than

unilateral and is more likely to result in something bad (like death

or termination) and so it appears that bilateral and unilateral are

represented equally.

indeed, of bilateral clubfoot births, 60% are associated with " poor

outcomes " whereas in unilateral clubfoot, only about 25% are

associated with poor outcomes. similarly, idiopathic clubfoot

consists roughly 50%/50% of unilateral and bilateral clubfoot, but in

clubfoot cases of " complex " etiology, about 70% are bilateral.

so, have your son checked out carefully. trust your own instincts

about his behavior. i have found that a lot of doctors who spend

fifteen minutes with you and your son and then make pronouncements

are not as good as you who are able to pick up on very subtle cues

that he may be sending. it took me a while to find the right doctors

that i trust.

good luck to you. if anyone would like to read the Bakalis article,

i can email it.

bill

>

>

> When my son was born with clubfeet he was seen by a docot at all

> childrens hospital and he said it was probably either genetic or

> neurological, and nothing was said any further he put casts on when

> he was three days old. Well now he is six months and is having

> seizures and my son is going to see a nerologist on 11/10/04 and

had

> a EEG done on 11/04/04 does anyone now anything about this?

>

>

>

>

>

>

>

>

>

[Guest guest]

s,

i dont mean to be flippant, but if you are wondering if you have a poor outcome,

then you

dont. the poor outcomes referred to are generally discovered at birth or in the

first few

months of life. if you've made it past that, you are fine.

the people who come to this group have generally self-selected themselves as

having

nothing worse than clubfeet and so i would agree with you that the number of

people with

so-called poor outcomes on this board is much much lower. for the people with

poor

outcomes, the clubfeet is literally the least of their issues. as another

member touched

on, check out the spina bifida boards, or the dwarfism boards, or the trisomy 18

boards,

or the arthrogryposis boards, etc. they all come with clubfeet too.

i agree that 108 is not a large number of cases, but it corresponds to the

quoted incidence

of clubfeet of 1 in 1000. in fact, it is one of the largest studies done on the

subject. from

what i can gather, the team that performed this study is very well respected.

as i

mentioned earlier, i can email you the paper if you are interested.

one of the most interesting things i found in that study is the notion that

bilateral is

higher risk than unilateral.

> >

> >

> > When my son was born with clubfeet he was seen by a docot at all

> > childrens hospital and he said it was probably either genetic or

> > neurological, and nothing was said any further he put casts on when

> > he was three days old. Well now he is six months and is having

> > seizures and my son is going to see a nerologist on 11/10/04 and

> had

> > a EEG done on 11/04/04 does anyone now anything about this?

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

s,

i dont mean to be flippant, but if you are wondering if you have a poor outcome,

then you

dont. the poor outcomes referred to are generally discovered at birth or in the

first few

months of life. if you've made it past that, you are fine.

the people who come to this group have generally self-selected themselves as

having

nothing worse than clubfeet and so i would agree with you that the number of

people with

so-called poor outcomes on this board is much much lower. for the people with

poor

outcomes, the clubfeet is literally the least of their issues. as another

member touched

on, check out the spina bifida boards, or the dwarfism boards, or the trisomy 18

boards,

or the arthrogryposis boards, etc. they all come with clubfeet too.

i agree that 108 is not a large number of cases, but it corresponds to the

quoted incidence

of clubfeet of 1 in 1000. in fact, it is one of the largest studies done on the

subject. from

what i can gather, the team that performed this study is very well respected.

as i

mentioned earlier, i can email you the paper if you are interested.

one of the most interesting things i found in that study is the notion that

bilateral is

higher risk than unilateral.

> >

> >

> > When my son was born with clubfeet he was seen by a docot at all

> > childrens hospital and he said it was probably either genetic or

> > neurological, and nothing was said any further he put casts on when

> > he was three days old. Well now he is six months and is having

> > seizures and my son is going to see a nerologist on 11/10/04 and

> had

> > a EEG done on 11/04/04 does anyone now anything about this?

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I wasn't trying to be flippant either, honestly. I apologize if I came off

that way. When I asked about other neurological problems (what they may be) I

had a genuine interest and a personal curiosity if those might include learning

disabilities such as hyperactivity, excessive distractability and dyslexia.

thanks.

s.

i dont mean to be flippant, but if you are wondering if you have a poor outcome,

then you

dont. the poor outcomes referred to are generally discovered at birth or in the

first few

months of life. if you've made it past that, you are fine.

the people who come to this group have generally self-selected themselves as

having

nothing worse than clubfeet and so i would agree with you that the number of

people with

so-called poor outcomes on this board is much much lower. for the people with

poor

outcomes, the clubfeet is literally the least of their issues. as another

member touched

on, check out the spina bifida boards, or the dwarfism boards, or the trisomy 18

boards,

or the arthrogryposis boards, etc. they all come with clubfeet too.

i agree that 108 is not a large number of cases, but it corresponds to the

quoted incidence

of clubfeet of 1 in 1000. in fact, it is one of the largest studies done on the

subject. from

what i can gather, the team that performed this study is very well respected.

as i

mentioned earlier, i can email you the paper if you are interested.

one of the most interesting things i found in that study is the notion that

bilateral is

higher risk than unilateral.

> >

> >

> > When my son was born with clubfeet he was seen by a docot at all

> > childrens hospital and he said it was probably either genetic or

> > neurological, and nothing was said any further he put casts on when

> > he was three days old. Well now he is six months and is having

> > seizures and my son is going to see a nerologist on 11/10/04 and

> had

> > a EEG done on 11/04/04 does anyone now anything about this?

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

s

got it. some of the things can be that which i mentioned before - spina bifida,

dwarfism,

trisomy 18, down syndrome, arthrogryposis, charge syndrome, potters syndrome,

amniotic band syndrome, triploidy, ventricalomegaly, and any number of

unspecified

syndromes with multiple congenital anomolies.

i know when i first learned my son would have clubfeet, i did the research on

teh web and

scared the crap out of myself. with more perspective, i would think that things

like

learning disabilities or hyperactivity would be classified as positive outcomes.

in my case, my son sam was born with myelomalacia, which really just means

damaged

spinal cord. whether a stroke in utero or a simple under development of the

spinal cord,

the result is paralysis of the lower extremeties. in this sense, the paralysis

and lack of

muscle control " caused " the clubfeet (and dislocated hips).

> > >

> > >

> > > When my son was born with clubfeet he was seen by a docot at all

> > > childrens hospital and he said it was probably either genetic or

> > > neurological, and nothing was said any further he put casts on when

> > > he was three days old. Well now he is six months and is having

> > > seizures and my son is going to see a nerologist on 11/10/04 and

> > had

> > > a EEG done on 11/04/04 does anyone now anything about this?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

s

got it. some of the things can be that which i mentioned before - spina bifida,

dwarfism,

trisomy 18, down syndrome, arthrogryposis, charge syndrome, potters syndrome,

amniotic band syndrome, triploidy, ventricalomegaly, and any number of

unspecified

syndromes with multiple congenital anomolies.

i know when i first learned my son would have clubfeet, i did the research on

teh web and

scared the crap out of myself. with more perspective, i would think that things

like

learning disabilities or hyperactivity would be classified as positive outcomes.

in my case, my son sam was born with myelomalacia, which really just means

damaged

spinal cord. whether a stroke in utero or a simple under development of the

spinal cord,

the result is paralysis of the lower extremeties. in this sense, the paralysis

and lack of

muscle control " caused " the clubfeet (and dislocated hips).

> > >

> > >

> > > When my son was born with clubfeet he was seen by a docot at all

> > > childrens hospital and he said it was probably either genetic or

> > > neurological, and nothing was said any further he put casts on when

> > > he was three days old. Well now he is six months and is having

> > > seizures and my son is going to see a nerologist on 11/10/04 and

> > had

> > > a EEG done on 11/04/04 does anyone now anything about this?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

for those that are interested, you can download a copy of the Bakalis et. al.

paper i

referred to from my home computer website. go to:

http://wrg.homeip.net/bill/Documents/Studies:Papers/

and the Bakalis paper is the first link.

if you have questions or comments please email.

best

bill

> > > >

> > > >

> > > > When my son was born with clubfeet he was seen by a docot at all

> > > > childrens hospital and he said it was probably either genetic or

> > > > neurological, and nothing was said any further he put casts on when

> > > > he was three days old. Well now he is six months and is having

> > > > seizures and my son is going to see a nerologist on 11/10/04 and

> > > had

> > > > a EEG done on 11/04/04 does anyone now anything about this?

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

I see your point of looking at the glass to be half full or half empty regarding

these types of learning disorders if they existed. I am currently looking

heavily in to alternate educational methods for my bcf 6 yr old due to his

mental wheels spinning too fast. I'm not sold on the idea of him being ADD/ADHD

but your note piqued my curiosity since those are considered neurological

problems.

And curiously as I think more about this - and why I should mostly think a few

days before I open my mouth - I am thinking of my nephew by marriage who has

cerebral palsey (and club feet) and my nephew born to my sister whom they

thought was club footed but later diagnosed as cerbral palsey also, suspecting

en-utero strokes in both cases.

You have my hope and prayers that your little man comes through famously!

s.

i, i would think that things like

learning disabilities or hyperactivity would be classified as positive outcomes.