Ponseit method is what it is

[Guest guest]

Hey all! I don't post here very much, but am always reading and thought I would

give an update on . He is 18 1/2 months old, and was born with clubfeet

along with many, many other things. In April of this year, we found out that

the apnea and blue spells he was having were from seizures, so now we are on

that med. He is doing well, but not walking or talking yet. We are getting

smo's to help with stablity as well as arch supports. These will be worn during

the day when he is out the his dbb.

Although I don't post much lately, I have read several posts recently, I

wanted to add my 2cents too! I agree with cf falling to the side when other

issues arise. had surgery in May, for things unrelated to cf, and has

had about 8 other hospital stays since August. We are less strict with the

shoes during this time, which I know isn't good, but there are so many other

stressful things at the time, that we just can't deal with it. Those metal

cribs are hard to wear a metal bar with.He didn't feel well anyway, and then to

constantly be awoke by banging was just too much.We watch his foot carefully,

and the first few times called his ortho to see if we should have her look at

his feet since he had been out of shoes for about 3 days. She told us what to

watch for and not to worry about it. I know it is hard to imagine not following

bracing because it can lead to more work and stress later, but you do what you

have to to get through your situation.

As for doctors knowing everything because they are the professional, read this

in one post and just wanted to share my experience since has about 9

doctors working on his case, they don't. has many doctors, one for

pulmonology, one for GI, one ENT, a developmental ped., ortho., urologist, a

surgeon, a neurologist and neurosurgeon, and several therapist ( I know I am

missing someone)> They all went to school for their field and they are

wonderful doctors who really know their stuff, but they are not experts in

subglottic stenosis, syrnix cavities, GERD, or aspiration. They don't

specialize in high tone, sensory issues, and receptive delays and eating issues.

Yes, they know about them and have treated them often and experience pays off.

The only doctor we have that has specialized is our orthotist. She is certified

by Dr. Ponseti. She took the time to do the extra work. There are doctors,

like our others, who are really good at what they do but

aren't experts in 's issues.

I question the heck out of all his doctors. Our dev. ped. told me jokeingly

that he hate when I come because I am so argumentative, but I want to know

everything and understand it all, and I want him to understand me. His doctors

know they can't just tell me something and have me believe it. I get comments

all the time about how involved and on top of things I am. This use to surprise

me, but now I expect it. It is our job as parents to question the doctors, know

all we can about our child's condition and treatment, and question the doctors.

They tell you more if you do this because you are informed!!! I know from

experience and being told this by mult. doctors from different hospital.

Know onto the subject of my post, the Ponseti method is what it is. My son

was being treated by the Ponseti method, but the doctor was modifying it. Then,

its not the Ponseti Method. This method is what it is because of all the parts

put together. If you change even one of them, you are not using the Ponseti

Method, and chances are you are not certified to show you even know how to use

it. Yes, some children are treated successfully this way, but why would you

knowingly just trust a doctor who has not specialized in clubfeet, who I am

betting hasn't got the years of data on some others, to a doctor who invented

the method, certified doctors, did years of research to prove his method over

time. Or, to parents who have experienced both. Doctors are smart and they

know what they are doing most of the times, but some are also arrogent, and

think they know things they don't. I have switched 3 of my son's doctors

because I didn't feel they were doing the best job that

could be done. One was switched simply because he didn't listen to me as a

parent. I was told " That is why you are the parent, and I am the doctor. "

Hello, I know more about MY child than you, so see ya!

Thanks for letting me give my 2 cents. This group has been so wonderful to me

for the 2 years I have posted and read here. Hopefully, all 's

" excitement " has ended for awhile, and I will take the time to post here more

often!

11/19/04 bcf

[Guest guest]

,

Good to hear that is doing well and hope he is doctor free for

a while to just let him be a blossoming toddler.

I think what you are saying here about doctors is important, I always

say that they are people just like us, they may have just gone to

school a little longer. When a doctor goes to medical school he

chooses a specialty, and some choose a subspecialty, but even a

subspecialty probably doesn't mean that he is an expert on every type

of ailment/condition/disorder that could come up in his patients. For

instance in Orthopaedics, perhaps a doctor chooses Pediatric

Orthopaedics with a subspecialty of lower extremities. But even this

subspecialty does not guarantee that he has any special knowledge

about vertical talus or clubfoot or tibial bowing or any other of a

myriad of conditions that maybe he has only seen once in a textbook.

I also think the average non-medical person is perfectly capable of

understanding all the ins and outs of any medical treatment that they

or their children are receiving. But it is up to the individual

person to become educated about their condition and treatment so that

they can ask intelligent questions. Like you said, a doctor who sees

that you have some knowledge about the subject is more likely to share

further information that he might not otherwise. There is actually a

part of the HIPAA privacy act that says that the patient should be

responsible for being educated about his/her treatment. Of course it

all goes back to personal responsibility, of which I feel this entire

country is sorely lacking, which is of course a whole other subject

that I could discuss ad nauseum but I will refrain. : )

And finally, regarding what you said about the Ponseti method, to

paraphrase from a discussion with ee a few months ago, it is a

bit alarming to see the way that so many doctors are getting away from

the purity of the method; it is that " purity " that makes it so simple

and makes it work so well. The reason that the global help booklet

calls it " Clubfoot: Ponseti Management " is because it is more than the

manipulation of the bones and bringing that foot back around to the

proper overcorrected position, it is also about the management and

maintenance of that corrected foot as a combined effort between

doctor, orthotist and, in large part, the parents. Dr. Ponseti has

been studying clubfoot since the 1940's -- he has proven time and time

again that he knows what he is doing, he is the ultimate in

" specialists " when it comes to clubfoot and it is beyond me why other

doctors feel they have to mess with success that has decades of data

to back it up.

Whew, I think before I get off on another long-winded tangent I think

I will wrap it up here. Bottom line of what I am trying to say here

to anyone out there who is new here, just starting treatment, or at

some crossroads in their child's treatment:

Make sure the doctor you choose for your child's clubfoot correction

is a true clubfoot specialist, preferrably one that is on Dr.

Ponseti's list of qualified physicians, ask a lot of questions and get

educated about the whole treatment process and the management of the

clubfoot, and watch for things that the doctor might be doing that are

red flags as far as " tweaking " the method.

Hope this is helpful to someone (anyone),

Mom to Jenna (4/7/01) & Sam (9/25/04, RCF, Dobbs brace 12-14hrs/day)

>

> Hey all! I don't post here very much, but am always reading and

thought I would give an update on . He is 18 1/2 months old,

and was born with clubfeet along with many, many other things. In

April of this year, we found out that the apnea and blue spells he was

having were from seizures, so now we are on that med. He is doing

well, but not walking or talking yet. We are getting smo's to help

with stablity as well as arch supports. These will be worn during the

day when he is out the his dbb.

>

> Although I don't post much lately, I have read several posts

recently, I wanted to add my 2cents too! I agree with cf falling to

the side when other issues arise. had surgery in May, for

things unrelated to cf, and has had about 8 other hospital stays since

August. We are less strict with the shoes during this time, which I

know isn't good, but there are so many other stressful things at the

time, that we just can't deal with it. Those metal cribs are hard to

wear a metal bar with.He didn't feel well anyway, and then to

constantly be awoke by banging was just too much.We watch his foot

carefully, and the first few times called his ortho to see if we

should have her look at his feet since he had been out of shoes for

about 3 days. She told us what to watch for and not to worry about

it. I know it is hard to imagine not following bracing because it can

lead to more work and stress later, but you do what you have to to get

through your situation.

>

> As for doctors knowing everything because they are the

professional, read this in one post and just wanted to share my

experience since has about 9 doctors working on his case, they

don't. has many doctors, one for pulmonology, one for GI, one

ENT, a developmental ped., ortho., urologist, a surgeon, a neurologist

and neurosurgeon, and several therapist ( I know I am missing

someone)> They all went to school for their field and they are

wonderful doctors who really know their stuff, but they are not

experts in subglottic stenosis, syrnix cavities, GERD, or aspiration.

They don't specialize in high tone, sensory issues, and receptive

delays and eating issues. Yes, they know about them and have treated

them often and experience pays off. The only doctor we have that has

specialized is our orthotist. She is certified by Dr. Ponseti. She

took the time to do the extra work. There are doctors, like our

others, who are really good at what they do but

> aren't experts in 's issues.

>

> I question the heck out of all his doctors. Our dev. ped. told

me jokeingly that he hate when I come because I am so argumentative,

but I want to know everything and understand it all, and I want him to

understand me. His doctors know they can't just tell me something and

have me believe it. I get comments all the time about how involved

and on top of things I am. This use to surprise me, but now I expect

it. It is our job as parents to question the doctors, know all we can

about our child's condition and treatment, and question the doctors.

They tell you more if you do this because you are informed!!! I know

from experience and being told this by mult. doctors from different

hospital.

>

> Know onto the subject of my post, the Ponseti method is what it

is. My son was being treated by the Ponseti method, but the doctor

was modifying it. Then, its not the Ponseti Method. This method is

what it is because of all the parts put together. If you change even

one of them, you are not using the Ponseti Method, and chances are you

are not certified to show you even know how to use it. Yes, some

children are treated successfully this way, but why would you

knowingly just trust a doctor who has not specialized in clubfeet, who

I am betting hasn't got the years of data on some others, to a doctor

who invented the method, certified doctors, did years of research to

prove his method over time. Or, to parents who have experienced both.

Doctors are smart and they know what they are doing most of the

times, but some are also arrogent, and think they know things they

don't. I have switched 3 of my son's doctors because I didn't feel

they were doing the best job that

> could be done. One was switched simply because he didn't listen to

me as a parent. I was told " That is why you are the parent, and I am

the doctor. " Hello, I know more about MY child than you, so see ya!

>

> Thanks for letting me give my 2 cents. This group has been so

wonderful to me for the 2 years I have posted and read here.

Hopefully, all 's " excitement " has ended for awhile, and I will

take the time to post here more often!

>

>

> 11/19/04 bcf

>

>

>