RE: Re: Should I seek a 2nd opinion in central PA?

[Guest guest]

Hi :

I just wanted to quickly chime in. When my daughter was 3 months old and

transitioning from the casts into the DDB, we started having problems. I

went to a well known Ped. Orthopedist at s Hopkins, so was very

confident in his ability.

I send you this message because I read in one of your earlier posts that you

felt like something was just not right and this caused you to think about a

second opinion. I am a strong believer in " mommy sense. " If you feel like

something is just not right.... you have nothing to loose by seeking a

second opinion. I saw that Shook posted earlier and recommended Dr.

Herzenberg in Baltimore. At the suggestion of and many on this forum,

we too went to see him (for a second opinion) because my mommy sense told me

something was just not right with Maddie's treatment.

I can say that Maddie is now in the shoes... her little fat,

sausage-like feet just did not do well in the Markells. We love the shoes

and she is now a year old and all over the place. Dr Herzenberg is great

with Maddie. I feel very fortunate to have found him. We obviously

switched.

It also turned out that the doc that we were seeing at Hopkins uses a

modified version of the Ponseti treatment (a fact that I wish I would have

realised a long time ago!!!!).

I see that you have received many responses. Good Luck.

Kim

Mom to Maddie, 06/16/2005, BCF

>

> Kori,

> I made an album named " Brynn " for you to check out some photos.

>

>

>

>

>

> >

> > >Hi, my name is and our daughter, Brynn is 3 months old with

> > >club foot on her right foot. She was casted in Hershey, PA at 5

> days

> > >old by a nurse practioner (who trained with Dr. Ponseti) and when

> the

> > >cast came off, she had a pressure sore the size of a nickel on the

> > >inside of the top of her ankle. We waited 3 weeks for the sore to

> > >heal and then resumed casting with cast #1, this time with one of

> the

> > >surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

> > >ago. She still had cavus when she received the tenotomy. Her post-

> > >tenotomy cast was removed Tuesday still with cavus all the way

> across

> > >her foot. We went into Markell boots and bars to see if it would

> > >help the cavus with a return appointment 2 weeks later. By Thursday

> > >(2 days later) Brynn was developing a pressure sore on her GOOD

> > >heel. After calling the nurse practioner she said to come in and

> the

> > >attending surgeon would look at it and we would cast the foot

> again.

> > >The surgeon mentioned that Brynn may need another tenotomy down the

> > >line since she may lose dorsiflexion as we correct the cavus. The

> > >nurse said she would give us a prescription for the boots

> > >since her skin is so sensitive.

> > >

> > >As you can imagine, I'm frustrated with how " unsmoothly " things

> have

> > >gone and I'm wondering if I need to get a second opinion. I think

> my

> > >only option is the Schriners Hospital in Philadelpia. I know these

> > >doctors have made feet straight because I see them in the waiting

> > >room when I come! Any and all advice is helpful!

> > >

> > >

> >

> >

> >

[Guest guest]

,

I saw the pictures. Wow... well unfortunately I would have to say

that they should never have performed the tenotomy on the foot at

that stage. It was nowhere ready for it. In fact, the way that her

foot looks in those pictures looks like it should have looked after

the first cast. Are they trying to wrench the foot into an abducted

position from that point?

She does need additional casting. I would like you to look at the

physician's section on Dr. Ponseti's webiste which details exactly

how to manipulate the foot per each casting. I think you will see

what I mean when I say that they probably don't have a handle on the

exact way to correct these feet when you look at the pictures of the

bones and correction process.

I would caution you against doing much more with this clinic, and I

hope we can help you find a Ponseti Doctor to get her to for a second

opinion. The gold standard for knowing if they are doing this

properly is that it only takes 3-7 weekly casts for most feet and 5-9

at the most for the most severe feet to obtain full correction. If

more casts are needed, something is amiss.

Can you tell us more about your location so someone can recommend a

doc in your area?

I'm so sorry for little Brynn's foot, that sore is awful!!! I

honestly don't think I've seen a casting sore that bad ever.

here's the link to the technical section on Dr. Ponseti's

website. Check out the figures that show how to manipulate the

bones. It makes perfect sense when you see these and read the

captions describing what to do and when. Brynn's physician may want

to look at them too. Did they tell you they were trained in the

Ponseti Method?

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/clubfeet/forp\

roviders/index.html

I will be gone most of the rest of the day but I will send you my

phone number privately if you wish to give me a call.

hang in there, we'll help you figure this out and soon it'll be all

over and her foot fixed right nicely. Promise!

Kori

At 07:55 AM 6/20/2006, you wrote:

>Kori,

>I made an album named " Brynn " for you to check out some photos.

>

>

>

>

> >

> > >Hi, my name is and our daughter, Brynn is 3 months old with

> > >club foot on her right foot. She was casted in Hershey, PA at 5

>days

> > >old by a nurse practioner (who trained with Dr. Ponseti) and when

>the

> > >cast came off, she had a pressure sore the size of a nickel on the

> > >inside of the top of her ankle. We waited 3 weeks for the sore to

> > >heal and then resumed casting with cast #1, this time with one of

>the

> > >surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

> > >ago. She still had cavus when she received the tenotomy. Her post-

> > >tenotomy cast was removed Tuesday still with cavus all the way

>across

> > >her foot. We went into Markell boots and bars to see if it would

> > >help the cavus with a return appointment 2 weeks later. By Thursday

> > >(2 days later) Brynn was developing a pressure sore on her GOOD

> > >heel. After calling the nurse practioner she said to come in and

>the

> > >attending surgeon would look at it and we would cast the foot

>again.

> > >The surgeon mentioned that Brynn may need another tenotomy down the

> > >line since she may lose dorsiflexion as we correct the cavus. The

> > >nurse said she would give us a prescription for the boots

> > >since her skin is so sensitive.

> > >

> > >As you can imagine, I'm frustrated with how " unsmoothly " things

>have

> > >gone and I'm wondering if I need to get a second opinion. I think

>my

> > >only option is the Schriners Hospital in Philadelpia. I know these

> > >doctors have made feet straight because I see them in the waiting

> > >room when I come! Any and all advice is helpful!

> > >

> > >

> >

> >

> >

[Guest guest]

, we had similar issues with our dr in CT, and then we saw Dr.

Herzenberg and Dr. Lamm in Baltimore and all has been well since. It's

worth the trip!!

and Logan

Re: Should I seek a 2nd opinion in central PA?

,

I don't have a lot of time right now and I'm coming in without reading

the whole thread on this message, but I just wanted to second what

Kori said. I took a look at the pictures you posted and my heart just

breaks for your little girl to have had to endure these terrible

pressure sores. I would also agree that you should probably not let

the current doctor(s) mess around with her foot as they may be causing

more harm than good. I have to say that I think your daughter needs a

VERY experienced Ponseti doctor to get her foot to a corrected

position at this point. I highly recommend going to Dr. Herzenberg in

Baltimore, I know it is a bit more of a drive but it will be well

worth it. In fact, if you can manage it, I would personally suggest

going straight to Dr. Ponseti. There are lots of resources to help

you get where you need to go to have her foot properly corrected, and

we can help you! Please hang in there and we'll help you figure out

what the next step needs to be.

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

> > >

> > > >Hi, my name is and our daughter, Brynn is 3 months old with

> > > >club foot on her right foot. She was casted in Hershey, PA at 5

> >days

> > > >old by a nurse practioner (who trained with Dr. Ponseti) and when

> >the

> > > >cast came off, she had a pressure sore the size of a nickel on the

> > > >inside of the top of her ankle. We waited 3 weeks for the sore to

> > > >heal and then resumed casting with cast #1, this time with one of

> >the

> > > >surgeons. Brynn received 5 casts and then had a tenotomy 3 weeks

> > > >ago. She still had cavus when she received the tenotomy. Her post-

> > > >tenotomy cast was removed Tuesday still with cavus all the way

> >across

> > > >her foot. We went into Markell boots and bars to see if it would

> > > >help the cavus with a return appointment 2 weeks later. By Thursday

> > > >(2 days later) Brynn was developing a pressure sore on her GOOD

> > > >heel. After calling the nurse practioner she said to come in and

> >the

> > > >attending surgeon would look at it and we would cast the foot

> >again.

> > > >The surgeon mentioned that Brynn may need another tenotomy down the

> > > >line since she may lose dorsiflexion as we correct the cavus. The

> > > >nurse said she would give us a prescription for the boots

> > > >since her skin is so sensitive.

> > > >

> > > >As you can imagine, I'm frustrated with how " unsmoothly " things

> >have

> > > >gone and I'm wondering if I need to get a second opinion. I think

> >my

> > > >only option is the Schriners Hospital in Philadelpia. I know these

> > > >doctors have made feet straight because I see them in the waiting

> > > >room when I come! Any and all advice is helpful!

> > > >

> > > >

> > >

> > >

> > >