new to group

[Guest guest]

Hi Penny...

First, I understand how hard it is to deal with a toddler in the

DBB. Lately, Cole at 15 months has been waking up crying at night.

Lastnight this happened and we took the DBB off and instant relief.

I think my husband tied the laces too tight, I usually do it. I

don't have much advice for you, just good luck at your next

appointment.

Speaking of....we take Cole to Dr. Jarka too!!! I was so excited

when I read that. We started treatment in Oklahoma where we lived up

until last Labor Day, but when we moved we had to find a Ponseti

trained doctor. Dr. Jarka is the only one in Kansas so we travel

there from Wichita every 6 months. We have to pay the $58 office

visit out of pocket because she no longer takes First Guard. She

used to at Children's Mercy but stopped working from that clinic.

But, the drive there and her expertise is well worth it for perfect

little feet. Next time you see Dr. Jarka, explain your concerns with

the DBB. She's a very understanding lady and we just love her!

Great to know there is someone on the list now that I can share ortho

stories with.

Candy and Cole bi cf, 3/30/2002

> I just joined this group as suggested by someone on another group.

> I have a 19 month old boy that has a left club foot. He was casted

> every week for several months and then he was put in a boot and

> bar. He wore the boot and bar 23 hours a day for a few months.

Now

> he is supposed to wear the boot and bar at night, needless to say I

> have been a bad mom and have not made him wear it. It is hard to

> make him as he sleeps restlessly and wakes in the night. It is

time

> for a check up and I have dreeded going because in our last visit

> the DR told me that he might need to have surgury to move the

tendon

> over so that his foot will not turn in. We have been fortunate and

> not had to have surgury. It was suggested to me that he may need

to

> be cast again, I was unaware that this was an option.

> I am in the Kansas City MO area and our current DR is Jarka.

> If anyone has suggestions for me I am here to listen.

> I put in the shoe last night and he slept good, but this

> morning he had red spots on his foot, so I know that that needs

> adjusting, but our insurance does not cover the shoes.

>

> Penny

[Guest guest]

Hi, Penny,

Welcome to the group! I am sorry you and your child have had a hard

time with the brace. I know it can be a difficult thing sometimes,

and no one here is going to call you a " bad mom " .

My advice would be to go in for the checkup as soon as you can and

talk honestly to the doctor about the difficulties you've had. If the

foot is relapsing, it makes it all the harder for the brace to be

worn comfortably. The red marks you see might be from the foot not

fitting into the shoe properly anymore because of a relapse, not just

the shoes needing adjusting. I would say that the sooner you go in,

the better.

I would imagine that if the doctor is contemplating a tendon

transfer, a cast or two might be tried first, to be conservative. If

not, the tendon transfer surgery, as I understand it, is a fairly

straightforward procedure, not nearly as complicated or invasive as

the full clubfoot release surgery, and is, I've heard, usually quite

successful in treating a relasping foot in an older child. I know

it's scary to contemplate it, but try not to let that fear delay you

from going in. The more time that passes, the more complicated the

situation could become.

Is going to Iowa an option for you? They have the best and most

experience in dealing with relapses and older children. They might be

able to get the foot back on track with just casting, if you want to

do all you can before proceeding to a tendon transfer. If nothing

else, you could contact Dr. Ponseti for advice by phone or email, in

consultation with Dr. Jarka.

We all have our hurdles to get over with this treatment.. for some

it's convincing a spouse that switching doctors and traveling far is

necessary, for others it's sleepless nights from a baby who hates the

brace. I'm sure I don't need to tell you, however, that studies have

shown that using the brace as prescribed is the best way to prevent

relapse. I don't think of it as being " mean " to my child to make her

wear it, because.. like many things I won't let her do for safety

reasons, even if she doesn't like it .. (run into the street, ride in

the car without her carseat, etc.).. it's something that is for her

own good, and, although it might not be fun, it's necessary, and, in

my view, an acceptable price to pay for a corrected foot. We have

found that consistency of use has made it part of her reality, and so

it doesn't bother her.

Please understand that I'm NOT trying to make you feel bad! I'm just

trying to give you some thoughts to support you when your son is back

into the brace, after his foot is back on track. Best wishes, and let

us know how your checkup goes!

and

unilateral clubfoot, almost age 3

> I just joined this group as suggested by someone on another group.

> I have a 19 month old boy that has a left club foot. He was casted

> every week for several months and then he was put in a boot and

> bar. He wore the boot and bar 23 hours a day for a few months.

Now

> he is supposed to wear the boot and bar at night, needless to say I

> have been a bad mom and have not made him wear it. It is hard to

> make him as he sleeps restlessly and wakes in the night. It is

time

> for a check up and I have dreeded going because in our last visit

> the DR told me that he might need to have surgury to move the

tendon

> over so that his foot will not turn in. We have been fortunate and

> not had to have surgury. It was suggested to me that he may need

to

> be cast again, I was unaware that this was an option.

> I am in the Kansas City MO area and our current DR is Jarka.

> If anyone has suggestions for me I am here to listen.

> I put in the shoe last night and he slept good, but this

> morning he had red spots on his foot, so I know that that needs

> adjusting, but our insurance does not cover the shoes.

>

> Penny

[Guest guest]

Hi Carole,

Welcome to the group!

I don't think that you are being picky at all. When your son stands

up on his feet does he hold them flat to the floor while standing?

How long has your son been in the DBB (brace)? Did he wear if full-

time (23 hours/day) for the first 3 months following the removal of

his last cast? How many hours per day is he wearing the DBB now?

You may be able to look up some of the photos in the photo section

here so that you have something to compare with. Is your doctor on

Ponseti's list of qualified doctors?

If your son's feet are fully corrected, I don't think that he should

be walking on the outsides of them. Have you noticed a change in the

way he stands since he first came out of the casts or were they

always this way. He may not have been fully corrected to begin with

or there may have been some degree of relapse since his initial

correction. You should probably address your concerns with his

doctor now rather than wait until December. If he doesn't see

anything wrong, perhaps you could get a second opinion or even email

photos to Dr. Ponseti to get his opinion.

Daiga and Owen, 02/04/03

Unilateral Left CF

>

>

> Hello, I'm new to the group:)

>

>

> I am the mother of a 14mo old son who was born with both feet

that

> were club. I went into the pansetti method of correction when he

was

> 1week old. We are still in the braces at night. I have seen a great

> improvement with his feet. But, he still walks on the outside part

> of his foot and the front of his feet turn inward. Am I being a

> little to picky? Is this normal? His doctor says he is very pleased

> with his feet. We only go for ck ups every six months. Our next

> visit is Dec 10. Thank you:)

>

> Carole, In Hawaii

> Mom of Kristpher:)

[Guest guest]

,

Welcome! I second all of 's suggestions and references.

I have heard many good things about Dr. Frick and know several people

who have gone to him and have been very pleased, so I think you're in

good hands. I think trying casting again sounds like the expected

approach.. I hope it is successful and that he gets lots of

improvement. Hopefully he can get back on track, and when he starts

walking, that'll even help more.. My daughter walked at around 14

months.

Let us know how things go.. we'll be interested to hear..

and

> I am new to the group and forgot to tell you background on my son.

He is 14 mos. He was casted from 6 wks-12 weeks. At 12 weeks he had

a surgery (tendon release) (10/31/02). Casted for 4 more weeks. He

was in dbb after that. He has regressed though. They want to

restart the entire casting process again....has anyone had a baby

over a year casted? How about casting for the second time...anyone

know about that?

>

> Thanks and nice to meet you! We live in Raleigh, NC. We used to

(until a month ago) live in Ventura, CA.

>

> There is some poll that talks about when your club foot baby walked-

does anyone have a link to that?

>

> Thanks!

>

>

>

>

[Guest guest]

Hi ,

I can't really answer your questions because things have changed quite a

bit since my surgery - however, I want to welcome you to the group. The

folks here are wonderful - so very helpful, informative and supportive.

I'd be lost without them.

I look forward to getting to know you.

Take care,

Kay

in San Leandro

open RNY 12/1/03

on wrote:

> Hi Ya " ll,

>

> I just talked to my PCP yesterday and he said he would set up

> appointments for my nutrition consult and pysch evaluation to begin

> the process of submitting paper work for approval. What is the average

> length of time that it takes for someone to set up these

> appointments? I have been reading everything I could on

> Kaiser-WLS, what exactly is the process? How often do denials occur? I

> wasn't nervous about being denied until I saw my PCP. I have a BMI of

> 42, and a few health problems(nothing too serious). I am new to this

> group, I have been reading your postings for past week. Your support

> for each other is awesome.

>

[Guest guest]

I am new to this group. I have neurosarcoidosis Hugs Choctawann

[Guest guest]

Welcome to the group Choctowann. I am sorry that you this illness. When were you diagnosed? What symptoms are you having and treatments are you on? Please feel free to ask questions, share your experiences, or lean on us for support, believe me we will lean back and there are many here who can help answer your questions and share similiar experiences. The group has been quiet lately but we have over 300 members many of whom are reading quietly but have alot of support to offer, so reach out if you need to, and I am sure there are many who will reach back.

My name is , I was dx with Neurosarc four and half years ago, although I was sick four quite sometime before that. The DR.s were just telling to me to get some rest and that I was working much to hard. By the time they took things seriously, I was really very bad off, things had progressed quite far. With a lot of medication, time and patience I managed to recover from that initial flare, though I still have chronic NS and have required treatment with immunosuppresant medications ever since. The past year I have seen a pretty major relapse. But am still hanging in here.

I am 39 and have six kids. Two oldest graduate high school this week.

I am anxious to hear about you. Tell us about yourself. And again welcome to the group.

Take care,

Kim

NS Moderator