Re: Our Stories

[Guest guest]

In a message dated 11/10/1999 3:06:08 PM Pacific Standard Time,

Arto.Toikka@... writes:

<< There´s a place on RPers´ (Roy´s) Web site for " My story " ´s and you can

find a

couple of them there. My " My story " is still under construction - " coming

soon " .

Maybe we could wake up this old " tradition " ?

Arto >>

Great idea Arto. Perhaps when you send in letters if you want it included on

the site just let us know.

I am going to use Arto's other suggestion as an easy out here. s story

is posted on the site.

I will give a real quick summary.

first had symptoms about 19 years ago. first diagnosed as lupus.

Then she started having eye problems. Dr in Boston changed the Dx to

RP. THat was 11 years ago.

Since then her right eye got a lot worse, scleritis and retina problems.

They gave up on it and it was removed. Within a year her other eye stopped

working. No idea why. Just slowy faded to black. that was in 95. SInce then

she has been up and down on her health. No further progression that we are

aware of. Currently she is doing really well.

Roy

[Guest guest]

In a message dated 11/11/1999 6:31:21 AM Pacific Standard Time,

lotastuf@... writes:

<< Christy

I love to give homemade gifts... which one of my kids do you want? >>

What a great idea. LOL

You might have saved me a lot of shopping time. : )

[Guest guest]

I've been out of the loop here the last couple of days!! Things have

been busy, and I've only had time to read the emails instead of

responding!! Now, I am SO behind!!! Well, this is Rose's story....if

you would like to read the other version and see pictures, the link is

below my signature.

When Rose was born, the on-call orthopedic doctor came and checked her

foot. He showed us a manipulation that we were to do on her foot with

each diaper change until she got casted. She was casted at ten days

old in a short, below the knee, plaster cast. He told us that casting

should do the correction, but we'd be sent to another doctor at 2 months

if it didn't to be evaluated for surgery. A doctor who specialized in

working with clubfeet. The ortho also told us that in all his 12 (?)

years of practice, he'd only seen about 6 clubfeet, and he was seeing 2

in the last month!! Should've been my first clue.

We were supposed to go each week for a cast change, but the 2nd time we

went back, the ortho was so pleased she hadn't kicked the cast off, that

he said we could come back in 2 weeks. Well, when she was 2.5 months,

we were referred to the pediatric orthopedic doctor in Marshfield.

The ped ortho said that Rose would most likely need surgery being that

there wasn't a lot of correction. He liked to perform the operation at

6-7 months of age. He performed surgery 90% of the time. He also told

us that Dr. L (1st doctor) had been casting Rose incorrectly. He said

that they should be above the knee to maintain correction. He also used

a fiberglass cast. He sent us home some casting material for Dr. L to

use because he wanted us to go to Dr. L every other casting. He didn't

want us to have to drive so far, I guess (2.5 hours).

I continued to grow very frustrated. Dr. L was obviously very inept

because his casts looked nothing like Dr. J's (2nd doctor), and he was

so nervous. (Btw, casting was always very upsetting to Rose. Lots of

screaming and extremely messy diapers. Only 2 occasions that I can

remember where she didn't scream, and that was with Dr. J) Well, I

finally chanced on Dr. Ponseti's site. I cried when I read it because I

was so frustrated with the treatment she had been receiving up to this

point. I also felt that it was too late. I brought Dr. Ponseti up to

Dr. J, and he did not agree with Ponseti's method. He told us that

there was a high occurence of rocker bottom feet when we asked about the

difference of 90% and 5% needing surgery. He took out her xrays and

showed us how it was " impossible " for her foot to be corrected with just

casting. I walked out discouraged and resigned to surgery. The date

was set.

Well, I decided one day to go back to Dr. Ponseti's site to see if I

could understand more fo it. I then did more searches. That is when I

found parentsplace and Club Foot. I posted a message regarding my

concerns and received a wonderful response and was encouraged to seek

2nd or 3rd opinions. One of them being none other than !!

(THANK YOU, !) sent me a long letter regarding Ponseti's

treatment and encouraged me to contact Dr. Ponseti. So I worked up the

nerve and called Dr. Ponseti! He talked to me for about 20 minutes. An

appointment was scheduled for a week later, and he told me she would

only have a 50/50 chance of correction. Boy, was my husband surprised

when he came in from doing some fieldwork that we were going to Iowa in

a week! We live in Wisconsin, so it's about a 6 hour drive (without

stopping, but with a baby.....)

Well, Rose had 11 casts prior to seeing Dr. Ponseti. Dr. Ponseti said

that since Rose was older, she might experience a little more discomfort

with the manipulation and casting. Boy, did she cry with that

manipulation. But what I saw was so amazing because he had her foot in

such a corrected position that had never been achieved before! After

Dr. Ponseti manipulated her foot, he said I could nurse her to calm her

down. It was really sweet of him because it really helped. When he

returned, she was still quite afraid of him, but he let her play with

the plaster while he put the cast on, and she was actually fairly calm!!

Well, the next week we went back for a cast change. Dr. Ponseti was so

pleased with the results that he said she could have the heel cord

tenotomy that day!!! Well, it took about 10 minutes or so while I

waited in the waiting room. When I returned she was hiccuping, and had a

new cast on. She really let it loose when she saw me. Good thing my

mom was with me to get instructions. I believe she had a local, and we

gave her some children's tylenol (or something) before the procedure.

So she had a total of two casts from Dr. Ponseti. She is now wearing

the bar with the shoes at nap/bedtime. She is going to be a year old

(already!) on the 30th of this month! She is walking around stuff and

pushing stuff around, with and without the brace.

Well, this is long enough!! On her website, I have a timeframe, but we

started to see Dr. Ponseti when Rose was 6 months old, and it is so

exciting that this method worked for her.

Joy, Neil, and Rose

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Joy,

Thanks for the responce. Ivy's Dr. is pleased with

her correction and she is out of cast. She is in a

type of AFO. I am concerned about her heal. Did Rose

have a heal deep heal crease? Does she still?

I am also encoraged about the results you had with Dr.

Ponseti with Rose seeing him at six months.

Ps What a wonderful name your daughter has.

Sara

--- Joy Shipley wrote:

> From: joybelle15@... (Joy Shipley)

>

> I've been out of the loop here the last couple of

> days!! Things have

> been busy, and I've only had time to read the emails

> instead of

> responding!! Now, I am SO behind!!! Well, this is

> Rose's story....if

> you would like to read the other version and see

> pictures, the link is

> below my signature.

>

> When Rose was born, the on-call orthopedic doctor

> came and checked her

> foot. He showed us a manipulation that we were to

> do on her foot with

> each diaper change until she got casted. She was

> casted at ten days

> old in a short, below the knee, plaster cast. He

> told us that casting

> should do the correction, but we'd be sent to

> another doctor at 2 months

> if it didn't to be evaluated for surgery. A doctor

> who specialized in

> working with clubfeet. The ortho also told us that

> in all his 12 (?)

> years of practice, he'd only seen about 6 clubfeet,

> and he was seeing 2

> in the last month!! Should've been my first clue.

>

> We were supposed to go each week for a cast change,

> but the 2nd time we

> went back, the ortho was so pleased she hadn't

> kicked the cast off, that

> he said we could come back in 2 weeks. Well, when

> she was 2.5 months,

> we were referred to the pediatric orthopedic doctor

> in Marshfield.

>

> The ped ortho said that Rose would most likely need

> surgery being that

> there wasn't a lot of correction. He liked to

> perform the operation at

> 6-7 months of age. He performed surgery 90% of the

> time. He also told

> us that Dr. L (1st doctor) had been casting Rose

> incorrectly. He said

> that they should be above the knee to maintain

> correction. He also used

> a fiberglass cast. He sent us home some casting

> material for Dr. L to

> use because he wanted us to go to Dr. L every other

> casting. He didn't

> want us to have to drive so far, I guess (2.5

> hours).

>

> I continued to grow very frustrated. Dr. L was

> obviously very inept

> because his casts looked nothing like Dr. J's (2nd

> doctor), and he was

> so nervous. (Btw, casting was always very upsetting

> to Rose. Lots of

> screaming and extremely messy diapers. Only 2

> occasions that I can

> remember where she didn't scream, and that was with

> Dr. J) Well, I

> finally chanced on Dr. Ponseti's site. I cried when

> I read it because I

> was so frustrated with the treatment she had been

> receiving up to this

> point. I also felt that it was too late. I brought

> Dr. Ponseti up to

> Dr. J, and he did not agree with Ponseti's method.

> He told us that

> there was a high occurence of rocker bottom feet

> when we asked about the

> difference of 90% and 5% needing surgery. He took

> out her xrays and

> showed us how it was " impossible " for her foot to be

> corrected with just

> casting. I walked out discouraged and resigned to

> surgery. The date

> was set.

>

> Well, I decided one day to go back to Dr. Ponseti's

> site to see if I

> could understand more fo it. I then did more

> searches. That is when I

> found parentsplace and Club Foot. I posted a

> message regarding my

> concerns and received a wonderful response and was

> encouraged to seek

> 2nd or 3rd opinions. One of them being none other

> than !!

> (THANK YOU, !) sent me a long letter

> regarding Ponseti's

> treatment and encouraged me to contact Dr. Ponseti.

> So I worked up the

> nerve and called Dr. Ponseti! He talked to me for

> about 20 minutes. An

> appointment was scheduled for a week later, and he

> told me she would

> only have a 50/50 chance of correction. Boy, was my

> husband surprised

> when he came in from doing some fieldwork that we

> were going to Iowa in

> a week! We live in Wisconsin, so it's about a 6

> hour drive (without

> stopping, but with a baby.....)

>

> Well, Rose had 11 casts prior to seeing Dr. Ponseti.

> Dr. Ponseti said

> that since Rose was older, she might experience a

> little more discomfort

> with the manipulation and casting. Boy, did she cry

> with that

> manipulation. But what I saw was so amazing because

> he had her foot in

> such a corrected position that had never been

> achieved before! After

> Dr. Ponseti manipulated her foot, he said I could

> nurse her to calm her

> down. It was really sweet of him because it really

> helped. When he

> returned, she was still quite afraid of him, but he

> let her play with

> the plaster while he put the cast on, and she was

> actually fairly calm!!

>

> Well, the next week we went back for a cast change.

> Dr. Ponseti was so

> pleased with the results that he said she could have

> the heel cord

> tenotomy that day!!! Well, it took about 10 minutes

> or so while I

> waited in the waiting room. When I returned she was

> hiccuping, and had a

> new cast on. She really let it loose when she saw

> me. Good thing my

> mom was with me to get instructions. I believe she

> had a local, and we

> gave her some children's tylenol (or something)

> before the procedure.

>

> So she had a total of two casts from Dr. Ponseti.

> She is now wearing

> the bar with the shoes at nap/bedtime. She is going

> to be a year old

> (already!) on the 30th of this month! She is

> walking around stuff and

> pushing stuff around, with and without the brace.

>

> Well, this is long enough!! On her website, I have

> a timeframe, but we

> started to see Dr. Ponseti when Rose was 6 months

> old, and it is so

> exciting that this method worked for her.

>

> Joy, Neil, and Rose

>

>

>

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

>

>

> ---------------------------