new to group

[Guest guest]

I mean next Sept.

Take care,

Lolly

Lap RNY 4-9-03 (proximal)

Dr. Reyes Mc, TX.

4-9-03=     291

5-12-03=  259

6-9-03=    244

7-9-03=    230

8-9-03= 216

9-9-03= 206

http://hometown.aol.com/precious9545/myhomepage/profile.htmlhttp://homet\

own.aol.com/precious9545/myhomepage/profile.html

*Until you love a poodle, a part of your soul remains unawakened.*

" If God brought you to it, he will bring you through it. "

[Guest guest]

I mean next Sept.

Take care,

Lolly

Lap RNY 4-9-03 (proximal)

Dr. Reyes Mc, TX.

4-9-03=     291

5-12-03=  259

6-9-03=    244

7-9-03=    230

8-9-03= 216

9-9-03= 206

http://hometown.aol.com/precious9545/myhomepage/profile.htmlhttp://homet\

own.aol.com/precious9545/myhomepage/profile.html

*Until you love a poodle, a part of your soul remains unawakened.*

" If God brought you to it, he will bring you through it. "

[Guest guest]

Hi ,

Welcome! I am not pregnant yet, but hoping!! I am 38 and had my RNY May 02. I

have lost 165 pounds. I have a son who is ten and had a miscarriage 5 years

ago. We have been TTC since May. I will go to my OB again tomorrow for a 6

month follow up. He wanted to see me after ttc for 6 months if no luck. I am

nervous because I thought I would be pregnant by now! I know there is a blood

test

for egg viability. I will get all the information tomorrow and pass it on.

Blessings,

anne

[Guest guest]

Hi ,

Welcome! I am not pregnant yet, but hoping!! I am 38 and had my RNY May 02. I

have lost 165 pounds. I have a son who is ten and had a miscarriage 5 years

ago. We have been TTC since May. I will go to my OB again tomorrow for a 6

month follow up. He wanted to see me after ttc for 6 months if no luck. I am

nervous because I thought I would be pregnant by now! I know there is a blood

test

for egg viability. I will get all the information tomorrow and pass it on.

Blessings,

anne

[Guest guest]

Hi ,

I had my first post-RNY baby in January. I got pregnant with him at only 7

weeks postop. My OB is a Maternal Fetal Medicine or Perinatalogist, (as I am

Epileptic), yet he had never had a WLS patient either. I lost 91 lbs during

my pregnancy and delivered a healthy 7lbs 13oz baby boy. My OB was very

upset about my weight loss, but after talking to my Bariatic surgeon and

reading teh OR report from my RNY he understood more. I know exactly how you

feel. My philosphy with it was, I will take my vitamins and eat as much

healthy foods that can benefit my baby. My OB did do extra US's to determine

that he was growing properly. Hang in there. I know how you feel!

Open RNY 2-18-03

359/143...135?

1-16-03

andra Marie (3-14-98, born stillborn at 36 weeks gestation following a

car accident)

New to group

> Hello everyone! I just joined today because I realized that I really

> needed to hear from other women that had gastric bypass and are now

> pregnant. I am almost 31 weeks now. My ob has never had a bypass

> patient before and is very stressed about my not gaining weight. At

> my first appt with her, I weighed 163 lbs and then by my next appt,

> it had dropped to 150 lbs. I am up to 158. She has sent me to a

> fetal-maternal med doc due to my advanced age (I am 36) and now she

> wants me to go back due checking the growth of the baby. I just had

> an ultra sound on Friday and they said the baby was at three pounds

> and 6 ounces. At this point I am ready to scream. I really want to

> change obs but I don't think that I can at this point. This is my

> first child and first pregnancy. I had my surgery 4/18/02 and

> weighed 320 lbs. at that time. Is there anyone that is going through

> this too?

>

> Thanks

> Kingsley

>

>

>

>

> Children are a blessing, and a gift from the Lord. -Psalm 127:3

>

>

[Guest guest]

I just had a long private discussion on with one of our in-house pros

about weight gain. She did some research and found info ranging from

gaining 1/2 pound to 3/4 per week toward the end, last month. So if you

do that as of now your baby would be at least 5 pounds 6 oz plus since

you are at week 31. Sounds good to me. Your OB needs to understand

some very simple math. You are losing more fat than the baby is

gaining. It's not that the baby isn't growing. On the other hand, I

think the more people you have watching you the better. So what the

hey, let him send you for further checks. As long as your insurance pays

and you have the time for the appointments, why not revel in all the

pros helping to insure you and the baby are healthy. And of course if

you don't, you have the right to refuse anything. It's your bod/babe.

Lenore

New to group

Hello everyone! I just joined today because I realized that I really

needed to hear from other women that had gastric bypass and are now

pregnant. I am almost 31 weeks now. My ob has never had a bypass

patient before and is very stressed about my not gaining weight. At

my first appt with her, I weighed 163 lbs and then by my next appt,

it had dropped to 150 lbs. I am up to 158. She has sent me to a

fetal-maternal med doc due to my advanced age (I am 36) and now she

wants me to go back due checking the growth of the baby. I just had

an ultra sound on Friday and they said the baby was at three pounds

and 6 ounces. At this point I am ready to scream. I really want to

change obs but I don't think that I can at this point. This is my

first child and first pregnancy. I had my surgery 4/18/02 and

weighed 320 lbs. at that time. Is there anyone that is going through

this too?

Thanks

Kingsley

Children are a blessing, and a gift from the Lord. -Psalm 127:3

[Guest guest]

Thank you for the welcome Kori!

His heel is still red even though his shoes have been off for a while. From

everything I've read and from talking to the ped's office, it was most

likely getting ready to form a blister or a sore. I check his feet every

time we take his shoes off and usually any red marks anywhere else do go

away, but this one isn't. At least it isn't getting worse, so I'm hoping

it's gone by tomorrow. He's generally okay with the shoes on, just gets mad

sometimes because of them, but his crying and screaming were different with

the blister and this red area, so I'm pretty sure he's in pain with it. I

want to put the shoes back on, but I dont' want him in any pain and I don't

want the area to develop into another blister or sore....it's definitley

tough being a new mom and having to deal with all this too. He's definitely

worth it though. : )

I do think the problem is not getting his heel all the way in the shoe

correctly. I did find your post with the tips and have that saved. I've

already gotten the laces ready to go. The tip about the knots is definitely

going to be helpful. I would have never thought to do that. I did find the

pictures too. Your daughter is a cutie! It looks the hole would definitely

be helpful and if he gets anymore red marks, I'll definitely be cutting a

hole in the shoes so I can make certain that his foot is in there properly.

I checked the bar and his heels are pretty much lined up with his shoulders.

The guy at the brace shop had actually widened it just a bit yesterday when

he put the straight last shoes on since is growing so fast.

He'll be 3 months old the 25th of this month and he has gone from 7 lbs 10

oz at birth to over 13 pounds and from 20 inches to 24 inches! His daddy is

tall though, so I'm sure he's going to be too. We have the red bar and with

the screw and the bolts, I'm not sure how easy it would be to get the shoes

off and then back on again, although I might get brave enough to try it one

of these days. We go back to the doctor in a month, so maybe I'll ask him

how easy it is and if he can show me how to do it.

I always thought that if you got his toes down by the front edge of the

shoes, that his heel would be where it was and stuff, but the guy at the

brace shop said no, that his heel wouldn't be all the way in postition

then....nice of them to tell me that after 7 weeks! Oh well, he'll be able

to walk and play normally when the time comes and that's the most important

thing. I just wish they would explain how to put these shoes on properly

instead of just pretty much letting you figure it out yourself. I didn't

know any better at the time and the only thing the brace guy told us was to

make sure we got them on as tight as we could.

and

Re: New to group

At 11:43 AM 6/14/2004, you wrote:

>Hello everyone. First off, sorry if you read this in the other group. : )

>My son was born on March 25, 2004 with bilateral clubfeet.

Congrats on your sweet and welcome!

actually - red is ok. It's dark/black/purple and water filled friction

blisters that you really need to worry about. Red is often just

irritation, but watch it closely. Darbi has red marks on the tops of her

feet and has since she got the new style shoes back in July last year. No

sores there yet, just red.

I think it will help - but I would hazard a guess that there's more to him

getting sores than reverse last shoes.

What width is the bar set at? What degree outward rotation are the shoes

set at? Which bar do you have? Have you tried putting the shoes on by

themselves (without the bar)?

I would not necessarily keep him out of the shoes if it were me. I imagine

there's some reason he's getting sore areas and that will need to be

rectified because even after it heals, if you're not getting them on

correctly it'll just come back. I would have to say that right now is the

time to work on fit and making sure they're not hurting him. Did you catch

the tips post I sent on Saturday? If not let me know and I'll send you a

copy. We had a neverending sore and I learned a lot getting through that.

Did you miss the post I sent on Saturday with tips? If you did let me know

and I'll fwd it to you. People seem to think it's got good info, worked

for us at least :~}

Can you take the shoes off the bar easy? If you can, try doing that when

you put them on. I think it helps immensely getting used to making sure

the shoes are on correctly.

There are some pics of Darb's holed shoes in the photos section on this

list IIRC - it's under Darbi. I also have copies if you can't find them -

they're on another puter so let me know and I'll send them on. I didn't

actually make the cut - the brace shop did it for us. Maybe yours can

too? You really can't ruin the shoes. They hold together remarkably well

after being cut open in the back. Ours never splayed open at all. Also,

they're kind of disposable anyway - you'll need a larger size in a few

months anyway so go ahead and cut it out. Just cut out the whole heel area

under the padding at the ankle. Use a sharp knife or an exacto knife.

Good luck and keep us informed. Let me know if you need pics of

holed shoes still. Keep up the good work mama and kiss on that babe of

yours lots :~}

Kori

Mama of

Kenton - 6/98

Merek - 3/00

Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

(¨`·.·´¨)

`·.¸(¨`·.·´¨)

`·.¸.·´

[Guest guest]

LOL I do that too, only it's usually repeating myself during a

conversation! : )

Re: New to group

duh! sorry I asked twice about the tips post. Can you tell I started this

at one time today and finished it much later? hehe

Kori

At 03:37 PM 6/14/2004, you wrote:

>At 11:43 AM 6/14/2004, you wrote:

> >Hello everyone. First off, sorry if you read this in the other group.

: )

> >My son was born on March 25, 2004 with bilateral clubfeet.

>

>Congrats on your sweet and welcome!

>

> >He

> >only needed three castings to correct his feet, didn't need the tenotomy,

> >and has been in his DBB for about 7 weeks now. He actually was out of

them

> >for about one week because he had developed a blister on one heel, so we

had

> >them off until it healed well enough to put the shoes back on. After a

week

> >and a half of them being back on, he has now developed a red mark on his

> >other heel, so the shoes will be off until that clears up and causes him

no

> >pain, hopeully only a day or so.

>

>actually - red is ok. It's dark/black/purple and water filled friction

>blisters that you really need to worry about. Red is often just

>irritation, but watch it closely. Darbi has red marks on the tops of her

>feet and has since she got the new style shoes back in July last year. No

>sores there yet, just red.

>

> > Thankfully, he didn't loose any of his

> >correction while his feet were out of the shoes, so hopefully he won't

loose

> >any this time either. He was in the curved shoes up until today. The

> >doctor gave us a prescription today for the straight last shoes and we

were

> >able to get them today. The doc said this should help prevent any

further

> >blisters. Has anyone else noticed this to be true?

>

>I think it will help - but I would hazard a guess that there's more to him

>getting sores than reverse last shoes.

>

>What width is the bar set at? What degree outward rotation are the shoes

>set at? Which bar do you have? Have you tried putting the shoes on by

>themselves (without the bar)?

>

>I would not necessarily keep him out of the shoes if it were me. I imagine

>there's some reason he's getting sore areas and that will need to be

>rectified because even after it heals, if you're not getting them on

>correctly it'll just come back. I would have to say that right now is the

>time to work on fit and making sure they're not hurting him. Did you catch

>the tips post I sent on Saturday? If not let me know and I'll send you a

>copy. We had a neverending sore and I learned a lot getting through that.

>

> >His feet still have

> >good dorsiflexion (10-20 degrees that Dr. Ponsetti says they should have)

> >and the doc says they're still corrected the way they should be. The

doctor

> >comes highly recommended and has been using the Ponsetti method for years

to

> >correct clubfeet, so I do trust him. I think we might not be getting his

> >heel seated in there correctly. Does anyone have any advice on how to

> >better accomplish this?

>

>Did you miss the post I sent on Saturday with tips? If you did let me know

>and I'll fwd it to you. People seem to think it's got good info, worked

>for us at least :~}

>

>Can you take the shoes off the bar easy? If you can, try doing that when

>you put them on. I think it helps immensely getting used to making sure

>the shoes are on correctly.

>

> > I've also heard about cutting holes in the backs of

> >the shoes, but I'm not sure how to go about doing that without destroying

> >the shoes or something. Are there instructions somewhere on how to do

that,

> >maybe along with some pictures so we know it's being done correctly?

>

>There are some pics of Darb's holed shoes in the photos section on this

>list IIRC - it's under Darbi. I also have copies if you can't find them -

>they're on another puter so let me know and I'll send them on. I didn't

>actually make the cut - the brace shop did it for us. Maybe yours can

>too? You really can't ruin the shoes. They hold together remarkably well

>after being cut open in the back. Ours never splayed open at all. Also,

>they're kind of disposable anyway - you'll need a larger size in a few

>months anyway so go ahead and cut it out. Just cut out the whole heel area

>under the padding at the ankle. Use a sharp knife or an exacto knife.

>

>Good luck and keep us informed. Let me know if you need pics of

>holed shoes still. Keep up the good work mama and kiss on that babe of

>yours lots :~}

>

>

>

>Kori

>Mama of

>Kenton - 6/98

>Merek - 3/00

>Darbi - 3/28/03 - Rt. CF - DBB 12hr/d

> (¨`·.·´¨)

> `·.¸(¨`·.·´¨)

> `·.¸.·´

>

>

>

>

>

[Guest guest]

,

Who are you seeing at Shriner's? There is one Ponseti Dr. there.

Something like Dr. Talawaker or something like that. I live in KY,

but we travel to St. Louis Shriner's. We were right in the middle of

the Lexington and St. Louis hospital and at the time was born

there was not a Ponseti Dr. on the Dr. Ponseti's list at Lexington.

We see Dr. Dobbs and I am so glad we found the right Dr.! He is

wonderful. Do you live in Muncie or do you drive there from

someplace else? It looks like St. Louis is about 90 miles farther

than Lexington from Muncie according to mapquest. Make sure you are

seeing the Ponseti Dr. at Lexington if your wanting to see if the

nonsurgical route will still work for you. Maybe it will since

Tyler's surgeries have only involved his achille tendons. Of course

he is 18 months old. I know Dr. Dobbs has treated kids at one-year-

old but I don't know how far past one. He does have experience with

older kids though and he is great. Our original appt was not with

Dr. Dobbs. But we were interested in the Ponseti method so we called

and had it changed. Good luck to you! If you have any questions let

me know.

Pam and (8-12-01)

> > > >

> > > > > Is Kai walking? My son has taken a couple steps but cannot

> > walk,

> > > > > that is why his doc said that if he is not walking by the

> time

> > > he is

> > > > > 18 months then he was thinking about the surgery.

> > > >

> > > >

> > > >

> > > >

[Guest guest]

,

Who are you seeing at Shriner's? There is one Ponseti Dr. there.

Something like Dr. Talawaker or something like that. I live in KY,

but we travel to St. Louis Shriner's. We were right in the middle of

the Lexington and St. Louis hospital and at the time was born

there was not a Ponseti Dr. on the Dr. Ponseti's list at Lexington.

We see Dr. Dobbs and I am so glad we found the right Dr.! He is

wonderful. Do you live in Muncie or do you drive there from

someplace else? It looks like St. Louis is about 90 miles farther

than Lexington from Muncie according to mapquest. Make sure you are

seeing the Ponseti Dr. at Lexington if your wanting to see if the

nonsurgical route will still work for you. Maybe it will since

Tyler's surgeries have only involved his achille tendons. Of course

he is 18 months old. I know Dr. Dobbs has treated kids at one-year-

old but I don't know how far past one. He does have experience with

older kids though and he is great. Our original appt was not with

Dr. Dobbs. But we were interested in the Ponseti method so we called

and had it changed. Good luck to you! If you have any questions let

me know.

Pam and (8-12-01)

> > > >

> > > > > Is Kai walking? My son has taken a couple steps but cannot

> > walk,

> > > > > that is why his doc said that if he is not walking by the

> time

> > > he is

> > > > > 18 months then he was thinking about the surgery.

> > > >

> > > >

> > > >

> > > >

[Guest guest]

, We saw Dr.Talwalker in Lexington Shriner one time. They put

Isabella's brace at almost 90 degrees. She never complained and I

told them that it looked way to far and they said oh no it is fine.

Well Isabella started walking on the sides of her feet really bad.

Then Dr.Talwalker was telling us how he supposidly uses the ponsetti

method but he said that at age 2 years old he does a tendon transfer

on his patients. It didn't settle right with me so I emailed

Dr.Ponseti all this info and he said oh no she will not need a tendon

transfer that Dr.Talwalker says he uses the ponseti method but hasn't

sent in all the info to be put on the list of ponseti trained

Doctors. The nearest ponseti doctor was Dr.Dobbs at shriners St.Louis

and when he saw Isabella's feet he was oh my they are at almost 90

degrees. He put them back at 70 and she hasn't had any problems

since. He also said he hasn't done a tendon transfer on any of his

patients. So please be careful going there and make sure you look and

question everything. I am sure other people have had good expierences

with Shriners Lexington and Dr.Talwalker. I personally didn't and

won't go back.

Best of Luck

Mommy to Isabella 10-12-02 bilateral cf

> > > > >

> > > > > > Is Kai walking? My son has taken a couple steps but

cannot

> > > walk,

> > > > > > that is why his doc said that if he is not walking by the

> > time

> > > > he is

> > > > > > 18 months then he was thinking about the surgery.

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

, We saw Dr.Talwalker in Lexington Shriner one time. They put

Isabella's brace at almost 90 degrees. She never complained and I

told them that it looked way to far and they said oh no it is fine.

Well Isabella started walking on the sides of her feet really bad.

Then Dr.Talwalker was telling us how he supposidly uses the ponsetti

method but he said that at age 2 years old he does a tendon transfer

on his patients. It didn't settle right with me so I emailed

Dr.Ponseti all this info and he said oh no she will not need a tendon

transfer that Dr.Talwalker says he uses the ponseti method but hasn't

sent in all the info to be put on the list of ponseti trained

Doctors. The nearest ponseti doctor was Dr.Dobbs at shriners St.Louis

and when he saw Isabella's feet he was oh my they are at almost 90

degrees. He put them back at 70 and she hasn't had any problems

since. He also said he hasn't done a tendon transfer on any of his

patients. So please be careful going there and make sure you look and

question everything. I am sure other people have had good expierences

with Shriners Lexington and Dr.Talwalker. I personally didn't and

won't go back.

Best of Luck

Mommy to Isabella 10-12-02 bilateral cf

> > > > >

> > > > > > Is Kai walking? My son has taken a couple steps but

cannot

> > > walk,

> > > > > > that is why his doc said that if he is not walking by the

> > time

> > > > he is

> > > > > > 18 months then he was thinking about the surgery.

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Robin,

You are right, Dr Mosca is a wonderful doctor. Being in the Ponseti method for

4-5 years has given him alot of experience, and he is open to saying he was

wrong or dod not know and learning from the experience, which is great. I still

do not fully agree with his bracing time, but that is a small thing that I can

deal with ;-)

I am so glad to hear the Rose's foot is doing so good! The skin will eventually

be normal, and the tenotomy scar will fade (I really cant see Kai's).

Thank you for thinking of us. I am very afraid that the blister may have been

from Kai's foot relapsing. Last night he woke up in the middle of the night and

the brace was causing him pain, so I had to take it off, and I can really see

and feel the difference now. As much as I know we did the right thing taking

the shoes off for the blister to heal, I think it allowed a mild relapse to turn

major :-( Kai loves his shoes, and even when his foot was not fully corrected

and he was in the shoes 23/7 he never complained, so I know something is not

right.

Angel

new to group

> >

> >

> > Hi my name is and I have a son with Bi-lateral club

feet.

> > His name is Tyler. He is now 18 months and we have been through

3

> > surgeries, countless castings, braces and dennis brown shoes

with

> > bar. His doc says if he is not walking this month he is

thinking

> of

> > doing another surgery. I looked on the internet and found a

place

> > here that helps kids with special needs and found that they came

> to

> > the house and now has started physical therepy. In my searches

on

> > the internet I also found Shriner's hospital. I have gotten him

> an

> > appt. hoping to get a second opinion. This last pair of shoes

his

> > doc put him in knowing that his heel did not fit into the bottom

> of

> > the shoe. His doc even took xrays and seen that his heel was

not

> > fitting into the shoe and he said to just let it go for a month

> and

> > hope that the shoes with the bar would help. I didn't think

this

> > was right. Tyler has not wore the shoes in the past couple of

> weeks

> > cause they do not fit right. I am hoping that not too much

damage

> > will have been done. He goes to the Shriner's hospital the 27th

of

> > this month. I just don't want to go back to his regular

> orthopedic

> > doc cause I don't want him to do surgery on Tyler. He is an

> > pediatric orthopedic surgeon so I think that his first thought

is

> > surgery and I am hoping maybe correction can be obtained in

> another

> > way. I was just wondering if anyone else has had probs with

docs

> > like this? I also thought it would be good to know that we are

> not

> > alone in going through what we have and will go through.

> >

> >

> > thanks

> >

> >

> >

> >

> >

> >

[Guest guest]

Robin,

You are right, Dr Mosca is a wonderful doctor. Being in the Ponseti method for

4-5 years has given him alot of experience, and he is open to saying he was

wrong or dod not know and learning from the experience, which is great. I still

do not fully agree with his bracing time, but that is a small thing that I can

deal with ;-)

I am so glad to hear the Rose's foot is doing so good! The skin will eventually

be normal, and the tenotomy scar will fade (I really cant see Kai's).

Thank you for thinking of us. I am very afraid that the blister may have been

from Kai's foot relapsing. Last night he woke up in the middle of the night and

the brace was causing him pain, so I had to take it off, and I can really see

and feel the difference now. As much as I know we did the right thing taking

the shoes off for the blister to heal, I think it allowed a mild relapse to turn

major :-( Kai loves his shoes, and even when his foot was not fully corrected

and he was in the shoes 23/7 he never complained, so I know something is not

right.

Angel

new to group

> >

> >

> > Hi my name is and I have a son with Bi-lateral club

feet.

> > His name is Tyler. He is now 18 months and we have been through

3

> > surgeries, countless castings, braces and dennis brown shoes

with

> > bar. His doc says if he is not walking this month he is

thinking

> of

> > doing another surgery. I looked on the internet and found a

place

> > here that helps kids with special needs and found that they came

> to

> > the house and now has started physical therepy. In my searches

on

> > the internet I also found Shriner's hospital. I have gotten him

> an

> > appt. hoping to get a second opinion. This last pair of shoes

his

> > doc put him in knowing that his heel did not fit into the bottom

> of

> > the shoe. His doc even took xrays and seen that his heel was

not

> > fitting into the shoe and he said to just let it go for a month

> and

> > hope that the shoes with the bar would help. I didn't think

this

> > was right. Tyler has not wore the shoes in the past couple of

> weeks

> > cause they do not fit right. I am hoping that not too much

damage

> > will have been done. He goes to the Shriner's hospital the 27th

of

> > this month. I just don't want to go back to his regular

> orthopedic

> > doc cause I don't want him to do surgery on Tyler. He is an

> > pediatric orthopedic surgeon so I think that his first thought

is

> > surgery and I am hoping maybe correction can be obtained in

> another

> > way. I was just wondering if anyone else has had probs with

docs

> > like this? I also thought it would be good to know that we are

> not

> > alone in going through what we have and will go through.

> >

> >

> > thanks

> >

> >

> >

> >

> >

> >

[Guest guest]

Thank you so much for the info. I am not sure who we are going to

see when we get there yet. If I have to I will go to St.Louis or I

have even talked with my hubby about , if things don't go well in

Lexington, taking Tyler to Dr. Ponseti. It would be quite a drive,

but after all Tyler has been through with his first doc I don't want

him to have to go through anymore unecessary procedures. We have

been dealing with this since birth. His left foot is starting to

turn in already since he is not in his dbb. So I am afraid that all

the work that has been done has been lost. His right foot doesn't

look as bad, but he is still having trouble walking. It seems like

one of his legs are longer then the other also, I asked his other

doc and he said they were not but when Tyler walks he keeps his

right foot up and his left flat on the floor. His pt thinks like I

do that they are differant lengths. She asked if his doc did xrays

and bone measurements, he didn't. So I am looking forward to

getting another docs opinion.

Tyler's mom

bi lat cf 1/14/03

-- In nosurgery4clubfoot , " "

wrote:

> , We saw Dr.Talwalker in Lexington Shriner one time. They

put

> Isabella's brace at almost 90 degrees. She never complained and I

> told them that it looked way to far and they said oh no it is

fine.

> Well Isabella started walking on the sides of her feet really bad.

> Then Dr.Talwalker was telling us how he supposidly uses the

ponsetti

> method but he said that at age 2 years old he does a tendon

transfer

> on his patients. It didn't settle right with me so I emailed

> Dr.Ponseti all this info and he said oh no she will not need a

tendon

> transfer that Dr.Talwalker says he uses the ponseti method but

hasn't

> sent in all the info to be put on the list of ponseti trained

> Doctors. The nearest ponseti doctor was Dr.Dobbs at shriners

St.Louis

> and when he saw Isabella's feet he was oh my they are at almost 90

> degrees. He put them back at 70 and she hasn't had any problems

> since. He also said he hasn't done a tendon transfer on any of his

> patients. So please be careful going there and make sure you look

and

> question everything. I am sure other people have had good

expierences

> with Shriners Lexington and Dr.Talwalker. I personally didn't and

> won't go back.

>

> Best of Luck

>

> Mommy to Isabella 10-12-02 bilateral cf

>

>

>

>

>

>

>

> > > > > >

> > > > > > > Is Kai walking? My son has taken a couple steps but

> cannot

> > > > walk,

> > > > > > > that is why his doc said that if he is not walking by

the

> > > time

> > > > > he is

> > > > > > > 18 months then he was thinking about the surgery.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Me too. Kaitlin never had a 3 wk cast.

Freeman

[Guest guest]

Hi Doug, So sorry you had get sick to join us. But again this is the

best group of people around. Friendly, helpful and so full of support.

Any info you need and support, you have come to the right place. I too

have colon cancer that runs in my family. Stage 111 and undergoing

Chemo. Hoping you get to make new friends here and join us in our

posts. Ingrid

>

> Hi Group,

>

> I`m just getting started here and wanted to say hi. I just got home

> from the hospital on Wed. from having my first round of surgery for

> colon caner, going back in a few month for a reversal after I have a

> few rounds of kemo.

> Alittle about me, I`m a 40 yr old male, have a family history of

FAP,

> my mom and 3 brothers all have it, so I kinda knew it was coming, but

> still finding it had to deal with it right now, hate putting my new

> wife and kids thru this even tho she knew I had the possiblity of

> having this. So any advice would be appercaited.

> Hope to be able to chat with you all and have a great weekend.

>

>

> Doug

[Guest guest]

Hi Doug, So sorry you had get sick to join us. But again this is the

best group of people around. Friendly, helpful and so full of support.

Any info you need and support, you have come to the right place. I too

have colon cancer that runs in my family. Stage 111 and undergoing

Chemo. Hoping you get to make new friends here and join us in our

posts. Ingrid

>

> Hi Group,

>

> I`m just getting started here and wanted to say hi. I just got home

> from the hospital on Wed. from having my first round of surgery for

> colon caner, going back in a few month for a reversal after I have a

> few rounds of kemo.

> Alittle about me, I`m a 40 yr old male, have a family history of

FAP,

> my mom and 3 brothers all have it, so I kinda knew it was coming, but

> still finding it had to deal with it right now, hate putting my new

> wife and kids thru this even tho she knew I had the possiblity of

> having this. So any advice would be appercaited.

> Hope to be able to chat with you all and have a great weekend.

>

>

> Doug

[Guest guest]

Hi Doug, So sorry you had get sick to join us. But again this is the

best group of people around. Friendly, helpful and so full of support.

Any info you need and support, you have come to the right place. I too

have colon cancer that runs in my family. Stage 111 and undergoing

Chemo. Hoping you get to make new friends here and join us in our

posts. Ingrid

>

> Hi Group,

>

> I`m just getting started here and wanted to say hi. I just got home

> from the hospital on Wed. from having my first round of surgery for

> colon caner, going back in a few month for a reversal after I have a

> few rounds of kemo.

> Alittle about me, I`m a 40 yr old male, have a family history of

FAP,

> my mom and 3 brothers all have it, so I kinda knew it was coming, but

> still finding it had to deal with it right now, hate putting my new

> wife and kids thru this even tho she knew I had the possiblity of

> having this. So any advice would be appercaited.

> Hope to be able to chat with you all and have a great weekend.

>

>

> Doug

[Guest guest]

Hi Doug!

Welcome! I'm Winnie, 38F, surgery on March 1st for Rectal CA,

colostomy; chemo will start on April 21st. We are here to support each

other many of us going through similiar chemotherapy treatments.

Check in often!

>

> Hi Group,

>

> I`m just getting started here and wanted to say hi. I just got home

> from the hospital on Wed. from having my first round of surgery for

> colon caner, going back in a few month for a reversal after I have a

> few rounds of kemo.

> Alittle about me, I`m a 40 yr old male, have a family history of

FAP,

> my mom and 3 brothers all have it, so I kinda knew it was coming, but

> still finding it had to deal with it right now, hate putting my new

> wife and kids thru this even tho she knew I had the possiblity of

> having this. So any advice would be appercaited.

> Hope to be able to chat with you all and have a great weekend.

>

>

> Doug

[Guest guest]

Hi Doug!

Welcome! I'm Winnie, 38F, surgery on March 1st for Rectal CA,

colostomy; chemo will start on April 21st. We are here to support each

other many of us going through similiar chemotherapy treatments.

Check in often!

>

> Hi Group,

>

> I`m just getting started here and wanted to say hi. I just got home

> from the hospital on Wed. from having my first round of surgery for

> colon caner, going back in a few month for a reversal after I have a

> few rounds of kemo.

> Alittle about me, I`m a 40 yr old male, have a family history of

FAP,

> my mom and 3 brothers all have it, so I kinda knew it was coming, but

> still finding it had to deal with it right now, hate putting my new

> wife and kids thru this even tho she knew I had the possiblity of

> having this. So any advice would be appercaited.

> Hope to be able to chat with you all and have a great weekend.

>

>

> Doug

[Guest guest]

Hi Doug!

Welcome! I'm Winnie, 38F, surgery on March 1st for Rectal CA,

colostomy; chemo will start on April 21st. We are here to support each

other many of us going through similiar chemotherapy treatments.

Check in often!

>

> Hi Group,

>

> I`m just getting started here and wanted to say hi. I just got home

> from the hospital on Wed. from having my first round of surgery for

> colon caner, going back in a few month for a reversal after I have a

> few rounds of kemo.

> Alittle about me, I`m a 40 yr old male, have a family history of

FAP,

> my mom and 3 brothers all have it, so I kinda knew it was coming, but

> still finding it had to deal with it right now, hate putting my new

> wife and kids thru this even tho she knew I had the possiblity of

> having this. So any advice would be appercaited.

> Hope to be able to chat with you all and have a great weekend.

>

>

> Doug

[Guest guest]

Hi,

I am new here and not even sure if this is what I have. I need info.

I've been diagnosed with sarcoidosis for 4 or 5 years now. Started in

one eye then the lymph nodes and lung thing. Then problem with muscles

and joints. Excercise became impossible,living day to day, as I'm sure

you all know. anyway, i started with double vision and dizziness that

my primaary thinks is neurologic in nature and I'm going to a neuro in

a couple of weeks. Anybody else have this as a presenting problem??

Also I'm having problems with coordination and walking/driving.

I had some neuro workups when I was early in my diagnosis butr my

sarcoid was never diagnosed with a biopsy so there's always been a

question if it truly is sarc. Now, I'm concerned. Any feed back will be

most appreciated.

Thanks,

] Bonnie

[Guest guest]

Hi, Bonnie. Welcome to the group. Before I forget to tell you, there are

some great links, if you scroll down past the bottom of your original

message. You said you had sarc in the lymph nodes & lungs; did you have

any biopsies? Have you been treated with Prednisone or any other drugs?

How long have you had the dizziness, double vision, coordination problems,

etc? The tricky thing about neurosarc is that it can present in so many

different ways. I was diagnosed with sarc by a biopsy of lymph nodes in my

chest in 1994. My lungs were clear & I had no symptoms, so everybody

pretty well forgot about it. 5 years later, I had sudden hearing loss in

the right ear, then 5 months later a left Bell's palsy, then hearing loss

in the left ear a month after that. We know now that this was all a result

of cranial nerve involvement by the sarc, but at the time, it was all

chalked up to viruses. Then a year later I started having weird systemic

symptoms: feeling like cobwebs on my face, severe fatigue & muscle

weakness, weight loss, balance problems, tremors, another Bell's palsy, leg

pain & electric shock sensations, vertigo, trigeminal neuralgia, &

eventually numbness & burning pain in my feet. Most of these symptoms were

again blamed on a virus by my PCP. I finally saw a neurologist in spring

2001, who thought it was NS. But even with this history, plus a lung

biopsy positive for sarc, he was reluctant to treat because the spinal tap,

MRI, labs, etc. were normal. (I recently saw a sarc specialist at the

Univ. of Cincinnati who said my spinal tap was not normal). I didn't get

treated for another year, after I paid out-of-pocket to see a specialist in

Atlanta. So they basically have to rule out any other cause of your

symptoms, & if you have a biopsy of anything (nodes, lung, skin) positive

for sarc, it's more likely someone will make the call of neurosarc. It can

be exceedingly frustrating; others will share their stories & give you

additional info. That's why it's so important to get all the info you can.

Most doctors, even most neurologists, are not up to date on NS. Hope this

gives you a start & didn't overwhelm you. Again, welcome. Rose, moderator

Original Message:

-----------------

From: Bonnie Pearson quiltenbe@...

Date: Tue, 21 Jun 2005 02:09:10 -0000

To: Neurosarcoidosis

Subject: new to group

Hi,

I am new here and not even sure if this is what I have. I need info.

I've been diagnosed with sarcoidosis for 4 or 5 years now. Started in

one eye then the lymph nodes and lung thing. Then problem with muscles

and joints. Excercise became impossible,living day to day, as I'm sure

you all know. anyway, i started with double vision and dizziness that

my primaary thinks is neurologic in nature and I'm going to a neuro in

a couple of weeks. Anybody else have this as a presenting problem??

Also I'm having problems with coordination and walking/driving.

I had some neuro workups when I was early in my diagnosis butr my

sarcoid was never diagnosed with a biopsy so there's always been a

question if it truly is sarc. Now, I'm concerned. Any feed back will be

most appreciated.

Thanks,

] Bonnie

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi, Bonnie. Welcome to the group. Before I forget to tell you, there are

some great links, if you scroll down past the bottom of your original

message. You said you had sarc in the lymph nodes & lungs; did you have

any biopsies? Have you been treated with Prednisone or any other drugs?

How long have you had the dizziness, double vision, coordination problems,

etc? The tricky thing about neurosarc is that it can present in so many

different ways. I was diagnosed with sarc by a biopsy of lymph nodes in my

chest in 1994. My lungs were clear & I had no symptoms, so everybody

pretty well forgot about it. 5 years later, I had sudden hearing loss in

the right ear, then 5 months later a left Bell's palsy, then hearing loss

in the left ear a month after that. We know now that this was all a result

of cranial nerve involvement by the sarc, but at the time, it was all

chalked up to viruses. Then a year later I started having weird systemic

symptoms: feeling like cobwebs on my face, severe fatigue & muscle

weakness, weight loss, balance problems, tremors, another Bell's palsy, leg

pain & electric shock sensations, vertigo, trigeminal neuralgia, &

eventually numbness & burning pain in my feet. Most of these symptoms were

again blamed on a virus by my PCP. I finally saw a neurologist in spring

2001, who thought it was NS. But even with this history, plus a lung

biopsy positive for sarc, he was reluctant to treat because the spinal tap,

MRI, labs, etc. were normal. (I recently saw a sarc specialist at the

Univ. of Cincinnati who said my spinal tap was not normal). I didn't get

treated for another year, after I paid out-of-pocket to see a specialist in

Atlanta. So they basically have to rule out any other cause of your

symptoms, & if you have a biopsy of anything (nodes, lung, skin) positive

for sarc, it's more likely someone will make the call of neurosarc. It can

be exceedingly frustrating; others will share their stories & give you

additional info. That's why it's so important to get all the info you can.

Most doctors, even most neurologists, are not up to date on NS. Hope this

gives you a start & didn't overwhelm you. Again, welcome. Rose, moderator

Original Message:

-----------------

From: Bonnie Pearson quiltenbe@...

Date: Tue, 21 Jun 2005 02:09:10 -0000

To: Neurosarcoidosis

Subject: new to group

Hi,

I am new here and not even sure if this is what I have. I need info.

I've been diagnosed with sarcoidosis for 4 or 5 years now. Started in

one eye then the lymph nodes and lung thing. Then problem with muscles

and joints. Excercise became impossible,living day to day, as I'm sure

you all know. anyway, i started with double vision and dizziness that

my primaary thinks is neurologic in nature and I'm going to a neuro in

a couple of weeks. Anybody else have this as a presenting problem??

Also I'm having problems with coordination and walking/driving.

I had some neuro workups when I was early in my diagnosis butr my

sarcoid was never diagnosed with a biopsy so there's always been a

question if it truly is sarc. Now, I'm concerned. Any feed back will be

most appreciated.

Thanks,

] Bonnie

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database