Introduction

December 2, 2001

Dear nie and Thank you so much for the welcome. And nie

thanks for reminding me to keep my chins up and my boobs out...now

THAT I can do!

Love

Lydia

preop Dr. Anthone

Los Angeles.

BMI 48

-- In duodenalswitch@y..., " " <mapage1962@y...> wrote:

> Welcome, Lydia! Feel free to jump in at any time!

> P

> psot-op 05-30-01

> Dr. Kim, Ocean Spgs, MS

> pre-op 330, current 235, down 95 lbs!

December 4, 2001

Dear Lydia:

First of all welcome, take a seat, put your feet up and join in or sip tea

have a cup of coffee.

Secondly you have chosen the greatest surgeon! Now I will admit to being a

wee bit bias but what the hell the man gave me the tools to have a new and

healthier life and besides he is so dang cute! He also has a beautiful wife

and 6 (yes I said 6) of the cutest kids!

Being depressed is so easy to get into, we are isolated, can't or don't

want to go out into public, (just don't want to deal with the pain in the

butt public).

I had my surgery 3 years ago this Jan. 13th, my stats are under my name in

the signature line but the bottom line is I was 52 years old, 6 ft and

weighed 384 pounds on the day of surgery and today I am 157 pounds and wear a

size 12-14.

Please ask any questions you may have I would be more than glad to help if

I can.

Now you remember that you have taken a step that requires a whole lot of

guts and fortitude and you are doing it for yourself, your children and those

grandbabies. You will be here for them and yourself so you hold your head up

high and remember how strong you are being and the wonderful gift you are

giving yourself and your family.

You will be able to do things you haven't done for a long time, walk

without pain or feeling like you can't take one more step, energy!! I cannot

even tell you how much energy you will have to walk, play, shop, clean house!

Yep even cleaning house will be fun just because you can!

I will be down in LA from around Dec. 28th until Jan. 2nd so if you would

like to grab lunch while I am down let me know.

If you want to e-mail me privately my address is IWriteOnTwo@... and if

you just need someone to call so you can hear a real voice then send me your

phone number and I will give you a call too.

You hang in there and please know you are being so very strong and brave

and being good to yourself so you tell that depression to take a hike! That

you are way to busy making your life safer and filled with fun and have no

room to be unhappy.

Huggles.

Tiger Lake

Female

160 lbs. BMI 21.7

224lbs gone

165 1/2 inches gone

6' -- 53yrs young

Dr. Anthone@USC So. Calif.

Open DS

Surgery 1/13/99 384lbs BMI 51.21

Last Visit 4/20/99 315.5 BMI 42.07

7/19/99 274.8 BMI 36.64

9/03/99 259.3 BMI 34.54

10/04/99 252.4 BMI 34.02

10/25/99 231 BMI 32

12/17/99 217.5 BMI 30.2

01/19/00 211 BMI 28

02/20/00 195 BMI 26

04/08/00 182.9 BMI 25

Hernia repair on 06/07/00 Dr. Anthone

Tummy Tuck & Breast Reduction Dr. Downey

06/07/00 160 BMI 21.7

01/08/01 164.3 BMI 21.7

Total Weight Loss! 224.1lbs GONE!

Total inches lost 154.5

http://www.duodenalswitch.com (our groups very own web site)

December 15, 2001

Hi Judy!

I'm Ann and in your general neck of the woods (northern Bay Area). I

have been here only a week or so, myself. Welcome aboard. I, too, am

looking at Dr. Rabkin (probably too expensive for me) and Dr. Jossart (better

price). My insurance (Blue Cross PPO) doesn't cover the procedure -- but

we'll see about fixing that! It's good to know someone at the same stage.

Ann

November 7, 2004

No...It is something completely different

I hope this finds you and yours well

Mark E. Armstrong

casca@...

www.top5plus5.com

PAI NW Rep

ICQ #59196115

introduction

>

> Hello, I'm new to the group. Is Pancreatitis the same as Pancreatic

Cancer?

>

November 7, 2004

The reason why I asked is because my uncle was diagnosed with Stage 4 Pancreatic

Cancer on October 15th, and passed away on the 21st...six days later! Serious

stuff!

Very sad week! I am still grieving the loss of my beloved uncle! Please pray

for my

uncle's wife, kids, and grandkids....and of course his extended family!!!

Thanks

everyone!

Rebekah

September 30, 2005

Hi Jodie. Caden was born " normal " at 6lbs, 14 oz. He is by far my smallest

child though. My other two are 9 lb 2 oz and 9lbs 8oz. At an u/s when I was 7

mo., he was estimated to weigh 6lbs 4oz already, so we wxpected him to come out

close to 10 lbs. Boy was I surprised!!! I know he doesn't quite follow the

typical RSS syndrome, and he may not have that, but maybe you can help point me

in the right direction.

He was born weighing 6lb 14oz and was 20 1/2 in. long. He is now 20 lbs and 30

1/4 in. long. He has not gained any weight in the last couple of months. He

weighed 20 lbs at his 15 month check up. He has grown a bit taller and is now

at 30 " , but that only puts him at the 5th percentile. Neither my husband or I

are " small " . We are average and I can't figure out why my son is so small and

skinny. His weight is pretty low and I am concerned for his health.

Chantel

Re: introduction

hi chantel!!

welcome to the group!! first you can go to the magic foundations web

aite at www.magicfoundation.org they are a non-profit org for families

of children and adults with growth disorders. also you could see about

getting an appt with an endo. and/or genetics dr. how big was he when

he was born? give us some more background info. did you check out the

pics of our kids? feel free to email me at jlcals2003@ yahoo.com (no

space after @)

jodie c (1 of 3 jodis on the list)

(nicholas-7 1/2 nonrss, christopher-4 1/2 rss 31lbs 38 1/2 " periactin,

ght, assementry (left side 1cm), ADHD & OCD possible, athon-2

nonrss)

> Hello. My name is Chantel. I am the mom of 3 and I found this group

> this morning. I am looking for some help for my son as my Dr. is not

> concerned about his. He is 17 months old and only weighs 20 lbs. He

> is 30 1/4 in tall. He is below all the growth curves, except for his

> head. It is in the 90th percentil for his age. My other children are

> average sized and so are my husband and myself. Why isn't my Dr.

> concerned? Where do I begin to start finding out what is going on

> with my son? He eats when he wants to, he is not a big eater, but he

> eats fairly well. I try to feed him high calorie food too, but

> nothing is helping. He refuses the pedisure I try to give him. I

> don't know anything about RSS, and he probably doesn't have the

> syndrome, but I figured you all are experienced with growth issues and

> you can lead me in the right direction. Thank you!

>

> Chantel

September 30, 2005

Thank you . I am ready to start pushing the issue. What is with Dr's

not paying attention to growth issues?

Chantel

Re: introduction

Chantel - Hi. My name is and I have a daughter who is now

almost 10 years old. What was your son's birth weight and length?

Most RSS children and all SGA children are born what we call with

intrauterine growth retardation -- meaning their length and weight are

affected while inutero. For RSS children, somehow their head is

spared, leaving their head much larger in proportion to their bodies.

Children who are SGA usually have heads in similar proportion to their

bodies (we call them mini-mes).

My daughter was born at 5lb 2oz and 17 inches long, with a head in the

75th percentile (body and length not on the charts). My husband is

6'4 " tall and I am 5'4 " . Our doctor wasn't concerned at all, because

although was tiny, she continued to grow along her own curve.

We moved to CT when she was 19 months old and she was around 17-18

pounds?? Can't recall. I remember the numbers 19-20 pounds because

she got stuck there for about a year!!!

OUr FIRST pediatrician visit in CT, he looked at her growth charts,

and said " what the heck? " She should be at the 75th percentile in

height, why hasn't anyone examined her.... and off we went to Yale

Children's Hospital. Had we stayed in LA, I am sure we would still

be " watching fail to grow. "

I think you need to find a pediatric endocrinologist at a Children's

Hospital and ask for his or her opinion. If your son's weight and

length are not on the charts but his head circumference is -- that is

GREAT because it indicates that his brain is not suffering right now.

However, it also shows about where his length SHOULD be at....

Clearly, your son's growth is being limited. By what? I can't say.

If he has a food allergy that is limiting his absorption or something

else, it can also limit his length growth. So it may not even be RSS.

Definitely take others' advice and go to the www.magicfoundation.org

website. Read about RSS. You can call them tollfree 800-3MAGIC3 and

they can mail you some hard copy information.

And keep writing! Do you have a photo of your son you can email me?

I am one of the volunteers for MAGIC right now, and have now seen

probably 250 children with RSS through the years at our conventions.

There is a certain " look " to these kids, in about 95% of the cases --

although photos are much harder to discern than seeing a child in

person.

Stay here and keep writing. You will learn a lot no matter what.

Salem magicrss@ mindspring.com

> Hello. My name is Chantel. I am the mom of 3 and I found this group

> this morning. I am looking for some help for my son as my Dr. is not

> concerned about his. He is 17 months old and only weighs 20 lbs. He

> is 30 1/4 in tall. He is below all the growth curves, except for his

> head. It is in the 90th percentil for his age. My other children

are

> average sized and so are my husband and myself. Why isn't my Dr.

> concerned? Where do I begin to start finding out what is going on

> with my son? He eats when he wants to, he is not a big eater, but he

> eats fairly well. I try to feed him high calorie food too, but

> nothing is helping. He refuses the pedisure I try to give him. I

> don't know anything about RSS, and he probably doesn't have the

> syndrome, but I figured you all are experienced with growth issues

and

> you can lead me in the right direction. Thank you!

>

> Chantel

October 1, 2005

hi chantel!!

christopher was the same way!! he was 5lbs 10oz 18 1/2 " , but my

first son was 9lb 4oz 22 1/2 " and then my 3rd son was 8lbs 6oz 22

1/2 " !! they had told me that christopher was going to be atleast 8

1/2lbs at birth so i had a repeat planned c-csection (had one with

the first because he was so big!!) then when i had him and they

said how much he weighed i was shocked!! what happended to the

other 3lbs!!! i gained just as much weight with each pregnancy!!

christopher is more on the " mild " side of rss, he doesnt have all of

the gut issues!! he mostly is just a slow grower, eats but not

always alot. he has assementry of his left side (left leg is 1cm

shorter and arm and leg on left side areant as " thick " as the right

side) this is actually how the ped picked up on the rss when he was

2 months. he is now 4 1/2 (will be 5 in dec.) he is currently 30lbs

and 38 1/2 " he is on ght, has been since the end of jan. and is on

periactin (which is an appitiete stimulant)has been on that since

april 2004. we see dr h in nyc, we started seeing her in april 2004

he has since gained over 3lbs and has grown over 4 " !! she is

definitely worth the trip to nyc!!

jodie c

feel free to email me at jlcals2003@ yahoo.com (no space after @)

anytime

May 2, 2006

Welcome! Congrat's on your son, what is his name?

I too had never heard of club foot before our daughter Grace was born

with unilteral right club foot in July of 2004. We were lucky enough

to have a Ponseti doctor in our city and she had 4 casts, didn't end

up needing the tenotomy and now wears her 'nighty night shoes' for

about 13 hrs - at night - and her foot looks perfect.

The most important thing is that you have a good (Ponseti certified)

doctor and that your child receives good correction. As long as good

correction is achieved and then you follow the bracing protocol's,

you shouldn't have any major problems and the brace becomes a non-

issue. It's now just a part of our bed time routine. I know that it

seems daunting when you are first starting out but it really will get

so much easier, I promise you!

Check out the file's section of this board and if you scroll down to

near the bottom you will see the " Tips & Tricks " doc. that was like a

bible to me when we first started with the brace lol. It was composed

by a mom (Kori) on this list and is a huge help with getting the

shoes on properly - very important so that you don't wind up with any

blisters/sores.

You will find this group a great resource for information and

support, glad you're here . Who is your son's doctor btw?

& Grace 21mos

urcf FAB 13hrs

>

> We are new to the group. My husband and I gave birth to a son with

> bilateral club feet in January of 2006 in Toronto, Canada. We had

> never heard of club feet before. He had his first set of casts

when he

> was 2 weeks old. We are almost finished the serial casting process

> now. He's had his achilles tendon nicked and those casts are on

for 3

> weeks. This coming Thursday he is fitted for the Dennis Brown Bar

that

> he will wear full-time for 3 months. We are just beginning our

lengthy

> journey.

>

May 2, 2006

Actually, you're at the end of the journey provided your child continues to wear

the FAB as prescribed! Congratulations!

shawnee

Introduction

We are new to the group. My husband and I gave birth to a son with

bilateral club feet in January of 2006 in Toronto, Canada. We had

never heard of club feet before. He had his first set of casts when he

was 2 weeks old. We are almost finished the serial casting process

now. He's had his achilles tendon nicked and those casts are on for 3

weeks. This coming Thursday he is fitted for the Dennis Brown Bar that

he will wear full-time for 3 months. We are just beginning our lengthy

journey.

May 3, 2006

Our son's name is Zachary and we are being treated at the Hospital

for Sick Children in Toronto by Dr. Alman. Our 3 month old actually

sees a physiotherapist weekly, who does the foot manipulation and

casting. She is wonderful and trained in the PM. She does not use

plaster casts, however. Our doc., who's seen hundreds of club feet,

did a tenotomy on Zack 3 weeks ago and the casts come off tomorrow.

He goes straight into a FAB at the hospital. He'll be measured and

fitted. All of this is done in the Orthopedic Clinic at the hospital

and our experience with Toronto Sick Kid's Hospital has been

fantastic! My husband and I are a little apprehensive of the FAB and

we have been doing a lot of research on how to make the experience as

easy a possible. We have a big learning curve ahead in the next few

days. Zack has become quite accumstom to the casts and he can kick

good and hard now that he's just turned 3 months. He'll have to

learn to kick using both legs at the same time. I did read Kori's

document on tricks and tips for the FAB. Many thank you's!

> >

> > We are new to the group. My husband and I gave birth to a son

with

> > bilateral club feet in January of 2006 in Toronto, Canada. We

had

> > never heard of club feet before. He had his first set of casts

> when he

> > was 2 weeks old. We are almost finished the serial casting

process

> > now. He's had his achilles tendon nicked and those casts are on

> for 3

> > weeks. This coming Thursday he is fitted for the Dennis Brown

Bar

> that

> > he will wear full-time for 3 months. We are just beginning our

> lengthy

> > journey.

> >

>

May 11, 2006

Hi everyone, I joined the group a few weeks ago and haven't had a

chance to introduce myself or my daughter. The postings are great

though. My name is and my daughter's name is . She

was born with bilateral club feet. I had never heard of clubfoot

until she was born and my husband and I were very scared as to what

this meant for her future. Would she be able to walk? The pediatric

doctors at the hospital said that it was treatable and she should be

able to " lead " a normal life, but we were skeptical. No one on

either side of our family that we know of has clubfeet. In CA, we

just took her to her assigned pediatrician and she referred us to a

specialist. After meeting with the podiatrist, he said he didn't

want to give us any false hopes that her feet would be " normal " . I

cried for days. However, we continued taking her to weekly cast

changes. He said he was doing the Ponseti method and did cast

changes every week and after 6 cast changes he did the tendon

release. What started to worry me was that 8 weeks had passed from

the tendon release and she was still not in the DBB. I approached

him about it and he said that it was insurance issues and once our

insurance approved the shoes she should get them. At the same time,

we were relocating to Houston and I wanted to find a doctor to

continue her treatment. We were running against time trying to get

her shoes before we left and trying to find a doctor for her. Out of

desperation I contacted Dr. Ponseti and they provided me with the

link that you all have on approved Ponseti doctors. I found out that

the doctor she was seeing in CA was not an approved Ponseti doctor

and that there were none in Houston. It was hard for me to believe

that in Houston there would be no Ponseti doctors as it is such a

large city. Anyways, we found a doctor in Fort Worth, Dr. Lund,

which is 5 hours away and we made our trip up there. It was well

worth it. He was very knowledgable and answered all our questions,

he gave us a booklet and even referred us to this group. He had to

adjust her shoes because they were only at 30 degrees and he moved

them to 70 degrees. However, he said that she had obtained good

correction. We have our next appointment in late June when hopefully

she will go to nights & naps. is 5 1/2 months, adorable and

has been a good trooper with all of this. At first she would cry and

cry with the casts (she started them at a week of age) and then she

got so used to them that she cried with the DBB. Now she is getting

more used to the DBB and even crawls backwards! I'll post some

pictures of her later so you can meet her.

As first time parents, it's amazing the courage you get to make sure

your baby gets the right treatment. I was so scared but now after

reading all these posts and seeing a good doctor, it seems that

there is a lot of hope in getting full correction. I feel so blessed

to have had and although it was tough at first, we are all

getting through it and moving ahead. Thanks all for being such an

inspiration.

May 12, 2006

Welcome - I agree that the people here are a great inspiration. I

am so glad you have found renewed hope - I truly believe that the

Ponseti method has great results - it has been proven! It sounds

like you were quite lucky to have gotten good correction in CA,

especially with such a time lapse before getting the shoes. Glad

you've found an accessible doctor who can really make you

confident!

kaci

>

> Hi everyone, I joined the group a few weeks ago and haven't had a

> chance to introduce myself or my daughter. The postings are great

> though. My name is and my daughter's name is . She

> was born with bilateral club feet. I had never heard of clubfoot

> until she was born and my husband and I were very scared as to

what

> this meant for her future. Would she be able to walk? The

pediatric

> doctors at the hospital said that it was treatable and she should

be

> able to " lead " a normal life, but we were skeptical. No one on

> either side of our family that we know of has clubfeet. In CA, we

> just took her to her assigned pediatrician and she referred us to

a

> specialist. After meeting with the podiatrist, he said he didn't

> want to give us any false hopes that her feet would be " normal " . I

> cried for days. However, we continued taking her to weekly cast

> changes. He said he was doing the Ponseti method and did cast

> changes every week and after 6 cast changes he did the tendon

> release. What started to worry me was that 8 weeks had passed from

> the tendon release and she was still not in the DBB. I approached

> him about it and he said that it was insurance issues and once our

> insurance approved the shoes she should get them. At the same

time,

> we were relocating to Houston and I wanted to find a doctor to

> continue her treatment. We were running against time trying to get

> her shoes before we left and trying to find a doctor for her. Out

of

> desperation I contacted Dr. Ponseti and they provided me with the

> link that you all have on approved Ponseti doctors. I found out

that

> the doctor she was seeing in CA was not an approved Ponseti doctor

> and that there were none in Houston. It was hard for me to believe

> that in Houston there would be no Ponseti doctors as it is such a

> large city. Anyways, we found a doctor in Fort Worth, Dr. Lund,

> which is 5 hours away and we made our trip up there. It was well

> worth it. He was very knowledgable and answered all our questions,

> he gave us a booklet and even referred us to this group. He had to

> adjust her shoes because they were only at 30 degrees and he moved

> them to 70 degrees. However, he said that she had obtained good

> correction. We have our next appointment in late June when

hopefully

> she will go to nights & naps. is 5 1/2 months, adorable

and

> has been a good trooper with all of this. At first she would cry

and

> cry with the casts (she started them at a week of age) and then

she

> got so used to them that she cried with the DBB. Now she is

getting

> more used to the DBB and even crawls backwards! I'll post some

> pictures of her later so you can meet her.

>

> As first time parents, it's amazing the courage you get to make

sure

> your baby gets the right treatment. I was so scared but now after

> reading all these posts and seeing a good doctor, it seems that

> there is a lot of hope in getting full correction. I feel so

blessed

> to have had and although it was tough at first, we are all

> getting through it and moving ahead. Thanks all for being such an

> inspiration.

>

May 12, 2006

Hi and Welcome! I'm glad Dr. Lund referred you to our family here

You know what irritates me? The FAB isn't all that expensive. I mean if your

dr. is waiting on insurance approval and your child is losing correction or

something in the mean time, why not just let you go buy the dang thing yourself?

I'm not beating you up - it's the doctor and insurance companies that irk me.

I read about this once in a while, " Waiting for the insurance.... " And yes

it's great to have your insurance actually pay for something, by the same token

why not at least give you the option of buying it out of pocket if necessary?

I'm glad your daughter is on the road to recovery and yes, it's very likely she

will lead a fully normal life on normal feet now Keep up the good work

Mommy!

ee

Mother of 3 Clubfooted Sons:

- Bilateral Club Feet April 1998

Everett - Bilateral Club Feet September 2003

Garrison - Bilateral Club Feet March 2006