New to the Group

[Guest guest]

I've heard Debbie mention Sturgis. She goes there once a year with friends to

shop. You certainly live in a beautiful state! Have you ever been to Mackinaw

Island? We love it there and visit every time we come out. It sounds like

Grace is probably on the same growth curve as Brockton. They are about the same

height per weight for their ages, don't you think?

It would be great if you could post some pictures on the website. There are

some recent ones of Brockton that I just posted the other day. All of our

children are GORGEOUS................have you checked them out?

You will be so happy that you found this listserve, Terri. I know that I am!

Jeanie

grace12803 wrote:

Hi Jeanie, Thanks so much for the warm welcome. Grace(RSS) is 21

lbs. and 31 1/4 in. as of Dec 12 05 her last measurements. Alivia

her twin is 27-28 lbs and 36- 37 in., not sure exactly since she

doesn't get measured so often. Yes we are in Sturgis, MI about a mile

from Indiana. Terri

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs and

14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> was wrong: big head, webbed toes, incurved fingers, small triangle

> face. We went home, Grace wouldn't eat. We forced milk in her,

she

> puked. PT and OT were started. She wasn't growing, couldn't lift

her

> head. Finally switching peds, we got referred to Univ. of MI

Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested

negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> 21 lbs, 31 1/4 in, GHT)

>

>

>

>

>

>

>

>

[Guest guest]

Hi Terri my name is Sheldon and i am a G-Pa to a little angel named Laikyn, RSS,

G-tube, Periactin, GHT, 4years old in April. First off i must say " WELCOME

HOME " . Now i know you are wondering why is he saying welcome home. Well we here

on this Listserve feel like in a way we are home. Everyone is here to help one

another just as if we are all family. Whether we agree or disagree with one's

opinion,we hope it will help in some way.You will find all opinions are welcome.

After awhile you will probably become good friends with some people here and

chose to discuss other matters as well. Just don't ask me any questions, I am

not as smart as the women claim they are.LOL. as you see i am just here to give

people grief. So we hope after time this site will make you feel just like you

are at home. With that good luck to you and Grace.

Sheldon, Balmy Rural Mandan, North Dakota

New to the Group

Hi, I am new to the group, just wanted to introduce myself and

daughter. I have twin girls born 1/28/03: Grace and Alivia. They

were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

3/4 in. Immediatly the docs brought in genetics, but no one knew what

was wrong: big head, webbed toes, incurved fingers, small triangle

face. We went home, Grace wouldn't eat. We forced milk in her, she

puked. PT and OT were started. She wasn't growing, couldn't lift her

head. Finally switching peds, we got referred to Univ. of MI Genetics

and Endo. They came up with RSS, got g-tube May'04, tested negative

for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

using g-tube as of Jan. '06, but am not sure if that is right

decision. Average cal. a day is about 846 w/out tube. My nutrionist

has made little effort to help,has no opinion on using/ not using

tube. I don't know what else to do for her or if we are missing

something. Any advice on other areas to look into or docs?

Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

21 lbs, 31 1/4 in, GHT)

[Guest guest]

Hi Grace,

My name is Pattie Warren and I live about an hour and a half from

you. I have been to Sturgis a couple of times when my daughters

travel soccer team plays there. I live in Saint ph, Michigan. My

RSS-son Jon is 11 and has been to doctors all around the area. Who do

you see for an endocrinologist? We used to see Dr Draznin in

Kalamazoo but now we go to New York. I know that we will be traveling

to Sturgis this spring for at least one game and Jon's travel team

will probably play there also. Welcome to the group, it's good to

find people close.

Pattie Warren

>

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew what

> was wrong: big head, webbed toes, incurved fingers, small triangle

> face. We went home, Grace wouldn't eat. We forced milk in her, she

> puked. PT and OT were started. She wasn't growing, couldn't lift her

> head. Finally switching peds, we got referred to Univ. of MI Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

> 21 lbs, 31 1/4 in, GHT)

>

[Guest guest]

Ok Grace probably can't read yet so I guess I should have addressed

that to Terri- sorry!

> >

> > Hi, I am new to the group, just wanted to introduce myself and

> > daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> > were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

> > 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> > was wrong: big head, webbed toes, incurved fingers, small triangle

> > face. We went home, Grace wouldn't eat. We forced milk in her, she

> > puked. PT and OT were started. She wasn't growing, couldn't lift

her

> > head. Finally switching peds, we got referred to Univ. of MI

Genetics

> > and Endo. They came up with RSS, got g-tube May'04, tested negative

> > for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

> > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

> > using g-tube as of Jan. '06, but am not sure if that is right

> > decision. Average cal. a day is about 846 w/out tube. My nutrionist

> > has made little effort to help,has no opinion on using/ not using

> > tube. I don't know what else to do for her or if we are missing

> > something. Any advice on other areas to look into or docs?

> > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

> > 21 lbs, 31 1/4 in, GHT)

> >

>

[Guest guest]

Hi Grace,

Just wanted to welcome you to the group also! I'm Leah and my

youngest daughter, Olivia, has RSS. She's 6 years old and never had

a g-tube or anything. We're fighting right now for GHT but being in

Canada it's a terrible struggle.

Hope to get to know you better!

Leah, mom to , almost 11 and

Olivia, 6 yrs, 23lbs, 36 " , RSS, OI

>

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia. They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs and

14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> was wrong: big head, webbed toes, incurved fingers, small triangle

> face. We went home, Grace wouldn't eat. We forced milk in her,

she

> puked. PT and OT were started. She wasn't growing, couldn't lift

her

> head. Finally switching peds, we got referred to Univ. of MI

Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested

negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4

in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> 21 lbs, 31 1/4 in, GHT)

>

[Guest guest]

hi want to intro our selfs my name is cara i am mom to jacob 9 RSS/SGA we have

had many issues over the year and much support here i hope we all can help your

on your road

cara

grace12803 wrote:

Hi, I am new to the group, just wanted to introduce myself and

daughter. I have twin girls born 1/28/03: Grace and Alivia. They

were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

3/4 in. Immediatly the docs brought in genetics, but no one knew what

was wrong: big head, webbed toes, incurved fingers, small triangle

face. We went home, Grace wouldn't eat. We forced milk in her, she

puked. PT and OT were started. She wasn't growing, couldn't lift her

head. Finally switching peds, we got referred to Univ. of MI Genetics

and Endo. They came up with RSS, got g-tube May'04, tested negative

for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

using g-tube as of Jan. '06, but am not sure if that is right

decision. Average cal. a day is about 846 w/out tube. My nutrionist

has made little effort to help,has no opinion on using/ not using

tube. I don't know what else to do for her or if we are missing

something. Any advice on other areas to look into or docs?

Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

21 lbs, 31 1/4 in, GHT)

[Guest guest]

hi terri!!

welcome to our great big " family " of support!! ((HUGS))

jodie c

[Guest guest]

Welcome!! I also have twin girls (identical) that are 23 months old. Sydney

and Leah were born 8 weeks early and Sydney was 2p 11oz and Leah was 4p 8oz.

Sydney was just received a diagnosis of RSS a few weeks ago so this is all new

to me as well. We have struggled with feeding issues since day one with Sydney

and while we ended up not having to use a feeding tube we came very close on

several occassions.

She is eating much better now but still hasn't cracked 20 pounds yet. We are

hoping to reach that milestone before her 2nd birthday. Her sister is about

28-29 pounds so there is quite a difference between them. I have posted their

pictures on the web site - there is a huge difference in size.

We haven't started GHT yet, we have our first appointment with our endo in April

so I am not sure what she will recommend.

It is hard sometimes watching one twin develop so " normally " while the other

faces so many challenges but Sydney is a total spitfire and is a real fighter.

I think all of these challenges have given her a tenaciousness that will serve

her very well in her life. No matter what is put in front of her she just keep

plugging away.

Welcome to the group. It is a great place to ask questions and learn lots of

information from other parents who have already been down this road.

Beth

New to the Group

Hi, I am new to the group, just wanted to introduce myself and

daughter. I have twin girls born 1/28/03: Grace and Alivia. They

were 5 weeks early, but very small especially Grace: 3 1/2 lbs and 14

3/4 in. Immediatly the docs brought in genetics, but no one knew what

was wrong: big head, webbed toes, incurved fingers, small triangle

face. We went home, Grace wouldn't eat. We forced milk in her, she

puked. PT and OT were started. She wasn't growing, couldn't lift her

head. Finally switching peds, we got referred to Univ. of MI Genetics

and Endo. They came up with RSS, got g-tube May'04, tested negative

for RSS as most do, started GHT March '05. She has grown 4 1/4 in.

and 3 1/2 lbs in 9 mths which is so huge. Now what? We have stopped

using g-tube as of Jan. '06, but am not sure if that is right

decision. Average cal. a day is about 846 w/out tube. My nutrionist

has made little effort to help,has no opinion on using/ not using

tube. I don't know what else to do for her or if we are missing

something. Any advice on other areas to look into or docs?

Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2 mths,

21 lbs, 31 1/4 in, GHT)

[Guest guest]

Beth and Jay,

I am so suprised how many twins are in this group. Sydney sounds

just like Grace. Grace is our trouble maker, she might be little,

but she defends herself( maybe a little too well). Good luck on

getting to 20 lbs, I remember when Grace finally hit 10 lbs and 20

lbs. I look forward to checking out your pictures and need to post

some of mine too. The GHT really helped with Grace's appetite, maybe

it will for Sydney too. Thanks, Terri

>

> Welcome!! I also have twin girls (identical) that are 23 months

old. Sydney and Leah were born 8 weeks early and Sydney was 2p 11oz

and Leah was 4p 8oz. Sydney was just received a diagnosis of RSS a

few weeks ago so this is all new to me as well. We have struggled

with feeding issues since day one with Sydney and while we ended up

not having to use a feeding tube we came very close on several

occassions.

>

> She is eating much better now but still hasn't cracked 20 pounds

yet. We are hoping to reach that milestone before her 2nd

birthday. Her sister is about 28-29 pounds so there is quite a

difference between them. I have posted their pictures on the web

site - there is a huge difference in size.

>

> We haven't started GHT yet, we have our first appointment with our

endo in April so I am not sure what she will recommend.

>

> It is hard sometimes watching one twin develop so " normally " while

the other faces so many challenges but Sydney is a total spitfire and

is a real fighter. I think all of these challenges have given her a

tenaciousness that will serve her very well in her life. No matter

what is put in front of her she just keep plugging away.

>

> Welcome to the group. It is a great place to ask questions and

learn lots of information from other parents who have already been

down this road.

>

> Beth

> New to the Group

>

>

> Hi, I am new to the group, just wanted to introduce myself and

> daughter. I have twin girls born 1/28/03: Grace and Alivia.

They

> were 5 weeks early, but very small especially Grace: 3 1/2 lbs

and 14

> 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> was wrong: big head, webbed toes, incurved fingers, small

triangle

> face. We went home, Grace wouldn't eat. We forced milk in her,

she

> puked. PT and OT were started. She wasn't growing, couldn't

lift her

> head. Finally switching peds, we got referred to Univ. of MI

Genetics

> and Endo. They came up with RSS, got g-tube May'04, tested

negative

> for RSS as most do, started GHT March '05. She has grown 4 1/4

in.

> and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> using g-tube as of Jan. '06, but am not sure if that is right

> decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> has made little effort to help,has no opinion on using/ not using

> tube. I don't know what else to do for her or if we are missing

> something. Any advice on other areas to look into or docs?

> Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> 21 lbs, 31 1/4 in, GHT)

>

>

>

>

>

>

>

>

[Guest guest]

Jeanie,

Yes we have been to Mackinaw Island, but not since before the girls

were born. My husband's sister lives in the U.P. so we go atleast

once a year somewhere up north. Yes the kids seem to be real close

to the same growth curve. I haven't looked at the pics, but I will

today and post some of mine. I am already glad i have joined, wish I

would have sooner. Thanks, Terri

> > Hi, I am new to the group, just wanted to introduce myself and

> > daughter. I have twin girls born 1/28/03: Grace and Alivia.

They

> > were 5 weeks early, but very small especially Grace: 3 1/2 lbs

and

> 14

> > 3/4 in. Immediatly the docs brought in genetics, but no one knew

> what

> > was wrong: big head, webbed toes, incurved fingers, small

triangle

> > face. We went home, Grace wouldn't eat. We forced milk in her,

> she

> > puked. PT and OT were started. She wasn't growing, couldn't

lift

> her

> > head. Finally switching peds, we got referred to Univ. of MI

> Genetics

> > and Endo. They came up with RSS, got g-tube May'04, tested

> negative

> > for RSS as most do, started GHT March '05. She has grown 4 1/4

in.

> > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> stopped

> > using g-tube as of Jan. '06, but am not sure if that is right

> > decision. Average cal. a day is about 846 w/out tube. My

> nutrionist

> > has made little effort to help,has no opinion on using/ not using

> > tube. I don't know what else to do for her or if we are missing

> > something. Any advice on other areas to look into or docs?

> > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

> mths,

> > 21 lbs, 31 1/4 in, GHT)

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Pattie,

We see an Endo. at U of M, there are a couple different ones:

Hopwood is last one we saw. They have a nurse that supervises all

GHT patients, Kathy , we see her every time we go. We also see

Donna at U of M for Genetics. Our Ped. is in Coldwater, Dr.

Dy, so maybe that is why they went with U of M. We do use the

Nutritionists at Bronson, but are not too impressed. How to you

decide to switch to NY? Is that Dr. H? Our genetics doc. has been the

one that has really helped diagnos Grace, but at the last appt. she

said she had about come to the end of what she knew to do for Grace.

We would love to meet you this Spring when you are in town. My

husband is from South Haven, so we are over there frequently.

Glad to Meet You, Terri

> >

> > Hi, I am new to the group, just wanted to introduce myself and

> > daughter. I have twin girls born 1/28/03: Grace and Alivia.

They

> > were 5 weeks early, but very small especially Grace: 3 1/2 lbs

and 14

> > 3/4 in. Immediatly the docs brought in genetics, but no one knew

what

> > was wrong: big head, webbed toes, incurved fingers, small

triangle

> > face. We went home, Grace wouldn't eat. We forced milk in her,

she

> > puked. PT and OT were started. She wasn't growing, couldn't

lift her

> > head. Finally switching peds, we got referred to Univ. of MI

Genetics

> > and Endo. They came up with RSS, got g-tube May'04, tested

negative

> > for RSS as most do, started GHT March '05. She has grown 4 1/4

in.

> > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

stopped

> > using g-tube as of Jan. '06, but am not sure if that is right

> > decision. Average cal. a day is about 846 w/out tube. My

nutrionist

> > has made little effort to help,has no opinion on using/ not using

> > tube. I don't know what else to do for her or if we are missing

> > something. Any advice on other areas to look into or docs?

> > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

mths,

> > 21 lbs, 31 1/4 in, GHT)

> >

>

[Guest guest]

Terri,

We met Dr. Harbison when Jonathon was 15 months old. We had

traveled to New York to meet with Dr. New (Dr. H's boss) to discuss a

different disorder that Jon had been diagnosed with. Through that

trip we found that he had been misdiagnosed and Dr. Harbison saw him

and told us that he had RSS. We had been seeing Dr. Draznin in

Kalamazoo, he works with KCMS which I think is through Michigan State.

We have tried to see him occassionally but he doesn't have much

experience with treatments for RSS.

Last year we traveled to U of M to visit a craniofacial team to

discuss Jon's orthodontics. THey wanted us to meet with a genetics

doctor but I have not done that.

You should really consider attending the MAGIC Convention in Chicago

this summer. It is at the tt near O'Hare and a lot of RSS kids

attend. Dr Harbison also comes and you can get an appt with her to

see Grace. You will also get to meet lots of great kids and parents,

and hear speakers regarding medical, nutrition, and social issues.

It's great for everybody and luckily only a 2 or 3 hour drive for us.

THe convention is July 20th-23rd, 2006

I just checked our soccer schedule for my daughter and there is no

team in Sturgis this year but Jon's team schedule hasn't come out yet.

I know there is a Sturgis team so I will let you know if the game is

away or at home.

Pattie

> > >

> > > Hi, I am new to the group, just wanted to introduce myself and

> > > daughter. I have twin girls born 1/28/03: Grace and Alivia.

> They

> > > were 5 weeks early, but very small especially Grace: 3 1/2 lbs

> and 14

> > > 3/4 in. Immediatly the docs brought in genetics, but no one knew

> what

> > > was wrong: big head, webbed toes, incurved fingers, small

> triangle

> > > face. We went home, Grace wouldn't eat. We forced milk in her,

> she

> > > puked. PT and OT were started. She wasn't growing, couldn't

> lift her

> > > head. Finally switching peds, we got referred to Univ. of MI

> Genetics

> > > and Endo. They came up with RSS, got g-tube May'04, tested

> negative

> > > for RSS as most do, started GHT March '05. She has grown 4 1/4

> in.

> > > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> stopped

> > > using g-tube as of Jan. '06, but am not sure if that is right

> > > decision. Average cal. a day is about 846 w/out tube. My

> nutrionist

> > > has made little effort to help,has no opinion on using/ not using

> > > tube. I don't know what else to do for her or if we are missing

> > > something. Any advice on other areas to look into or docs?

> > > Sincerely, Terri Tippman( mom of Grace RSS, 36 1/2

> mths,

> > > 21 lbs, 31 1/4 in, GHT)

> > >

> >

>

[Guest guest]

Pattie,

Thanks so much for all the info! We have been reading alot about the

conference and are planning to go. The first genetics doc. we saw

was with KCMS, when Grace was 6 mths. They couldn't figure out

anything and just wanted to wait to see her in a year when she was

bigger. We ended up switching Pediatricians then got referred to U

of M. If you go to U of M for Genetics ask for Dr. Donna , she

is atleast familar w/ RSS. She has been very helpful, returns calls

and emails, willing to search out information. Hope to see you this

Spring or atleast at the conference.

Terri

> > > >

> > > > Hi, I am new to the group, just wanted to introduce myself

and

> > > > daughter. I have twin girls born 1/28/03: Grace and Alivia.

> > They

> > > > were 5 weeks early, but very small especially Grace: 3 1/2

lbs

> > and 14

> > > > 3/4 in. Immediatly the docs brought in genetics, but no one

knew

> > what

> > > > was wrong: big head, webbed toes, incurved fingers, small

> > triangle

> > > > face. We went home, Grace wouldn't eat. We forced milk in

her,

> > she

> > > > puked. PT and OT were started. She wasn't growing, couldn't

> > lift her

> > > > head. Finally switching peds, we got referred to Univ. of MI

> > Genetics

> > > > and Endo. They came up with RSS, got g-tube May'04, tested

> > negative

> > > > for RSS as most do, started GHT March '05. She has grown 4

1/4

> > in.

> > > > and 3 1/2 lbs in 9 mths which is so huge. Now what? We have

> > stopped

> > > > using g-tube as of Jan. '06, but am not sure if that is right

> > > > decision. Average cal. a day is about 846 w/out tube. My

> > nutrionist

> > > > has made little effort to help,has no opinion on using/ not

using

> > > > tube. I don't know what else to do for her or if we are

missing

> > > > something. Any advice on other areas to look into or docs?

> > > > Sincerely, Terri Tippman( mom of Grace RSS, 36

1/2

> > mths,

> > > > 21 lbs, 31 1/4 in, GHT)

> > > >

> > >

> >

>

[Guest guest]

Kim,

My son was born with a rt clubfoot and went through 9 weeks of the

ponseti casts at Shriner's Hospital then went into the boot and bar

for 12 weeks 23/7. He is now just wearing the boots at nap and

night time. Went we went through the castings my son was not very

happy for a day but the next day he was ok. If he's fussy for more

than a day then it's the cast and he needs to have it redone. Don't

settle for that's how they are. He will cry when you touch his bare

leg after the cast is taken off. My son hated it, he actually go to

the point that he liked the cast on better than off. Here's a

little trick, he likes the pressure on his leg so when that take it

off wrap your two hand around his leg and apply a little pressure.

Do that for a couple of minutes and he should stop crying and you

can let go. Don't rub his leg or foot. I was told by my son's

doctor that his leg feels like it's asleep and tingly. Another

thing, my doctor use to want me to wash his leg after the cast came

off before we put another one on. Don't do it because he'll cry

even more because it's so sensitive. I know it will stink but it's

ok. We nickname his clubfoot the " Stinky foot " because it smelled

like a nasty sweat sock. And last but not least hang in there. It

will get better. Trust me my son's 6 months old next week and is

doing great. It's a long haul but it goes by fast.

>

> Hi. My name is Kim and I am a member of the other clubfoot group,

but

> saw a post for this group and wanted to join because I am having a

> lot of anxiety about my son's treatment. My son, , was born

3-

> 19-06 with right clubfoot. We did not know before he was born and

> have no family history (that we can find)of clubfoot. We initially

> saw a doctor that was putting casts on my son, but they were not

done

> the Ponseti way. My son lost 5 casts in 10 days. I feel that he

was

> somewhat tramatized by the situation because the doctor did not

know

> what he was doing and I did not know any better. I found another

> doctor who has studied with Dr. Ponseti and has been practicing

his

> method for 4 years. We are now on our second cast and they have

> stayed on!! However, , cries a lot everytime they touch his

> foot. They told me he does not need any Tylenol afterwards, but I

> have a hard time believing that. They sent me home with a DVD to

> watch and I saw that they cut the tendon in his ankle afterwards.

> Truthfully, I am having a hard time with that idea. It scares me.

I

> talked to the doctor about it and they told me that they only give

> local anesthetic. I just wanted to talk to some other parents to

see

> how their experience was. ANy input would help.

>

> Thanks, Kim

>

[Guest guest]

Hi Kim,

Sounds like you've made a good choice in switching doctors. Do you

mind sharing who you were seeing and who you are now seeing? We like

to sort of keep track of who is doing it right and wrong so we can

help other parents make good decisions about choosing a doctor.

Some babies are slightly uncomfortable for the first few hours, or

even a day after casting and I know that some parents do give them a

little tylenol to help with this. If you feel it is warranted I would

check with your regular pediatrician for guidance.

As far as the tenotomy (the tendon cut) goes, I just want to be sure

that they are referring to the achilles tendon - you said in the ankle

-- it's the tendon in the back of the heel/ankle area that should be

released with a tiny snip in the Ponseti method. This procedure is

very minor and truly is easily done under a local anesthetic. It is

so quick, literally a few seconds per foot, no stitches are required.

It's really no more " surgery " than a circumcision. I hope this

helps some!

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

>

> Hi. My name is Kim and I am a member of the other clubfoot group, but

> saw a post for this group and wanted to join because I am having a

> lot of anxiety about my son's treatment. My son, , was born 3-

> 19-06 with right clubfoot. We did not know before he was born and

> have no family history (that we can find)of clubfoot. We initially

> saw a doctor that was putting casts on my son, but they were not done

> the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

> somewhat tramatized by the situation because the doctor did not know

> what he was doing and I did not know any better. I found another

> doctor who has studied with Dr. Ponseti and has been practicing his

> method for 4 years. We are now on our second cast and they have

> stayed on!! However, , cries a lot everytime they touch his

> foot. They told me he does not need any Tylenol afterwards, but I

> have a hard time believing that. They sent me home with a DVD to

> watch and I saw that they cut the tendon in his ankle afterwards.

> Truthfully, I am having a hard time with that idea. It scares me. I

> talked to the doctor about it and they told me that they only give

> local anesthetic. I just wanted to talk to some other parents to see

> how their experience was. ANy input would help.

>

> Thanks, Kim

>

[Guest guest]

Hi Kim, I'm glad you found our group here. I think we'll be able to ease some

of your fears and answer your questions.

Although not terribly painful, I do believe there is a certain amount of

discomfort following each new casting session. I would give motrin or tylanol

prior to the casting and follow up through that day and in to the next if I

thought he needed it. No need for the baby to suffer anything extra if you can

give him a small dose to help, right?

As for the tenotomy, clipping the heel cord tendon, that is a minor deal in the

scheme of things. It sounds much worse than it is. If you pull out a rubber

band it goes only so far, but if you were to take scissors and nick that rubber

band it would stretch a little further. That is what the dr. will do to the

tendon. Not all babies need this, by the way, but most do.

With the young babies they often do it in office with a topical numbing agent on

the skin. A small scalpel is inserted, so small it's nearly a needle. It's

given a small twist which cuts/nicks the tendon. There are no huge cuts, just a

small prick. No stitches required. The foot is then positioned and casted in

place while the tendon grows back longer than it was.

They say in years gone by this was done to prisoners of war to prevent their

escape and even on a grown man the tendon had to be cut ever few months as it

regenerated so fast. In a baby it'll be regenerated in a couple weeks.

The tenotomy, when necessary, IS necessary to complete the correction process.

With out doing it to a child whose club foot requires it would result in less

than great results. The foot would not be able to bend and work properly and

would remain with some deformity involved.

My 2 1/2 year old had it done, my husband watched an says it wasn't that bad at

all. My new born did not require it.

On the day that they do it though, start with tylanol prior to the visit, and

hhave motrin on hand also. You can alternate the two pain killers ever two

hours if needed (of course please check with your doctor rather than take my

word for it). Expect extra fussiness to last a day or two but after that most

babies are good as new.

Good luck and come back with any questions!

shawnee

New to the Group

Hi. My name is Kim and I am a member of the other clubfoot group, but

saw a post for this group and wanted to join because I am having a

lot of anxiety about my son's treatment. My son, , was born 3-

19-06 with right clubfoot. We did not know before he was born and

have no family history (that we can find)of clubfoot. We initially

saw a doctor that was putting casts on my son, but they were not done

the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

somewhat tramatized by the situation because the doctor did not know

what he was doing and I did not know any better. I found another

doctor who has studied with Dr. Ponseti and has been practicing his

method for 4 years. We are now on our second cast and they have

stayed on!! However, , cries a lot everytime they touch his

foot. They told me he does not need any Tylenol afterwards, but I

have a hard time believing that. They sent me home with a DVD to

watch and I saw that they cut the tendon in his ankle afterwards.

Truthfully, I am having a hard time with that idea. It scares me. I

talked to the doctor about it and they told me that they only give

local anesthetic. I just wanted to talk to some other parents to see

how their experience was. ANy input would help.

Thanks, Kim

[Guest guest]

It's far LESS than circumscision!!! (btw I happily saved little Garrison from

the horror of a circ and I feel so much better about the decison NOT to even if

my mil does find me totally disgusting)

s.

Re: New to the Group

Hi Kim,

Sounds like you've made a good choice in switching doctors. Do you

mind sharing who you were seeing and who you are now seeing? We like

to sort of keep track of who is doing it right and wrong so we can

help other parents make good decisions about choosing a doctor.

Some babies are slightly uncomfortable for the first few hours, or

even a day after casting and I know that some parents do give them a

little tylenol to help with this. If you feel it is warranted I would

check with your regular pediatrician for guidance.

As far as the tenotomy (the tendon cut) goes, I just want to be sure

that they are referring to the achilles tendon - you said in the ankle

-- it's the tendon in the back of the heel/ankle area that should be

released with a tiny snip in the Ponseti method. This procedure is

very minor and truly is easily done under a local anesthetic. It is

so quick, literally a few seconds per foot, no stitches are required.

It's really no more " surgery " than a circumcision. I hope this

helps some!

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

>

> Hi. My name is Kim and I am a member of the other clubfoot group, but

> saw a post for this group and wanted to join because I am having a

> lot of anxiety about my son's treatment. My son, , was born 3-

> 19-06 with right clubfoot. We did not know before he was born and

> have no family history (that we can find)of clubfoot. We initially

> saw a doctor that was putting casts on my son, but they were not done

> the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

> somewhat tramatized by the situation because the doctor did not know

> what he was doing and I did not know any better. I found another

> doctor who has studied with Dr. Ponseti and has been practicing his

> method for 4 years. We are now on our second cast and they have

> stayed on!! However, , cries a lot everytime they touch his

> foot. They told me he does not need any Tylenol afterwards, but I

> have a hard time believing that. They sent me home with a DVD to

> watch and I saw that they cut the tendon in his ankle afterwards.

> Truthfully, I am having a hard time with that idea. It scares me. I

> talked to the doctor about it and they told me that they only give

> local anesthetic. I just wanted to talk to some other parents to see

> how their experience was. ANy input would help.

>

> Thanks, Kim

>

[Guest guest]

Kim,

Welcome to the group and I am sure you will find a lot of great information.

My daughter was older when we found our way to the Ponseti method so I have no

experience with the tenotomy procedure with an infant but my daughter came

through it with flying colors. She was 12 months old when hers was done so it

was done under general anesthesia but I know many people from this group who

had the local anesthesia and all was well. After the 3 week cast came off

after this procedure, I saw my daughter's foot move up and down for the first

time and it was a beautiful thing. I think what this small procedure did is an

amazing thing. I would do it again in a heartbeat if it was necessary because

recovery from it was a breeze. Kelsey had some initial recovery issues

immediately after the procedur but I know this was from the anesthesia she

received and not the procedure.

As far as the Tylenol after casting, my opinion is that if you feel it is

needed, give it to him. No one knows you child as well as you do and he has no

better advocate. I know that after many wasted months with poor casting, my

daughter, Kelsey, would barely allow me to touch her foot and stiill at age 2

1/2, she has very sensitive feet. I know she was in pain when our first ortho

did her casts and she was given Tylenol with their instruction at 14 days old.

I was scared to do that because I know it is not recommended for children under

2 months but she needed it and she got it.

I hope you find comfort here and that we can all help you on the path to

straight feet for . please email me if you have any further questions

about our experience.

Jenni

Kim wrote: Hi. My name is Kim and I am a member

of the other clubfoot group, but

saw a post for this group and wanted to join because I am having a

lot of anxiety about my son's treatment. My son, , was born 3-

19-06 with right clubfoot. We did not know before he was born and

have no family history (that we can find)of clubfoot. We initially

saw a doctor that was putting casts on my son, but they were not done

the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

somewhat tramatized by the situation because the doctor did not know

what he was doing and I did not know any better. I found another

doctor who has studied with Dr. Ponseti and has been practicing his

method for 4 years. We are now on our second cast and they have

stayed on!! However, , cries a lot everytime they touch his

foot. They told me he does not need any Tylenol afterwards, but I

have a hard time believing that. They sent me home with a DVD to

watch and I saw that they cut the tendon in his ankle afterwards.

Truthfully, I am having a hard time with that idea. It scares me. I

talked to the doctor about it and they told me that they only give

local anesthetic. I just wanted to talk to some other parents to see

how their experience was. ANy input would help.

Thanks, Kim

[Guest guest]

Hi Kim - my son started out with a similar treatment; casts that slipped and

very sensitive feet. He had Botox injected into each of his tendons twice, but

there was no effect so I switched doctors. Our new Dr. practices the Ponseti

Method to the letter and all of the subsequent castings went well. Hayden had

the tenotomies done and I will be 100% frank with you - I found it to be WAY

less invasive than the injections. It was extremely quick, he was casted

immediately and bled very little. His feet were just recently graded at .5 and

1 (on the scale of 0-6) and I literally cannot find the tenotomy scar on his

left leg (neither can his doctor!) I was present for the procedure and the

scalpel was tiny, as was the incision. He did not cry any harder than he did

for the Botox (in fact, less) and the first one was performed before I even

knew it happened. I know it is scary to think about a blade touching your

child, but it is such a simple procedure and

so, so quick! I hope you can hear more encouragement from the group. Good

luck!

Kim wrote: Hi. My name is Kim and I am a member

of the other clubfoot group, but

saw a post for this group and wanted to join because I am having a

lot of anxiety about my son's treatment. My son, , was born 3-

19-06 with right clubfoot. We did not know before he was born and

have no family history (that we can find)of clubfoot. We initially

saw a doctor that was putting casts on my son, but they were not done

the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

somewhat tramatized by the situation because the doctor did not know

what he was doing and I did not know any better. I found another

doctor who has studied with Dr. Ponseti and has been practicing his

method for 4 years. We are now on our second cast and they have

stayed on!! However, , cries a lot everytime they touch his

foot. They told me he does not need any Tylenol afterwards, but I

have a hard time believing that. They sent me home with a DVD to

watch and I saw that they cut the tendon in his ankle afterwards.

Truthfully, I am having a hard time with that idea. It scares me. I

talked to the doctor about it and they told me that they only give

local anesthetic. I just wanted to talk to some other parents to see

how their experience was. ANy input would help.

Thanks, Kim

[Guest guest]

Kim,

Welcome to the group!

Some children are very sensitive to touch and just don't like having people mess

with their feet and legs. Not to mention the stretching and the cast holding

the feet in a new (and improved!) position. A pain reliever might help take the

edge off for your little guy--check with his pediatrician.

As far as the tenotomy goes...most of us found it to be far less traumatic and

far less involved than we had thought it would be. My son had tenotomies done

on each foot. They had us put on a numbing cream first (it stayed on for about

an hour). Then he had a shot of local anesthetic into each heel. The procedure

itself--performed with a tiny scalpel--was over before we knew it. I was

holding Jonah's hands, talking to him and watching the whole time. I gave him

Tylenol right after the procedure and he only ever needed the one dose (if he

even needed that). He was crawling around while those casts were still wet.

After three weeks, when the casts came off, he had a teensy weensy scar on each

heel. Now, some 2 years later, you can see the scars only if you have

eagle-mommy eyes.

A wonderful source for more information about the Ponseti method (including a

section on why and how the Achilles tendon is cut) is the Global-HELP booklet.

It's available as a pdf file at:

http://www.global-help.org/publications/Ponseti.2Ed.pdf

We wish the best for you and for . Please do not hesitate to ask any

questions!

Naomi

The Family, North Coast of California

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

Kim wrote: Hi. My name is Kim and I am a member of

the other clubfoot group, but

saw a post for this group and wanted to join because I am having a

lot of anxiety about my son's treatment. My son, , was born 3-

19-06 with right clubfoot. We did not know before he was born and

have no family history (that we can find)of clubfoot. We initially

saw a doctor that was putting casts on my son, but they were not done

the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

somewhat tramatized by the situation because the doctor did not know

what he was doing and I did not know any better. I found another

doctor who has studied with Dr. Ponseti and has been practicing his

method for 4 years. We are now on our second cast and they have

stayed on!! However, , cries a lot everytime they touch his

foot. They told me he does not need any Tylenol afterwards, but I

have a hard time believing that. They sent me home with a DVD to

watch and I saw that they cut the tendon in his ankle afterwards.

Truthfully, I am having a hard time with that idea. It scares me. I

talked to the doctor about it and they told me that they only give

local anesthetic. I just wanted to talk to some other parents to see

how their experience was. ANy input would help.

Thanks, Kim

[Guest guest]

Actually, the blade is I think the same type they use for cataracts, looks more

like a needle than a blade. My dd didn't even have a single drop of blood in her

3 wk cast after her tenotomy. Amazing.

Marcia

Re: New to the Group

Hi Kim - my son started out with a similar treatment; casts that slipped and

very sensitive feet. He had Botox injected into each of his tendons twice, but

there was no effect so I switched doctors. Our new Dr. practices the Ponseti

Method to the letter and all of the subsequent castings went well. Hayden had

the tenotomies done and I will be 100% frank with you - I found it to be WAY

less invasive than the injections. It was extremely quick, he was casted

immediately and bled very little. His feet were just recently graded at .5 and

1 (on the scale of 0-6) and I literally cannot find the tenotomy scar on his

left leg (neither can his doctor!) I was present for the procedure and the

scalpel was tiny, as was the incision. He did not cry any harder than he did

for the Botox (in fact, less) and the first one was performed before I even

knew it happened. I know it is scary to think about a blade touching your

child, but it is such a simple procedure and

so, so quick! I hope you can hear more encouragement from the group. Good

luck!

Kim wrote: Hi. My name is Kim and I am a member

of the other clubfoot group, but

saw a post for this group and wanted to join because I am having a

lot of anxiety about my son's treatment. My son, , was born 3-

19-06 with right clubfoot. We did not know before he was born and

have no family history (that we can find)of clubfoot. We initially

saw a doctor that was putting casts on my son, but they were not done

the Ponseti way. My son lost 5 casts in 10 days. I feel that he was

somewhat tramatized by the situation because the doctor did not know

what he was doing and I did not know any better. I found another

doctor who has studied with Dr. Ponseti and has been practicing his

method for 4 years. We are now on our second cast and they have

stayed on!! However, , cries a lot everytime they touch his

foot. They told me he does not need any Tylenol afterwards, but I

have a hard time believing that. They sent me home with a DVD to

watch and I saw that they cut the tendon in his ankle afterwards.

Truthfully, I am having a hard time with that idea. It scares me. I

talked to the doctor about it and they told me that they only give

local anesthetic. I just wanted to talk to some other parents to see

how their experience was. ANy input would help.

Thanks, Kim

[Guest guest]

Wecome to the group! My son's ankles do the same thing. We have just recently

been fitted for smo's and arch supports. The arch supports are to hold his foot

in a more neutral position, and the smo's will just give him a little more

support to get his balance, we are still working on walking. This is something

to talk to the PT about. Dr. Ponseti didn't think he needed them when we saw

him in Feb., but he is now 18 months old and still not walking, so we are

getting them.

As for AFO's and the Ponseti method, Dr. Ponseti doesn't like them, so even if

Weston's feet look great, Dr. Ponseti might prescribe the DBB or the Ponseti-

brace. Are you sure the brace was set up right in the past? This can

cause major irritation for the kiddos.

I am so glad you are going to see Dr. Ponseti. You are going to love him!

11/19/04 BCF

karencookeathome wrote:

Hi all!

My son Weston was born with a clubfoot on his left side, torticollis

(sp?), and low tone. He received his first cast at 7 days old and

then consecutive casts thereafter for 3 months. The fiberglass casts

were changed every 2-3 weeks. At 3 months old Weston had a heel cord

lengthening surgery (tenotomy?). His leg was then placed in a cast

which was changed again every 2-3 weeks. Then at 5 1/2 months he was

given the DBB. He wore that at first for 18 hours a day then he was

weaned down to 12 hours. He hated the DBB and cried all the time!

After about 3 months with the DBB he began to push down with his

right leg and pull up with his left to get his foot out of the DBB.

We would tighten the DBB as much as possible, but he still managed to

free himself. So our doctor fitted him with an AFO for Weston to

wear when he was sleeping. Weston started pulling up on furniture

around 12 months old. At first his foot was flat, but then gradually

as he was putting more weight on it his left foot reverted back to

its original position. Our doctor wanted us to wait to do anything

until Weston was walking. We disagreed. He seemed to be in pain and

stopped standing up as much. We felt Weston wouldn't walk unless his

foot was flat. We sought another opinion. The new doctor

immediately put Weston in another series of casts, changed every 2

weeks. After that series of casts Weston was fitted with another AFO

for sleeping. Everything seemed fine. Weston started walking at 20

months. At first he was walking on the bottom of his foot. But

again, slowly the foot reverted back to the original position. This

time Weston's physical therapist recommended an AFO for him to wear

all day. We have since been through two sets of AFO's. Weston is

now 2. If he walks barefoot on a hard surface his left foot is

mostly flat. But, if Weston stands on any soft surface like carpet,

our couch or his crib, his foot is completely turned over.

I'm sure his low tone isn't helping any of this. Weston is still in

PT once a week. We are doing the best we know, but it just isn't

good enough.

Because of the advice of some really great ladies, Weston will be

seeing Ponseti next Friday! We are excited and nervous.

I know this is long, but I thought maybe someone would see something

similiar in my story and have some advice.

Cooke

Clayton, NC

Weston - 3/22/04 left clubfoot

[Guest guest]

! Congratulations! If anyone can narrow down the problem and find a

solution to it, it will be the team of doctors at Dr. Ponseti's clinic! Don't

be nervous, you will walk in to an enviornment of pure love and understanding

there, I promise!

best of luck,

ee

New to the group

Hi all!

My son Weston was born with a clubfoot on his left side, torticollis

(sp?), and low tone. He received his first cast at 7 days old and

then consecutive casts thereafter for 3 months. The fiberglass casts

were changed every 2-3 weeks. At 3 months old Weston had a heel cord

lengthening surgery (tenotomy?). His leg was then placed in a cast

which was changed again every 2-3 weeks. Then at 5 1/2 months he was

given the DBB. He wore that at first for 18 hours a day then he was

weaned down to 12 hours. He hated the DBB and cried all the time!

After about 3 months with the DBB he began to push down with his

right leg and pull up with his left to get his foot out of the DBB.

We would tighten the DBB as much as possible, but he still managed to

free himself. So our doctor fitted him with an AFO for Weston to

wear when he was sleeping. Weston started pulling up on furniture

around 12 months old. At first his foot was flat, but then gradually

as he was putting more weight on it his left foot reverted back to

its original position. Our doctor wanted us to wait to do anything

until Weston was walking. We disagreed. He seemed to be in pain and

stopped standing up as much. We felt Weston wouldn't walk unless his

foot was flat. We sought another opinion. The new doctor

immediately put Weston in another series of casts, changed every 2

weeks. After that series of casts Weston was fitted with another AFO

for sleeping. Everything seemed fine. Weston started walking at 20

months. At first he was walking on the bottom of his foot. But

again, slowly the foot reverted back to the original position. This

time Weston's physical therapist recommended an AFO for him to wear

all day. We have since been through two sets of AFO's. Weston is

now 2. If he walks barefoot on a hard surface his left foot is

mostly flat. But, if Weston stands on any soft surface like carpet,

our couch or his crib, his foot is completely turned over.

I'm sure his low tone isn't helping any of this. Weston is still in

PT once a week. We are doing the best we know, but it just isn't

good enough.

Because of the advice of some really great ladies, Weston will be

seeing Ponseti next Friday! We are excited and nervous.

I know this is long, but I thought maybe someone would see something

similiar in my story and have some advice.

Cooke

Clayton, NC

Weston - 3/22/04 left clubfoot

[Guest guest]

Hi - welcome to the group!! We are happy to have you here and you

will find lots of support, advice, suggestions, help, ideas, thoughts, etc.

(Did I just think of all words that mean the same thing?) I was wondering why

your son just got his first casts at three and a half months? Just curious!

chej06 wrote:

Hello Everyone My Name Is and my son has clubfoot. I hope

that I can learn from everyone here and get some tips to make me feel

better! lol Anyway he is three and a half months and just got casts on

his legs yesterday. I will try to get pics up soon. Thanks

Tina

__________________________________________________

[Guest guest]

Hi and Welcome ,

Glad to have you with us. You'll find lots of helpful information

here to help you through the process and we're a pretty darn friendly

bunch too. So was this your son's first set of casts yesterday? How

is he adjusting to them? Please let us know if you have any questions

or concerns and I'm sure you'll get lots of answers!

Welcome Again!

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

>

> Hello Everyone My Name Is and my son has clubfoot. I hope

> that I can learn from everyone here and get some tips to make me feel

> better! lol Anyway he is three and a half months and just got casts on

> his legs yesterday. I will try to get pics up soon. Thanks

> Tina

>