Re: I'm new

April 8, 2002

Welcome Pat to our list. I think that you will be glad that you found us.

It is a very supportive, loving and caring list. If you have a question, ask

away. Someone will probably know the answer.

I am sorry to hear that your 14 year old may have fibro. It is bad enough to

have to cope with when you are older but to have to learn to cope when you

are young is the pits. I do hope that you are wrong but since you have fibro

you certainly will know what symptoms to look for.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman.

April 8, 2002

Hi Pat: welcome. Isn't it strange how it seems to run in families. My mother and

I were talking about this the other day, when I told her I suspected she had

fibro too, and she said she had thought that herself, but felt she didn't want

to do anything about it due to her age (76). She is like that about her weight

too though, and I do understand the fibro thing about inertia, when you just

feel it's no use. She also has IBS and a lot of the problems I have. I have IBS,

sciatica and fibro. I suspect my youngest daughter has it too, or the beginning

of it. She had a baby not quite 2 years ago and right after she developed what

they called sciatica at first, then she told me they mentioned something about

her muscles, and I do believe it was this. She is a bit better now, but I feel

like me she will get worse as she gets older. My niece also has fibro. My sister

has sciatica and IBS and my brother has IBS. It seems to be a definite weakness

in the immune systems coming down through the generations. Ellie

I'm New

Hello all,

My name is Pat and I'm new to this list. I'm 44, soon

to be 45, and I live in Vermont. I work full time as

a Reading Specialist at the high school in my town, in

the Special Education department. I work mostly with

teens who are dyslexic, although I deal with many

other learning disabilities, too. I have two teenage

daughters, 17 and 14. My oldest is graduating in June

and I'm dreading the empty nest thing! I have raised

my girls alone from the time they were two and six.

Both of my girls have Attention Deficit Disorder, as,

interestingly, does my boyfriend! My kids' doctor

says I know more about ADD than she does! They are

great kids --the oldest made Pro Merito Society and

Who's Who in American High School Students. I'm very

proud--obviously!

I was diagnosed with Fibromyalgia and Sjogren's

Syndrome about six years ago, although I've had the

symptoms of fibro since I was a child and SS since my

twenties. I also have Restless Legs Syndrome,

arthritis, and I suspect, Lupus. I go to a new

rheumatolgist in May. The last one pooh-poohed me.

In the last six months I've had bouts of bursitis and

sciatica that have laid me up for periods of time. I

have other family members with automimmune diseases,

too. I have a brother (37) and an aunt with fibro. I

suspect my mother has fibro, restless legs, and IBS,

although she won't see a specialist. My sister has

IBS. Sadly, I also see signs of fibro and IBS in my

14 year-old.

I hope to find some friendship, support, and

information here. A little humor, a little

commiserating....I'm good!

January 2, 2003

Hi Dawn:-)

My daughter had a cleft palate. It mainly consisted of the soft palate and a

bit of the hard. I was surprised because no one on either side of the

family had a cleft. The plastic surgeon we went to actually told us that her

cleft was caused by the obstruction of her tongue. Her tongue was in the

way when the two sides were to fuse so, they didn't. With the small jaws

and delayed bone age her tongue grew fine but her jaws were just too behind

to fully develop. She also just had it repaired and the surgeon stated that

her tissue was more like tissue paper than cardboard. It should have been

more like cardboard so it made for a ver difficult surgery.

I also have a girlfriend who had a son with a full cleft and she was a great

resource for me so, I hope I can answer some questions for you.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Thu, 2 Jan 2003 13:25:57 -0500

To: RSS-Support >

Subject: I'm New

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Thu, 2 Jan 2003 12:44:02 -0600

Hi Everyone-

I have been reading e-mails for quite some time now. I e-mailed once but

never just ask a question and never relayed my story. My daughter Emilia was

born with a cleft lip/plate. She was 4 weeks early and weighed 4 lbs 8 ozs.

She is now 1 years old and weighs 9lbs 13 ozs. She was a little over 10 lbs

once but after her lip surgery she lost a few ounces and hasn't gained it

back yet. She only eats 4ozs every 3 hours but sleeps through the night. We

are going to a genetic doctor Monday to see if she indeed has RSS. We have

been to every doctor and nobody seems to know. She doesn't have a lot of RSS

characteristics except her weight, and developmental delays and low muscle

tone. Emilia just started working with a PT in Nov. She has help a great

deal!

I wanted to know if anyone in the support group has a child with a cleft

lip/plate? This is a great support group. Reading the e-mails helped my

husband and self understand RSS a lot better. Thanks! I'll let everyone know

how it goes on Monday. I would love to hear from anybody especially parents

of clefts.

Dawn mom to Emilia

January 2, 2003

Hi ,

Thanks for responding. How old is your daughter? And what is her name?

The surgeon was pleased with her lip, but is waiting until April or so for

her plate. We are wondering if her plate should be done sooner to help with

feeding issues. What did you give your daughter to eat? Emilia is still

mainly on formula. She doesn't seem to interested in baby food. I have a ton

go questions for you, if you don't mind.

It was a surprised to us too about her cleft. No one has it on either of

our sides. But I guess like everything else, life is a mystery.

How did your daughter's recovery go? Best wishes to her for a speedy

recovery.

Dawn

January 2, 2003

Hi Dawn!

Welcome to the group. My daughter, Jordan, was born with a cleft

palette. She's had the palette repaired twice now. Once at 15 months and

again at 4 1/2. She is 9 now and still is followed by a cleft palette team.

Surgery may be in the future as she gets bigger!!! Good luck with your

appointment. Have you checked out the pictures posted?

Passaglia

In a message dated 1/2/03 10:43:32 AM Pacific Standard Time,

cdgrover@... writes:

> Hi Everyone-

> I have been reading e-mails for quite some time now. I e-mailed once but

> never just ask a question and never relayed my story. My daughter Emilia

> was

> born with a cleft lip/plate. She was 4 weeks early and weighed 4 lbs 8 ozs.

> She is now 1 years old and weighs 9lbs 13 ozs. She was a little over 10 lbs

> once but after her lip surgery she lost a few ounces and hasn't gained it

> back yet. She only eats 4ozs every 3 hours but sleeps through the night.

> We

> are going to a genetic doctor Monday to see if she indeed has RSS. We have

> been to every doctor and nobody seems to know. She doesn't have a lot of

> RSS

> characteristics except her weight, and developmental delays and low muscle

> tone. Emilia just started working with a PT in Nov. She has help a great

> deal!

> I wanted to know if anyone in the support group has a child with a cleft

> lip/plate? This is a great support group. Reading the e-mails helped my

> husband and self understand RSS a lot better. Thanks! I'll let everyone

> know

> how it goes on Monday. I would love to hear from anybody especially parents

> of clefts.

> Dawn mom to Emilia

>

January 3, 2003

Hi Dawn, Darcy doesn't have a cleft lip/palate but a similar

problem " downstairs " (severe hypospadias - genital malformation where

his urethra opens out at the base of his penis instead of the tip)

with severe chordee (bending) and bifid (separated), small scrotum

which is also in the wrong spot (above his penis instead of below).

He also has a number of other minor physical malformations that are

NOT considered to be part of RSS, but he still had RSS.

Steph (Darcy 3 8.3kg 84cm various minor physical malformations and

Tessa 7)

> Hi Everyone-

> I have been reading e-mails for quite some time now. I e-mailed

once but

> never just ask a question and never relayed my story. My daughter

Emilia was

> born with a cleft lip/plate. She was 4 weeks early and weighed 4

lbs 8 ozs.

> She is now 1 years old and weighs 9lbs 13 ozs. She was a little

over 10 lbs

> once but after her lip surgery she lost a few ounces and hasn't

gained it

> back yet. She only eats 4ozs every 3 hours but sleeps through the

night. We

> are going to a genetic doctor Monday to see if she indeed has RSS.

We have

> been to every doctor and nobody seems to know. She doesn't have a

lot of RSS

> characteristics except her weight, and developmental delays and low

muscle

> tone. Emilia just started working with a PT in Nov. She has help a

great

> deal!

> I wanted to know if anyone in the support group has a child

with a cleft

> lip/plate? This is a great support group. Reading the e-mails

helped my

> husband and self understand RSS a lot better. Thanks! I'll let

everyone know

> how it goes on Monday. I would love to hear from anybody especially

parents

> of clefts.

> Dawn mom to Emilia

June 22, 2003

I BELIEVE YOU CAN. YOU WILL JUST HAVE TO TAKE IN ALL YOUR VITAMINS AND

MINERALS THAT YOU NEED FOR YOU AND THE BABY.

ROBIN, NEW YORK

OPEN RNY

OCT. 18TH, 2002

DR. EDWARD HIXSON

SARANAC LAKE, NY

378/265/170???

113 LBS GONE FOREVER : )

June 22, 2003

As far as daily is concerned if what you mean is this a busy group the

answer is YES. You can post as much or little as you like. Welcome

Lenore

I'm New

Hi my name is Kim and I had the Gastric Bypass RNY on November 4th

2002. I starting weight was 330 and I am down to 233. My husband and I

are trying to have a baby and I wanted to join a group that would

answer some questions of mine. We live in Brunswick, ME and we have a

21 month old boy. My concern is breastfeeding. Will I be able to

breast feed? If anyone could answer that I would be grateful. I am

looking for a message board that people post daily. I would love to

post daily also. Thanks so much. ~KIM

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

June 22, 2003

Kim,

WLS doesn't prevent you from breastfeeding. I know I plan on it!

Becky S

> Hi my name is Kim and I had the Gastric Bypass RNY on November 4th

> 2002. I starting weight was 330 and I am down to 233. My husband

and I

> are trying to have a baby and I wanted to join a group that would

> answer some questions of mine. We live in Brunswick, ME and we

have a

> 21 month old boy. My concern is breastfeeding. Will I be able to

> breast feed? If anyone could answer that I would be grateful. I am

> looking for a message board that people post daily. I would love to

> post daily also. Thanks so much. ~KIM

June 22, 2003

> Thanks Becky, I read in the email that the group sends

> to new members that there is no link to why we cant. I

> was just worried because I want to be faithful with

> breastfeeding the second time around. ~KIM

Although it would have been different if she'd been a

newborn...

my daughter was still a nursling when I had surgery. I

nursed her just a few hours before surgery...and nursed

her about 12 hours after surgery...and continued to

nurse her until I get pregnant with my son (who is now 9

months old...and a strong nurser)

Nope..WLS shouldn't interfere with breastfeeding. (like

everyone...you need to be healthy, though.)

Soderblom CCCE CD(DONA) ICD CLD

Student Midwife

CAPPA Board of Directors - Advisor

Birth Doula/Childbirth Educator/Pregnancy-Birth

Photography

Mesa, AZ

Owner: Birth Story Diaries - real births, real photos

http://www.birthdiaries.com

Owner: SouthwestDoulas.com - locate a birth

professional

or find out about a hospital in your area!

June 22, 2003

You can breastfeed. My DD is 7 weeks old and is breastfed. I sometimes have to

supplement a little formula (2 ounces) at the end of the day because she feeds

almost constantly from 6PM to 10PM ... and I get a little sore. I find that

like while I was pregnant I have a larger appetite. I'm hoping that the

appetite will settle down a bit so I can lose these last 20 pounds.

I'm New

Hi my name is Kim and I had the Gastric Bypass RNY on November 4th

2002. I starting weight was 330 and I am down to 233. My husband and I

are trying to have a baby and I wanted to join a group that would

answer some questions of mine. We live in Brunswick, ME and we have a

21 month old boy. My concern is breastfeeding. Will I be able to

breast feed? If anyone could answer that I would be grateful. I am

looking for a message board that people post daily. I would love to

post daily also. Thanks so much. ~KIM

June 23, 2003

In a message dated 6/22/03 7:33:03 PM Central Daylight Time,

elfanie@... writes:

> my daughter was still a nursling when I had surgery. I

> nursed her just a few hours before surgery...and nursed

> her about 12 hours after surgery

I was hoping that once I had the baby (Vaginally) I hope , I could get

my tummy tuck and hernia repair shortly there after and use he time to recover

and bond with the baby before goin back to work , but I am not sure if I had a

C Section how long I would have to wait before getting my hernia and tummy

tuck done? Do you think it would pose a problem with the breastfeeding since I

would be on pain meds while in the hospital which I believe is at least a 3

day stay ?

Thanks

June 23, 2003

,

When I had my second daughter, my neighbor had her son the same day

but via c-section. She breastfed in the hospital, even while on the

morphine pump. As far as I know, pain meds do not inhibit

breastfeeding.

Becky S

> In a message dated 6/22/03 7:33:03 PM Central Daylight Time,

> elfanie@s... writes:

>

> > my daughter was still a nursling when I had surgery. I

> > nursed her just a few hours before surgery...and nursed

> > her about 12 hours after surgery

>

> I was hoping that once I had the baby (Vaginally) I hope , I

could get

> my tummy tuck and hernia repair shortly there after and use he

time to recover

> and bond with the baby before goin back to work , but I am not

sure if I had a

> C Section how long I would have to wait before getting my hernia

and tummy

> tuck done? Do you think it would pose a problem with the

breastfeeding since I

> would be on pain meds while in the hospital which I believe is at

least a 3

> day stay ?

>

> Thanks

>

June 24, 2003

kim, welcome to this board, it has been such a wonderful support and lots of

info i would have never known...good luck

Robin

RNY 2/27/2002

Little 06/26/03

5 precious children to light the way

August 31, 2004

Welcome to the board!!! What state are you located in? Maybe there

is a Ponseti doctor relatively close or not too long driving

distance. I recommend a 2nd opinion as soon as you can. Most

persons on this board will probably agree that no surgeries is the

way to go. What type of casting was done? Did they change the casts

every week? The achilles tendon surgery (tenotomy)is common with the

Ponseti method also, but most of the time it is the only one. Some

persons drive up to 10 hours (or more)just to see an authorized

Ponseti doctor. If you can prevent future surgeries and future

potential feet problems it is well worth the trip. Friday is close

by, but maybe you can postpone the surgery so you can do further

research. Please let us know what you decide and keep us posted.

Good luck to your little one!

P.S. It is not too late to start the Ponseti method now.

> My son was born with both feet clubbed and is scheduled to have

> surgery this Friday. He'll had a achilles tendon release, but also

> needs pins in his feet because the bones in his feet are not lined

up

> properly. I'm nervous about the surgery and how much pain he might

be

> in afterward, he's nine months old. I'm also concerned that he may

> have muscle weakness and sore feet later in life, I just learned

> about this after reading about the Ponseti method. No one in our

> state uses the Ponseti method, although my son has had casts on his

> feet since birth, so that sounds the same.

>

> Can you give me any words of wisdom for the surgery? Things to be

> aware of ahead of time?

August 31, 2004

Welcome to this board! I can only imagine how nervous you must feel

about an impending surgery. Many others on this board started the

Ponseti method later as an alternative to impending surgeries

suggested by their original (non Ponseti) doctors. Just know that it

is not too late to seek a second opinion prior to going through with

the surgery. There are Shriners Hospitals (whose services are free)

that have qualified Ponseti doctors. Also, Dr. Ponseti himself will

answer emails if you have any questions or need a recommendation for

a doctor close to you. There are organizations such as Angel Flights

that offer free flights for those in need of medical services as well

as organizations like The Mc House that will provide

accomodations during treatment for a small fee.

There may be doctors in your state who are in fact practicing the

Ponseti Method but are not yet listed on Dr. Ponseti's website.

Please let us know where you are located so that we can help steer

you in the right direction.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/24

> My son was born with both feet clubbed and is scheduled to have

> surgery this Friday. He'll had a achilles tendon release, but also

> needs pins in his feet because the bones in his feet are not lined

up

> properly. I'm nervous about the surgery and how much pain he might

be

> in afterward, he's nine months old. I'm also concerned that he may

> have muscle weakness and sore feet later in life, I just learned

> about this after reading about the Ponseti method. No one in our

> state uses the Ponseti method, although my son has had casts on his

> feet since birth, so that sounds the same.

>

> Can you give me any words of wisdom for the surgery? Things to be

> aware of ahead of time?

August 31, 2004

Welcome to the group.

Like others have said, it's not too late to go the non-surgical route. With

the Ponseti method only 5 to 7 casts are generally required to correct the

feet and in your son's case it could be less since he has already had casts

on for nine months. Our daughter Emma was in casts for 3 months and was

headed for another 3 months of casts before surgery. We went to see Dr.

Ponseti and he was able to correct her feet with just 3 casts and a tenotomy

on both feet. It's important to note that the tenotomy is not the same as

the tendon release. A tenotomy is much less invasive and leaves no scarring

on the tendon.

Another important factor to consider is that clubfeet can relapse. If your

son's feet are corrected surgically he will require the same surgery if a

relapse occurs. With the Ponseti method relapses are treated with 2 or 3

casts or in some cases with an anterior tibialis tendon transfer. This

procedure is also much less invasive than traditional release surgeries.

Your current doctor will likely be resistant. We were originally seeing a

doctor at the Montreal Shriner's who, along with his colleagues, was against

the method. The Montreal Shriner's is now a staunch advocate of the Ponseti

method and won't even refer clubfoot patients to doctors who haven't yet

learned the technique.

I realize this e-mail sounds like a sales pitch but with Friday being so

close I just really want to convince you to get a second opinion. You can

always go with the surgery afterward if you still feel it's the best way to

go. Since there is no surgery involved with the Ponseti method you really

won't have done anything irreversible to your son's feet. With the surgery,

whatever the outcome, it will be permanent.

Best of luck!

Dan Montagano

I'm new

My son was born with both feet clubbed and is scheduled to have

surgery this Friday. He'll had a achilles tendon release, but also

needs pins in his feet because the bones in his feet are not lined up

properly. I'm nervous about the surgery and how much pain he might be

in afterward, he's nine months old. I'm also concerned that he may

have muscle weakness and sore feet later in life, I just learned

about this after reading about the Ponseti method. No one in our

state uses the Ponseti method, although my son has had casts on his

feet since birth, so that sounds the same.

Can you give me any words of wisdom for the surgery? Things to be

aware of ahead of time?

August 31, 2004