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We live in rural Manitoba, Canada.

> Hi Carla. Welcome to the group. Where do you guys live?

>

>

>

> >From: " Carla " <carlababy77@h...>

> >Reply-To: cfparents@y...

> >To: cfparents@y...

> >Subject: New here

> >Date: Sun, 13 May 2001 15:05:00 -0000

> >

> >Hi everyone. I just joined. I'm searching for a good support

group

> >for parents of CF children and this looked like the best.

> >My 8 week old son was diagnosed with CF last Monday..a total shock

to

> >us, as we thought he had a whole different problem. We spent most

of

> >the week in the hospital with him getting his enzymes worked out.

> >He's still not feeling well..has really fussy times and tummy

aches.

> >We're still having problems adjusting to all this. I just don't

know

> >how I'll ever get over the heartache. How have the rest of you

dealt

> >with the initial adjustment?

> >He takes enzymes with fruit 4 times a day, another med to flush his

> >liver twice a day, plus vitamins. He hates taking any of it, so

it's

> >always a real fight.

> >We also have a 2 1/2 year old son who isn't dealing with the

changes

> >and our absence very well. We didn't know they would be admiting

the

> >baby, so our older one kind of got shunted around all week, and

> >really missed us. He's going to have to get used to it, because I

> >know it won't be the last time we have to leave him. OUr

Children's

> >Hospital and CF team is over 100 miles away, so coming home to see

> >him isn't possible.

> >Anyways, that's my story. I hope to get really involed around

here,

> >because I've found the best support to be from those who've

> >experienced it. Others mean well, but just don't understand.

> >Sad but hopefull,

> >Carla

> >

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

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Guest guest

We live in rural Manitoba, Canada.

> Hi Carla. Welcome to the group. Where do you guys live?

>

>

>

> >From: " Carla " <carlababy77@h...>

> >Reply-To: cfparents@y...

> >To: cfparents@y...

> >Subject: New here

> >Date: Sun, 13 May 2001 15:05:00 -0000

> >

> >Hi everyone. I just joined. I'm searching for a good support

group

> >for parents of CF children and this looked like the best.

> >My 8 week old son was diagnosed with CF last Monday..a total shock

to

> >us, as we thought he had a whole different problem. We spent most

of

> >the week in the hospital with him getting his enzymes worked out.

> >He's still not feeling well..has really fussy times and tummy

aches.

> >We're still having problems adjusting to all this. I just don't

know

> >how I'll ever get over the heartache. How have the rest of you

dealt

> >with the initial adjustment?

> >He takes enzymes with fruit 4 times a day, another med to flush his

> >liver twice a day, plus vitamins. He hates taking any of it, so

it's

> >always a real fight.

> >We also have a 2 1/2 year old son who isn't dealing with the

changes

> >and our absence very well. We didn't know they would be admiting

the

> >baby, so our older one kind of got shunted around all week, and

> >really missed us. He's going to have to get used to it, because I

> >know it won't be the last time we have to leave him. OUr

Children's

> >Hospital and CF team is over 100 miles away, so coming home to see

> >him isn't possible.

> >Anyways, that's my story. I hope to get really involed around

here,

> >because I've found the best support to be from those who've

> >experienced it. Others mean well, but just don't understand.

> >Sad but hopefull,

> >Carla

> >

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

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Guest guest

We live in rural Manitoba, Canada.

> Hi Carla. Welcome to the group. Where do you guys live?

>

>

>

> >From: " Carla " <carlababy77@h...>

> >Reply-To: cfparents@y...

> >To: cfparents@y...

> >Subject: New here

> >Date: Sun, 13 May 2001 15:05:00 -0000

> >

> >Hi everyone. I just joined. I'm searching for a good support

group

> >for parents of CF children and this looked like the best.

> >My 8 week old son was diagnosed with CF last Monday..a total shock

to

> >us, as we thought he had a whole different problem. We spent most

of

> >the week in the hospital with him getting his enzymes worked out.

> >He's still not feeling well..has really fussy times and tummy

aches.

> >We're still having problems adjusting to all this. I just don't

know

> >how I'll ever get over the heartache. How have the rest of you

dealt

> >with the initial adjustment?

> >He takes enzymes with fruit 4 times a day, another med to flush his

> >liver twice a day, plus vitamins. He hates taking any of it, so

it's

> >always a real fight.

> >We also have a 2 1/2 year old son who isn't dealing with the

changes

> >and our absence very well. We didn't know they would be admiting

the

> >baby, so our older one kind of got shunted around all week, and

> >really missed us. He's going to have to get used to it, because I

> >know it won't be the last time we have to leave him. OUr

Children's

> >Hospital and CF team is over 100 miles away, so coming home to see

> >him isn't possible.

> >Anyways, that's my story. I hope to get really involed around

here,

> >because I've found the best support to be from those who've

> >experienced it. Others mean well, but just don't understand.

> >Sad but hopefull,

> >Carla

> >

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

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Guest guest

Hi Carla,

Welcome to the list, you will find a bunch of people here who are very

willing to share their humor, experience, knowledge, tears, smiles and

laughs. Any questions, just ask, I am sure somebody can help, I know they

have helped me.

Take care.

, mommy of 4, 16, and now working at Burger King, yeahh, has

turned me into a taxi, Caleb 6 1/2, doing great in Kindergarten, and a great

big brother, 5, uses many forms of art, including body painting, ughhh,

and a wonderful big sister, and 21 months, CF, GERD, bright blue eyes,

a beautiful smile, who loves Barney, swinging and the outside.

..

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Guest guest

Welcome Carla

This is a great support place, and you can learn so much.

Meds get easier as time goes on and there still may be some enzyme adjustments.

The first year is trial and error IMO, trying to get the right dose , right kind

and so forth.

Hang in there your doing great!

Take care,

Stein......mom to CF (11 mo) & Tori wo/CF (3 1/2 yr)

New here

Hi everyone. I just joined. I'm searching for a good support group

for parents of CF children and this looked like the best.

My 8 week old son was diagnosed with CF last Monday..a total shock to

us, as we thought he had a whole different problem. We spent most of

the week in the hospital with him getting his enzymes worked out.

He's still not feeling well..has really fussy times and tummy aches.

We're still having problems adjusting to all this. I just don't know

how I'll ever get over the heartache. How have the rest of you dealt

with the initial adjustment?

He takes enzymes with fruit 4 times a day, another med to flush his

liver twice a day, plus vitamins. He hates taking any of it, so it's

always a real fight.

We also have a 2 1/2 year old son who isn't dealing with the changes

and our absence very well. We didn't know they would be admiting the

baby, so our older one kind of got shunted around all week, and

really missed us. He's going to have to get used to it, because I

know it won't be the last time we have to leave him. OUr Children's

Hospital and CF team is over 100 miles away, so coming home to see

him isn't possible.

Anyways, that's my story. I hope to get really involed around here,

because I've found the best support to be from those who've

experienced it. Others mean well, but just don't understand.

Sad but hopefull,

Carla

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Guest guest

Welcome Carla

This is a great support place, and you can learn so much.

Meds get easier as time goes on and there still may be some enzyme adjustments.

The first year is trial and error IMO, trying to get the right dose , right kind

and so forth.

Hang in there your doing great!

Take care,

Stein......mom to CF (11 mo) & Tori wo/CF (3 1/2 yr)

New here

Hi everyone. I just joined. I'm searching for a good support group

for parents of CF children and this looked like the best.

My 8 week old son was diagnosed with CF last Monday..a total shock to

us, as we thought he had a whole different problem. We spent most of

the week in the hospital with him getting his enzymes worked out.

He's still not feeling well..has really fussy times and tummy aches.

We're still having problems adjusting to all this. I just don't know

how I'll ever get over the heartache. How have the rest of you dealt

with the initial adjustment?

He takes enzymes with fruit 4 times a day, another med to flush his

liver twice a day, plus vitamins. He hates taking any of it, so it's

always a real fight.

We also have a 2 1/2 year old son who isn't dealing with the changes

and our absence very well. We didn't know they would be admiting the

baby, so our older one kind of got shunted around all week, and

really missed us. He's going to have to get used to it, because I

know it won't be the last time we have to leave him. OUr Children's

Hospital and CF team is over 100 miles away, so coming home to see

him isn't possible.

Anyways, that's my story. I hope to get really involed around here,

because I've found the best support to be from those who've

experienced it. Others mean well, but just don't understand.

Sad but hopefull,

Carla

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  • 7 months later...

Elaine,

Your in the right place for imformation..Someone will try and

figure it out..It sounds to me like it may be Cold urticaria if you

have eliminated detergents and food...I know that some break out

when they excercise also..And you can have more than one kind of

urticaria...they also break out in different ways, little bumps to

huge welts...I am new to this too, so someone will help you..they

are great, and if they can't help with the advise, they can sure

help with the support...It will be a little overwhelming at first

when you read all this stuff, but believe me when I say, things

will get better...Hope he feels better..

Rita

Ty's Mama

> Hello. I just joined your group tonight and hope someone here will

be

> able to help me and my husband. My husband has been suffering from

> what I think are hives for a few years now. Here are the details....

>

> He doesn't start itching until after he undresses in the evening.

> Usually, it is when he takes off his work clothes that his back,

> underarms, and groin area start itching. When I look at his back, I

> can usually tell where to scratch by seeing either small, red bumps

> or thin, red lines. When he scratches, welts show up. We've tried

> changing detergents, etc. to see if that helps, but it hasn't.

>

> Tonight, he had a new experience. He worked out, but b/c the gym was

> out of towels, he was unable to wipe the sweat off his face. While

he

> was working out and sweating, he didn't itch. But once he got

outside

> where it is cold, his face broke out into many red bumps and started

> itching like crazy. This was the first time his face had itched.

>

> I've read what I could find on the internet and think it sounds like

> he might have pressure uticaria or maybe cold uticaria. The part

that

> doesn't make sense is that he doesn't break out in hives until his

> skin is exposed to the air. It only rarely itches while he is still

> dressed.

>

> I've also thought it could be food allergy induced. He is allergic

to

> corn and eggs. We are thinking he could also be allergic to milk,

but

> this hasn't been tested yet.

>

> Does any of this ring a bell with anyone? Can you point me in the

> right direction to find treatment for this (if it exists)?

>

> I appreciate your help,

> Elaine

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Hi Elaine and welcome --ask tons of questions because there are many people

here to help, they are the best! Rita is right it does sound like cold urt,

is he on any meds?? Has he been checked by a doctor?

Ann

>

>Reply-To: urticaria

>To: urticaria

>Subject: Re: New Here

>Date: Tue, 18 Dec 2001 04:59:27 -0000

>

>Elaine,

>Your in the right place for imformation..Someone will try and

>figure it out..It sounds to me like it may be Cold urticaria if you

>have eliminated detergents and food...I know that some break out

>when they excercise also..And you can have more than one kind of

>urticaria...they also break out in different ways, little bumps to

>huge welts...I am new to this too, so someone will help you..they

>are great, and if they can't help with the advise, they can sure

>help with the support...It will be a little overwhelming at first

>when you read all this stuff, but believe me when I say, things

>will get better...Hope he feels better..

>

>

>Rita

>Ty's Mama

>

>

>

> > Hello. I just joined your group tonight and hope someone here will

>be

> > able to help me and my husband. My husband has been suffering from

> > what I think are hives for a few years now. Here are the details....

> >

> > He doesn't start itching until after he undresses in the evening.

> > Usually, it is when he takes off his work clothes that his back,

> > underarms, and groin area start itching. When I look at his back, I

> > can usually tell where to scratch by seeing either small, red bumps

> > or thin, red lines. When he scratches, welts show up. We've tried

> > changing detergents, etc. to see if that helps, but it hasn't.

> >

> > Tonight, he had a new experience. He worked out, but b/c the gym was

> > out of towels, he was unable to wipe the sweat off his face. While

>he

> > was working out and sweating, he didn't itch. But once he got

>outside

> > where it is cold, his face broke out into many red bumps and started

> > itching like crazy. This was the first time his face had itched.

> >

> > I've read what I could find on the internet and think it sounds like

> > he might have pressure uticaria or maybe cold uticaria. The part

>that

> > doesn't make sense is that he doesn't break out in hives until his

> > skin is exposed to the air. It only rarely itches while he is still

> > dressed.

> >

> > I've also thought it could be food allergy induced. He is allergic

>to

> > corn and eggs. We are thinking he could also be allergic to milk,

>but

> > this hasn't been tested yet.

> >

> > Does any of this ring a bell with anyone? Can you point me in the

> > right direction to find treatment for this (if it exists)?

> >

> > I appreciate your help,

> > Elaine

>

Ann

" I get by with a little help from my friends. "

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

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Hi Elaine and welcome --ask tons of questions because there are many people

here to help, they are the best! Rita is right it does sound like cold urt,

is he on any meds?? Has he been checked by a doctor?

Ann

>

>Reply-To: urticaria

>To: urticaria

>Subject: Re: New Here

>Date: Tue, 18 Dec 2001 04:59:27 -0000

>

>Elaine,

>Your in the right place for imformation..Someone will try and

>figure it out..It sounds to me like it may be Cold urticaria if you

>have eliminated detergents and food...I know that some break out

>when they excercise also..And you can have more than one kind of

>urticaria...they also break out in different ways, little bumps to

>huge welts...I am new to this too, so someone will help you..they

>are great, and if they can't help with the advise, they can sure

>help with the support...It will be a little overwhelming at first

>when you read all this stuff, but believe me when I say, things

>will get better...Hope he feels better..

>

>

>Rita

>Ty's Mama

>

>

>

> > Hello. I just joined your group tonight and hope someone here will

>be

> > able to help me and my husband. My husband has been suffering from

> > what I think are hives for a few years now. Here are the details....

> >

> > He doesn't start itching until after he undresses in the evening.

> > Usually, it is when he takes off his work clothes that his back,

> > underarms, and groin area start itching. When I look at his back, I

> > can usually tell where to scratch by seeing either small, red bumps

> > or thin, red lines. When he scratches, welts show up. We've tried

> > changing detergents, etc. to see if that helps, but it hasn't.

> >

> > Tonight, he had a new experience. He worked out, but b/c the gym was

> > out of towels, he was unable to wipe the sweat off his face. While

>he

> > was working out and sweating, he didn't itch. But once he got

>outside

> > where it is cold, his face broke out into many red bumps and started

> > itching like crazy. This was the first time his face had itched.

> >

> > I've read what I could find on the internet and think it sounds like

> > he might have pressure uticaria or maybe cold uticaria. The part

>that

> > doesn't make sense is that he doesn't break out in hives until his

> > skin is exposed to the air. It only rarely itches while he is still

> > dressed.

> >

> > I've also thought it could be food allergy induced. He is allergic

>to

> > corn and eggs. We are thinking he could also be allergic to milk,

>but

> > this hasn't been tested yet.

> >

> > Does any of this ring a bell with anyone? Can you point me in the

> > right direction to find treatment for this (if it exists)?

> >

> > I appreciate your help,

> > Elaine

>

Ann

" I get by with a little help from my friends. "

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

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Hi Elaine, Welcome to the group. My daughter suffers from cold urticaria,

dermographism and pressure urticaria. In Alena's case with the cold

urticaria NOTHING can be exposed. If I HAVE TO take her out in the winter,

I will put on a snowsuit, ski mask, two pairs of gloves, and throw a blanket

over all of that. Otherwise, we don't go out at all. On those kinds of

days, her stomach is usually acting up as well. Any inhalation of cold air

is devasting for her as she will just sleep for hours and hours and it is

almost like the life is sucked out of her. When the weather changes (like

beginning of fall) her symptoms are more mild but still affects exposed

skin. The pressure urticaria mostly affects her feet and waistline, I try

to keep very loose fitting clothes on her. I will mention because of the

physical urticaria's she suffers from and other symptoms she was eventually

diagnosed with mastocytosis.

About milk allergy, please don't rely on a prick test to tell you. I would

just cut out all milk products for two weeks (maybe longer ask your doctor

about this as an alternative to skin testing) and see if there is any

improvement.

Has your husband had any blood work done? What medications is he on? Any

other symptoms? Love, ~Alena's Mom

New Here

> Hello. I just joined your group tonight and hope someone here will be

> able to help me and my husband. My husband has been suffering from

> what I think are hives for a few years now. Here are the details....

>

> He doesn't start itching until after he undresses in the evening.

> Usually, it is when he takes off his work clothes that his back,

> underarms, and groin area start itching. When I look at his back, I

> can usually tell where to scratch by seeing either small, red bumps

> or thin, red lines. When he scratches, welts show up. We've tried

> changing detergents, etc. to see if that helps, but it hasn't.

>

> Tonight, he had a new experience. He worked out, but b/c the gym was

> out of towels, he was unable to wipe the sweat off his face. While he

> was working out and sweating, he didn't itch. But once he got outside

> where it is cold, his face broke out into many red bumps and started

> itching like crazy. This was the first time his face had itched.

>

> I've read what I could find on the internet and think it sounds like

> he might have pressure uticaria or maybe cold uticaria. The part that

> doesn't make sense is that he doesn't break out in hives until his

> skin is exposed to the air. It only rarely itches while he is still

> dressed.

>

> I've also thought it could be food allergy induced. He is allergic to

> corn and eggs. We are thinking he could also be allergic to milk, but

> this hasn't been tested yet.

>

> Does any of this ring a bell with anyone? Can you point me in the

> right direction to find treatment for this (if it exists)?

>

> I appreciate your help,

> Elaine

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

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Hi Ann. Thanks for the welcome from you and Rita. My husband is not

on any meds. He went to an allergist a couple years ago to see what

was going on and he did some scratch tests and found out he's

allergic to corn and eggs. He has not done a very good job of

avoiding those foods however (except plain eggs which he hates). But

he doesn't check labels and I know he eats plenty of things that have

eggs or corn (high fructose corn syrup counts, right?) in it.

His doctor gave him a Rx for some medicine that would stop itching,

but usually the itching episode doesn't last too long (less than 30

minutes it seems) so he doesn't take the medicine since by the time

it would work, the episode would be over anyway. I should clear

something up: He itches a lot here and there, but at night when he

takes off his shirt, he has an attack and that itches like crazy for

about 30 minutes. He's miserable during that time. Other times he

itches, but it doesn't seem to be that " urgent " itching that he has

at night.

I look forward to getting to know everyone. This sure is an active

group!

Take care,

Elaine in Dallas

> Hi Elaine and welcome --ask tons of questions because there are

many people

> here to help, they are the best! Rita is right it does sound like

cold urt,

> is he on any meds?? Has he been checked by a doctor?

> Ann

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Hi Elaine, Unfortuneately we live outside of Cleveland in the snow belt (and

we get awful lake effect snow) but we are trying to move to a warmer

climate. Alena is a tough little cookie (3) and doesn't let any of her

physical stuff slow her down (believe me I chase after her all day hee he)

Thankfully for the most part her meds control most of it.

I am married to a no medicine taker too. (UGH MEN) But there are

antihistimines that can help. My daughter takes zyrtec/zantac together

(known as the z/z combo) in the morning and sometimes at lunch and then she

takes atarax at bedtime (it knocks her out) and she is also on gastrocrom.

If it is the itching that bothers him, perhaps a cream would help. I highly

recommend Aveeno products. They make a wonderful oatmeal cream that helps

and bath products. Another thing we use here (my middle daughter has

mastocytosis as well, but no hives but does itch) is gastrocream. You would

have to ask a doctor for a script for that and it is only made by a few

pharmacies(which I could send if you wanted) however, if he has any stomach

involvement he could ask for a script for Gastrocrom. Ok little

confusing~The Gastrocrom is an oral medication but when mixed with a lotion

base, makes a wonderful anti itch cream.

Does your husband have any trouble with his jaw or teeth? Has he had a root

canal? Does he have any other symptoms besides the hives itching? There

are literally MANY MANY reasons for chronic urticaria. Thyroid, h pylori,

dental infection, the list is long. In my daughters case a rare blood

disorder called mastocytosis. And it took two and half of her three years

of life to get that diagnosed.

I would suggest he sees an allergist or dermatologist or even rhuemotologist

if he has any muscle pain involvement. A lot will depend on if he has other

symptoms. BUT ABOVE ALL ELSE find a doctor that will listen and try to test

for a variety of things. I would suggest he has his IgGAME tested, tsh

levels, wbc, rbc, liver tests. Really basically just a broad range of

everything, just to see if anything comes up. Most often nothing is found

but it is important to rule out as much as possible.

Another thing is to watch his diet and avoid histimine releasing foods and

dyes. It helps to just avoid anything that can cause his triggers to

respond. You could also keep a journal of diet and activities and see if

you find a pattern. I found that very helpful but I know men, so good luck

hee hee

Hope this helps, any other questions ask away and someone will try to

answer. Much Love, ~Alena's Mom

Re: New Here

> Hi . I am so sorry about your daughter. That must be such a

> challenge. I hope you live in a warm climate where you don't have to

> worry too much about the cold.

>

> My husband hasn't had any blood work done. What type of tests does he

> need? Which type of doctor is the best? We live in Dallas so if

> anyone has recommendations, I'd love to hear them.

>

> He's not on any medications. He is one of those types that hates to

> take anything, even tylenol when he has a headache.

>

> Thanks,

> Elaine in Dallas

>

> > Has your husband had any blood work done? What medications is he

> on? Any

> > other symptoms? Love, ~Alena's Mom

>

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribe

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

>

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  • 4 months later...
Guest guest

Hi, . I just want to let you know that it does not matter if

Sara has RSS or not. She is obviously an SGA baby and you are

facing a lot of the same things that we all face with our RSS kids.

Please continue to post messages and ask for advice. The people on

this listserve are the most amazing people from all over the world.

The support we give each other is just great - and most of us have

never even met each other!

I know you have a long road ahead with Sara, but I also know that we

will help you every step of the way, if that is what you want.

Goodness knows, people have helped me a whole lot and I'm one of the

older moms in this group. My RSS child, Max, is almost 14!

Jodi

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Guest guest

Hi, . I just want to let you know that it does not matter if

Sara has RSS or not. She is obviously an SGA baby and you are

facing a lot of the same things that we all face with our RSS kids.

Please continue to post messages and ask for advice. The people on

this listserve are the most amazing people from all over the world.

The support we give each other is just great - and most of us have

never even met each other!

I know you have a long road ahead with Sara, but I also know that we

will help you every step of the way, if that is what you want.

Goodness knows, people have helped me a whole lot and I'm one of the

older moms in this group. My RSS child, Max, is almost 14!

Jodi

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  • 1 year later...

Hi

Welcome. I have a similar story to yours, well at least with the

current pregnancy. I am 27 weeks pg and they found out about a

month ago that the baby has clubfeet. The baby is also measuring

small and they do not know why. A month ago it was less than a

pound. I have a level II ultrasound on Tuesday to check the feet and

size etc. Welcome to the group and good luck.

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Just wanted to welcome you as well and hope you get some good support

and information here in preparation for Hayley's arrival.

I hope you've been reassured to hear that clubfoot can be treated

well. Please let us know if we can help you find or choose a doctor

or help figure out the types of treatment, what to look for, etc..

You have been through such an emotional and traumatic series of

events... I'm so glad your older girl is doing well after her

surgery.

Best wishes for the rest of your pregnancy, and please keep us up to

date.

and CLaire

> My name is and my dd Hayley was just diagnosed in utero (at

30

> wks)with a right club foot. I was pointed towards this board from

> Holly (thanks)!

>

> A little history: I am 38 yrs old. My first dd was

> stillborn at 38 weeks on 2-17-01. A cause could never be found. I

> got pg again immediately, but lost that baby (a little boy)at 12

wks

> due to triploidy. I had a healthy (but very stressful)pg after

that

> and delivered Lynsey at 36 wks on 8-10-02. We got pg

again

> on our first try (yay for clomid)in April, and found at at 6 weeks

> there were 3 sacs. By 8 weeks we were down to 2 sacs and 2 babies

> with hb, and by 10 wks we were down to one seemingly healthy baby.

> Then right sfter Lynsey's first b-day on August it was discovered

> that she had a heart birth defect - coarctation of the aorta (95%

> blocked). They told us we were lucky she lived past a few days

> old. She had heart surgery in Sept and is doing great.

>

> We had already had 8 u/s with this pg and assumed all was ok with

> Hayley, but when we went for a routine 3rd tri growth scan last

week

> they told us she was very small (not even 2 1/2 lbs) and that was

> also when they saw the club foot. My doc is fairly sure the foot

is

> not associated with any chromo abnormalities as everything else

> looks great and they had done a fetal echo at 26 weeks and it

looked

> good.

>

> So now we are in a wait and see pattern until she is born. I will

> be induced between the 36-37 week, so we only have 6 more weeks to

> go at the most.

>

> Sorry this is so long - just wanted to introduce myself!

> Chris

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Hi Chris-

Welcome to our board. I can assure you that the clubfoot isn't going to be

nearly as hard as dealing with a baby that had to have heart surgery!

Congrats on your little daughter to come!

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: New here

>Date: Wed, 29 Oct 2003 19:47:05 -0000

>

>My name is and my dd Hayley was just diagnosed in utero (at 30

>wks)with a right club foot. I was pointed towards this board from

>Holly (thanks)!

>

>A little history: I am 38 yrs old. My first dd was

>stillborn at 38 weeks on 2-17-01. A cause could never be found. I

>got pg again immediately, but lost that baby (a little boy)at 12 wks

>due to triploidy. I had a healthy (but very stressful)pg after that

>and delivered Lynsey at 36 wks on 8-10-02. We got pg again

>on our first try (yay for clomid)in April, and found at at 6 weeks

>there were 3 sacs. By 8 weeks we were down to 2 sacs and 2 babies

>with hb, and by 10 wks we were down to one seemingly healthy baby.

>Then right sfter Lynsey's first b-day on August it was discovered

>that she had a heart birth defect - coarctation of the aorta (95%

>blocked). They told us we were lucky she lived past a few days

>old. She had heart surgery in Sept and is doing great.

>

>We had already had 8 u/s with this pg and assumed all was ok with

>Hayley, but when we went for a routine 3rd tri growth scan last week

>they told us she was very small (not even 2 1/2 lbs) and that was

>also when they saw the club foot. My doc is fairly sure the foot is

>not associated with any chromo abnormalities as everything else

>looks great and they had done a fetal echo at 26 weeks and it looked

>good.

>

>So now we are in a wait and see pattern until she is born. I will

>be induced between the 36-37 week, so we only have 6 more weeks to

>go at the most.

>

>Sorry this is so long - just wanted to introduce myself!

>Chris

>

>

_________________________________________________________________

Cheer a special someone with a fun Halloween eCard from American Greetings!

Go to http://www.msn.americangreetings.com/index_msn.pd?source=msne134

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  • 5 years later...
Guest guest

I am new to the SCD. I am really glad to have found a list that addresses the

issues I am experiencing! I am still in the process of reading BTVC. I have just

been blown away by how the book explains the " how " and " why " of all the various

things that can happen in our guts.

I am still having a hard time wrapping my head around the idea that dairy CAN be

okay under certain circumstances, and how honey is better than stevia or agave

nectar. Both of these ideas TOTALLY contradict what I firmly believed.

I am also having a hard time getting away from the belief that a raw vegan diet

is the ideal, and the most healing diet. I was not a raw vegan, but I always

kind of leaned that way, and I still believe that diet is very cleansing and

healing. But eating meat is part of who I am, so I have been VERY conflicted! I

hope to become more comfortable with all these " new " ideas as time goes on.

I have a 2yo who has reacted to almonds, peanuts, and cashews in the past, so I

need to proceed with caution here as far as ANY nuts go, in case these really

are serious problems for her, and the exposure is too much for her. I will not

be introducing dairy into my diet in ANY form for a while, as I have always been

severely lactose intolerant. And I will use mostly egg whites at first, as the

yolks have not been kind to me.

I have been diagnosed with IBS. Celiac has (so far) been ruled out. I am

sensitive (according to Enterolab testing) to egg, soy, dairy, and gluten. My

responses to these things has been inconsistent (except for dairy, to which I

react strongly every time). I found it really interesting that this was

addressed in BTVC!

I have been using the Feingold diet here for my kids for about five years now.

It has healped their behavioral issues tremendously! And I learned to choose and

prepare much healthier foods through the diet. But I find I need to go further

for myself. Even GFCF wasn't the answer for me. So here I am. Sorry for the long

intro! Marilyn

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Guest guest

At 12:02 PM 3/14/2009, you wrote:

Of course, these days, honey is

too.

Yes, which is why you have to look for pure honey -- but the sugars in

agave a very different from those in honey.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

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Guest guest

I buy honey at local farmer's markets. That's probably the best way to get pure

honey, because you're buying it from the actual beekeepers. Plus, there's a

bonus...it may help your allergies. I don't know if it's SCD, the local honey,

or a combination of both, but me seasonal allergies are almost non-existent this

spring. Normally, I would be ready to gouge my eyes and throat out from the

intense itching, but this year I only have a little mild drainage.

Holly

Crohn's

SCD 12/01/08

> >Of course, these days, honey is too.

>

> Yes, which is why you have to look for pure honey

> -- but the sugars in agave a very different from those in honey.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

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