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Welcome Sheila,

The people on this list are very kind and supportive.

My granddaughter Shelby was diagnosed in February at 3 months old. I

remember how completely lost and frightened I was. This list (and others)

certainly helps so keep reading.

Margaret.

New to List

> Hello,

>

> I wanted to introduce myself to everybody. I am the mother of two

beautiful

> girls, ages 4, and 16 months. My 4 year old was just diagnosed with CF

last

> week. She has suffered from a prolapsed rectum for over two years and has

> had problems with her digestive system since birth. My 16 month old has

not

> been tested yet, but I doubt she will test positive. We were relieved to

> finally have an answer as to what was wrong with Makenzie, but we were

> devastated to find out it was CF. My brain feels like mush from all the

> information I have been absorbing. I hope to learn a lot through all of

> you. I have a lot of questions that I am sure some of you can help me

> with. I won't dump them all on you at once. I know that my doctor said

> they are so close to a cure, but how close is close? And, what is the

> average age these days that people with CF are living to? I hope to hear

> from you all soon. Thanks.

>

> Sheila Goff

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

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  • 5 weeks later...

Hello Hillary, My name is Simone Price and just found out my 2 and a half

year old daughter has RSS (although the doctor still isn't quite sure). She

is very small for her age and has the typical little fingers, bad eater, is

not walking yet and talking is difficult. I know you were asking others for

support but if you don't mind I would love to hear your challenges and

experiences. We don't know much about RSS. Its difficult to get info here in

Holland, where we live so any information is welcome.

The doctor told us to wait with speach lessons until she is three and we

should give her some time to develop in her own time. Also do you have

experience with Growth Hormone?

Thanks, Simone

-----Oorspronkelijk bericht-----

Van: Hillary nsen

Verzonden: vrijdag 10 augustus 2001 4:04

Aan: RSS-Support

Onderwerp: New to list

Hi. I'm new to the list and just thought that I would take a minute to

introduce myself. I'm a 19 year old female with RSS and I joined the list

in search of finding others like me. I've read the posts for the last few

days and it seems that most of the list is parents w/ RSS children, but it

feels good just to know that I have a place to go where others are like me

and facing some of the same challenges.

Best Wishes,

Hillary

_________________________________________________________________

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

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Hi Simone,

I thought I would send quick answers to your questions from my

perspective...

I am 24 years old and was diagnosed with RSS at 13 months (a

geneticist confirmed this dx last November). I too was very small,

have the little finger thing and was a late walker (probably partly

due to hip dysplasia(sp?) too). I never ate a lot, but would eat

throughout the day. I don't think I had any speech delays, though

(never had ST, anyway, and I'm okay now)... and Growth Hormone wasn't

a well-known option at that time, so I didn't use it.

I'm now 4'8 " (almost) and about 80lbs. Still tiny. :) But for the

most part, it hasn't had a huge impact on my life. Definitely the

three most annoying things about it are: clothes, driving and the

strangers that stare. But those really are such unimportant

things, I'm really very lucky. I'm currently working on my PhD in

neuroscience and think I'm a fairly well adjusted person (although

there are some days I think I was crazy to come to grad school, but

that's another story!). ;) just trying to say that I think a lot of

the RSS issues get easier as kids get older. Medically, I don't have

any problems related to RSS (although, I have to admit, I don't think

I did as a child either)...

I don't know if that helps or not... just my experiences...

-Ana

> Hello Hillary, My name is Simone Price and just found out my 2 and a

half

> year old daughter has RSS (although the doctor still isn't quite

sure). She

> is very small for her age and has the typical little fingers, bad

eater, is

> not walking yet and talking is difficult. I know you were asking

others for

> support but if you don't mind I would love to hear your challenges

and

> experiences. We don't know much about RSS. Its difficult to get info

here in

> Holland, where we live so any information is welcome.

> The doctor told us to wait with speach lessons until she is three

and we

> should give her some time to develop in her own time. Also do you

have

> experience with Growth Hormone?

> Thanks, Simone

>

> -----Oorspronkelijk bericht-----

> Van: Hillary nsen [mailto:grace_08@h...]

> Verzonden: vrijdag 10 augustus 2001 4:04

> Aan: RSS-Support@y...

> Onderwerp: New to list

>

>

> Hi. I'm new to the list and just thought that I would take a minute

to

> introduce myself. I'm a 19 year old female with RSS and I joined

the list

> in search of finding others like me. I've read the posts for the

last few

> days and it seems that most of the list is parents w/ RSS children,

but it

> feels good just to know that I have a place to go where others are

like me

> and facing some of the same challenges.

> Best Wishes,

> Hillary

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

>

>

>

>

>

>

>

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Hi Simone,

I thought I would send quick answers to your questions from my

perspective...

I am 24 years old and was diagnosed with RSS at 13 months (a

geneticist confirmed this dx last November). I too was very small,

have the little finger thing and was a late walker (probably partly

due to hip dysplasia(sp?) too). I never ate a lot, but would eat

throughout the day. I don't think I had any speech delays, though

(never had ST, anyway, and I'm okay now)... and Growth Hormone wasn't

a well-known option at that time, so I didn't use it.

I'm now 4'8 " (almost) and about 80lbs. Still tiny. :) But for the

most part, it hasn't had a huge impact on my life. Definitely the

three most annoying things about it are: clothes, driving and the

strangers that stare. But those really are such unimportant

things, I'm really very lucky. I'm currently working on my PhD in

neuroscience and think I'm a fairly well adjusted person (although

there are some days I think I was crazy to come to grad school, but

that's another story!). ;) just trying to say that I think a lot of

the RSS issues get easier as kids get older. Medically, I don't have

any problems related to RSS (although, I have to admit, I don't think

I did as a child either)...

I don't know if that helps or not... just my experiences...

-Ana

> Hello Hillary, My name is Simone Price and just found out my 2 and a

half

> year old daughter has RSS (although the doctor still isn't quite

sure). She

> is very small for her age and has the typical little fingers, bad

eater, is

> not walking yet and talking is difficult. I know you were asking

others for

> support but if you don't mind I would love to hear your challenges

and

> experiences. We don't know much about RSS. Its difficult to get info

here in

> Holland, where we live so any information is welcome.

> The doctor told us to wait with speach lessons until she is three

and we

> should give her some time to develop in her own time. Also do you

have

> experience with Growth Hormone?

> Thanks, Simone

>

> -----Oorspronkelijk bericht-----

> Van: Hillary nsen [mailto:grace_08@h...]

> Verzonden: vrijdag 10 augustus 2001 4:04

> Aan: RSS-Support@y...

> Onderwerp: New to list

>

>

> Hi. I'm new to the list and just thought that I would take a minute

to

> introduce myself. I'm a 19 year old female with RSS and I joined

the list

> in search of finding others like me. I've read the posts for the

last few

> days and it seems that most of the list is parents w/ RSS children,

but it

> feels good just to know that I have a place to go where others are

like me

> and facing some of the same challenges.

> Best Wishes,

> Hillary

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

>

>

>

>

>

>

>

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  • 1 month later...

Hello to all! I'm new to the group and I wanted to introduce

myself. I had surgery in July, 1999 at Pitt Memorial Hospital

in Greenville, NC. (Dr. Cunningham) My pre-op weight was

261 and I am 5'2 " tall. I reached a low weight of 127 in August

of 2000 and now I am at 146. Needless to say, I am not happy

with the weight gain. I am interested in the discussion on iron

levels. I just caught some of the discussion about the differnces

in iron supplements. I am extremely anemic now and my regular

doctor has prescribed 325 mg of ferrous sulfate 3 times a day to try

to get my levels up. He said my iron was a 9. Could anyone be so

kind as to enlighten me on the iron issues. Also, I am very

interested in the protein issues. My doc has never said anything

about the importance of getting in the protein.

My regular doctor (an internist) doesn't know a thing about gastric

bybass and therefore hasn't been much help to me. Dr. Cunningham

doesn't seem too interested either, unless the question relates

directly to the actual surgery. (incision, etc) I have really

enjoyed reading all the posts from everyone. We all need the support

we can get from one another. I'm so glad I found this forum!!

Thanks again for listening!!

Judy in NC

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Judy,

Welcome to the group! I am also taking the Iron 3x a day, but find it

difficult to get all three in, plus the 3 doses of Calcium I'm supposed to

take. I also forgot at least one dose, and it frustrates me to no end. Can

I ask if your weight is stable now? The fear and/or reality of re-gain is

scary, and I'm just curious if you are now able to maintain your weight, or

find it a struggle. I am just a little bit behind you, and am struggling to

stop the regain - I'm up 5 pounds this month, for the first time. It would

be a great help if you could share what you've been through.

Helene

RNY 12/22/99

350 then/158 now

bujwater@... wrote:

> Hello to all! I'm new to the group and I wanted to introduce

> myself. I had surgery in July, 1999 at Pitt Memorial Hospital

> in Greenville, NC. (Dr. Cunningham) My pre-op weight was

> 261 and I am 5'2 " tall. I reached a low weight of 127 in August

> of 2000 and now I am at 146. Needless to say, I am not happy

> with the weight gain. I am interested in the discussion on iron

> levels. I just caught some of the discussion about the differnces

> in iron supplements. I am extremely anemic now and my regular

> doctor has prescribed 325 mg of ferrous sulfate 3 times a day to try

> to get my levels up. He said my iron was a 9. Could anyone be so

> kind as to enlighten me on the iron issues. Also, I am very

> interested in the protein issues. My doc has never said anything

> about the importance of getting in the protein.

>

> My regular doctor (an internist) doesn't know a thing about gastric

> bybass and therefore hasn't been much help to me. Dr. Cunningham

> doesn't seem too interested either, unless the question relates

> directly to the actual surgery. (incision, etc) I have really

> enjoyed reading all the posts from everyone. We all need the support

> we can get from one another. I'm so glad I found this forum!!

> Thanks again for listening!!

> Judy in NC

>

> Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

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Judy,

Thanks so much for writing. I am going through similar things. I have been

loosing, and everyone was telling me I was too thin (even though at 5'5 " I was

down

to 150 - not thin for a " normal " person!). But I went from losing to gaining.

I

feel as if I can eat a huge volume.

The protein is very important. We should be eating about 75 gms each day. From

experience, I know that if I concentrate on eating protein, then veggies and

fruit,

with very little carbs and almost no sugar, the hunger is lessened and weight

lose

is increased. I eat so many more types of protein than I ever though - I add

tofu

to everything I cook, or throw in shrimp, scallops, even calamari rings (great

protein, no fat). Beans, legumes, turkey sausage (they make fabulous flavored

sausage that I cut up and add to many dishes, or eat like a hot dog for lunch at

work). Of course, I was eating protein bars, but now have to watch because I

started regarding them as candy bars, and one day ate three of them. It's

better to

get the protein from real food. I would suggest you try a higher than usual

protein

routine for a few days, and see if it helps. Keep in touch - we can help each

other!

Helene

Judy Waters wrote:

> Helene, I started gaining sometime after September of last year. The funny

> thing is that before that I couldn't stop losing. I was actually getting

afraid

> that the weight loss would not stop. 127 was too small for me. I looked bad!

> So when I gained a little bit I looked better and everyone noticed that. I

had

> a spell with enlarged lympth nodes back in the late winter. Docs couldn't

> determine what the cause. I had a large lympth node removed from under my arm

> and thank God it was not cancer. My lympth nodes are all still enlarged!! No

> one seems to be able to figure it out. I am not sick but am anemic and tired.

> The weight gain has been continuous, slow and steady. My general doctor (an

> internist) asks how I feel and comments you gained a few pounds, thats good!!

> Well, I don't eat enough to have gained this weight. I've said it a hundred

> times!!

> My thyroid is within normal range, but low. I don't exercise like I should,

but

> then again I never did even in the beginning. I guess I'm going to have to

diet

> or something. I want to know more about the protein thing. How can it help.

> I'd love to continue to share our journey together. Talk to you soon.

>

> Judy

>

> hwd112 wrote:

>

> > Judy,

> > Welcome to the group! I am also taking the Iron 3x a day, but find it

> > difficult to get all three in, plus the 3 doses of Calcium I'm supposed to

> > take. I also forgot at least one dose, and it frustrates me to no end. Can

> > I ask if your weight is stable now? The fear and/or reality of re-gain is

> > scary, and I'm just curious if you are now able to maintain your weight, or

> > find it a struggle. I am just a little bit behind you, and am struggling to

> > stop the regain - I'm up 5 pounds this month, for the first time. It would

> > be a great help if you could share what you've been through.

> >

> > Helene

> > RNY 12/22/99

> > 350 then/158 now

> >

> > bujwater@... wrote:

> >

> > > Hello to all! I'm new to the group and I wanted to introduce

> > > myself. I had surgery in July, 1999 at Pitt Memorial Hospital

> > > in Greenville, NC. (Dr. Cunningham) My pre-op weight was

> > > 261 and I am 5'2 " tall. I reached a low weight of 127 in August

> > > of 2000 and now I am at 146. Needless to say, I am not happy

> > > with the weight gain. I am interested in the discussion on iron

> > > levels. I just caught some of the discussion about the differnces

> > > in iron supplements. I am extremely anemic now and my regular

> > > doctor has prescribed 325 mg of ferrous sulfate 3 times a day to try

> > > to get my levels up. He said my iron was a 9. Could anyone be so

> > > kind as to enlighten me on the iron issues. Also, I am very

> > > interested in the protein issues. My doc has never said anything

> > > about the importance of getting in the protein.

> > >

> > > My regular doctor (an internist) doesn't know a thing about gastric

> > > bybass and therefore hasn't been much help to me. Dr. Cunningham

> > > doesn't seem too interested either, unless the question relates

> > > directly to the actual surgery. (incision, etc) I have really

> > > enjoyed reading all the posts from everyone. We all need the support

> > > we can get from one another. I'm so glad I found this forum!!

> > > Thanks again for listening!!

> > > Judy in NC

> > >

> > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG

> > >

> > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe

> > >

> > >

> > >

> > >

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Judy, maybe you should have the thyroid tested again.

I tested normal for thyroid for several years, even

though I was gaining like crazy (pre-WLS). When I

went for preop for VBG, found my thryoid was enlarged,

partially blocking airway and I had to have

thryoidectomy before surgeon would proceed with the

VBG. If your thyroid level is low, I would retest.

judy in austin

--- hwd112 wrote:

> Judy,

> Thanks so much for writing. I am going through

> similar things. I have been

> loosing, and everyone was telling me I was too thin

> (even though at 5'5 " I was down

> to 150 - not thin for a " normal " person!). But I

> went from losing to gaining. I

> feel as if I can eat a huge volume.

>

> The protein is very important. We should be eating

> about 75 gms each day. From

> experience, I know that if I concentrate on eating

> protein, then veggies and fruit,

> with very little carbs and almost no sugar, the

> hunger is lessened and weight lose

> is increased. I eat so many more types of protein

> than I ever though - I add tofu

> to everything I cook, or throw in shrimp, scallops,

> even calamari rings (great

> protein, no fat). Beans, legumes, turkey sausage

> (they make fabulous flavored

> sausage that I cut up and add to many dishes, or eat

> like a hot dog for lunch at

> work). Of course, I was eating protein bars, but

> now have to watch because I

> started regarding them as candy bars, and one day

> ate three of them. It's better to

> get the protein from real food. I would suggest you

> try a higher than usual protein

> routine for a few days, and see if it helps. Keep

> in touch - we can help each

> other!

>

> Helene

>

> Judy Waters wrote:

>

> > Helene, I started gaining sometime after

> September of last year. The funny

> > thing is that before that I couldn't stop losing.

> I was actually getting afraid

> > that the weight loss would not stop. 127 was too

> small for me. I looked bad!

> > So when I gained a little bit I looked better and

> everyone noticed that. I had

> > a spell with enlarged lympth nodes back in the

> late winter. Docs couldn't

> > determine what the cause. I had a large lympth

> node removed from under my arm

> > and thank God it was not cancer. My lympth nodes

> are all still enlarged!! No

> > one seems to be able to figure it out. I am not

> sick but am anemic and tired.

> > The weight gain has been continuous, slow and

> steady. My general doctor (an

> > internist) asks how I feel and comments you gained

> a few pounds, thats good!!

> > Well, I don't eat enough to have gained this

> weight. I've said it a hundred

> > times!!

> > My thyroid is within normal range, but low. I

> don't exercise like I should, but

> > then again I never did even in the beginning. I

> guess I'm going to have to diet

> > or something. I want to know more about the

> protein thing. How can it help.

> > I'd love to continue to share our journey

> together. Talk to you soon.

> >

> > Judy

> >

> > hwd112 wrote:

> >

> > > Judy,

> > > Welcome to the group! I am also taking the Iron

> 3x a day, but find it

> > > difficult to get all three in, plus the 3 doses

> of Calcium I'm supposed to

> > > take. I also forgot at least one dose, and it

> frustrates me to no end. Can

> > > I ask if your weight is stable now? The fear

> and/or reality of re-gain is

> > > scary, and I'm just curious if you are now able

> to maintain your weight, or

> > > find it a struggle. I am just a little bit

> behind you, and am struggling to

> > > stop the regain - I'm up 5 pounds this month,

> for the first time. It would

> > > be a great help if you could share what you've

> been through.

> > >

> > > Helene

> > > RNY 12/22/99

> > > 350 then/158 now

> > >

> > > bujwater@... wrote:

> > >

> > > > Hello to all! I'm new to the group and I

> wanted to introduce

> > > > myself. I had surgery in July, 1999 at Pitt

> Memorial Hospital

> > > > in Greenville, NC. (Dr. Cunningham) My

> pre-op weight was

> > > > 261 and I am 5'2 " tall. I reached a low

> weight of 127 in August

> > > > of 2000 and now I am at 146. Needless to say,

> I am not happy

> > > > with the weight gain. I am interested in the

> discussion on iron

> > > > levels. I just caught some of the discussion

> about the differnces

> > > > in iron supplements. I am extremely anemic

> now and my regular

> > > > doctor has prescribed 325 mg of ferrous

> sulfate 3 times a day to try

> > > > to get my levels up. He said my iron was a 9.

> Could anyone be so

> > > > kind as to enlighten me on the iron issues.

> Also, I am very

> > > > interested in the protein issues. My doc has

> never said anything

> > > > about the importance of getting in the

> protein.

> > > >

> > > > My regular doctor (an internist) doesn't know

> a thing about gastric

> > > > bybass and therefore hasn't been much help to

> me. Dr. Cunningham

> > > > doesn't seem too interested either, unless the

> question relates

> > > > directly to the actual surgery. (incision,

> etc) I have really

> > > > enjoyed reading all the posts from everyone.

> We all need the support

> > > > we can get from one another. I'm so glad I

> found this forum!!

> > > > Thanks again for listening!!

> > > > Judy in NC

> > > >

> > > > Homepage:

> http://groups.yahoo.com/group/Graduate-OSSG

> > > >

> > > > Unsubscribe:

> mailto:Graduate-OSSG-unsubscribe

> > > >

> > > >

> > > >

> > > >

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  • 5 months later...
Guest guest

,

If your kids want to talk to other kids and adults with RSS there is

a group especially for them called rss people. They could join the

same way you joined this group. I know of a 13 year old boy and a 12

year old girl (both with RSS) that are on this group. It would

probably be great for your kids!

Carmen, Mom to Paisley, age 9 (NON-RSS) and Storm, age 6 (RSS)

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Guest guest

,

I would hate to think that anyone on this list would judge you for

not using drugs on your children. You have made the decision that

you and your children felt were right for them. That is the most

important thing of all.

The most difficult part of this RSS thing for those of us with older

RSS children is making these decisions of whether or not to use gh,

or puberty-delaying drugs, or whatever. The decision that is made

is a very personal one and no one has the right to dispute that.

That being said, I'm glad you are back with us and hope that we can

all learn from each other. I'm the mom of a 13.5 year old son who

is just about 4'9 " now. Each and every fraction of an inch has been

a battle. We did go the medication route, but that was what was

right for us. And every day I pray that we made the right decision.

Jodi

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Guest guest

,

I would hate to think that anyone on this list would judge you for

not using drugs on your children. You have made the decision that

you and your children felt were right for them. That is the most

important thing of all.

The most difficult part of this RSS thing for those of us with older

RSS children is making these decisions of whether or not to use gh,

or puberty-delaying drugs, or whatever. The decision that is made

is a very personal one and no one has the right to dispute that.

That being said, I'm glad you are back with us and hope that we can

all learn from each other. I'm the mom of a 13.5 year old son who

is just about 4'9 " now. Each and every fraction of an inch has been

a battle. We did go the medication route, but that was what was

right for us. And every day I pray that we made the right decision.

Jodi

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