Hello Everyone

[Guest guest]

Thank you for welcoming me! I did check out the magic foundation web site. We

really want to go to the convention, we're looking in to how much the airline

tickets would be. I didn't know there is hormone therapy and appetite stimulants

available, thats awsome! Cause i have a hard time trying to get him to eat, but

i never stop trying. It would be a good for to be able to see dr harbison,

that way im better informed on RSS and other meds that may help him with his

appetite and growth. Thanks again!

, 14 mos RSS 12lbs 24 in.

amv619 wrote:

Hello everyone! My name is and i am new to this support

group. Here's a quick run down of my story. I am 29 years old and i

have one son (ryan) who is 14 months old. I carried him full term

and he was born at 5lbs 8oz, 18 inches long. He didn't/doesn't have

any major health problems. His pediatrician at birth was worried

about his weight after he went in for his first few appointments and

did not gain weight. He ordered blood test to see how his kidneys

functioned. They were normal. We then moved to Tijuana, Mexico and

the first week we were there he had the flu ( was about 8 mos).

We took him to a well known Dr in Tijuana, and it was there were he

brought up the fact that he might have RSS. We wanted to make sure

so we then took him to a pediatrician in Southern California, to get

a second opinion, We had no idea what RSS was and wanted to know ALL

the details of the genetic syndrome. Our next stop was the

Geneticist, who confirmed did indeed have RSS. He didn't really

get too detailed on RSS (which i thought he could have been more

informative since we were first time parents, let alone with a son

who has RSS). So i decided to join this support group in hope to

compare notes with other parents who are/have been in the same

situation. now weighs 12lbs, and is 24 inches long.

Thank you so much for your time (as i will probably have more

questions to come ;o)...)

, mother of

---------------------------------

[Guest guest]

Hi,

My husband is from Chile but I've only been to el D.F. en Mexico and

Cancun...Anyway, I bought YO BABY or Stoneyfield Farm yogurt. I

still make a smoothie every day of Stoneyfield vanilla yogurt, a bit

of flavored yogurt smoothie bought from the store and half-half

cream. Does like avocado? We also fed Emerence a lot baby

pastina (really small star shaped pasta) cooked in vegetable broth.

She loved that and wasn't a big problem for her with texture.

, mom to 5 and Emernece 2

> >

> >

> > Hello everyone! My name is and i am new to this support

> > group. Here's a quick run down of my story. I am 29 years old and

i

> > have one son (ryan) who is 14 months old. I carried him full term

> > and he was born at 5lbs 8oz, 18 inches long. He didn't/doesn't

have

> > any major health problems. His pediatrician at birth was worried

> > about his weight after he went in for his first few appointments

> and

> > did not gain weight. He ordered blood test to see how his kidneys

> > functioned. They were normal. We then moved to Tijuana, Mexico

and

> > the first week we were there he had the flu ( was about 8

> mos).

> > We took him to a well known Dr in Tijuana, and it was there were

he

> > brought up the fact that he might have RSS. We wanted to make

sure

> > so we then took him to a pediatrician in Southern California, to

> get

> > a second opinion, We had no idea what RSS was and wanted to know

> ALL

> > the details of the genetic syndrome. Our next stop was the

> > Geneticist, who confirmed did indeed have RSS. He didn't

> really

> > get too detailed on RSS (which i thought he could have been more

> > informative since we were first time parents, let alone with a

son

> > who has RSS). So i decided to join this support group in hope to

> > compare notes with other parents who are/have been in the same

> > situation. now weighs 12lbs, and is 24 inches long.

> > Thank you so much for your time (as i will probably have more

> > questions to come ;o)...)

> > , mother of

>

>

>

>

>

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

>

[Guest guest]

Thanks again ....anyway hopefully I'll get to tour a little bit more of

Mexico this summer, the most southern i've gone is Puerto Vallarta, and it was

awesome! He didn't like the Yo Baby yogurt I bought him, but maybe I got him the

wrong flavor (I only tried the vanilla, thats all they had)..cause he loves the

strawberry yogurt/smoothies...He likes pasta cooked with tomato, onion and

vegetable broth (mexican fideo), I just have to puree it... I have to try the

avocado, maybe throw in a piece with his fideo....Thanks

mom to 14mos 12lbs

wrote:

Hi,

My husband is from Chile but I've only been to el D.F. en Mexico and

Cancun...Anyway, I bought YO BABY or Stoneyfield Farm yogurt. I

still make a smoothie every day of Stoneyfield vanilla yogurt, a bit

of flavored yogurt smoothie bought from the store and half-half

cream. Does like avocado? We also fed Emerence a lot baby

pastina (really small star shaped pasta) cooked in vegetable broth.

She loved that and wasn't a big problem for her with texture.

, mom to 5 and Emernece 2

> >

> >

> > Hello everyone! My name is and i am new to this support

> > group. Here's a quick run down of my story. I am 29 years old and

i

> > have one son (ryan) who is 14 months old. I carried him full term

> > and he was born at 5lbs 8oz, 18 inches long. He didn't/doesn't

have

> > any major health problems. His pediatrician at birth was worried

> > about his weight after he went in for his first few appointments

> and

> > did not gain weight. He ordered blood test to see how his kidneys

> > functioned. They were normal. We then moved to Tijuana, Mexico

and

> > the first week we were there he had the flu ( was about 8

> mos).

> > We took him to a well known Dr in Tijuana, and it was there were

he

> > brought up the fact that he might have RSS. We wanted to make

sure

> > so we then took him to a pediatrician in Southern California, to

> get

> > a second opinion, We had no idea what RSS was and wanted to know

> ALL

> > the details of the genetic syndrome. Our next stop was the

> > Geneticist, who confirmed did indeed have RSS. He didn't

> really

> > get too detailed on RSS (which i thought he could have been more

> > informative since we were first time parents, let alone with a

son

> > who has RSS). So i decided to join this support group in hope to

> > compare notes with other parents who are/have been in the same

> > situation. now weighs 12lbs, and is 24 inches long.

> > Thank you so much for your time (as i will probably have more

> > questions to come ;o)...)

> > , mother of

>

>

>

>

>

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

>

[Guest guest]

hi michelle!!

christopher loves the danon drinkable yogurts!!! also i make him a

high cal. milk shake-

1 cup whole milk

1 cup hig cal ice cream (hagendaz is 260-300cal a cup)

1 cup of reg ice cream

4 TBS half/half

4 TBS hershey's syrup (chocolate or strawberry ea 100 cal or dark

choco is 110cal)

1 drinkable yogurt (the little dannon ones in vanilla)

1 packet of either carnation instant breakfast or hot chocolate mix

(hot choco. doesnt leave an after taste)

it comes out to between 1200-1400calories depending on the ice cream

brand!! also i add half/half to all of his milk and with his milk

and cereal. i dont know if he eats noodles but i add a TBS of oil

to all his noodles and soups as well!!! plus lots and lots of

butter on anything else!!! hope this helps!!

jodie c.

[Guest guest]

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little

crappy and have had tons of appointments for tests, docs etc... I know you all

understand what that's like! My sarc is now cardiac too as well as neuro, lymph,

pulm and joint. The docs decided (after many CT scans and mri's) that the

cellcept/pred combo isn't working. They now have me starting

methotrexate/plaquenil/pred combo. I started today and notice some very weird

tingling in my face/head as well as strange muscle twitching. Anyone have any

input on this?

I hope you all are doing well- you remain in my prayers!

Dawn

[Guest guest]

Dawn, What's your Pred dosage, I think it would be that, not sure of jerking, but more like shaking, unable to sit still.  The Methotrexate/plaquenil I took for years and didn't have any problems with them.  But

Pred. can do many things. Marla

 

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/plaquenil/pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this?

I hope you all are doing well- you remain in my prayers!

Dawn

[Guest guest]

I am on all 3 of those meds. I have a shaking thing that goes on depending on how tired I am.

Good luck with this. I have used the trio for 3 years now.

Jackie

Re: Hello Everyone

Dawn, What's your Pred dosage, I think it would be that, not sure of jerking, but more like shaking, unable to sit still. The Methotrexate/plaquenil I took for years and didn't have any problems with them. But Pred. can do many things. Marla

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/plaquenil/pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this? I hope you all are doing well- you remain in my prayers!Dawn

[Guest guest]

Hi to all. We have returned from New Hampshire. Actually had a good time. Nice weather and we were able to relax. Couldn't do a lot of the walking stuff but we made out Ok. is on Prednisone. 6 mgs a day. we don't get shaking from that. She has tremors in her right hand as a result of the neurosarc damaging the brains ability to manufacture dopamine which keeps the muscles in check, We might have to lokk at a med replacement like setmet?? I have to begin looking up info. Our side effects of the prednisone have been bone related where the higher doses started to rob the clacium from her bones making them brittle. Actonel & Oscal have helped thatHope all are as OK as they can be.Matt

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/ plaquenil/ pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this? I hope you all are doing well- you remain in my prayers!Dawn

[Guest guest]

Matt, Glad you had a good time, I'm sorry she has to deal with so much, it's just not fun.  but you learn to work around things, she is lucky to have you checking on things for her.  I'd love to go to the East again, would like to try it in the fall

sometime.  Oh can't complain when I have the Co Rockies to look at.  Marla

 

Hi to all.  We have returned from New Hampshire.  Actually had a good time. Nice weather and we were able to relax.  Couldn't do a lot of the walking stuff but we made out Ok.  is on Prednisone.  6 mgs a day.  we don't get shaking from that. She has tremors in her right hand as a result of the neurosarc damaging the brains ability to manufacture dopamine which keeps the muscles in check,  We might have to lokk at a med replacement like setmet??  I have to begin looking up info. 

Our side effects of the prednisone have been bone related where the higher doses started to rob the clacium from her bones making them brittle.  Actonel & Oscal have helped thatHope all are as OK as they can be.

Matt

 

Hi everyone! Sorry I haven't been very active lately. I've been feeling a little crappy and have had tons of appointments for tests, docs etc... I know you all understand what that's like! My sarc is now cardiac too as well as neuro, lymph, pulm and joint. The docs decided (after many CT scans and mri's) that the cellcept/pred combo isn't working. They now have me starting methotrexate/ plaquenil/ pred combo. I started today and notice some very weird tingling in my face/head as well as strange muscle twitching. Anyone have any input on this? I hope you all are doing well- you remain in my prayers!Dawn

[Guest guest]

Hi and welcome!

I don't know if I have passed on from shock to acceptance. I think I just live in a state of shock, my new normal......just kidding!

I know this is an old cliche, but just take it day-by-day. My biggest learning curve is to slow down, do one thing at a time, make one decision at a time, and make one move at a time.

This group will help you learn to accept, because you will learn so much.

We understand and care about you! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Thu, November 19, 2009 4:55:02 AMSubject: hello everyone

Hi, My name is and I was disgnosed with uip. I have spent the last couple of days reading all your messages and the words of encouragement. Thank you. I am not sure how to do this message board so I hope that I am doing this right. Any insight on how you passed from shock to acceptance would be helpful

[Guest guest]

thanks !To: Breathe-Support Sent: Sun, November 22, 2009 4:52:26 PMSubject: Re: hello everyone

Hi and welcome!

I don't know if I have passed on from shock to acceptance. I think I just live in a state of shock, my new normal...... just kidding!

I know this is an old cliche, but just take it day-by-day. My biggest learning curve is to slow down, do one thing at a time, make one decision at a time, and make one move at a time.

This group will help you learn to accept, because you will learn so much.

We understand and care about you! C_53_Familial IPF_5/09Washington

From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 4:55:02 AMSubject: hello everyone

Hi, My name is and I was disgnosed with uip. I have spent the last couple of days reading all your messages and the words of encouragement. Thank you. I am not sure how to do this message board so I hope that I am doing this right. Any insight on how you passed from shock to acceptance would be helpful

[Guest guest]

glad to see you posting again

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: hello everyoneTo: Breathe-Support Date: Sunday, November 22, 2009, 4:52 PM

Hi and welcome!

I don't know if I have passed on from shock to acceptance. I think I just live in a state of shock, my new normal...... just kidding!

I know this is an old cliche, but just take it day-by-day. My biggest learning curve is to slow down, do one thing at a time, make one decision at a time, and make one move at a time.

This group will help you learn to accept, because you will learn so much.

We understand and care about you! C_53_Familial IPF_5/09Washington

From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 4:55:02 AMSubject: hello everyone

Hi, My name is and I was disgnosed with uip. I have spent the last couple of days reading all your messages and the words of encouragement. Thank you. I am not sure how to do this message board so I hope that I am doing this right. Any insight on how you passed from shock to acceptance would be helpful

[Guest guest]

Thanks! I was on sabbatical...went to self-pity island! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Sun, November 22, 2009 3:41:52 PMSubject: Re: hello everyone

glad to see you posting again

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: hello everyoneTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 22, 2009, 4:52 PM

Hi and welcome!

I don't know if I have passed on from shock to acceptance. I think I just live in a state of shock, my new normal...... just kidding!

I know this is an old cliche, but just take it day-by-day. My biggest learning curve is to slow down, do one thing at a time, make one decision at a time, and make one move at a time.

This group will help you learn to accept, because you will learn so much.

We understand and care about you! C_53_Familial IPF_5/09Washington

From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 19, 2009 4:55:02 AMSubject: hello everyone

Hi, My name is and I was disgnosed with uip. I have spent the last couple of days reading all your messages and the words of encouragement. Thank you. I am not sure how to do this message board so I hope that I am doing this right. Any insight on how you passed from shock to acceptance would be helpful