Hi, I'm New here

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xstefani3x

New member
Hello everyone. I'm not exactly new, i read on the site all the time, i have just never posted. I have a daughter who has CF. She is almost 2 and a half and was diagnosed at birth because of a miconeum iliues. I thought i would start getting to know people because i don't know anyone else who can relate to the disease and talk about it with me except for her doctors, and they don't always help that much. I am jsut interested in the difference's in the sickness and the different therapy's there are. I am getting her switched to the Philly Center from where she is at now. She has been using the Vest since she was about 21 months old. It was not easy, but now she does great with it. She also takes Pulmozyne, Zopenex puffer, and flovent puffer, and every 3 months she cycles with Tobi. She also takes Pancreacarb.
I was wondering if anyone had any ideas about how to get EXTREMELY picky eaters to eat!! She hates everything (she never used to, i guess it is the age). I am worried about her nutrition. I have started making her drink Pediasure and Carnation Instant Breakfast.
Also.. when she gets a bad cold it seems like instead of spitting up the mucus she pukes it up.. and it is alot.
Thanks for listening, and thanks everyone for being a part of this site!
Stefani
 
X

xstefani3x

New member
Hello everyone. I'm not exactly new, i read on the site all the time, i have just never posted. I have a daughter who has CF. She is almost 2 and a half and was diagnosed at birth because of a miconeum iliues. I thought i would start getting to know people because i don't know anyone else who can relate to the disease and talk about it with me except for her doctors, and they don't always help that much. I am jsut interested in the difference's in the sickness and the different therapy's there are. I am getting her switched to the Philly Center from where she is at now. She has been using the Vest since she was about 21 months old. It was not easy, but now she does great with it. She also takes Pulmozyne, Zopenex puffer, and flovent puffer, and every 3 months she cycles with Tobi. She also takes Pancreacarb.
I was wondering if anyone had any ideas about how to get EXTREMELY picky eaters to eat!! She hates everything (she never used to, i guess it is the age). I am worried about her nutrition. I have started making her drink Pediasure and Carnation Instant Breakfast.
Also.. when she gets a bad cold it seems like instead of spitting up the mucus she pukes it up.. and it is alot.
Thanks for listening, and thanks everyone for being a part of this site!
Stefani
 
X

xstefani3x

New member
Hello everyone. I'm not exactly new, i read on the site all the time, i have just never posted. I have a daughter who has CF. She is almost 2 and a half and was diagnosed at birth because of a miconeum iliues. I thought i would start getting to know people because i don't know anyone else who can relate to the disease and talk about it with me except for her doctors, and they don't always help that much. I am jsut interested in the difference's in the sickness and the different therapy's there are. I am getting her switched to the Philly Center from where she is at now. She has been using the Vest since she was about 21 months old. It was not easy, but now she does great with it. She also takes Pulmozyne, Zopenex puffer, and flovent puffer, and every 3 months she cycles with Tobi. She also takes Pancreacarb.
I was wondering if anyone had any ideas about how to get EXTREMELY picky eaters to eat!! She hates everything (she never used to, i guess it is the age). I am worried about her nutrition. I have started making her drink Pediasure and Carnation Instant Breakfast.
Also.. when she gets a bad cold it seems like instead of spitting up the mucus she pukes it up.. and it is alot.
Thanks for listening, and thanks everyone for being a part of this site!
Stefani
 
D

DEES4

New member
Hi Stefani! Glad you decided to post. It took my along time to finally post....now I am glad I did. I have really got some useful advice from people on here and have actually met some "internet friends" as well. My son is also 2 years old (he will be 3 on Dec. 16) and he was also diagnosed because of meconium ileus. I don't really have any great advice as far as your questions are concerned but I wanted to say "Welcome"!!!
Carrie
Mom to Daniel (15 no cf), Emily (10 no cf), Ethan (8 no cf), and Sawyer (2 cf)
 
D

DEES4

New member
Hi Stefani! Glad you decided to post. It took my along time to finally post....now I am glad I did. I have really got some useful advice from people on here and have actually met some "internet friends" as well. My son is also 2 years old (he will be 3 on Dec. 16) and he was also diagnosed because of meconium ileus. I don't really have any great advice as far as your questions are concerned but I wanted to say "Welcome"!!!
Carrie
Mom to Daniel (15 no cf), Emily (10 no cf), Ethan (8 no cf), and Sawyer (2 cf)
 
D

DEES4

New member
Hi Stefani! Glad you decided to post. It took my along time to finally post....now I am glad I did. I have really got some useful advice from people on here and have actually met some "internet friends" as well. My son is also 2 years old (he will be 3 on Dec. 16) and he was also diagnosed because of meconium ileus. I don't really have any great advice as far as your questions are concerned but I wanted to say "Welcome"!!!
Carrie
Mom to Daniel (15 no cf), Emily (10 no cf), Ethan (8 no cf), and Sawyer (2 cf)
 
K

ktsmom

New member
Hi Stefani-

Before our daughter was diagnosed I remember several episodes of sinus infections where she was throwing up tons of snot. I couldn't believe how much there was! Yuk.....

As for the picky eating, it comes and goes. We try not to make a big deal out of it most of the time. I figure she has enough to deal with - meds, treatments, etc. We just had to let go of some things for now, for our own sanity as parents, and luckily for us she is growing and gaining weight. Right now I'm the proud mother of a pretzel, baloney, and fried-egg eating 3 year old! Oh, and Cheetos. I'm proud, I tell you! The hard part is that my 6 year old wants equal time with the bad eating habits......
 
K

ktsmom

New member
Hi Stefani-

Before our daughter was diagnosed I remember several episodes of sinus infections where she was throwing up tons of snot. I couldn't believe how much there was! Yuk.....

As for the picky eating, it comes and goes. We try not to make a big deal out of it most of the time. I figure she has enough to deal with - meds, treatments, etc. We just had to let go of some things for now, for our own sanity as parents, and luckily for us she is growing and gaining weight. Right now I'm the proud mother of a pretzel, baloney, and fried-egg eating 3 year old! Oh, and Cheetos. I'm proud, I tell you! The hard part is that my 6 year old wants equal time with the bad eating habits......
 
K

ktsmom

New member
Hi Stefani-

Before our daughter was diagnosed I remember several episodes of sinus infections where she was throwing up tons of snot. I couldn't believe how much there was! Yuk.....

As for the picky eating, it comes and goes. We try not to make a big deal out of it most of the time. I figure she has enough to deal with - meds, treatments, etc. We just had to let go of some things for now, for our own sanity as parents, and luckily for us she is growing and gaining weight. Right now I'm the proud mother of a pretzel, baloney, and fried-egg eating 3 year old! Oh, and Cheetos. I'm proud, I tell you! The hard part is that my 6 year old wants equal time with the bad eating habits......
 
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sweetwhite30

New member
yes i can relate to that i have a 4 yr old with c.f, he was diagnosd with failure to thrive and gravely dehydrated and i brought him to the doctors every day and still they did nothing until he was about to die when i mentioned i have a lawyer and gave them his name then they decided to hospitalize him and at 4 weeks he was dxed with c.f and he has eatting issues their are days he does great like today and then there are alot of iffy days but he is healthy and i gave up the other day on worring to much on what he eats as long as he eats something. he has pediasure and carnation instant breakfast drinks as well. you could sneak vegetables in your spaghetti sauce , i do and i add a teaspoon of sugar to cut the acid down as well for him and a squirt of ketchup to even it all out , kids eat it all up every time....
 
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sweetwhite30

New member
yes i can relate to that i have a 4 yr old with c.f, he was diagnosd with failure to thrive and gravely dehydrated and i brought him to the doctors every day and still they did nothing until he was about to die when i mentioned i have a lawyer and gave them his name then they decided to hospitalize him and at 4 weeks he was dxed with c.f and he has eatting issues their are days he does great like today and then there are alot of iffy days but he is healthy and i gave up the other day on worring to much on what he eats as long as he eats something. he has pediasure and carnation instant breakfast drinks as well. you could sneak vegetables in your spaghetti sauce , i do and i add a teaspoon of sugar to cut the acid down as well for him and a squirt of ketchup to even it all out , kids eat it all up every time....
 
S

sweetwhite30

New member
yes i can relate to that i have a 4 yr old with c.f, he was diagnosd with failure to thrive and gravely dehydrated and i brought him to the doctors every day and still they did nothing until he was about to die when i mentioned i have a lawyer and gave them his name then they decided to hospitalize him and at 4 weeks he was dxed with c.f and he has eatting issues their are days he does great like today and then there are alot of iffy days but he is healthy and i gave up the other day on worring to much on what he eats as long as he eats something. he has pediasure and carnation instant breakfast drinks as well. you could sneak vegetables in your spaghetti sauce , i do and i add a teaspoon of sugar to cut the acid down as well for him and a squirt of ketchup to even it all out , kids eat it all up every time....
 
K

kayleesgrandma

New member
just wanted to welcome you Steph, my grandaughter eats like a horse, so can't give you advice. Just wanted to say welcome, hope to see you around! <img src="i/expressions/heart.gif" border="0">
 
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kayleesgrandma

New member
just wanted to welcome you Steph, my grandaughter eats like a horse, so can't give you advice. Just wanted to say welcome, hope to see you around! <img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
just wanted to welcome you Steph, my grandaughter eats like a horse, so can't give you advice. Just wanted to say welcome, hope to see you around! <img src="i/expressions/heart.gif" border="0">
 
A

anonymous

New member
Hi! Do you mean Philly as in Phila., PA? I live in the Reading, PA area and have a 2 1/2 year old daughter, Amelia, with CF. She also doesn't like much food. I'm always looking for other CF parents to correspond with. We go to Johns Hopkins in MD Center. I'll be anxious to hear if you're in Philly, PA area. I've never posted (actually, this is my first visit to this site). Thanks, Stephanie.

Cindy
 
A

anonymous

New member
Hi! Do you mean Philly as in Phila., PA? I live in the Reading, PA area and have a 2 1/2 year old daughter, Amelia, with CF. She also doesn't like much food. I'm always looking for other CF parents to correspond with. We go to Johns Hopkins in MD Center. I'll be anxious to hear if you're in Philly, PA area. I've never posted (actually, this is my first visit to this site). Thanks, Stephanie.

Cindy
 
A

anonymous

New member
Hi! Do you mean Philly as in Phila., PA? I live in the Reading, PA area and have a 2 1/2 year old daughter, Amelia, with CF. She also doesn't like much food. I'm always looking for other CF parents to correspond with. We go to Johns Hopkins in MD Center. I'll be anxious to hear if you're in Philly, PA area. I've never posted (actually, this is my first visit to this site). Thanks, Stephanie.

Cindy
 
Y

yas

New member
<img src="i/expressions/heart.gif" border="0">hey there!!!This is my first time to reply ever,
i live in nairobi kenya and have a daughter who is 6 years with cf, i have the same
experience with my daughter,heard about pediasure now so i have started giving her but she makes alot of fuss on that too.
also refuses to nebulize or thump on chest,becomes very hard for me as got two other kids.anyway hope its gets better for you.welcome to the club<img src="i/expressions/face-icon-small-cool.gif" border="0">
 
Y

yas

New member
<img src="i/expressions/heart.gif" border="0">hey there!!!This is my first time to reply ever,
i live in nairobi kenya and have a daughter who is 6 years with cf, i have the same
experience with my daughter,heard about pediasure now so i have started giving her but she makes alot of fuss on that too.
also refuses to nebulize or thump on chest,becomes very hard for me as got two other kids.anyway hope its gets better for you.welcome to the club<img src="i/expressions/face-icon-small-cool.gif" border="0">
 
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