daughter with newly diagnosed CF

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debs2girls

New member
Hi Misty, I was just wandering what part of Oklahoma you are from originally? I live near Tulsa. There is someone else on here from Oklahoma too.
It seems like the c/f road is traveled by many....with different turns for everyone...
I think I have worked it up in my head that we all have c/f...every sneeze, cough, fever...etc...I think, Oh no..he/she/I have it too....but the funny thing is....my daughter with c/f is adopted, so no need to test everyone else...
We still dont know for sure if Cheyenne has c/f, but she is being treated as probable c/f...the dr said we will never be able to rule it out...(then why not just say she has it?)
She has one mutation, two possitve sweat tests, two borderline and one negative..she has 7 of the 8 phenotypes the doctor asked about, ie....gi trouble, pneumonia's (17 x's), sinus trouble, finger clubbing, fft...etc...
Anyway Misty, you have come to the right place for support..no need to look further..lol....but it would be nice to be able to see someone eye to eye while you chat with them about this horrible disease that has invaded all of our homes.

Welcome to the group...
 
D

debs2girls

New member
Hi Misty, I was just wandering what part of Oklahoma you are from originally? I live near Tulsa. There is someone else on here from Oklahoma too.
It seems like the c/f road is traveled by many....with different turns for everyone...
I think I have worked it up in my head that we all have c/f...every sneeze, cough, fever...etc...I think, Oh no..he/she/I have it too....but the funny thing is....my daughter with c/f is adopted, so no need to test everyone else...
We still dont know for sure if Cheyenne has c/f, but she is being treated as probable c/f...the dr said we will never be able to rule it out...(then why not just say she has it?)
She has one mutation, two possitve sweat tests, two borderline and one negative..she has 7 of the 8 phenotypes the doctor asked about, ie....gi trouble, pneumonia's (17 x's), sinus trouble, finger clubbing, fft...etc...
Anyway Misty, you have come to the right place for support..no need to look further..lol....but it would be nice to be able to see someone eye to eye while you chat with them about this horrible disease that has invaded all of our homes.

Welcome to the group...
 
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elliesmom

New member
Hi Misty-when my dd was younger we would put butter in everything she ate-even her baby ceral. Pudding is a great snack. My daughter hates fast food-good for me, bad for her-now that she is older she has a scandishake at least once a day-they are made by scandipharm just for cf paitients. your dr. should have informtion on it. we get it free because we use Ultrase Enzymes. we also mix in benecal that is liquid 300 cals to add to milk or anything else that she would drink. we get this from Walgreens.com. We order by the case. also we mix carnation breakfast shakes, a benecal and 1/2 and 1/2 with whole milk for a 600 calorie dinner drink, yum yum!!! Ice cream before bed is good, really anytime you can throw butter on anything-go for it. I really do not cook different meals for her than for the me and my dh-she is our only child. she just gets to eat more, and i eat more salad. we have had some weight issues, the doctor ususally gives her a goal for the next appt. and there is always the feeding tube looming out there. hope that helps. I work part time-my choice, but for years I worked full time, no problems with school or daycare. I would always meet with the nurse before school would start and explain everything. My dd as a youngster loved going to the nurse for her pills so she could stop in and say hi to the principle and the asst. principle and the secretaries-now that she is in middle school it is not so much fun, but she understands she has to take them. cf should not define your daughter or your family-you have to be cautious, do what the dr. orders, but you also have to live your life and let your child live their life to thier fullest potential. My dd just realized yesterday that CF is what will kill her, but many years down the road. Therapies can be a pain in the butt-but, they are part of your life now, just like making the bed and doing the laundry-they have to get done, do them and move on-well that is how we operate. hope it helps.
 
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elliesmom

New member
Hi Misty-when my dd was younger we would put butter in everything she ate-even her baby ceral. Pudding is a great snack. My daughter hates fast food-good for me, bad for her-now that she is older she has a scandishake at least once a day-they are made by scandipharm just for cf paitients. your dr. should have informtion on it. we get it free because we use Ultrase Enzymes. we also mix in benecal that is liquid 300 cals to add to milk or anything else that she would drink. we get this from Walgreens.com. We order by the case. also we mix carnation breakfast shakes, a benecal and 1/2 and 1/2 with whole milk for a 600 calorie dinner drink, yum yum!!! Ice cream before bed is good, really anytime you can throw butter on anything-go for it. I really do not cook different meals for her than for the me and my dh-she is our only child. she just gets to eat more, and i eat more salad. we have had some weight issues, the doctor ususally gives her a goal for the next appt. and there is always the feeding tube looming out there. hope that helps. I work part time-my choice, but for years I worked full time, no problems with school or daycare. I would always meet with the nurse before school would start and explain everything. My dd as a youngster loved going to the nurse for her pills so she could stop in and say hi to the principle and the asst. principle and the secretaries-now that she is in middle school it is not so much fun, but she understands she has to take them. cf should not define your daughter or your family-you have to be cautious, do what the dr. orders, but you also have to live your life and let your child live their life to thier fullest potential. My dd just realized yesterday that CF is what will kill her, but many years down the road. Therapies can be a pain in the butt-but, they are part of your life now, just like making the bed and doing the laundry-they have to get done, do them and move on-well that is how we operate. hope it helps.
 
E

elliesmom

New member
Hi Misty-when my dd was younger we would put butter in everything she ate-even her baby ceral. Pudding is a great snack. My daughter hates fast food-good for me, bad for her-now that she is older she has a scandishake at least once a day-they are made by scandipharm just for cf paitients. your dr. should have informtion on it. we get it free because we use Ultrase Enzymes. we also mix in benecal that is liquid 300 cals to add to milk or anything else that she would drink. we get this from Walgreens.com. We order by the case. also we mix carnation breakfast shakes, a benecal and 1/2 and 1/2 with whole milk for a 600 calorie dinner drink, yum yum!!! Ice cream before bed is good, really anytime you can throw butter on anything-go for it. I really do not cook different meals for her than for the me and my dh-she is our only child. she just gets to eat more, and i eat more salad. we have had some weight issues, the doctor ususally gives her a goal for the next appt. and there is always the feeding tube looming out there. hope that helps. I work part time-my choice, but for years I worked full time, no problems with school or daycare. I would always meet with the nurse before school would start and explain everything. My dd as a youngster loved going to the nurse for her pills so she could stop in and say hi to the principle and the asst. principle and the secretaries-now that she is in middle school it is not so much fun, but she understands she has to take them. cf should not define your daughter or your family-you have to be cautious, do what the dr. orders, but you also have to live your life and let your child live their life to thier fullest potential. My dd just realized yesterday that CF is what will kill her, but many years down the road. Therapies can be a pain in the butt-but, they are part of your life now, just like making the bed and doing the laundry-they have to get done, do them and move on-well that is how we operate. hope it helps.
 
I

izemmom

New member
Are we in a time warp here, or what?

This thread was started in Feb 2006. The post before elliesmom's was 2/22/06. Ellie's mom responded on 2/22/07. There have been other old threads ressurected lately, too. I don't mind, but I keep getting this weird deja vu vibe..."I feel like I've read this..." and then I notice the dates.

What gives? Anybody?
 
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izemmom

New member
Are we in a time warp here, or what?

This thread was started in Feb 2006. The post before elliesmom's was 2/22/06. Ellie's mom responded on 2/22/07. There have been other old threads ressurected lately, too. I don't mind, but I keep getting this weird deja vu vibe..."I feel like I've read this..." and then I notice the dates.

What gives? Anybody?
 
I

izemmom

New member
Are we in a time warp here, or what?

This thread was started in Feb 2006. The post before elliesmom's was 2/22/06. Ellie's mom responded on 2/22/07. There have been other old threads ressurected lately, too. I don't mind, but I keep getting this weird deja vu vibe..."I feel like I've read this..." and then I notice the dates.

What gives? Anybody?
 
I

izemmom

New member
Oh, goodness! I didn't mean to say there was anything wrong with bringing back old threads...really, I don't mind...and, there are other threads that have the same thing happening...

How are you finding the old ones? I only ever see the current threads that are listed on the main forum page. Are you working from a more complete list that goes back a year? I often are mooking for old threads and can't seem to find them, so if I"m missing a feature, please let me know!
 
I

izemmom

New member
Oh, goodness! I didn't mean to say there was anything wrong with bringing back old threads...really, I don't mind...and, there are other threads that have the same thing happening...

How are you finding the old ones? I only ever see the current threads that are listed on the main forum page. Are you working from a more complete list that goes back a year? I often are mooking for old threads and can't seem to find them, so if I"m missing a feature, please let me know!
 
I

izemmom

New member
Oh, goodness! I didn't mean to say there was anything wrong with bringing back old threads...really, I don't mind...and, there are other threads that have the same thing happening...

How are you finding the old ones? I only ever see the current threads that are listed on the main forum page. Are you working from a more complete list that goes back a year? I often are mooking for old threads and can't seem to find them, so if I"m missing a feature, please let me know!
 
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sandygirl

New member
Hi ...I live a bit further away in sunny Scotland (not!) My 10 yr old son has cf. I am inspired by your stories and your humour. When my son was diagnosed a week after his 1st birthday I called a cf help line because I was devastated. They gave me the best advice ever. You are normal, he is normal.....be normal. Take life as it comes. My partner and I both work full time. We work nebulisers, physio around our lives and don't let it control us. We do IV's at home and work to keep our boy well. Good luck to you and yours.
 
S

sandygirl

New member
Hi ...I live a bit further away in sunny Scotland (not!) My 10 yr old son has cf. I am inspired by your stories and your humour. When my son was diagnosed a week after his 1st birthday I called a cf help line because I was devastated. They gave me the best advice ever. You are normal, he is normal.....be normal. Take life as it comes. My partner and I both work full time. We work nebulisers, physio around our lives and don't let it control us. We do IV's at home and work to keep our boy well. Good luck to you and yours.
 
S

sandygirl

New member
Hi ...I live a bit further away in sunny Scotland (not!) My 10 yr old son has cf. I am inspired by your stories and your humour. When my son was diagnosed a week after his 1st birthday I called a cf help line because I was devastated. They gave me the best advice ever. You are normal, he is normal.....be normal. Take life as it comes. My partner and I both work full time. We work nebulisers, physio around our lives and don't let it control us. We do IV's at home and work to keep our boy well. Good luck to you and yours.
 
T

thefrogprincess

New member
I don't know if they still make it but my mom used to get this stuff called Polycose. It was an odorless, tasteless powder that disolved instantly in liquids or semi-solid food. Its nothing but calories. She put it in everything, baby food, apple sauce, jello, juice, mashed potatos, chocolate milk, you name it. I know a lot of people also use products like Boost or Ensure shakes to add calories too (although I can't stand the taste of those things...yuck!).
 
T

thefrogprincess

New member
I don't know if they still make it but my mom used to get this stuff called Polycose. It was an odorless, tasteless powder that disolved instantly in liquids or semi-solid food. Its nothing but calories. She put it in everything, baby food, apple sauce, jello, juice, mashed potatos, chocolate milk, you name it. I know a lot of people also use products like Boost or Ensure shakes to add calories too (although I can't stand the taste of those things...yuck!).
 
T

thefrogprincess

New member
I don't know if they still make it but my mom used to get this stuff called Polycose. It was an odorless, tasteless powder that disolved instantly in liquids or semi-solid food. Its nothing but calories. She put it in everything, baby food, apple sauce, jello, juice, mashed potatos, chocolate milk, you name it. I know a lot of people also use products like Boost or Ensure shakes to add calories too (although I can't stand the taste of those things...yuck!).
 
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