my daughter is 1 and has Cf please tell me some of your experiances

A

age

Guest
I thank each and every one of you for responding it helps alot for all of you to do this for us. I see alot of people have looked at this topic so im sure it is helping others to so again I thank all of you and if anyone elese wants to add to this topic that would be great I thank you in advance. This whole week has been hard because the baby has been sick so it is like a reality check and time to face this for real which makes it very hard on me. She does not care that she is sick she is happy as can be. She has just learned to walk so she is into everything. I love little ones they are sooo cute and they have no fear I wish we could keep it that way forever.
Thanks everyone for your support and advise it is much appreciated & needed.
 
A

age

Guest
I thank each and every one of you for responding it helps alot for all of you to do this for us. I see alot of people have looked at this topic so im sure it is helping others to so again I thank all of you and if anyone elese wants to add to this topic that would be great I thank you in advance. This whole week has been hard because the baby has been sick so it is like a reality check and time to face this for real which makes it very hard on me. She does not care that she is sick she is happy as can be. She has just learned to walk so she is into everything. I love little ones they are sooo cute and they have no fear I wish we could keep it that way forever.
Thanks everyone for your support and advise it is much appreciated & needed.
 
A

age

Guest
I thank each and every one of you for responding it helps alot for all of you to do this for us. I see alot of people have looked at this topic so im sure it is helping others to so again I thank all of you and if anyone elese wants to add to this topic that would be great I thank you in advance. This whole week has been hard because the baby has been sick so it is like a reality check and time to face this for real which makes it very hard on me. She does not care that she is sick she is happy as can be. She has just learned to walk so she is into everything. I love little ones they are sooo cute and they have no fear I wish we could keep it that way forever.
Thanks everyone for your support and advise it is much appreciated & needed.
 
A

age

Guest
I thank each and every one of you for responding it helps alot for all of you to do this for us. I see alot of people have looked at this topic so im sure it is helping others to so again I thank all of you and if anyone elese wants to add to this topic that would be great I thank you in advance. This whole week has been hard because the baby has been sick so it is like a reality check and time to face this for real which makes it very hard on me. She does not care that she is sick she is happy as can be. She has just learned to walk so she is into everything. I love little ones they are sooo cute and they have no fear I wish we could keep it that way forever.
Thanks everyone for your support and advise it is much appreciated & needed.
 
A

age

Guest
I thank each and every one of you for responding it helps alot for all of you to do this for us. I see alot of people have looked at this topic so im sure it is helping others to so again I thank all of you and if anyone elese wants to add to this topic that would be great I thank you in advance. This whole week has been hard because the baby has been sick so it is like a reality check and time to face this for real which makes it very hard on me. She does not care that she is sick she is happy as can be. She has just learned to walk so she is into everything. I love little ones they are sooo cute and they have no fear I wish we could keep it that way forever.
Thanks everyone for your support and advise it is much appreciated & needed.
 
S

sweetwhite30

New member
Hi,

My son is 5 years old.he had a rough start through being dxed and then on after not to bad.They used zithromax on him when he was 4 months old as a preventative measure for his lung health in the future,i would say it no doubt helped him out in the long run.He was vacinated throughly,with every vaccine imaginable.He has been in the hospital i would say 3 times in 20 months.One for a tune up 15 months ago one for cf acting up and once for poor sat oxygenation... One short 7 day stay i would say 10 months ago for broncholitis...He plays alot now outside and hangs from trees which helps no doubt.I have a trampoline for him ,new item for helping the junk come out.his lungs have a few old mucus plugs we are working on getting them out,been working on them for 6 months and they are slowly coming up. He has a little more inflamation this last time but antibiotics kicked the staph out and a round of orapred did the job nicely....He is healthy, you would never know he has C.F. if you met him...He is a bright vibrant full of love and smiles and full of life. He takes albuterol and 2 pulmicorts 2 times a day and pulmozyme 2 times a day,adek vitamin,chewable prevacid and his creon 20's with snacks and meals.

Cystic Fibrosis is all in how you look at it.
 
S

sweetwhite30

New member
Hi,

My son is 5 years old.he had a rough start through being dxed and then on after not to bad.They used zithromax on him when he was 4 months old as a preventative measure for his lung health in the future,i would say it no doubt helped him out in the long run.He was vacinated throughly,with every vaccine imaginable.He has been in the hospital i would say 3 times in 20 months.One for a tune up 15 months ago one for cf acting up and once for poor sat oxygenation... One short 7 day stay i would say 10 months ago for broncholitis...He plays alot now outside and hangs from trees which helps no doubt.I have a trampoline for him ,new item for helping the junk come out.his lungs have a few old mucus plugs we are working on getting them out,been working on them for 6 months and they are slowly coming up. He has a little more inflamation this last time but antibiotics kicked the staph out and a round of orapred did the job nicely....He is healthy, you would never know he has C.F. if you met him...He is a bright vibrant full of love and smiles and full of life. He takes albuterol and 2 pulmicorts 2 times a day and pulmozyme 2 times a day,adek vitamin,chewable prevacid and his creon 20's with snacks and meals.

Cystic Fibrosis is all in how you look at it.
 
S

sweetwhite30

New member
Hi,

My son is 5 years old.he had a rough start through being dxed and then on after not to bad.They used zithromax on him when he was 4 months old as a preventative measure for his lung health in the future,i would say it no doubt helped him out in the long run.He was vacinated throughly,with every vaccine imaginable.He has been in the hospital i would say 3 times in 20 months.One for a tune up 15 months ago one for cf acting up and once for poor sat oxygenation... One short 7 day stay i would say 10 months ago for broncholitis...He plays alot now outside and hangs from trees which helps no doubt.I have a trampoline for him ,new item for helping the junk come out.his lungs have a few old mucus plugs we are working on getting them out,been working on them for 6 months and they are slowly coming up. He has a little more inflamation this last time but antibiotics kicked the staph out and a round of orapred did the job nicely....He is healthy, you would never know he has C.F. if you met him...He is a bright vibrant full of love and smiles and full of life. He takes albuterol and 2 pulmicorts 2 times a day and pulmozyme 2 times a day,adek vitamin,chewable prevacid and his creon 20's with snacks and meals.

Cystic Fibrosis is all in how you look at it.
 
S

sweetwhite30

New member
Hi,

My son is 5 years old.he had a rough start through being dxed and then on after not to bad.They used zithromax on him when he was 4 months old as a preventative measure for his lung health in the future,i would say it no doubt helped him out in the long run.He was vacinated throughly,with every vaccine imaginable.He has been in the hospital i would say 3 times in 20 months.One for a tune up 15 months ago one for cf acting up and once for poor sat oxygenation... One short 7 day stay i would say 10 months ago for broncholitis...He plays alot now outside and hangs from trees which helps no doubt.I have a trampoline for him ,new item for helping the junk come out.his lungs have a few old mucus plugs we are working on getting them out,been working on them for 6 months and they are slowly coming up. He has a little more inflamation this last time but antibiotics kicked the staph out and a round of orapred did the job nicely....He is healthy, you would never know he has C.F. if you met him...He is a bright vibrant full of love and smiles and full of life. He takes albuterol and 2 pulmicorts 2 times a day and pulmozyme 2 times a day,adek vitamin,chewable prevacid and his creon 20's with snacks and meals.

Cystic Fibrosis is all in how you look at it.
 
S

sweetwhite30

New member
Hi,

My son is 5 years old.he had a rough start through being dxed and then on after not to bad.They used zithromax on him when he was 4 months old as a preventative measure for his lung health in the future,i would say it no doubt helped him out in the long run.He was vacinated throughly,with every vaccine imaginable.He has been in the hospital i would say 3 times in 20 months.One for a tune up 15 months ago one for cf acting up and once for poor sat oxygenation... One short 7 day stay i would say 10 months ago for broncholitis...He plays alot now outside and hangs from trees which helps no doubt.I have a trampoline for him ,new item for helping the junk come out.his lungs have a few old mucus plugs we are working on getting them out,been working on them for 6 months and they are slowly coming up. He has a little more inflamation this last time but antibiotics kicked the staph out and a round of orapred did the job nicely....He is healthy, you would never know he has C.F. if you met him...He is a bright vibrant full of love and smiles and full of life. He takes albuterol and 2 pulmicorts 2 times a day and pulmozyme 2 times a day,adek vitamin,chewable prevacid and his creon 20's with snacks and meals.

Cystic Fibrosis is all in how you look at it.
 
C

cfangel03

Guest
my daughter is 4 1/2. I was diagnosed by amneo, so when she was born, we were ready with all the meds.
she , thank god!, has never been sick, not a common cold, not an ear infection, nothing.
Early intervention is very important, and I believe a lot has to do with
TOBI, PULMOZYME, these are drugs that came out of the pipeline not long ago, keeping the CF community healthy, and alive to see many many years ahead
leah orr
author of cf childrens books kyle's first crush, kyle's first playdate.
I travel quite a bit, and have met many many CFers and CF parents with small children. the drugs are getting better, the little kids are healthier, and the future looks bright.
The nobel peace prize for medicine was just awarded to a scientist working toward a cure for CF.
 
C

cfangel03

Guest
my daughter is 4 1/2. I was diagnosed by amneo, so when she was born, we were ready with all the meds.
she , thank god!, has never been sick, not a common cold, not an ear infection, nothing.
Early intervention is very important, and I believe a lot has to do with
TOBI, PULMOZYME, these are drugs that came out of the pipeline not long ago, keeping the CF community healthy, and alive to see many many years ahead
leah orr
author of cf childrens books kyle's first crush, kyle's first playdate.
I travel quite a bit, and have met many many CFers and CF parents with small children. the drugs are getting better, the little kids are healthier, and the future looks bright.
The nobel peace prize for medicine was just awarded to a scientist working toward a cure for CF.
 
C

cfangel03

Guest
my daughter is 4 1/2. I was diagnosed by amneo, so when she was born, we were ready with all the meds.
she , thank god!, has never been sick, not a common cold, not an ear infection, nothing.
Early intervention is very important, and I believe a lot has to do with
TOBI, PULMOZYME, these are drugs that came out of the pipeline not long ago, keeping the CF community healthy, and alive to see many many years ahead
leah orr
author of cf childrens books kyle's first crush, kyle's first playdate.
I travel quite a bit, and have met many many CFers and CF parents with small children. the drugs are getting better, the little kids are healthier, and the future looks bright.
The nobel peace prize for medicine was just awarded to a scientist working toward a cure for CF.
 
C

cfangel03

Guest
my daughter is 4 1/2. I was diagnosed by amneo, so when she was born, we were ready with all the meds.
she , thank god!, has never been sick, not a common cold, not an ear infection, nothing.
Early intervention is very important, and I believe a lot has to do with
TOBI, PULMOZYME, these are drugs that came out of the pipeline not long ago, keeping the CF community healthy, and alive to see many many years ahead
leah orr
author of cf childrens books kyle's first crush, kyle's first playdate.
I travel quite a bit, and have met many many CFers and CF parents with small children. the drugs are getting better, the little kids are healthier, and the future looks bright.
The nobel peace prize for medicine was just awarded to a scientist working toward a cure for CF.
 
C

cfangel03

Guest
my daughter is 4 1/2. I was diagnosed by amneo, so when she was born, we were ready with all the meds.
she , thank god!, has never been sick, not a common cold, not an ear infection, nothing.
Early intervention is very important, and I believe a lot has to do with
TOBI, PULMOZYME, these are drugs that came out of the pipeline not long ago, keeping the CF community healthy, and alive to see many many years ahead
leah orr
author of cf childrens books kyle's first crush, kyle's first playdate.
I travel quite a bit, and have met many many CFers and CF parents with small children. the drugs are getting better, the little kids are healthier, and the future looks bright.
The nobel peace prize for medicine was just awarded to a scientist working toward a cure for CF.
 
R

RUSSELLCREW

New member
Hi and welcome,

My youngest daughter was dx at 2 weeks old becuz she had 14 inches of meconium removed from her small bowel at 5 days old. She is now 15 months and weight 23 lbs. She take enzymes, pulmozyme, pulmocort, xopenex, ADEK, vitamin K, prevacid and probiotics. She had a really rough first year as when she got out of the hospital after her surgery, she went in 3 days later with sepsis. Now she is chasing her three older sisters and is big enuf to be fitted for a vest.
All along the way, our family has been the biggest supporter of her recovery. I beleive that it is because of constant vigilance of administering medications on time and breastfeeding that has helped her grow and thrive like a "normal" toddler.

PM me if you have any questions, concerns or just wanna vent<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

RUSSELLCREW

New member
Hi and welcome,

My youngest daughter was dx at 2 weeks old becuz she had 14 inches of meconium removed from her small bowel at 5 days old. She is now 15 months and weight 23 lbs. She take enzymes, pulmozyme, pulmocort, xopenex, ADEK, vitamin K, prevacid and probiotics. She had a really rough first year as when she got out of the hospital after her surgery, she went in 3 days later with sepsis. Now she is chasing her three older sisters and is big enuf to be fitted for a vest.
All along the way, our family has been the biggest supporter of her recovery. I beleive that it is because of constant vigilance of administering medications on time and breastfeeding that has helped her grow and thrive like a "normal" toddler.

PM me if you have any questions, concerns or just wanna vent<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

RUSSELLCREW

New member
Hi and welcome,

My youngest daughter was dx at 2 weeks old becuz she had 14 inches of meconium removed from her small bowel at 5 days old. She is now 15 months and weight 23 lbs. She take enzymes, pulmozyme, pulmocort, xopenex, ADEK, vitamin K, prevacid and probiotics. She had a really rough first year as when she got out of the hospital after her surgery, she went in 3 days later with sepsis. Now she is chasing her three older sisters and is big enuf to be fitted for a vest.
All along the way, our family has been the biggest supporter of her recovery. I beleive that it is because of constant vigilance of administering medications on time and breastfeeding that has helped her grow and thrive like a "normal" toddler.

PM me if you have any questions, concerns or just wanna vent<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

RUSSELLCREW

New member
Hi and welcome,

My youngest daughter was dx at 2 weeks old becuz she had 14 inches of meconium removed from her small bowel at 5 days old. She is now 15 months and weight 23 lbs. She take enzymes, pulmozyme, pulmocort, xopenex, ADEK, vitamin K, prevacid and probiotics. She had a really rough first year as when she got out of the hospital after her surgery, she went in 3 days later with sepsis. Now she is chasing her three older sisters and is big enuf to be fitted for a vest.
All along the way, our family has been the biggest supporter of her recovery. I beleive that it is because of constant vigilance of administering medications on time and breastfeeding that has helped her grow and thrive like a "normal" toddler.

PM me if you have any questions, concerns or just wanna vent<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

RUSSELLCREW

New member
Hi and welcome,

My youngest daughter was dx at 2 weeks old becuz she had 14 inches of meconium removed from her small bowel at 5 days old. She is now 15 months and weight 23 lbs. She take enzymes, pulmozyme, pulmocort, xopenex, ADEK, vitamin K, prevacid and probiotics. She had a really rough first year as when she got out of the hospital after her surgery, she went in 3 days later with sepsis. Now she is chasing her three older sisters and is big enuf to be fitted for a vest.
All along the way, our family has been the biggest supporter of her recovery. I beleive that it is because of constant vigilance of administering medications on time and breastfeeding that has helped her grow and thrive like a "normal" toddler.

PM me if you have any questions, concerns or just wanna vent<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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