Not-so-great CF appt...

S

sdelorenzo

Guest
What about reflux? My daughter also has problems with her x-rays starting when she was young. Her GI dr asked about reflux when she was five. I replied it is not a problem for her. We did testing anyway and the GI dr said she had one of the worst reflux cases she had ever seen. My daughter then had the Nissan Fundoplication procedure to prevent reflux. The thought was her reflux at night was causing her to aspirate as she slept and therefore causing slow damage to her lungs...just an idea to check into. Also, what about flovent (an inhaled steroid through the spacer)? Both of my kids have been on pulmozyme since they were babies. Only have good things to say about it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 month no cf
 
S

sdelorenzo

Guest
What about reflux? My daughter also has problems with her x-rays starting when she was young. Her GI dr asked about reflux when she was five. I replied it is not a problem for her. We did testing anyway and the GI dr said she had one of the worst reflux cases she had ever seen. My daughter then had the Nissan Fundoplication procedure to prevent reflux. The thought was her reflux at night was causing her to aspirate as she slept and therefore causing slow damage to her lungs...just an idea to check into. Also, what about flovent (an inhaled steroid through the spacer)? Both of my kids have been on pulmozyme since they were babies. Only have good things to say about it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 month no cf
 
S

sdelorenzo

Guest
What about reflux? My daughter also has problems with her x-rays starting when she was young. Her GI dr asked about reflux when she was five. I replied it is not a problem for her. We did testing anyway and the GI dr said she had one of the worst reflux cases she had ever seen. My daughter then had the Nissan Fundoplication procedure to prevent reflux. The thought was her reflux at night was causing her to aspirate as she slept and therefore causing slow damage to her lungs...just an idea to check into. Also, what about flovent (an inhaled steroid through the spacer)? Both of my kids have been on pulmozyme since they were babies. Only have good things to say about it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 month no cf
 
S

sdelorenzo

Guest
What about reflux? My daughter also has problems with her x-rays starting when she was young. Her GI dr asked about reflux when she was five. I replied it is not a problem for her. We did testing anyway and the GI dr said she had one of the worst reflux cases she had ever seen. My daughter then had the Nissan Fundoplication procedure to prevent reflux. The thought was her reflux at night was causing her to aspirate as she slept and therefore causing slow damage to her lungs...just an idea to check into. Also, what about flovent (an inhaled steroid through the spacer)? Both of my kids have been on pulmozyme since they were babies. Only have good things to say about it.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 month no cf
 
S

sdelorenzo

Guest
What about reflux? My daughter also has problems with her x-rays starting when she was young. Her GI dr asked about reflux when she was five. I replied it is not a problem for her. We did testing anyway and the GI dr said she had one of the worst reflux cases she had ever seen. My daughter then had the Nissan Fundoplication procedure to prevent reflux. The thought was her reflux at night was causing her to aspirate as she slept and therefore causing slow damage to her lungs...just an idea to check into. Also, what about flovent (an inhaled steroid through the spacer)? Both of my kids have been on pulmozyme since they were babies. Only have good things to say about it.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 8 month no cf
 
A

ashmomo

New member
My daughter's x-rays show a 'pattern' in the lungs. She had a bronchoscopy while in the hospital and it showed lots of sticky mucous. She is 4 1/2 mos old. We had a follow-up x-ray done...not sure of what that showed yet, curious to know if things look better or worse or the same??? She is on Pulmozyme, Albuterol, Sodium Chloride, Hyper Sal 7%, and now Tobi for her lungs. I hope you can get the help you need and get your baby the meds she needs! We have a state program called Children's Special Healthcare Services which pays for all of their CF needs. I can't imagine being in your situation. Good luck!
 
A

ashmomo

New member
My daughter's x-rays show a 'pattern' in the lungs. She had a bronchoscopy while in the hospital and it showed lots of sticky mucous. She is 4 1/2 mos old. We had a follow-up x-ray done...not sure of what that showed yet, curious to know if things look better or worse or the same??? She is on Pulmozyme, Albuterol, Sodium Chloride, Hyper Sal 7%, and now Tobi for her lungs. I hope you can get the help you need and get your baby the meds she needs! We have a state program called Children's Special Healthcare Services which pays for all of their CF needs. I can't imagine being in your situation. Good luck!
 
A

ashmomo

New member
My daughter's x-rays show a 'pattern' in the lungs. She had a bronchoscopy while in the hospital and it showed lots of sticky mucous. She is 4 1/2 mos old. We had a follow-up x-ray done...not sure of what that showed yet, curious to know if things look better or worse or the same??? She is on Pulmozyme, Albuterol, Sodium Chloride, Hyper Sal 7%, and now Tobi for her lungs. I hope you can get the help you need and get your baby the meds she needs! We have a state program called Children's Special Healthcare Services which pays for all of their CF needs. I can't imagine being in your situation. Good luck!
 
A

ashmomo

New member
My daughter's x-rays show a 'pattern' in the lungs. She had a bronchoscopy while in the hospital and it showed lots of sticky mucous. She is 4 1/2 mos old. We had a follow-up x-ray done...not sure of what that showed yet, curious to know if things look better or worse or the same??? She is on Pulmozyme, Albuterol, Sodium Chloride, Hyper Sal 7%, and now Tobi for her lungs. I hope you can get the help you need and get your baby the meds she needs! We have a state program called Children's Special Healthcare Services which pays for all of their CF needs. I can't imagine being in your situation. Good luck!
 
A

ashmomo

New member
My daughter's x-rays show a 'pattern' in the lungs. She had a bronchoscopy while in the hospital and it showed lots of sticky mucous. She is 4 1/2 mos old. We had a follow-up x-ray done...not sure of what that showed yet, curious to know if things look better or worse or the same??? She is on Pulmozyme, Albuterol, Sodium Chloride, Hyper Sal 7%, and now Tobi for her lungs. I hope you can get the help you need and get your baby the meds she needs! We have a state program called Children's Special Healthcare Services which pays for all of their CF needs. I can't imagine being in your situation. Good luck!
 
Y

ymikhale

New member
my daughter had this a few months ago, she was also 15 months old at the time. They told me they were going to watch it closely, it could be a little congestion. I am glad you posted this, I will push them to do something about it.
 
Y

ymikhale

New member
my daughter had this a few months ago, she was also 15 months old at the time. They told me they were going to watch it closely, it could be a little congestion. I am glad you posted this, I will push them to do something about it.
 
Y

ymikhale

New member
my daughter had this a few months ago, she was also 15 months old at the time. They told me they were going to watch it closely, it could be a little congestion. I am glad you posted this, I will push them to do something about it.
 
Y

ymikhale

New member
my daughter had this a few months ago, she was also 15 months old at the time. They told me they were going to watch it closely, it could be a little congestion. I am glad you posted this, I will push them to do something about it.
 
Y

ymikhale

New member
my daughter had this a few months ago, she was also 15 months old at the time. They told me they were going to watch it closely, it could be a little congestion. I am glad you posted this, I will push them to do something about it.
 
K

kitomd21

New member
I'm having a difficult time with it all...I thought she was doing so well. She hardly coughs. Is gaining weight well. Never runs a fever. We do CPT 2-3x daily. I'm just scared about how this relates to long-term lung function/decline. I hate to think of timelines, but now I can't get it out of my mind. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
K

kitomd21

New member
I'm having a difficult time with it all...I thought she was doing so well. She hardly coughs. Is gaining weight well. Never runs a fever. We do CPT 2-3x daily. I'm just scared about how this relates to long-term lung function/decline. I hate to think of timelines, but now I can't get it out of my mind. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
K

kitomd21

New member
I'm having a difficult time with it all...I thought she was doing so well. She hardly coughs. Is gaining weight well. Never runs a fever. We do CPT 2-3x daily. I'm just scared about how this relates to long-term lung function/decline. I hate to think of timelines, but now I can't get it out of my mind. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
K

kitomd21

New member
I'm having a difficult time with it all...I thought she was doing so well. She hardly coughs. Is gaining weight well. Never runs a fever. We do CPT 2-3x daily. I'm just scared about how this relates to long-term lung function/decline. I hate to think of timelines, but now I can't get it out of my mind. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
K

kitomd21

New member
I'm having a difficult time with it all...I thought she was doing so well. She hardly coughs. Is gaining weight well. Never runs a fever. We do CPT 2-3x daily. I'm just scared about how this relates to long-term lung function/decline. I hate to think of timelines, but now I can't get it out of my mind. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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