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valigirl21 · Feb 4, 2009

To mnmthomson, I'm delighted to meet you, and look forward to seeing more posts from you. This is a great place, so welcome! To 112495, I have started handing over the reigns to my son in regaurds to his treatment. I monitor him, but he physically has to take his meds. He's 9, and has been doing this since he was 7. Meds have been piled on, and some deleted, but he knows how much, what its for, and what happens when he doesn't take it. He still tries to skip some of them, but he is only 9. I know it seems like a lot for a small boy, but it a big responsibility, and the sooner they understand the gravity, I think the more they become compliant. My ds even now knows his body enough that this morning hestarted a treatment b/c he felt tight in his chest and hasd been coughing the day before. Good luck andthis is a good place.

valigirl21 · Feb 4, 2009

To mnmthomson, I'm delighted to meet you, and look forward to seeing more posts from you. This is a great place, so welcome! To 112495, I have started handing over the reigns to my son in regaurds to his treatment. I monitor him, but he physically has to take his meds. He's 9, and has been doing this since he was 7. Meds have been piled on, and some deleted, but he knows how much, what its for, and what happens when he doesn't take it. He still tries to skip some of them, but he is only 9. I know it seems like a lot for a small boy, but it a big responsibility, and the sooner they understand the gravity, I think the more they become compliant. My ds even now knows his body enough that this morning hestarted a treatment b/c he felt tight in his chest and hasd been coughing the day before. Good luck andthis is a good place.

valigirl21 · Feb 4, 2009

To mnmthomson, I'm delighted to meet you, and look forward to seeing more posts from you. This is a great place, so welcome! To 112495, I have started handing over the reigns to my son in regaurds to his treatment. I monitor him, but he physically has to take his meds. He's 9, and has been doing this since he was 7. Meds have been piled on, and some deleted, but he knows how much, what its for, and what happens when he doesn't take it. He still tries to skip some of them, but he is only 9. I know it seems like a lot for a small boy, but it a big responsibility, and the sooner they understand the gravity, I think the more they become compliant. My ds even now knows his body enough that this morning hestarted a treatment b/c he felt tight in his chest and hasd been coughing the day before. Good luck andthis is a good place.

valigirl21 · Feb 4, 2009

To mnmthomson, I'm delighted to meet you, and look forward to seeing more posts from you. This is a great place, so welcome! To 112495, I have started handing over the reigns to my son in regaurds to his treatment. I monitor him, but he physically has to take his meds. He's 9, and has been doing this since he was 7. Meds have been piled on, and some deleted, but he knows how much, what its for, and what happens when he doesn't take it. He still tries to skip some of them, but he is only 9. I know it seems like a lot for a small boy, but it a big responsibility, and the sooner they understand the gravity, I think the more they become compliant. My ds even now knows his body enough that this morning hestarted a treatment b/c he felt tight in his chest and hasd been coughing the day before. Good luck andthis is a good place.

valigirl21 · Feb 4, 2009

To mnmthomson, I'm delighted to meet you, and look forward to seeing more posts from you. This is a great place, so welcome! To 112495, I have started handing over the reigns to my son in regaurds to his treatment. I monitor him, but he physically has to take his meds. He's 9, and has been doing this since he was 7. Meds have been piled on, and some deleted, but he knows how much, what its for, and what happens when he doesn't take it. He still tries to skip some of them, but he is only 9. I know it seems like a lot for a small boy, but it a big responsibility, and the sooner they understand the gravity, I think the more they become compliant. My ds even now knows his body enough that this morning hestarted a treatment b/c he felt tight in his chest and hasd been coughing the day before. Good luck andthis is a good place.

112495 · Feb 4, 2009

To valigirl21, you should feel proud of yourself that your 9 year old is taking his meds on his own! That's wonderful!
How does it work when it comes to his breathing treatments and vest or percussion? My son doesn't throw fits or anything but he does find ways to put it off. We do find ourselves having to be a little firm with him at times. That's what worries me, I am told don't worry about tomorrow just take care of today. Tough to follow. Especially when he's on his own. How can I be sure he's taking care of himself?

Another concern I have is our living situaiton. We live in a duplex that needs work. I worry because Andrew has been hospitalized with different types of mold in his lungs. I have a feeling that it may be coming from where we live. Another problem is the dust that is in the vents and we have a swamp cooler. I know this can't be good for him. I've applied to a governmental agency called Section8 but have yet to hear from them. HELP!! I know the CF Foundation only takes donations to find a cure but if there were somewhere else that they can point me to for some kind of aid it would be greatly appreciated.

112495 · Feb 4, 2009

To valigirl21, you should feel proud of yourself that your 9 year old is taking his meds on his own! That's wonderful!
How does it work when it comes to his breathing treatments and vest or percussion? My son doesn't throw fits or anything but he does find ways to put it off. We do find ourselves having to be a little firm with him at times. That's what worries me, I am told don't worry about tomorrow just take care of today. Tough to follow. Especially when he's on his own. How can I be sure he's taking care of himself?

Another concern I have is our living situaiton. We live in a duplex that needs work. I worry because Andrew has been hospitalized with different types of mold in his lungs. I have a feeling that it may be coming from where we live. Another problem is the dust that is in the vents and we have a swamp cooler. I know this can't be good for him. I've applied to a governmental agency called Section8 but have yet to hear from them. HELP!! I know the CF Foundation only takes donations to find a cure but if there were somewhere else that they can point me to for some kind of aid it would be greatly appreciated.

112495 · Feb 4, 2009

To valigirl21, you should feel proud of yourself that your 9 year old is taking his meds on his own! That's wonderful!
How does it work when it comes to his breathing treatments and vest or percussion? My son doesn't throw fits or anything but he does find ways to put it off. We do find ourselves having to be a little firm with him at times. That's what worries me, I am told don't worry about tomorrow just take care of today. Tough to follow. Especially when he's on his own. How can I be sure he's taking care of himself?

Another concern I have is our living situaiton. We live in a duplex that needs work. I worry because Andrew has been hospitalized with different types of mold in his lungs. I have a feeling that it may be coming from where we live. Another problem is the dust that is in the vents and we have a swamp cooler. I know this can't be good for him. I've applied to a governmental agency called Section8 but have yet to hear from them. HELP!! I know the CF Foundation only takes donations to find a cure but if there were somewhere else that they can point me to for some kind of aid it would be greatly appreciated.

112495 · Feb 4, 2009

To valigirl21, you should feel proud of yourself that your 9 year old is taking his meds on his own! That's wonderful!
How does it work when it comes to his breathing treatments and vest or percussion? My son doesn't throw fits or anything but he does find ways to put it off. We do find ourselves having to be a little firm with him at times. That's what worries me, I am told don't worry about tomorrow just take care of today. Tough to follow. Especially when he's on his own. How can I be sure he's taking care of himself?

Another concern I have is our living situaiton. We live in a duplex that needs work. I worry because Andrew has been hospitalized with different types of mold in his lungs. I have a feeling that it may be coming from where we live. Another problem is the dust that is in the vents and we have a swamp cooler. I know this can't be good for him. I've applied to a governmental agency called Section8 but have yet to hear from them. HELP!! I know the CF Foundation only takes donations to find a cure but if there were somewhere else that they can point me to for some kind of aid it would be greatly appreciated.

112495 · Feb 4, 2009

To valigirl21, you should feel proud of yourself that your 9 year old is taking his meds on his own! That's wonderful!
 How does it work when it comes to his breathing treatments and vest or percussion? My son doesn't throw fits or anything but he does find ways to put it off. We do find ourselves having to be a little firm with him at times. That's what worries me, I am told don't worry about tomorrow just take care of today. Tough to follow. Especially when he's on his own. How can I be sure he's taking care of himself?
 
 
 Another concern I have is our living situaiton. We live in a duplex that needs work. I worry because Andrew has been hospitalized with different types of mold in his lungs. I have a feeling that it may be coming from where we live. Another problem is the dust that is in the vents and we have a swamp cooler. I know this can't be good for him. I've applied to a governmental agency called Section8 but have yet to hear from them. HELP!! I know the CF Foundation only takes donations to find a cure but if there were somewhere else that they can point me to for some kind of aid it would be greatly appreciated.

Nightwriter · Feb 4, 2009

112495,

You are new here and I welcome you. You are going to find this site so useful to you and in a lot of ways helpful as you learn to manage your child's CF. I am a proponent of treating the asthma component to CF that is rarely addressed by most doctors. There are triggers in your lifestyle that raises inflammation which makes the airway swell and constrict (asthma) which traps mucus causing repeated illnesses.

You seem very aware that your home environment is helping to cause your son's problem You are right. Dusty vents and swampcoolers could very well be a contributing factor. I can't help you with the swamp cooler which may be holding stagnant water conatining bacteria and funguses, which if you can't address, nothing will help. But I can help you with your vents. You can buy cheap and effective air vent covers.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allergysolution.com/products.asp?dept=5
">http://www.allergysolution.com/products.asp?dept=5
</a>
mnmthomson,

Welcome also. I think we have already posted on the same threads. What an amazing family you have. I see your son also had problems with multiple exacerbations. I thnk you are going to find this site very useful and may want to look into getting to the sources and triggers which are the root of many of the infections. And in fact there are times that infections are really not infections at all -- they are reactions due to inflammation which can turn into infection if not treated.

Nightwriter · Feb 4, 2009

112495,

You are new here and I welcome you. You are going to find this site so useful to you and in a lot of ways helpful as you learn to manage your child's CF. I am a proponent of treating the asthma component to CF that is rarely addressed by most doctors. There are triggers in your lifestyle that raises inflammation which makes the airway swell and constrict (asthma) which traps mucus causing repeated illnesses.

You seem very aware that your home environment is helping to cause your son's problem You are right. Dusty vents and swampcoolers could very well be a contributing factor. I can't help you with the swamp cooler which may be holding stagnant water conatining bacteria and funguses, which if you can't address, nothing will help. But I can help you with your vents. You can buy cheap and effective air vent covers.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allergysolution.com/products.asp?dept=5
">http://www.allergysolution.com/products.asp?dept=5
</a>
mnmthomson,

Welcome also. I think we have already posted on the same threads. What an amazing family you have. I see your son also had problems with multiple exacerbations. I thnk you are going to find this site very useful and may want to look into getting to the sources and triggers which are the root of many of the infections. And in fact there are times that infections are really not infections at all -- they are reactions due to inflammation which can turn into infection if not treated.

Nightwriter · Feb 4, 2009

112495,

You are new here and I welcome you. You are going to find this site so useful to you and in a lot of ways helpful as you learn to manage your child's CF. I am a proponent of treating the asthma component to CF that is rarely addressed by most doctors. There are triggers in your lifestyle that raises inflammation which makes the airway swell and constrict (asthma) which traps mucus causing repeated illnesses.

You seem very aware that your home environment is helping to cause your son's problem You are right. Dusty vents and swampcoolers could very well be a contributing factor. I can't help you with the swamp cooler which may be holding stagnant water conatining bacteria and funguses, which if you can't address, nothing will help. But I can help you with your vents. You can buy cheap and effective air vent covers.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allergysolution.com/products.asp?dept=5
">http://www.allergysolution.com/products.asp?dept=5
</a>
mnmthomson,

Welcome also. I think we have already posted on the same threads. What an amazing family you have. I see your son also had problems with multiple exacerbations. I thnk you are going to find this site very useful and may want to look into getting to the sources and triggers which are the root of many of the infections. And in fact there are times that infections are really not infections at all -- they are reactions due to inflammation which can turn into infection if not treated.

Nightwriter · Feb 4, 2009

112495,

You are new here and I welcome you. You are going to find this site so useful to you and in a lot of ways helpful as you learn to manage your child's CF. I am a proponent of treating the asthma component to CF that is rarely addressed by most doctors. There are triggers in your lifestyle that raises inflammation which makes the airway swell and constrict (asthma) which traps mucus causing repeated illnesses.

You seem very aware that your home environment is helping to cause your son's problem You are right. Dusty vents and swampcoolers could very well be a contributing factor. I can't help you with the swamp cooler which may be holding stagnant water conatining bacteria and funguses, which if you can't address, nothing will help. But I can help you with your vents. You can buy cheap and effective air vent covers.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allergysolution.com/products.asp?dept=5
">http://www.allergysolution.com/products.asp?dept=5
</a>
mnmthomson,

Welcome also. I think we have already posted on the same threads. What an amazing family you have. I see your son also had problems with multiple exacerbations. I thnk you are going to find this site very useful and may want to look into getting to the sources and triggers which are the root of many of the infections. And in fact there are times that infections are really not infections at all -- they are reactions due to inflammation which can turn into infection if not treated.

Nightwriter · Feb 4, 2009

112495,
 
 You are new here and I welcome you. You are going to find this site so useful to you and in a lot of ways helpful as you learn to manage your child's CF. I am a proponent of treating the asthma component to CF that is rarely addressed by most doctors. There are triggers in your lifestyle that raises inflammation which makes the airway swell and constrict (asthma) which traps mucus causing repeated illnesses.
 
 You seem very aware that your home environment is helping to cause your son's problem You are right. Dusty vents and swampcoolers could very well be a contributing factor. I can't help you with the swamp cooler which may be holding stagnant water conatining bacteria and funguses, which if you can't address, nothing will help. But I can help you with your vents. You can buy cheap and effective air vent covers.
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.allergysolution.com/products.asp?dept=5
">http://www.allergysolution.com/products.asp?dept=5
</a> 
 mnmthomson,
 
 Welcome also. I think we have already posted on the same threads. What an amazing family you have. I see your son also had problems with multiple exacerbations. I thnk you are going to find this site very useful and may want to look into getting to the sources and triggers which are the root of many of the infections. And in fact there are times that infections are really not infections at all -- they are reactions due to inflammation which can turn into infection if not treated.

112495 · Feb 5, 2009

I am a 37 year old mother with a 13 year old son who has CF. He was diagnosed at 3 months old. I had to end up going to the emergency room many times to which one doctor told me "it's people like you who make the health care premiums go up". This was before he was diagnosed. It wasn't until I demanded that Andrew have a chest xray they found he had pneumonia. After several other tests they had him admitted at Tucson Medical Center. They released him after a week only to have him return because he was aspirating his milk. He had actual milk coming from his nose. He was essentially drowning in it because of his persistent coughing. Finally, they hospitalized him and I demanded he see a specialist - a Pediatric Pulmonary. They performed a sweat test and the rest is history.

What really got me going was the doctor who said that to me had no idea what I was going through and didn't care. I do thank him, though, because hadn't been for him I wouldn't know that I could actually question doctor's orders. I didn't know my input would be so invaluable. There are so many different situations that I have been put in that are the result outcome of that one doctor. Andrew is on night drip feeds and about 17 different medications, vitamins and three different aerosols. He also uses advair inhaler.

Although Andrew has had an eventful life. He has a younger brother who's 7. He has participated in "A Pilot for a Day" program. He got to visit Davis Monthan Airforce Base here in Tucson. He had alot of fun. He also participated "Firefighter for a Day" where he had a blast too. Andrew is home-schooled. Sometimes I worry about the socialization issue but he seems to be doing fine! He makes friends easily and is very outgoing. I don't know why I'm so full of worry. I guess that's my job.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I do keep the option open to him about whether or not he feels ready to attend a public school - it's on the table and that's all I can do for now.<img src="i/expressions/praying.gif" border="0">

112495 · Feb 5, 2009

I am a 37 year old mother with a 13 year old son who has CF. He was diagnosed at 3 months old. I had to end up going to the emergency room many times to which one doctor told me "it's people like you who make the health care premiums go up". This was before he was diagnosed. It wasn't until I demanded that Andrew have a chest xray they found he had pneumonia. After several other tests they had him admitted at Tucson Medical Center. They released him after a week only to have him return because he was aspirating his milk. He had actual milk coming from his nose. He was essentially drowning in it because of his persistent coughing. Finally, they hospitalized him and I demanded he see a specialist - a Pediatric Pulmonary. They performed a sweat test and the rest is history.

What really got me going was the doctor who said that to me had no idea what I was going through and didn't care. I do thank him, though, because hadn't been for him I wouldn't know that I could actually question doctor's orders. I didn't know my input would be so invaluable. There are so many different situations that I have been put in that are the result outcome of that one doctor. Andrew is on night drip feeds and about 17 different medications, vitamins and three different aerosols. He also uses advair inhaler.

Although Andrew has had an eventful life. He has a younger brother who's 7. He has participated in "A Pilot for a Day" program. He got to visit Davis Monthan Airforce Base here in Tucson. He had alot of fun. He also participated "Firefighter for a Day" where he had a blast too. Andrew is home-schooled. Sometimes I worry about the socialization issue but he seems to be doing fine! He makes friends easily and is very outgoing. I don't know why I'm so full of worry. I guess that's my job.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I do keep the option open to him about whether or not he feels ready to attend a public school - it's on the table and that's all I can do for now.<img src="i/expressions/praying.gif" border="0">

112495 · Feb 5, 2009

I am a 37 year old mother with a 13 year old son who has CF. He was diagnosed at 3 months old. I had to end up going to the emergency room many times to which one doctor told me "it's people like you who make the health care premiums go up". This was before he was diagnosed. It wasn't until I demanded that Andrew have a chest xray they found he had pneumonia. After several other tests they had him admitted at Tucson Medical Center. They released him after a week only to have him return because he was aspirating his milk. He had actual milk coming from his nose. He was essentially drowning in it because of his persistent coughing. Finally, they hospitalized him and I demanded he see a specialist - a Pediatric Pulmonary. They performed a sweat test and the rest is history.

What really got me going was the doctor who said that to me had no idea what I was going through and didn't care. I do thank him, though, because hadn't been for him I wouldn't know that I could actually question doctor's orders. I didn't know my input would be so invaluable. There are so many different situations that I have been put in that are the result outcome of that one doctor. Andrew is on night drip feeds and about 17 different medications, vitamins and three different aerosols. He also uses advair inhaler.

Although Andrew has had an eventful life. He has a younger brother who's 7. He has participated in "A Pilot for a Day" program. He got to visit Davis Monthan Airforce Base here in Tucson. He had alot of fun. He also participated "Firefighter for a Day" where he had a blast too. Andrew is home-schooled. Sometimes I worry about the socialization issue but he seems to be doing fine! He makes friends easily and is very outgoing. I don't know why I'm so full of worry. I guess that's my job.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I do keep the option open to him about whether or not he feels ready to attend a public school - it's on the table and that's all I can do for now.<img src="i/expressions/praying.gif" border="0">

112495 · Feb 5, 2009

I am a 37 year old mother with a 13 year old son who has CF. He was diagnosed at 3 months old. I had to end up going to the emergency room many times to which one doctor told me "it's people like you who make the health care premiums go up". This was before he was diagnosed. It wasn't until I demanded that Andrew have a chest xray they found he had pneumonia. After several other tests they had him admitted at Tucson Medical Center. They released him after a week only to have him return because he was aspirating his milk. He had actual milk coming from his nose. He was essentially drowning in it because of his persistent coughing. Finally, they hospitalized him and I demanded he see a specialist - a Pediatric Pulmonary. They performed a sweat test and the rest is history.

What really got me going was the doctor who said that to me had no idea what I was going through and didn't care. I do thank him, though, because hadn't been for him I wouldn't know that I could actually question doctor's orders. I didn't know my input would be so invaluable. There are so many different situations that I have been put in that are the result outcome of that one doctor. Andrew is on night drip feeds and about 17 different medications, vitamins and three different aerosols. He also uses advair inhaler.

Although Andrew has had an eventful life. He has a younger brother who's 7. He has participated in "A Pilot for a Day" program. He got to visit Davis Monthan Airforce Base here in Tucson. He had alot of fun. He also participated "Firefighter for a Day" where he had a blast too. Andrew is home-schooled. Sometimes I worry about the socialization issue but he seems to be doing fine! He makes friends easily and is very outgoing. I don't know why I'm so full of worry. I guess that's my job.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I do keep the option open to him about whether or not he feels ready to attend a public school - it's on the table and that's all I can do for now.<img src="i/expressions/praying.gif" border="0">

112495 · Feb 5, 2009

I am a 37 year old mother with a 13 year old son who has CF. He was diagnosed at 3 months old. I had to end up going to the emergency room many times to which one doctor told me "it's people like you who make the health care premiums go up". This was before he was diagnosed. It wasn't until I demanded that Andrew have a chest xray they found he had pneumonia. After several other tests they had him admitted at Tucson Medical Center. They released him after a week only to have him return because he was aspirating his milk. He had actual milk coming from his nose. He was essentially drowning in it because of his persistent coughing. Finally, they hospitalized him and I demanded he see a specialist - a Pediatric Pulmonary. They performed a sweat test and the rest is history.
 
 What really got me going was the doctor who said that to me had no idea what I was going through and didn't care. I do thank him, though, because hadn't been for him I wouldn't know that I could actually question doctor's orders. I didn't know my input would be so invaluable. There are so many different situations that I have been put in that are the result outcome of that one doctor. Andrew is on night drip feeds and about 17 different medications, vitamins and three different aerosols. He also uses advair inhaler.
 
 Although Andrew has had an eventful life. He has a younger brother who's 7. He has participated in "A Pilot for a Day" program. He got to visit Davis Monthan Airforce Base here in Tucson. He had alot of fun. He also participated "Firefighter for a Day" where he had a blast too. Andrew is home-schooled. Sometimes I worry about the socialization issue but he seems to be doing fine! He makes friends easily and is very outgoing. I don't know why I'm so full of worry. I guess that's my job.<img src="i/expressions/face-icon-small-wink.gif" border="0"> I do keep the option open to him about whether or not he feels ready to attend a public school - it's on the table and that's all I can do for now.<img src="i/expressions/praying.gif" border="0">

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