Nebbed Mucomyst...

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

It sucks though because there is only two places in Arkansas to see a CF Clinic and I have already left the other one.

</end quote></div>

What I would recommend is going once or twice a year (if you can afford it) for a consult to a well-known CF center.

This way, you can make sure you're on top of the real facts of CF treatment, get a different perspective on your child's health.

No CF center is perfect, but by visiting other centers occasionally you can increase your chances of success.

Take care

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

It sucks though because there is only two places in Arkansas to see a CF Clinic and I have already left the other one.

</end quote></div>

What I would recommend is going once or twice a year (if you can afford it) for a consult to a well-known CF center.

This way, you can make sure you're on top of the real facts of CF treatment, get a different perspective on your child's health.

No CF center is perfect, but by visiting other centers occasionally you can increase your chances of success.

Take care

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

It sucks though because there is only two places in Arkansas to see a CF Clinic and I have already left the other one.

</end quote></div>

What I would recommend is going once or twice a year (if you can afford it) for a consult to a well-known CF center.

This way, you can make sure you're on top of the real facts of CF treatment, get a different perspective on your child's health.

No CF center is perfect, but by visiting other centers occasionally you can increase your chances of success.

Take care

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>

It sucks though because there is only two places in Arkansas to see a CF Clinic and I have already left the other one.

</end quote>

What I would recommend is going once or twice a year (if you can afford it) for a consult to a well-known CF center.

This way, you can make sure you're on top of the real facts of CF treatment, get a different perspective on your child's health.

No CF center is perfect, but by visiting other centers occasionally you can increase your chances of success.

Take care

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mariahsmommy</b></i>
<br />
<br />It sucks though because there is only two places in Arkansas to see a CF Clinic and I have already left the other one.
<br />
<br /></end quote>
<br />
<br />What I would recommend is going once or twice a year (if you can afford it) for a consult to a well-known CF center.
<br />
<br />This way, you can make sure you're on top of the real facts of CF treatment, get a different perspective on your child's health.
<br />
<br />No CF center is perfect, but by visiting other centers occasionally you can increase your chances of success.
<br />
<br />Take care

 

[mariahsmommy]

That's a great idea! I found out last night by looking on Blue Cross' website that with the blue card program you can use your insurance if you travel or move. We currently have Arkansas Blue Cross and Blue Shield so if we went to a cf center out of state, it might be covered. I am definetely going to call Monday and find out.

I have just had several issues with this group at Little Rock and I feel like they don't really listen to my concerns.

For instance, my daughter has had feeding aversions since birth which I think is due to her not being able to eat with all three surgeries and the fact that she hates the enzymes. I don't know for sure though. I kept telling them she won't eat and I have to tube everything and they never once suggested Pancrecarb that you can mix with applesauce and put straight through the tube. I had to research and find it myself after I had asked them for months what to do. And when I asked her dietician about them, she was like well let's just wait till her next appt. and I had to fight with her about it. She even said well every other cf kid takes the enzymes fine. But since the switch to the new enymes, her eating has improved.

Another is at our last visit, I could see the nurses preparing the room and I watched them put their gown and gloves on and walk in and out of the room touching things. I was appalled and when I confronted them, they told me they were very well trained in infection control! I didn't agree and neither did they, so I told them to change their gloves.

It just drives me nuts that they don't listen very well. CF care is supposed to be individualized not a standard right or wrong. I just try to be up to date on everything and do the best I can to protect her.

 

[mariahsmommy]

That's a great idea! I found out last night by looking on Blue Cross' website that with the blue card program you can use your insurance if you travel or move. We currently have Arkansas Blue Cross and Blue Shield so if we went to a cf center out of state, it might be covered. I am definetely going to call Monday and find out.

I have just had several issues with this group at Little Rock and I feel like they don't really listen to my concerns.

For instance, my daughter has had feeding aversions since birth which I think is due to her not being able to eat with all three surgeries and the fact that she hates the enzymes. I don't know for sure though. I kept telling them she won't eat and I have to tube everything and they never once suggested Pancrecarb that you can mix with applesauce and put straight through the tube. I had to research and find it myself after I had asked them for months what to do. And when I asked her dietician about them, she was like well let's just wait till her next appt. and I had to fight with her about it. She even said well every other cf kid takes the enzymes fine. But since the switch to the new enymes, her eating has improved.

Another is at our last visit, I could see the nurses preparing the room and I watched them put their gown and gloves on and walk in and out of the room touching things. I was appalled and when I confronted them, they told me they were very well trained in infection control! I didn't agree and neither did they, so I told them to change their gloves.

It just drives me nuts that they don't listen very well. CF care is supposed to be individualized not a standard right or wrong. I just try to be up to date on everything and do the best I can to protect her.

 

[mariahsmommy]

That's a great idea! I found out last night by looking on Blue Cross' website that with the blue card program you can use your insurance if you travel or move. We currently have Arkansas Blue Cross and Blue Shield so if we went to a cf center out of state, it might be covered. I am definetely going to call Monday and find out.

I have just had several issues with this group at Little Rock and I feel like they don't really listen to my concerns.

For instance, my daughter has had feeding aversions since birth which I think is due to her not being able to eat with all three surgeries and the fact that she hates the enzymes. I don't know for sure though. I kept telling them she won't eat and I have to tube everything and they never once suggested Pancrecarb that you can mix with applesauce and put straight through the tube. I had to research and find it myself after I had asked them for months what to do. And when I asked her dietician about them, she was like well let's just wait till her next appt. and I had to fight with her about it. She even said well every other cf kid takes the enzymes fine. But since the switch to the new enymes, her eating has improved.

Another is at our last visit, I could see the nurses preparing the room and I watched them put their gown and gloves on and walk in and out of the room touching things. I was appalled and when I confronted them, they told me they were very well trained in infection control! I didn't agree and neither did they, so I told them to change their gloves.

It just drives me nuts that they don't listen very well. CF care is supposed to be individualized not a standard right or wrong. I just try to be up to date on everything and do the best I can to protect her.

 

[mariahsmommy]

That's a great idea! I found out last night by looking on Blue Cross' website that with the blue card program you can use your insurance if you travel or move. We currently have Arkansas Blue Cross and Blue Shield so if we went to a cf center out of state, it might be covered. I am definetely going to call Monday and find out.

I have just had several issues with this group at Little Rock and I feel like they don't really listen to my concerns.

For instance, my daughter has had feeding aversions since birth which I think is due to her not being able to eat with all three surgeries and the fact that she hates the enzymes. I don't know for sure though. I kept telling them she won't eat and I have to tube everything and they never once suggested Pancrecarb that you can mix with applesauce and put straight through the tube. I had to research and find it myself after I had asked them for months what to do. And when I asked her dietician about them, she was like well let's just wait till her next appt. and I had to fight with her about it. She even said well every other cf kid takes the enzymes fine. But since the switch to the new enymes, her eating has improved.

Another is at our last visit, I could see the nurses preparing the room and I watched them put their gown and gloves on and walk in and out of the room touching things. I was appalled and when I confronted them, they told me they were very well trained in infection control! I didn't agree and neither did they, so I told them to change their gloves.

It just drives me nuts that they don't listen very well. CF care is supposed to be individualized not a standard right or wrong. I just try to be up to date on everything and do the best I can to protect her.

 

[mariahsmommy]

That's a great idea! I found out last night by looking on Blue Cross' website that with the blue card program you can use your insurance if you travel or move. We currently have Arkansas Blue Cross and Blue Shield so if we went to a cf center out of state, it might be covered. I am definetely going to call Monday and find out.
<br />
<br />I have just had several issues with this group at Little Rock and I feel like they don't really listen to my concerns.
<br />
<br />For instance, my daughter has had feeding aversions since birth which I think is due to her not being able to eat with all three surgeries and the fact that she hates the enzymes. I don't know for sure though. I kept telling them she won't eat and I have to tube everything and they never once suggested Pancrecarb that you can mix with applesauce and put straight through the tube. I had to research and find it myself after I had asked them for months what to do. And when I asked her dietician about them, she was like well let's just wait till her next appt. and I had to fight with her about it. She even said well every other cf kid takes the enzymes fine. But since the switch to the new enymes, her eating has improved.
<br />
<br />Another is at our last visit, I could see the nurses preparing the room and I watched them put their gown and gloves on and walk in and out of the room touching things. I was appalled and when I confronted them, they told me they were very well trained in infection control! I didn't agree and neither did they, so I told them to change their gloves.
<br />
<br />It just drives me nuts that they don't listen very well. CF care is supposed to be individualized not a standard right or wrong. I just try to be up to date on everything and do the best I can to protect her.

 

[mneville]

Welcome to my world! Aidan was on Xopenex and Pulmozyne when young. We traveled to Minnesota when the Bell Curve article came out. Dr Warwick preached Mucomyst. We came home and told doc we wanted to try it. He was against it saying it was 'old school' and could cause bronchospasms. We backed away for awhile but then really wanted to try it so he did give a script. We mix NAC, albuterol and Intal and neb it twice a day.

We are the only patient at our center who is on it and we think it works great. Aidan has had two bronchs which showed no inflammation and his FEV is 156%. Not bad for a 5 year old Double Delta. It is worth a try!

Megan

 

[mneville]

Welcome to my world! Aidan was on Xopenex and Pulmozyne when young. We traveled to Minnesota when the Bell Curve article came out. Dr Warwick preached Mucomyst. We came home and told doc we wanted to try it. He was against it saying it was 'old school' and could cause bronchospasms. We backed away for awhile but then really wanted to try it so he did give a script. We mix NAC, albuterol and Intal and neb it twice a day.

We are the only patient at our center who is on it and we think it works great. Aidan has had two bronchs which showed no inflammation and his FEV is 156%. Not bad for a 5 year old Double Delta. It is worth a try!

Megan

 

[mneville]

Welcome to my world! Aidan was on Xopenex and Pulmozyne when young. We traveled to Minnesota when the Bell Curve article came out. Dr Warwick preached Mucomyst. We came home and told doc we wanted to try it. He was against it saying it was 'old school' and could cause bronchospasms. We backed away for awhile but then really wanted to try it so he did give a script. We mix NAC, albuterol and Intal and neb it twice a day.

We are the only patient at our center who is on it and we think it works great. Aidan has had two bronchs which showed no inflammation and his FEV is 156%. Not bad for a 5 year old Double Delta. It is worth a try!

Megan

 

[mneville]

Welcome to my world! Aidan was on Xopenex and Pulmozyne when young. We traveled to Minnesota when the Bell Curve article came out. Dr Warwick preached Mucomyst. We came home and told doc we wanted to try it. He was against it saying it was 'old school' and could cause bronchospasms. We backed away for awhile but then really wanted to try it so he did give a script. We mix NAC, albuterol and Intal and neb it twice a day.

We are the only patient at our center who is on it and we think it works great. Aidan has had two bronchs which showed no inflammation and his FEV is 156%. Not bad for a 5 year old Double Delta. It is worth a try!

Megan

 

[mneville]

Welcome to my world! Aidan was on Xopenex and Pulmozyne when young. We traveled to Minnesota when the Bell Curve article came out. Dr Warwick preached Mucomyst. We came home and told doc we wanted to try it. He was against it saying it was 'old school' and could cause bronchospasms. We backed away for awhile but then really wanted to try it so he did give a script. We mix NAC, albuterol and Intal and neb it twice a day.
<br />
<br />We are the only patient at our center who is on it and we think it works great. Aidan has had two bronchs which showed no inflammation and his FEV is 156%. Not bad for a 5 year old Double Delta. It is worth a try!
<br />
<br />Megan

 

[mariahsmommy]

Thanks Megan, I try to put full faith that her doc is doing and suggesting the right things, but why would the #1 center in the country suggest nebbed NAC and it have the horrible side effects her doc is saying?? They have to be #1 for a reason and I am sure this isn't the only thing but it probably has alot to do with it.

Thanks to everyone"s advice!

 

[mariahsmommy]

Thanks Megan, I try to put full faith that her doc is doing and suggesting the right things, but why would the #1 center in the country suggest nebbed NAC and it have the horrible side effects her doc is saying?? They have to be #1 for a reason and I am sure this isn't the only thing but it probably has alot to do with it.

Thanks to everyone"s advice!

 

[mariahsmommy]

Thanks Megan, I try to put full faith that her doc is doing and suggesting the right things, but why would the #1 center in the country suggest nebbed NAC and it have the horrible side effects her doc is saying?? They have to be #1 for a reason and I am sure this isn't the only thing but it probably has alot to do with it.

Thanks to everyone"s advice!

 

[mariahsmommy]

Thanks Megan, I try to put full faith that her doc is doing and suggesting the right things, but why would the #1 center in the country suggest nebbed NAC and it have the horrible side effects her doc is saying?? They have to be #1 for a reason and I am sure this isn't the only thing but it probably has alot to do with it.

Thanks to everyone"s advice!

 

[mariahsmommy]

Thanks Megan, I try to put full faith that her doc is doing and suggesting the right things, but why would the #1 center in the country suggest nebbed NAC and it have the horrible side effects her doc is saying?? They have to be #1 for a reason and I am sure this isn't the only thing but it probably has alot to do with it.
<br />
<br />Thanks to everyone"s advice!