CF Doc. gives negative survival rate for 9 yr. old,Do I get second opinion??

J

JORDYSMOM

New member
I couldn't agree more with Nightwriter. My son's asthma and allergies cause him more trouble than anything else. In the three years since he has been seeing our pulmo., he has drastically cut down his ER visits for asthma attacks. He is just healthier overall. He is on Asmanex twice daily. If he misses it, he notices immediately. He is also using Veramyst for his nasal allergies, and Albuterol nebs.

I am so glad you are working hard to find answers for your daughter. Some doctors have a blanket routine that they use on all of their patients, and that's just not good enough. Each patient is an individual, and needs individual treatment. What works for most patients may not be best for your child. Keep pushing. You are definitely on the right track. Do keep us posted.

Stacey
 
J

JORDYSMOM

New member
I couldn't agree more with Nightwriter. My son's asthma and allergies cause him more trouble than anything else. In the three years since he has been seeing our pulmo., he has drastically cut down his ER visits for asthma attacks. He is just healthier overall. He is on Asmanex twice daily. If he misses it, he notices immediately. He is also using Veramyst for his nasal allergies, and Albuterol nebs.

I am so glad you are working hard to find answers for your daughter. Some doctors have a blanket routine that they use on all of their patients, and that's just not good enough. Each patient is an individual, and needs individual treatment. What works for most patients may not be best for your child. Keep pushing. You are definitely on the right track. Do keep us posted.

Stacey
 
J

JORDYSMOM

New member
I couldn't agree more with Nightwriter. My son's asthma and allergies cause him more trouble than anything else. In the three years since he has been seeing our pulmo., he has drastically cut down his ER visits for asthma attacks. He is just healthier overall. He is on Asmanex twice daily. If he misses it, he notices immediately. He is also using Veramyst for his nasal allergies, and Albuterol nebs.

I am so glad you are working hard to find answers for your daughter. Some doctors have a blanket routine that they use on all of their patients, and that's just not good enough. Each patient is an individual, and needs individual treatment. What works for most patients may not be best for your child. Keep pushing. You are definitely on the right track. Do keep us posted.

Stacey
 
J

JORDYSMOM

New member
I couldn't agree more with Nightwriter. My son's asthma and allergies cause him more trouble than anything else. In the three years since he has been seeing our pulmo., he has drastically cut down his ER visits for asthma attacks. He is just healthier overall. He is on Asmanex twice daily. If he misses it, he notices immediately. He is also using Veramyst for his nasal allergies, and Albuterol nebs.

I am so glad you are working hard to find answers for your daughter. Some doctors have a blanket routine that they use on all of their patients, and that's just not good enough. Each patient is an individual, and needs individual treatment. What works for most patients may not be best for your child. Keep pushing. You are definitely on the right track. Do keep us posted.

Stacey
 
J

JORDYSMOM

New member
I couldn't agree more with Nightwriter. My son's asthma and allergies cause him more trouble than anything else. In the three years since he has been seeing our pulmo., he has drastically cut down his ER visits for asthma attacks. He is just healthier overall. He is on Asmanex twice daily. If he misses it, he notices immediately. He is also using Veramyst for his nasal allergies, and Albuterol nebs.
<br />
<br />I am so glad you are working hard to find answers for your daughter. Some doctors have a blanket routine that they use on all of their patients, and that's just not good enough. Each patient is an individual, and needs individual treatment. What works for most patients may not be best for your child. Keep pushing. You are definitely on the right track. Do keep us posted.
<br />
<br />Stacey
 
K

katlynnsmom

New member
It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
Nora
 
K

katlynnsmom

New member
It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
Nora
 
K

katlynnsmom

New member
It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
Nora
 
K

katlynnsmom

New member
It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
Nora
 
K

katlynnsmom

New member
It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.
<br />Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
<br /> Nora
 
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