Awaiting Tests

SandyCheeks · Mar 30, 2008

Hi there! I have been hanging around this site for a while, wondering if I should post or not and after a few sleepless nights I decided to return.

My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.

After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.

We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).

I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.

2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.

I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.

Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Mar 30, 2008

Hi there! I have been hanging around this site for a while, wondering if I should post or not and after a few sleepless nights I decided to return.

My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.

After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.

We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).

I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.

2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.

I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.

Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Mar 30, 2008

Hi there! I have been hanging around this site for a while, wondering if I should post or not and after a few sleepless nights I decided to return.

My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.

After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.

We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).

I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.

2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.

I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.

Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Mar 30, 2008

Hi there! I have been hanging around this site for a while, wondering if I should post or not and after a few sleepless nights I decided to return.

My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.

After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.

We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).

I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.

2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.

I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.

Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">

SandyCheeks · Mar 30, 2008

Hi there! I have been hanging around this site for a while, wondering if I should post or not and after a few sleepless nights I decided to return.
 
 My daughter (10) has had a long hx of asthma and ear infections. 3 years ago we had her tonsils and adneiods removed due to frequent infections. I thought that would end the illnesses. Wrong. She still was sick often, now with sinus infections.
 
 After "accidently" seeing an xray result (docs told me it was fine), I found she had extensive sinus disease and scheduled her an ENT appointment. After a crazy amount of testing the only things we found were an allergy to dust, and a sweat chloride of 38. She had sinus surgery 8/07, and 8 weeks later she was having more sinus infections.
 
 We have talked with a wonderful pulmonary doc at our CF center, and now are moving forward with some testing. We did another set of PFT's- now slightly decreased from last year, and also was extremely tired from performing these. She is scheduled for a bronchoscopy, cilliary biopsy and possible further genetics on Tuesday, 4/1. (first round of genetics came back neg).
 
 I apologize for being long winded, but here are my problems (I have many and will only share a few with you<img src="i/expressions/face-icon-small-smile.gif" border="0">).
 1. Any time I talk with friends and family, hubby included they say "you are over reacting about this CF thing. Our pediatrician thought it was odd I was still concerned regarding cf. I don't feel like I have anyone who understands how conflicted I feel. Some hours I think I would be thrilled to have a dx- maybe we could be treating my daughter more appropriately, and other moments I am paralyzed by emotion. I don't know what to feel.
 
 2. I have seen alot of CF. Unfortunately what I have seen is the lousy, awful, heartwrenching side of it. I am a CF nurse (hospital). Most days with the job, things are good, but as you all know when CF is bad it is very bad.
 
 I am so thankful for all of you because I have seen so much more of what "living" with CF is all about. Now I am struggling with the possibility of my daughter having to go through all of this- honestly it keeps me up at night.
 
 Thanks for listening. I welcome your input. <img src="i/expressions/heart.gif" border="0">

AbbysMama · Mar 30, 2008

We were told by family that we were overreacting. I feel that you are doing what is in the best interest of your child. It is so hard when you don't have a "label" for what is wrong. Just knowing provides some sense of closure and gives us the ability to move forward and treat what is wrong.

Personally, you need to know that until a definitive diagnosis is made, that friends and family and even your pediatrician won't understand why you are so focused on getting an answer. If you find it isn't CF, you can breathe a sigh of relief, but then you will be met with a whole new set of problems...what is actually wrong.

I hope that you are able to figure out what is wrong. I'm glad she has a mother like you to try to do all you can to figure out what is going on with her health.

I applaud you.

Em

AbbysMama · Mar 30, 2008

We were told by family that we were overreacting. I feel that you are doing what is in the best interest of your child. It is so hard when you don't have a "label" for what is wrong. Just knowing provides some sense of closure and gives us the ability to move forward and treat what is wrong.

Personally, you need to know that until a definitive diagnosis is made, that friends and family and even your pediatrician won't understand why you are so focused on getting an answer. If you find it isn't CF, you can breathe a sigh of relief, but then you will be met with a whole new set of problems...what is actually wrong.

I hope that you are able to figure out what is wrong. I'm glad she has a mother like you to try to do all you can to figure out what is going on with her health.

I applaud you.

Em

AbbysMama · Mar 30, 2008

We were told by family that we were overreacting. I feel that you are doing what is in the best interest of your child. It is so hard when you don't have a "label" for what is wrong. Just knowing provides some sense of closure and gives us the ability to move forward and treat what is wrong.

Personally, you need to know that until a definitive diagnosis is made, that friends and family and even your pediatrician won't understand why you are so focused on getting an answer. If you find it isn't CF, you can breathe a sigh of relief, but then you will be met with a whole new set of problems...what is actually wrong.

I hope that you are able to figure out what is wrong. I'm glad she has a mother like you to try to do all you can to figure out what is going on with her health.

I applaud you.

Em

AbbysMama · Mar 30, 2008

We were told by family that we were overreacting. I feel that you are doing what is in the best interest of your child. It is so hard when you don't have a "label" for what is wrong. Just knowing provides some sense of closure and gives us the ability to move forward and treat what is wrong.

Personally, you need to know that until a definitive diagnosis is made, that friends and family and even your pediatrician won't understand why you are so focused on getting an answer. If you find it isn't CF, you can breathe a sigh of relief, but then you will be met with a whole new set of problems...what is actually wrong.

I hope that you are able to figure out what is wrong. I'm glad she has a mother like you to try to do all you can to figure out what is going on with her health.

I applaud you.

Em

AbbysMama · Mar 30, 2008

We were told by family that we were overreacting. I feel that you are doing what is in the best interest of your child. It is so hard when you don't have a "label" for what is wrong. Just knowing provides some sense of closure and gives us the ability to move forward and treat what is wrong.
 
 Personally, you need to know that until a definitive diagnosis is made, that friends and family and even your pediatrician won't understand why you are so focused on getting an answer. If you find it isn't CF, you can breathe a sigh of relief, but then you will be met with a whole new set of problems...what is actually wrong.
 
 I hope that you are able to figure out what is wrong. I'm glad she has a mother like you to try to do all you can to figure out what is going on with her health.
 
 I applaud you.
 
 Em

Mommafirst · Mar 30, 2008

I would think the CF nurse in you knows you are not over reacting. Its the mom and woman in you that lets that questions yourself. I don't have to tell you that kids with CF can come in lots of different packages and many at 10 years old have no more symptoms than your dd has.

I absolutely believe you need to go through all these motions to rule out CF. And I hope you can rule it out. But if you can't, your daughter can get the benefit of the care that will make a difference in her life.

Ignore the people that don't know what they are talking about. (((HUGS))) and welcome to the site.

Mommafirst · Mar 30, 2008

I would think the CF nurse in you knows you are not over reacting. Its the mom and woman in you that lets that questions yourself. I don't have to tell you that kids with CF can come in lots of different packages and many at 10 years old have no more symptoms than your dd has.

I absolutely believe you need to go through all these motions to rule out CF. And I hope you can rule it out. But if you can't, your daughter can get the benefit of the care that will make a difference in her life.

Ignore the people that don't know what they are talking about. (((HUGS))) and welcome to the site.

Mommafirst · Mar 30, 2008

I would think the CF nurse in you knows you are not over reacting. Its the mom and woman in you that lets that questions yourself. I don't have to tell you that kids with CF can come in lots of different packages and many at 10 years old have no more symptoms than your dd has.

I absolutely believe you need to go through all these motions to rule out CF. And I hope you can rule it out. But if you can't, your daughter can get the benefit of the care that will make a difference in her life.

Ignore the people that don't know what they are talking about. (((HUGS))) and welcome to the site.

Mommafirst · Mar 30, 2008

I would think the CF nurse in you knows you are not over reacting. Its the mom and woman in you that lets that questions yourself. I don't have to tell you that kids with CF can come in lots of different packages and many at 10 years old have no more symptoms than your dd has.

I absolutely believe you need to go through all these motions to rule out CF. And I hope you can rule it out. But if you can't, your daughter can get the benefit of the care that will make a difference in her life.

Ignore the people that don't know what they are talking about. (((HUGS))) and welcome to the site.

Mommafirst · Mar 30, 2008

I would think the CF nurse in you knows you are not over reacting. Its the mom and woman in you that lets that questions yourself. I don't have to tell you that kids with CF can come in lots of different packages and many at 10 years old have no more symptoms than your dd has.
 
 I absolutely believe you need to go through all these motions to rule out CF. And I hope you can rule it out. But if you can't, your daughter can get the benefit of the care that will make a difference in her life.
 
 Ignore the people that don't know what they are talking about. (((HUGS))) and welcome to the site.

Baileyandparkersmom · Mar 30, 2008

Do not let them make yu feel like you are overreacting!!! I had to make 4 appts. to our ped. with my 18 month old and I ltod him I thought it was CF. He kept ovelooking it. My mom is a nurse and really thougth he had it. So I would keep making appt. and addressing it and the 4th time he laughed at me and said he had done studies on CF and was 99% sure he did not have it! After taking my child to our family medicine dr. who referred us to Children's Mercy CF Clinic (which has been the best thing EVER) he was diagnosed with it. Boy I had fun telling our ped. he was WRONG!!!! I know how you feel but you are the best advocate for your child and you have the best instincts about them. Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn, mom to Parker 19 months just diagnosed with Cf DDF508 and Bailey 4yr. old w/nocf

Baileyandparkersmom · Mar 30, 2008

Do not let them make yu feel like you are overreacting!!! I had to make 4 appts. to our ped. with my 18 month old and I ltod him I thought it was CF. He kept ovelooking it. My mom is a nurse and really thougth he had it. So I would keep making appt. and addressing it and the 4th time he laughed at me and said he had done studies on CF and was 99% sure he did not have it! After taking my child to our family medicine dr. who referred us to Children's Mercy CF Clinic (which has been the best thing EVER) he was diagnosed with it. Boy I had fun telling our ped. he was WRONG!!!! I know how you feel but you are the best advocate for your child and you have the best instincts about them. Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn, mom to Parker 19 months just diagnosed with Cf DDF508 and Bailey 4yr. old w/nocf

Baileyandparkersmom · Mar 30, 2008

Do not let them make yu feel like you are overreacting!!! I had to make 4 appts. to our ped. with my 18 month old and I ltod him I thought it was CF. He kept ovelooking it. My mom is a nurse and really thougth he had it. So I would keep making appt. and addressing it and the 4th time he laughed at me and said he had done studies on CF and was 99% sure he did not have it! After taking my child to our family medicine dr. who referred us to Children's Mercy CF Clinic (which has been the best thing EVER) he was diagnosed with it. Boy I had fun telling our ped. he was WRONG!!!! I know how you feel but you are the best advocate for your child and you have the best instincts about them. Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn, mom to Parker 19 months just diagnosed with Cf DDF508 and Bailey 4yr. old w/nocf

Baileyandparkersmom · Mar 30, 2008

Do not let them make yu feel like you are overreacting!!! I had to make 4 appts. to our ped. with my 18 month old and I ltod him I thought it was CF. He kept ovelooking it. My mom is a nurse and really thougth he had it. So I would keep making appt. and addressing it and the 4th time he laughed at me and said he had done studies on CF and was 99% sure he did not have it! After taking my child to our family medicine dr. who referred us to Children's Mercy CF Clinic (which has been the best thing EVER) he was diagnosed with it. Boy I had fun telling our ped. he was WRONG!!!! I know how you feel but you are the best advocate for your child and you have the best instincts about them. Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

Jenn, mom to Parker 19 months just diagnosed with Cf DDF508 and Bailey 4yr. old w/nocf

Baileyandparkersmom · Mar 30, 2008

Do not let them make yu feel like you are overreacting!!! I had to make 4 appts. to our ped. with my 18 month old and I ltod him I thought it was CF. He kept ovelooking it. My mom is a nurse and really thougth he had it. So I would keep making appt. and addressing it and the 4th time he laughed at me and said he had done studies on CF and was 99% sure he did not have it! After taking my child to our family medicine dr. who referred us to Children's Mercy CF Clinic (which has been the best thing EVER) he was diagnosed with it. Boy I had fun telling our ped. he was WRONG!!!! I know how you feel but you are the best advocate for your child and you have the best instincts about them. Good Luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Jenn, mom to Parker 19 months just diagnosed with Cf DDF508 and Bailey 4yr. old w/nocf

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