PFTs going down fast

[tacos99]

This is my first post but I have lurked here since December 2008 when my 9 year old daughter, Shelby, was diagnosed with CF. At the time of diagnosis her FEV1 was 116. In November 2009 it was 90. As of yesterday it was 68. I have talked, yelled, and anything I could think of to get her doctor to help her.
Last summer Shelby was started on Flovent. She started showing signs of hyperglycemia. Even though I reported every symptom I was the one who had to use my husband's glucose meter and test her. Her blood sugar was over 600. It doesn't end there. Later I started noticing changes in Shelby's body (stretch marks, thickening in the middle, red face). I dutifully reported these symptoms and was told she was fat. Again I had to sit down and study the symptoms. She had steroid induced Cushings Syndrome. I'm am in no way a medical professional. After I diagnosed we
were seen by a endo and now the hyperglycemia and the Cushings have resolved.
On each of these occassions only the Nurse Practioner has helped. Her doctor is patronizing and seems to feel all new symptoms are my fault.
Yesterday her doc tells us she has mold nodules in her lungs and needs a bronch. She just had one on Jan. 13 of this year when she was admitted for IVs that did nothing. (Her pfts continued to decrease) It did show mold and fungus but until her Nurse Practitioner is back in the office on Monday I can't find out what the molds and fungus were. I do feel he could be on to something with this, but with his history and her decreasing LF I don't have a lot of faith. Does anyone have any experience with molds or fungus (she is negative for ABPA) I would be grateful for any input.
Teresa

 

[tacos99]

This is my first post but I have lurked here since December 2008 when my 9 year old daughter, Shelby, was diagnosed with CF. At the time of diagnosis her FEV1 was 116. In November 2009 it was 90. As of yesterday it was 68. I have talked, yelled, and anything I could think of to get her doctor to help her.
Last summer Shelby was started on Flovent. She started showing signs of hyperglycemia. Even though I reported every symptom I was the one who had to use my husband's glucose meter and test her. Her blood sugar was over 600. It doesn't end there. Later I started noticing changes in Shelby's body (stretch marks, thickening in the middle, red face). I dutifully reported these symptoms and was told she was fat. Again I had to sit down and study the symptoms. She had steroid induced Cushings Syndrome. I'm am in no way a medical professional. After I diagnosed we
were seen by a endo and now the hyperglycemia and the Cushings have resolved.
On each of these occassions only the Nurse Practioner has helped. Her doctor is patronizing and seems to feel all new symptoms are my fault.
Yesterday her doc tells us she has mold nodules in her lungs and needs a bronch. She just had one on Jan. 13 of this year when she was admitted for IVs that did nothing. (Her pfts continued to decrease) It did show mold and fungus but until her Nurse Practitioner is back in the office on Monday I can't find out what the molds and fungus were. I do feel he could be on to something with this, but with his history and her decreasing LF I don't have a lot of faith. Does anyone have any experience with molds or fungus (she is negative for ABPA) I would be grateful for any input.
Teresa

 

[tacos99]

This is my first post but I have lurked here since December 2008 when my 9 year old daughter, Shelby, was diagnosed with CF. At the time of diagnosis her FEV1 was 116. In November 2009 it was 90. As of yesterday it was 68. I have talked, yelled, and anything I could think of to get her doctor to help her.
Last summer Shelby was started on Flovent. She started showing signs of hyperglycemia. Even though I reported every symptom I was the one who had to use my husband's glucose meter and test her. Her blood sugar was over 600. It doesn't end there. Later I started noticing changes in Shelby's body (stretch marks, thickening in the middle, red face). I dutifully reported these symptoms and was told she was fat. Again I had to sit down and study the symptoms. She had steroid induced Cushings Syndrome. I'm am in no way a medical professional. After I diagnosed we
were seen by a endo and now the hyperglycemia and the Cushings have resolved.
On each of these occassions only the Nurse Practioner has helped. Her doctor is patronizing and seems to feel all new symptoms are my fault.
Yesterday her doc tells us she has mold nodules in her lungs and needs a bronch. She just had one on Jan. 13 of this year when she was admitted for IVs that did nothing. (Her pfts continued to decrease) It did show mold and fungus but until her Nurse Practitioner is back in the office on Monday I can't find out what the molds and fungus were. I do feel he could be on to something with this, but with his history and her decreasing LF I don't have a lot of faith. Does anyone have any experience with molds or fungus (she is negative for ABPA) I would be grateful for any input.
Teresa

 

[tacos99]

This is my first post but I have lurked here since December 2008 when my 9 year old daughter, Shelby, was diagnosed with CF. At the time of diagnosis her FEV1 was 116. In November 2009 it was 90. As of yesterday it was 68. I have talked, yelled, and anything I could think of to get her doctor to help her.
Last summer Shelby was started on Flovent. She started showing signs of hyperglycemia. Even though I reported every symptom I was the one who had to use my husband's glucose meter and test her. Her blood sugar was over 600. It doesn't end there. Later I started noticing changes in Shelby's body (stretch marks, thickening in the middle, red face). I dutifully reported these symptoms and was told she was fat. Again I had to sit down and study the symptoms. She had steroid induced Cushings Syndrome. I'm am in no way a medical professional. After I diagnosed we
were seen by a endo and now the hyperglycemia and the Cushings have resolved.
On each of these occassions only the Nurse Practioner has helped. Her doctor is patronizing and seems to feel all new symptoms are my fault.
Yesterday her doc tells us she has mold nodules in her lungs and needs a bronch. She just had one on Jan. 13 of this year when she was admitted for IVs that did nothing. (Her pfts continued to decrease) It did show mold and fungus but until her Nurse Practitioner is back in the office on Monday I can't find out what the molds and fungus were. I do feel he could be on to something with this, but with his history and her decreasing LF I don't have a lot of faith. Does anyone have any experience with molds or fungus (she is negative for ABPA) I would be grateful for any input.
Teresa

 

[tacos99]

This is my first post but I have lurked here since December 2008 when my 9 year old daughter, Shelby, was diagnosed with CF. At the time of diagnosis her FEV1 was 116. In November 2009 it was 90. As of yesterday it was 68. I have talked, yelled, and anything I could think of to get her doctor to help her.
<br />Last summer Shelby was started on Flovent. She started showing signs of hyperglycemia. Even though I reported every symptom I was the one who had to use my husband's glucose meter and test her. Her blood sugar was over 600. It doesn't end there. Later I started noticing changes in Shelby's body (stretch marks, thickening in the middle, red face). I dutifully reported these symptoms and was told she was fat. Again I had to sit down and study the symptoms. She had steroid induced Cushings Syndrome. I'm am in no way a medical professional. After I diagnosed we
<br />were seen by a endo and now the hyperglycemia and the Cushings have resolved.
<br />On each of these occassions only the Nurse Practioner has helped. Her doctor is patronizing and seems to feel all new symptoms are my fault.
<br />Yesterday her doc tells us she has mold nodules in her lungs and needs a bronch. She just had one on Jan. 13 of this year when she was admitted for IVs that did nothing. (Her pfts continued to decrease) It did show mold and fungus but until her Nurse Practitioner is back in the office on Monday I can't find out what the molds and fungus were. I do feel he could be on to something with this, but with his history and her decreasing LF I don't have a lot of faith. Does anyone have any experience with molds or fungus (she is negative for ABPA) I would be grateful for any input.
<br />Teresa

 

[JORDYSMOM]

Teresa,

Welcome. I'm glad you joined us.

Do you have other options when it comes to clinics? Even if you have to travel, I think it is worth it to get your daughter to a different clinic. At least get a second opinion on this situation. Losing that much lung function is a huge red flag. Something is definitely wrong.

If you don't have a good relationship with your doctor, it is very difficult for your daughter to get the best possible care.

Let us know how it goes.

Stacey

 

[JORDYSMOM]

Teresa,

Welcome. I'm glad you joined us.

Do you have other options when it comes to clinics? Even if you have to travel, I think it is worth it to get your daughter to a different clinic. At least get a second opinion on this situation. Losing that much lung function is a huge red flag. Something is definitely wrong.

If you don't have a good relationship with your doctor, it is very difficult for your daughter to get the best possible care.

Let us know how it goes.

Stacey

 

[JORDYSMOM]

Teresa,

Welcome. I'm glad you joined us.

Do you have other options when it comes to clinics? Even if you have to travel, I think it is worth it to get your daughter to a different clinic. At least get a second opinion on this situation. Losing that much lung function is a huge red flag. Something is definitely wrong.

If you don't have a good relationship with your doctor, it is very difficult for your daughter to get the best possible care.

Let us know how it goes.

Stacey

 

[JORDYSMOM]

Teresa,

Welcome. I'm glad you joined us.

Do you have other options when it comes to clinics? Even if you have to travel, I think it is worth it to get your daughter to a different clinic. At least get a second opinion on this situation. Losing that much lung function is a huge red flag. Something is definitely wrong.

If you don't have a good relationship with your doctor, it is very difficult for your daughter to get the best possible care.

Let us know how it goes.

Stacey

 

[JORDYSMOM]

Teresa,
<br />
<br />Welcome. I'm glad you joined us.
<br />
<br />Do you have other options when it comes to clinics? Even if you have to travel, I think it is worth it to get your daughter to a different clinic. At least get a second opinion on this situation. Losing that much lung function is a huge red flag. Something is definitely wrong.
<br />
<br />If you don't have a good relationship with your doctor, it is very difficult for your daughter to get the best possible care.
<br />
<br />Let us know how it goes.
<br />
<br />Stacey

 

[alluneedislove]

Sorry to hear about all of this. I hope they can figure something out.

The only thing i can help with is the mold & Fungus thing. I have fungus in my lungs and am on itraconazole before going on this i was miserable coughing all the time feeling really warm and run down. My docs said it takes awhile for the meds to actually start working. I have been on it now for 2 months and have def. noticed a difference. Im so sorry that your doc isnt helping. another thing you may want to check out is candida an overgrowth of yeast which makes crazy things happen in your body. I have just started looking into this.

 

[alluneedislove]

Sorry to hear about all of this. I hope they can figure something out.

The only thing i can help with is the mold & Fungus thing. I have fungus in my lungs and am on itraconazole before going on this i was miserable coughing all the time feeling really warm and run down. My docs said it takes awhile for the meds to actually start working. I have been on it now for 2 months and have def. noticed a difference. Im so sorry that your doc isnt helping. another thing you may want to check out is candida an overgrowth of yeast which makes crazy things happen in your body. I have just started looking into this.

 

[alluneedislove]

Sorry to hear about all of this. I hope they can figure something out.

The only thing i can help with is the mold & Fungus thing. I have fungus in my lungs and am on itraconazole before going on this i was miserable coughing all the time feeling really warm and run down. My docs said it takes awhile for the meds to actually start working. I have been on it now for 2 months and have def. noticed a difference. Im so sorry that your doc isnt helping. another thing you may want to check out is candida an overgrowth of yeast which makes crazy things happen in your body. I have just started looking into this.

 

[alluneedislove]

Sorry to hear about all of this. I hope they can figure something out.

The only thing i can help with is the mold & Fungus thing. I have fungus in my lungs and am on itraconazole before going on this i was miserable coughing all the time feeling really warm and run down. My docs said it takes awhile for the meds to actually start working. I have been on it now for 2 months and have def. noticed a difference. Im so sorry that your doc isnt helping. another thing you may want to check out is candida an overgrowth of yeast which makes crazy things happen in your body. I have just started looking into this.

 

[alluneedislove]

Sorry to hear about all of this. I hope they can figure something out.
<br />
<br />The only thing i can help with is the mold & Fungus thing. I have fungus in my lungs and am on itraconazole before going on this i was miserable coughing all the time feeling really warm and run down. My docs said it takes awhile for the meds to actually start working. I have been on it now for 2 months and have def. noticed a difference. Im so sorry that your doc isnt helping. another thing you may want to check out is candida an overgrowth of yeast which makes crazy things happen in your body. I have just started looking into this.

 

[tacos99]

Stacey and Teri, Thanks for the replies. I don't have a lot of options with clinics. There are some within 3-4 hours of us but they are not considered to be as good as ours and our insurance may not pay. This is definitely something I'm considering even if I have to pay out of pocket.

Shelby does have yeast and has been on a low dose vfend for 2 months. I have also filled her with yogurt til she's sick of it. Apparently this is not helping. My only reason to hope is he is bringing in the Infectious Disease docs to decide on course of treatment. We were told yesterday it could take 3-5 months for treatment to work. Teri, are your pfts coming up or were they affected?

 

[tacos99]

Stacey and Teri, Thanks for the replies. I don't have a lot of options with clinics. There are some within 3-4 hours of us but they are not considered to be as good as ours and our insurance may not pay. This is definitely something I'm considering even if I have to pay out of pocket.

Shelby does have yeast and has been on a low dose vfend for 2 months. I have also filled her with yogurt til she's sick of it. Apparently this is not helping. My only reason to hope is he is bringing in the Infectious Disease docs to decide on course of treatment. We were told yesterday it could take 3-5 months for treatment to work. Teri, are your pfts coming up or were they affected?

 

[tacos99]

Stacey and Teri, Thanks for the replies. I don't have a lot of options with clinics. There are some within 3-4 hours of us but they are not considered to be as good as ours and our insurance may not pay. This is definitely something I'm considering even if I have to pay out of pocket.

Shelby does have yeast and has been on a low dose vfend for 2 months. I have also filled her with yogurt til she's sick of it. Apparently this is not helping. My only reason to hope is he is bringing in the Infectious Disease docs to decide on course of treatment. We were told yesterday it could take 3-5 months for treatment to work. Teri, are your pfts coming up or were they affected?

 

[tacos99]

Stacey and Teri, Thanks for the replies. I don't have a lot of options with clinics. There are some within 3-4 hours of us but they are not considered to be as good as ours and our insurance may not pay. This is definitely something I'm considering even if I have to pay out of pocket.

Shelby does have yeast and has been on a low dose vfend for 2 months. I have also filled her with yogurt til she's sick of it. Apparently this is not helping. My only reason to hope is he is bringing in the Infectious Disease docs to decide on course of treatment. We were told yesterday it could take 3-5 months for treatment to work. Teri, are your pfts coming up or were they affected?

 

[tacos99]

Stacey and Teri, Thanks for the replies. I don't have a lot of options with clinics. There are some within 3-4 hours of us but they are not considered to be as good as ours and our insurance may not pay. This is definitely something I'm considering even if I have to pay out of pocket.
<br />
<br />Shelby does have yeast and has been on a low dose vfend for 2 months. I have also filled her with yogurt til she's sick of it. Apparently this is not helping. My only reason to hope is he is bringing in the Infectious Disease docs to decide on course of treatment. We were told yesterday it could take 3-5 months for treatment to work. Teri, are your pfts coming up or were they affected?