WHAT WOULD YOU DO~help!

[Mom2Brinly]

Hi~<div>My 7 year old has had a rough year. We cultured PS last Aug. and was admitted to the hospital to "be aggressive" It seemed to have gone away,  but she still coughed. We did Cipro/Tobi and then was admitted AGAIN last Nov. She had a bronch and found ALOT of mucus of course NO PS but aspergillous (sp) fungus. She never grew the fungus in a culture and at the time our cf doc said we did not need to treat it? Since then she has coughed on and off. She cultured PS AGAIN this last May we did Cipro/Tobi for 2 weeks and then we switched her to Cayston for 28 days. Which did nothing! Her cough remained the same? Her fev has declined a little not much and has not gained and lost weight a little agian not much?? Back to cf clinic several times and now on Tobi again?? Her last culture showed normal flora but wanted to be aggressive that is why they put her on Tobi.   Now they are talking about re admitting her into the hospital? If there is no change in her coughing- which we are half way through Tobi and she seems to be coughing more?? I am so worried and confused what this is?? When she coughs there usually is an issue- she does not have a baseline cough? yet or is this it?? Ughhhh</div><div>Should we admit her? What would you do??</div><div><br></div><div>Thanks any thoughts are appreciated!</div><div>Blythe</div><div>mom to 3 girls</div><div>1- with cf</div><div>2 with no</div>

 

[Mom2Brinly]

Hi~My 7 year old has had a rough year. We cultured PS last Aug. and was admitted to the hospital to "beaggressive" It seemed to have gone away, but she still coughed. We did Cipro/Tobi and then was admitted AGAIN last Nov. She had a bronch and found ALOT of mucus of course NO PS but aspergillous (sp) fungus. She never grew the fungus in a culture and at the time our cf doc said we did not need to treat it? Since then she has coughed on and off. She cultured PS AGAIN this last May we did Cipro/Tobi for 2 weeks and then we switched her to Cayston for 28 days. Which did nothing! Her cough remained the same? Her fev has declined a little not much and has not gained and lost weight a little agian not much?? Back to cf clinic several times and now on Tobi again?? Her last culture showed normal flora but wanted to be aggressive that is why they put her on Tobi. Now they are talking about re admitting her into the hospital? If there is no change in her coughing- which we are half way through Tobi and she seems to be coughing more?? I am so worried and confused what this is?? When she coughs there usually is an issue- she does not have a baseline cough? yet or is this it?? UghhhhShould we admit her? What would you do??<br>Thanks any thoughts areappreciated!Blythemom to 3 girls1- with cf2 with no

 

[Mom2Brinly]

Hi~My 7 year old has had a rough year. We cultured PS last Aug. and was admitted to the hospital to "beaggressive" It seemed to have gone away, but she still coughed. We did Cipro/Tobi and then was admitted AGAIN last Nov. She had a bronch and found ALOT of mucus of course NO PS but aspergillous (sp) fungus. She never grew the fungus in a culture and at the time our cf doc said we did not need to treat it? Since then she has coughed on and off. She cultured PS AGAIN this last May we did Cipro/Tobi for 2 weeks and then we switched her to Cayston for 28 days. Which did nothing! Her cough remained the same? Her fev has declined a little not much and has not gained and lost weight a little agian not much?? Back to cf clinic several times and now on Tobi again?? Her last culture showed normal flora but wanted to be aggressive that is why they put her on Tobi. Now they are talking about re admitting her into the hospital? If there is no change in her coughing- which we are half way through Tobi and she seems to be coughing more?? I am so worried and confused what this is?? When she coughs there usually is an issue- she does not have a baseline cough? yet or is this it?? UghhhhShould we admit her? What would you do??<br>Thanks any thoughts areappreciated!Blythemom to 3 girls1- with cf2 with no

 

[Printer]

WOW!!! This is very simple. If you truly believe that she will get better without any treatment, (and that you know more about CF than your Docror does) by all means keep her at home. If you believe that she has a serious, life threatening disease that you are unable to treat, listen to your Doctor.

 

[Printer]

WOW!!! This is very simple. If you truly believe that she will get better without any treatment, (and that you know more about CF than your Docror does) by all means keep her at home. If you believe that she has a serious, life threatening disease that you are unable to treat, listen to your Doctor.

 

[Printer]

WOW!!! This is very simple. If you truly believe that she will get better without any treatment, (and that you know more about CF than your Docror does) by all means keep her at home. If you believe that she has a serious, life threatening disease that you are unable to treat, listen to your Doctor.
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<br />
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[Rebjane]

Mom2Brinly,

I would be concerned about the coughing as well. I think it's great your CF doctors are taking your daughter's symptoms seriously and aggressively. It is your job as a mom to ask questions; we can not just blindly treat our children without asking questions and understanding the treatment. So, If they are talking about admitting her, what would they do?

Would they do a bronchoscopy to see if the pseudomonas(assuming that is what PS stands for<img src="i/expressions/face-icon-small-wink.gif" border="0">) Would they do IV's? A CXR? Do they think it could be inflammation? Could it be from the fungus?

7 years old is young for a baseline cough; in my opinion. I just reread; that your daughter did have a bronch in August; was that last year?

ANyway, I know I may not be right out answering your question; but if this was my daughter and her CF doc(who I trust) wanted to admit her I would admit her. I would also worry, because that's what we mom's do and I would ask questions and write down my questions when I talk to the doctor so I don;t forget.

Hope you get some answers real soon and that your daughter feels better.

 

[Rebjane]

Mom2Brinly,

I would be concerned about the coughing as well. I think it's great your CF doctors are taking your daughter's symptoms seriously and aggressively. It is your job as a mom to ask questions; we can not just blindly treat our children without asking questions and understanding the treatment. So, If they are talking about admitting her, what would they do?

Would they do a bronchoscopy to see if the pseudomonas(assuming that is what PS stands for<img src="i/expressions/face-icon-small-wink.gif" border="0">) Would they do IV's? A CXR? Do they think it could be inflammation? Could it be from the fungus?

7 years old is young for a baseline cough; in my opinion. I just reread; that your daughter did have a bronch in August; was that last year?

ANyway, I know I may not be right out answering your question; but if this was my daughter and her CF doc(who I trust) wanted to admit her I would admit her. I would also worry, because that's what we mom's do and I would ask questions and write down my questions when I talk to the doctor so I don;t forget.

Hope you get some answers real soon and that your daughter feels better.

 

[Rebjane]

Mom2Brinly,
<br />
<br />I would be concerned about the coughing as well. I think it's great your CF doctors are taking your daughter's symptoms seriously and aggressively. It is your job as a mom to ask questions; we can not just blindly treat our children without asking questions and understanding the treatment. So, If they are talking about admitting her, what would they do?
<br />
<br />Would they do a bronchoscopy to see if the pseudomonas(assuming that is what PS stands for<img src="i/expressions/face-icon-small-wink.gif" border="0">) Would they do IV's? A CXR? Do they think it could be inflammation? Could it be from the fungus?
<br />
<br /> 7 years old is young for a baseline cough; in my opinion. I just reread; that your daughter did have a bronch in August; was that last year?
<br />
<br />ANyway, I know I may not be right out answering your question; but if this was my daughter and her CF doc(who I trust) wanted to admit her I would admit her. I would also worry, because that's what we mom's do and I would ask questions and write down my questions when I talk to the doctor so I don;t forget.
<br />
<br />Hope you get some answers real soon and that your daughter feels better.
<br />

 

[Ratatosk]

DS is 8 with a baseline of no cough. When he coughs, it usually means something is going on and what has amazed me in the past when he developed a cough, he was already on Tobi and an other antibiotic or two, yet still had something going on. I believe the last time it happened he was put on Cipro, but if the doctor would've said for us to admit, do IVs, we would've done so.

 

[Ratatosk]

DS is 8 with a baseline of no cough. When he coughs, it usually means something is going on and what has amazed me in the past when he developed a cough, he was already on Tobi and an other antibiotic or two, yet still had something going on. I believe the last time it happened he was put on Cipro, but if the doctor would've said for us to admit, do IVs, we would've done so.

 

[Ratatosk]

DS is 8 with a baseline of no cough. When he coughs, it usually means something is going on and what has amazed me in the past when he developed a cough, he was already on Tobi and an other antibiotic or two, yet still had something going on. I believe the last time it happened he was put on Cipro, but if the doctor would've said for us to admit, do IVs, we would've done so.

 

[JORDYSMOM]

<P>Hi Blythe.  I'm thinking your daughter may be having trouble with the aspergillus.  Maybe it's grown to the point that her body is now responding to it, or she's allergic to it.  A lot of clinics don't treat it if it's not causing any problems, but it can really cause grief if it gets out of control.  I'd ask them to get her IGE levels, and see if that could be what's happening.</P>
<P> </P>
<P>Stacey</P>

 

[JORDYSMOM]

<P>Hi Blythe. I'm thinking your daughter may be having trouble with the aspergillus. Maybe it's grown to the point that her body is now responding to it, or she's allergic to it. A lot of clinics don't treat it if it's not causing any problems, but it can really cause grief if it gets out of control. I'd ask them to get her IGE levels, and see if that could be what's happening.</P>
<P></P>
<P>Stacey</P>

 

[JORDYSMOM]

<P><BR>Hi Blythe. I'm thinking your daughter may be having trouble with the aspergillus. Maybe it's grown to the point that her body is now responding to it, or she's allergic to it. A lot of clinics don't treat it if it's not causing any problems, but it can really cause grief if it gets out of control. I'd ask them to get her IGE levels, and see if that could be what's happening.</P>
<P></P>
<P>Stacey</P>

 

[TonyaH]

<P>I agree that I would pursue the aspergillus in his previous culture.  Any CFer can culture aspergillus.  Most do not have a problem with it.  However, if your son has an allergy to the aspergillus that can be a problem. </P>
<P> </P>
<P>Aspergillus itself is not destructive to lung tissue.  However, an allergy to it creates inflammation in the lungs, trapping not only the fungus, but other bugs like psuedomonas to get trapped in the small airways.  Aspergillus has been a problem for my son.  Once we had his IgE test done and realized the aspergillus was the cause of cough he was treated with maintenance prednisone and bursts of prednisone when he had an exacerbation.  </P>
<P> </P>
<P>The way we feel about Andrew's ABPA is that is just causes one more hickup in his treatment.  It has to be controlled or else it can cause a whole list of other problems within the lungs.  </P>
<P> </P>
<P>Oh, and for the record, I think you are a good mom for questioning the treatments, the hospitalizations, and the meds.  As moms, we always end up following our doctor's advice (provided we are comfortable in knowing we have a good team set in place.)  But that doesn't keep us from being the advocate...asking the questions that need to be asked and playing devil's advocate when it comes to treatment planning.  It keeps us in the loop, and knowledgible about out children's disease, and I also think it makes us a stronger part of the team of care providers we have chosen...because you ARE part of the team.  Never feel guilty for asking difficult questions! </P>
<P> </P>
<P>Should you end up diagnosing ABPA, feel free to contact me with any questions you might have.</P>

 

[TonyaH]

<P>I agree that I would pursue the aspergillus in his previous culture. Any CFer can culture aspergillus. Most do not have a problem with it. However, if your son has an allergy to the aspergillus that can be a problem. </P>
<P></P>
<P>Aspergillus itself is not destructive to lung tissue. However, an allergy to it creates inflammation in the lungs, trapping not only the fungus, but other bugs like psuedomonas to get trapped in the small airways. Aspergillus has been a problem for my son. Once we had his IgE test done and realized the aspergillus was the cause of cough he was treated with maintenance prednisone and bursts of prednisone when he had an exacerbation. </P>
<P></P>
<P>The way we feel about Andrew's ABPA is that is just causes one more hickup in his treatment. It has to be controlled or else it can cause a whole list of other problems within the lungs. </P>
<P></P>
<P>Oh, and for the record, I think you are a good mom for questioning the treatments, the hospitalizations, and the meds. As moms, we always end up following our doctor's advice (provided we are comfortable in knowing we have a good team set in place.) But that doesn't keep us from being the advocate...asking the questions that need to be asked and playing devil's advocate when it comes to treatment planning. It keeps us in the loop, and knowledgible about out children's disease, and I also think it makes us a stronger part of the team of care providers we have chosen...because you ARE part of the team. Never feel guilty for asking difficult questions!</P>
<P></P>
<P>Should you end up diagnosing ABPA, feel free to contact me with any questions you might have.</P>

 

[TonyaH]

<P>I agree that I would pursue the aspergillus in his previous culture. Any CFer can culture aspergillus. Most do not have a problem with it. However, if your son has an allergy to the aspergillus that can be a problem. </P>
<P></P>
<P>Aspergillus itself is not destructive to lung tissue. However, an allergy to it creates inflammation in the lungs, trapping not only the fungus, but other bugs like psuedomonas to get trapped in the small airways. Aspergillus has been a problem for my son. Once we had his IgE test done and realized the aspergillus was the cause of cough he was treated with maintenance prednisone and bursts of prednisone when he had an exacerbation. </P>
<P></P>
<P>The way we feel about Andrew's ABPA is that is just causes one more hickup in his treatment. It has to be controlled or else it can cause a whole list of other problems within the lungs. </P>
<P></P>
<P>Oh, and for the record, I think you are a good mom for questioning the treatments, the hospitalizations, and the meds. As moms, we always end up following our doctor's advice (provided we are comfortable in knowing we have a good team set in place.) But that doesn't keep us from being the advocate...asking the questions that need to be asked and playing devil's advocate when it comes to treatment planning. It keeps us in the loop, and knowledgible about out children's disease, and I also think it makes us a stronger part of the team of care providers we have chosen...because you ARE part of the team. Never feel guilty for asking difficult questions!</P>
<P></P>
<P>Should you end up diagnosing ABPA, feel free to contact me with any questions you might have.<BR></P>

 

[TonyaH]

I do apologize...after reading your post a second time I realized you have a daughter, not a son.  Sorry!!

 

[TonyaH]

I do apologize...after reading your post a second time I realized you have a daughter, not a son. Sorry!!