WHAT WOULD YOU DO~help!

[TonyaH]

<P>Hi Blythe,</P>
<P>I am a bit confused. I thought you said earlier that her IgE levels were high and you had been told she had an allergy to the aspergillus. I think what you may have been told was that her aspergillus count was high. The lab classifies the infection by a count of how many bacteria or mold are found in a sample every time you have a culture run. Just because her count was high does not mean she is allergic. An IgE test is a test that detects an allergic response. So, you can have a high aspergillus count with a low IgE score, and you can also have a low aspergillus count with a high IgE score, depending on the severity of the allergic response. Am I making any sense?</P>
<P></P>
<P>I would have your doctor clarify things for you. If the IgE level was within normal range, there may be no need to treat the aspergillus. </P>
<P></P>
<P>I am all for mother's instinct, though.Justfor peace of mind,the next time your daughter has a positive culture for aspergillus I might suggest requesting another IgE test.</P>
<P></P>
<P>I hope she starts to improve very soon, and that you can get home quickly!</P>

 

[TonyaH]

<P>Hi Blythe,</P>
<P>I am a bit confused. I thought you said earlier that her IgE levels were high and you had been told she had an allergy to the aspergillus. I think what you may have been told was that her aspergillus count was high. The lab classifies the infection by a count of how many bacteria or mold are found in a sample every time you have a culture run. Just because her count was high does not mean she is allergic. An IgE test is a test that detects an allergic response. So, you can have a high aspergillus count with a low IgE score, and you can also have a low aspergillus count with a high IgE score, depending on the severity of the allergic response. Am I making any sense?</P>
<P></P>
<P>I would have your doctor clarify things for you. If the IgE level was within normal range, there may be no need to treat the aspergillus. </P>
<P></P>
<P>I am all for mother's instinct, though.Justfor peace of mind,the next time your daughter has a positive culture for aspergillus I might suggest requesting another IgE test.</P>
<P></P>
<P>I hope she starts to improve very soon, and that you can get home quickly!<BR></P>

 

[Mom2Brinly]

TonyaH- this is the confusing part... They DID test her IgE levels and they are "low" within normal range. BUT they also tested to see what molds she was allergic to and she IS allergic to the aspergillus!! BUT because her Ige levels show NO inflammation they are NOT treating it EVEN THOU SHE IS ALLERGIC TO ASPERGILLUS!???! She has never "grown aspergillus from a throat culture" We found it thru a bronchosopy last Feb. She has been admitted 3 times this year and is in the hospital now. The doctors just told us that she has permanent lung damage (bronchiectasis) in her lower right lobe and this cough maybe her baseline! I am so depressed i can't even think straight. They want to do another bronch but i am worried that this is what damaged her lungs last feb in the first place?? She is too young to have this damage...she is only 7yo. Do you think i should do the bronch does it clear the crap out or will it damage her more??? I am also posting on the adult forum for their input too!?!?
Blythe

 

[Mom2Brinly]

TonyaH- this is the confusing part... They DID test her IgE levels and they are "low" within normal range. BUT they also tested to see what molds she was allergic to and she IS allergic to the aspergillus!! BUT because her Ige levels show NO inflammation they are NOT treating it EVEN THOU SHE IS ALLERGIC TO ASPERGILLUS!???! She has never "grown aspergillus from a throat culture" We found it thru a bronchosopy last Feb. She has been admitted 3 times this year and is in the hospital now. The doctors just told us that she has permanent lung damage (bronchiectasis) in her lower right lobe and this cough maybe her baseline! I am so depressed i can't even think straight. They want to do another bronch but i am worried that this is what damaged her lungs last feb in the first place?? She is too young to have this damage...she is only 7yo. Do you think i should do the bronch does it clear the crap out or will it damage her more??? I am also posting on the adult forum for their input too!?!?
Blythe

 

[Mom2Brinly]

TonyaH- this is the confusing part... They DID test her IgE levels and they are "low" within normal range. BUT they also tested to see what molds she was allergic to and she IS allergic to the aspergillus!! BUT because her Ige levels show NO inflammation they are NOT treating it EVEN THOU SHE IS ALLERGIC TO ASPERGILLUS!???! She has never "grown aspergillus from a throat culture" We found it thru a bronchosopy last Feb. She has been admitted 3 times this year and is in the hospital now. The doctors just told us that she has permanent lung damage (bronchiectasis) in her lower right lobe and this cough maybe her baseline! I am so depressed i can't even think straight. They want to do another bronch but i am worried that this is what damaged her lungs last feb in the first place?? She is too young to have this damage...she is only 7yo. Do you think i should do the bronch does it clear the crap out or will it damage her more??? I am also posting on the adult forum for their input too!?!?
<br />Blythe

 

[Printer]

If I were you, I would take her to a different CF Center. You will never be happy with this Center unless and until you get a confornation of her care from another expert.

She may be "only 7" but she has CF and she is plenty old enough for damage this severe.

Bill

 

[Printer]

If I were you, I would take her to a different CF Center. You will never be happy with this Center unless and until you get a confornation of her care from another expert.

She may be "only 7" but she has CF and she is plenty old enough for damage this severe.

Bill

 

[Printer]

If I were you, I would take her to a different CF Center. You will never be happy with this Center unless and until you get a confornation of her care from another expert.
<br />
<br />She may be "only 7" but she has CF and she is plenty old enough for damage this severe.
<br />
<br />Bill