Pseudomonas Eradication in Newly Diagnosed Patient

[concerneddad]

My almost 17 year old daughter was diagnosed with CF in late February of this year and cultured pseudomonas. A little history, prior to her diagnosis, she always had an off and on cough and was a little sicker than her friends and siblings, but nothing too out of the ordinary. Nonetheless, she had a chest xray and pulmonary function test at age 11.5. Her PFT was then in the low end of the normal range and her xray was clear. She was given an inhaler to deal with the cough (she was being treated as if it was either asthma or allergies). Last summer, her cough got worse and she was prescibed a zpac. This past Christmas, the cough was back and a lot worse. That was when we embarked on our journey that led to the CF diagnosis.
Once diagnosed, my daughter was immediately prescribed TOBI (on one month off another) and a two week course of Cipro in addition to inhalers and and hypersal. After only one month of treatment, my daughter's cough basically went away and she felt much better (and her FEV1 went from 74% to 92%). We have been encouraged. Unfortunately, we just found out today that she still cultured pseudomonas after the TOBI/Cipro treatment. I have read that it is crucial to try to eradicate the pseudomonas as quickly as possible upon the first culture. Our doctor today told us that all we needed to do at this point was start up the second round of TOBI (at the end of this week) and see where it goes from here. The doctor said that it is impossible to know how long my daughter had pseudomonas and it may not be possible to eradicate because of this.
My questions (after my long winded story) are: (i) in addition to the TOBI, should another round of Cipro be tried? (ii) if that does not work, should we try for IVs (in about a month once we are done with the second round of TOBI)? (iii) does it usually take more than one round of TOBI to eradicate? (iv) is there anything else we should be doing or drug considering?
Thanks so much.

 

[concerneddad]

My almost 17 year old daughter was diagnosed with CF in late February of this year and cultured pseudomonas. A little history, prior to her diagnosis, she always had an off and on cough and was a little sicker than her friends and siblings, but nothing too out of the ordinary. Nonetheless, she had a chest xray and pulmonary function test at age 11.5. Her PFT was then in the low end of the normal range and her xray was clear. She was given an inhaler to deal with the cough (she was being treated as if it was either asthma or allergies). Last summer, her cough got worse and she was prescibed a zpac. This past Christmas, the cough was back and a lot worse. That was when we embarked on our journey that led to the CF diagnosis.
Once diagnosed, my daughter was immediately prescribed TOBI (on one month off another) and a two week course of Cipro in addition to inhalers and and hypersal. After only one month of treatment, my daughter's cough basically went away and she felt much better (and her FEV1 went from 74% to 92%). We have been encouraged. Unfortunately, we just found out today that she still cultured pseudomonas after the TOBI/Cipro treatment. I have read that it is crucial to try to eradicate the pseudomonas as quickly as possible upon the first culture. Our doctor today told us that all we needed to do at this point was start up the second round of TOBI (at the end of this week) and see where it goes from here. The doctor said that it is impossible to know how long my daughter had pseudomonas and it may not be possible to eradicate because of this.
My questions (after my long winded story) are: (i) in addition to the TOBI, should another round of Cipro be tried? (ii) if that does not work, should we try for IVs (in about a month once we are done with the second round of TOBI)? (iii) does it usually take more than one round of TOBI to eradicate? (iv) is there anything else we should be doing or drug considering?
Thanks so much.

 

[Anomie]

Your doctor's right. You're daughter has probably had the pseudo for a while and therefore will not easily be able to get rid of it. If you give her too many antibiotics the pseudo may become resistant and harder to treat. Thats just my opinion though and some people may suggest 3 months of continuous TOBI to eradicate it. Try asking what the original count was and if it was in the millions ask them if that suggests she's had the pseudo for a while.

 

[Anomie]

Your doctor's right. You're daughter has probably had the pseudo for a while and therefore will not easily be able to get rid of it. If you give her too many antibiotics the pseudo may become resistant and harder to treat. Thats just my opinion though and some people may suggest 3 months of continuous TOBI to eradicate it. Try asking what the original count was and if it was in the millions ask them if that suggests she's had the pseudo for a while.

 

[Incomudrox]

If the PA is mucoid (most likely) your chance of killing it are slim to none, there are methods however. For some IDEAS (I guarantee nothing) you can look here:

http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=615572&enterthread=y

 

[Incomudrox]

If the PA is mucoid (most likely) your chance of killing it are slim to none, there are methods however. For some IDEAS (I guarantee nothing) you can look here:

http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=615572&enterthread=y

 

[TonyaH]

Hi there!
First of all, let me congratulate you on your determination to find a diagnosis for your daughter. I am sorry it ended up being CF, but at least now you have a direction to travel while treating her.
I have a fourteen year old son and we have been dealing with pseudomonas since he was 9 months old. I would agree with the others that your daughter has probably been growing it for a long time. However, I guess I disagree with the idea of treating with TOBI only...and this is why...
Every other month TOBI is a maintenance medication used to supress known pseudomonas infections or to keep them from recurring. TOBI and Cipro are a great combination of meds to treat pseudo. In fact, many studies have shown that combination to be just as affective as many cocktails of IV meds. That is..IF your daughter is not resistant to either medication. Has your doctor talked with you about sensitivity and resistance to meds yet? Whenever there is a known infection it is ideal to know what meds that bacteria is sensitive to at that time, as bacteria can mutate and what did or didn't work for the last infection could or couldn't work for the new one.
That being said, TOBI and Cipro are great. They worked well for Andrew in the beginning. Now we have to usually go straight to IVs for affective treatment during anexacerbation. Otherwisehe remains on his TOBI cycle. We can do this with Andrew becausehe is an established patient. His CF team knows his baseline and can gauge treatmenton how far from baseline he is.
But your daughter does notyethave a baseline. Iknow you said her fev1 jumped into the 90s with albuterol,hts,TOBI and cipro. That is fantastic! But can itgo any higher? Is your clinic accepting 90s as her baseline (her best when she is feeling good) based on a round of TOBI/Cipro? I would say, this being her first time treatingpseudomonas, thatthey should throw theheavy hitters atit.What if, after you finish a stronger round of antibiotics, they realize theyHAVE eradicated the infection? What if her fev1 jumps into the 100s and you realize that is her current potential?
I wish you luck in treating yourdaughter. You sound like you are asking all the right questions, so you will do great!

 

[TonyaH]

Hi there!
First of all, let me congratulate you on your determination to find a diagnosis for your daughter. I am sorry it ended up being CF, but at least now you have a direction to travel while treating her.
I have a fourteen year old son and we have been dealing with pseudomonas since he was 9 months old. I would agree with the others that your daughter has probably been growing it for a long time. However, I guess I disagree with the idea of treating with TOBI only...and this is why...
Every other month TOBI is a maintenance medication used to supress known pseudomonas infections or to keep them from recurring. TOBI and Cipro are a great combination of meds to treat pseudo. In fact, many studies have shown that combination to be just as affective as many cocktails of IV meds. That is..IF your daughter is not resistant to either medication. Has your doctor talked with you about sensitivity and resistance to meds yet? Whenever there is a known infection it is ideal to know what meds that bacteria is sensitive to at that time, as bacteria can mutate and what did or didn't work for the last infection could or couldn't work for the new one.
That being said, TOBI and Cipro are great. They worked well for Andrew in the beginning. Now we have to usually go straight to IVs for affective treatment during anexacerbation. Otherwisehe remains on his TOBI cycle. We can do this with Andrew becausehe is an established patient. His CF team knows his baseline and can gauge treatmenton how far from baseline he is.
But your daughter does notyethave a baseline. Iknow you said her fev1 jumped into the 90s with albuterol,hts,TOBI and cipro. That is fantastic! But can itgo any higher? Is your clinic accepting 90s as her baseline (her best when she is feeling good) based on a round of TOBI/Cipro? I would say, this being her first time treatingpseudomonas, thatthey should throw theheavy hitters atit.What if, after you finish a stronger round of antibiotics, they realize theyHAVE eradicated the infection? What if her fev1 jumps into the 100s and you realize that is her current potential?
I wish you luck in treating yourdaughter. You sound like you are asking all the right questions, so you will do great!

 

[concerneddad]

Thanks for all of the responses thus far. At this point, I did get the doctor to prescribe another round of Cipro along with the TOBI (on the basis that the Cipro really cant hurt and she can tolerate it pretty well based on her first round). I am hopeful that it will work. When my daughter did her first round of TOBI, we were no experts at all with nebulized anything so I think that while the TOBI helped, she did not get the full benefit (she had trouble with the nebulizer at first). So, with a little more experience, some more TOBI and some Cipro, we will see what happens. It's our feeling that we need to try everything reasonably possible now to try to eradicate the PA before we accept it as a new unwelcome member of the family.

This is all very ironic in that she is feeling better now than she has in a long time, yet she has PA.

Thanks again.

 

[concerneddad]

Thanks for all of the responses thus far. At this point, I did get the doctor to prescribe another round of Cipro along with the TOBI (on the basis that the Cipro really cant hurt and she can tolerate it pretty well based on her first round). I am hopeful that it will work. When my daughter did her first round of TOBI, we were no experts at all with nebulized anything so I think that while the TOBI helped, she did not get the full benefit (she had trouble with the nebulizer at first). So, with a little more experience, some more TOBI and some Cipro, we will see what happens. It's our feeling that we need to try everything reasonably possible now to try to eradicate the PA before we accept it as a new unwelcome member of the family.

This is all very ironic in that she is feeling better now than she has in a long time, yet she has PA.

Thanks again.

 

[Printer]

You might ask the Doctor if he/she thinks that in the "off TOBI" months 7% Sailine might be beneficial. She will feel better than she has, for a very long time now that she has been dx and is getting treatment.

Bill

 

[Printer]

You might ask the Doctor if he/she thinks that in the "off TOBI" months 7% Sailine might be beneficial. She will feel better than she has, for a very long time now that she has been dx and is getting treatment.

Bill

 

[Haylih]

Have you heard of Cayston? I alternate every 28 days between TOBI and Cayston for my pseudomonas and it works great! You should definitely ask your doctors about it.

 

[Haylih]

Have you heard of Cayston? I alternate every 28 days between TOBI and Cayston for my pseudomonas and it works great! You should definitely ask your doctors about it.

 

[concerneddad]

Thanks all for the additional responses.

My daughter alternates between the 3% and 7% saline, but prefers the 3% for now since it apparently is easier to tolerate (she has only been doing it for about 7 weeks total). I think (hope) she will work her way up to 7%. I know of Cayston, but is has not yet been prescribed (apparently TOBI is the preferred initial medicine) and I understand that there is currently a "shortage" so that temporarily it is not being prescribed for patients who are not already on it. However, I spoke with a representative of the manufacturer at a CF seminar last weekend and he said that things should be back to "normal" relatively soon (I asked if that meant six months and he said sooner than that).

Another question: part of my daughter's twice daily breathing treatment involved using an acapella and then trying to cough up mucus. She was far more productive at the start of treatment than she is now, which I guess is a good thing. My question is, do you think it makes sense to push for a vest? I am just curious to see what the vest would yield.

Thanks again.

 

[concerneddad]

Thanks all for the additional responses.

My daughter alternates between the 3% and 7% saline, but prefers the 3% for now since it apparently is easier to tolerate (she has only been doing it for about 7 weeks total). I think (hope) she will work her way up to 7%. I know of Cayston, but is has not yet been prescribed (apparently TOBI is the preferred initial medicine) and I understand that there is currently a "shortage" so that temporarily it is not being prescribed for patients who are not already on it. However, I spoke with a representative of the manufacturer at a CF seminar last weekend and he said that things should be back to "normal" relatively soon (I asked if that meant six months and he said sooner than that).

Another question: part of my daughter's twice daily breathing treatment involved using an acapella and then trying to cough up mucus. She was far more productive at the start of treatment than she is now, which I guess is a good thing. My question is, do you think it makes sense to push for a vest? I am just curious to see what the vest would yield.

Thanks again.

 

[age]

we used nebulized glutathione for 3 months after all elese failed it has been gone for about 4 years now. It is hard to find a compounding pharmacy to make it. Good Luck.

 

[age]

we used nebulized glutathione for 3 months after all elese failed it has been gone for about 4 years now. It is hard to find a compounding pharmacy to make it. Good Luck.

 

[JennyCoulon]

I would maybe try the TOBI another time and then yes I would do the IV's if it still cultures. I would try all that you can do try and get it gone and to stay gone with this first culture. She may have had it for a while and never cultured it but my oldest who is 12.5 has never cultured pseudomonas. Good luck

 

[JennyCoulon]

I would maybe try the TOBI another time and then yes I would do the IV's if it still cultures. I would try all that you can do try and get it gone and to stay gone with this first culture. She may have had it for a while and never cultured it but my oldest who is 12.5 has never cultured pseudomonas. Good luck