Yesterdays meeting

tammykrumrey · Sep 4, 2008

Again, thanks for all the kind words and prayers. I am so stressed right now! You guys really make my heart feel so good.

Well, the meeting went 'good', if there is such a thing when you are talking about your child having cepacia. My husband did wonderful! I was very proud of him. He even asked a few questions and was not as passive about it all as I kind suspected he would be.

The strain she has is Burkholderia Multivorans. It does show in prelimary reports that it is resistant to all drugs. So, as of now we are just kind of trying out things. I went saying that I wanted her admitted for IV antibiotics. Although I know my husband did not want this unless there was no option. The Dr. said that he was willing to try oral Cipro and Bactrim (Bactrim for her MRSA) and inhaled Tobi. But that if Monday her cough was not better, then he wanted to have her admitted and hoped that he would have more results back as to what to try.

If her cough improves, seh will continue with that course and then he wants her back next Friday for PFTs. If her FEV (she is down about 18 percentage points from Jan to Aug) is not better, then she will be admitted next Friday.

So, I guess we have a few 'deadlines' to meet.

I am not sure how to feel about this all. Would you consider this aggressive treatment? Should I had stood by my guns and insisted on IVs? Kayla is completely against going in for IVs. So, I don't want to force her unless there is no option-that's why I was willing to try the orals/inhaled. Are the chances that she will hospitalized more often now that she is culturing this nasty bug? She has only had one MRSA flare up that required her to be hospitalized-two years ago. And seeing that it is already resistant to everything, will I cause more harm than good when she is not THAT sick right now-just an increase in cough and a bit more sleepy than usual.

Any suggestions? Advice?
Thanks again you guys! I <img src="i/expressions/heart.gif" border="0"> you all and you just cannot imagine how much it helps me to come here to talk to you.

tammykrumrey · Sep 4, 2008

Again, thanks for all the kind words and prayers. I am so stressed right now! You guys really make my heart feel so good.

Well, the meeting went 'good', if there is such a thing when you are talking about your child having cepacia. My husband did wonderful! I was very proud of him. He even asked a few questions and was not as passive about it all as I kind suspected he would be.

The strain she has is Burkholderia Multivorans. It does show in prelimary reports that it is resistant to all drugs. So, as of now we are just kind of trying out things. I went saying that I wanted her admitted for IV antibiotics. Although I know my husband did not want this unless there was no option. The Dr. said that he was willing to try oral Cipro and Bactrim (Bactrim for her MRSA) and inhaled Tobi. But that if Monday her cough was not better, then he wanted to have her admitted and hoped that he would have more results back as to what to try.

If her cough improves, seh will continue with that course and then he wants her back next Friday for PFTs. If her FEV (she is down about 18 percentage points from Jan to Aug) is not better, then she will be admitted next Friday.

So, I guess we have a few 'deadlines' to meet.

I am not sure how to feel about this all. Would you consider this aggressive treatment? Should I had stood by my guns and insisted on IVs? Kayla is completely against going in for IVs. So, I don't want to force her unless there is no option-that's why I was willing to try the orals/inhaled. Are the chances that she will hospitalized more often now that she is culturing this nasty bug? She has only had one MRSA flare up that required her to be hospitalized-two years ago. And seeing that it is already resistant to everything, will I cause more harm than good when she is not THAT sick right now-just an increase in cough and a bit more sleepy than usual.

Any suggestions? Advice?
Thanks again you guys! I <img src="i/expressions/heart.gif" border="0"> you all and you just cannot imagine how much it helps me to come here to talk to you.

tammykrumrey · Sep 4, 2008

Again, thanks for all the kind words and prayers. I am so stressed right now! You guys really make my heart feel so good.

Well, the meeting went 'good', if there is such a thing when you are talking about your child having cepacia. My husband did wonderful! I was very proud of him. He even asked a few questions and was not as passive about it all as I kind suspected he would be.

The strain she has is Burkholderia Multivorans. It does show in prelimary reports that it is resistant to all drugs. So, as of now we are just kind of trying out things. I went saying that I wanted her admitted for IV antibiotics. Although I know my husband did not want this unless there was no option. The Dr. said that he was willing to try oral Cipro and Bactrim (Bactrim for her MRSA) and inhaled Tobi. But that if Monday her cough was not better, then he wanted to have her admitted and hoped that he would have more results back as to what to try.

If her cough improves, seh will continue with that course and then he wants her back next Friday for PFTs. If her FEV (she is down about 18 percentage points from Jan to Aug) is not better, then she will be admitted next Friday.

So, I guess we have a few 'deadlines' to meet.

I am not sure how to feel about this all. Would you consider this aggressive treatment? Should I had stood by my guns and insisted on IVs? Kayla is completely against going in for IVs. So, I don't want to force her unless there is no option-that's why I was willing to try the orals/inhaled. Are the chances that she will hospitalized more often now that she is culturing this nasty bug? She has only had one MRSA flare up that required her to be hospitalized-two years ago. And seeing that it is already resistant to everything, will I cause more harm than good when she is not THAT sick right now-just an increase in cough and a bit more sleepy than usual.

Any suggestions? Advice?
Thanks again you guys! I <img src="i/expressions/heart.gif" border="0"> you all and you just cannot imagine how much it helps me to come here to talk to you.

tammykrumrey · Sep 4, 2008

Again, thanks for all the kind words and prayers. I am so stressed right now! You guys really make my heart feel so good.

Well, the meeting went 'good', if there is such a thing when you are talking about your child having cepacia. My husband did wonderful! I was very proud of him. He even asked a few questions and was not as passive about it all as I kind suspected he would be.

The strain she has is Burkholderia Multivorans. It does show in prelimary reports that it is resistant to all drugs. So, as of now we are just kind of trying out things. I went saying that I wanted her admitted for IV antibiotics. Although I know my husband did not want this unless there was no option. The Dr. said that he was willing to try oral Cipro and Bactrim (Bactrim for her MRSA) and inhaled Tobi. But that if Monday her cough was not better, then he wanted to have her admitted and hoped that he would have more results back as to what to try.

If her cough improves, seh will continue with that course and then he wants her back next Friday for PFTs. If her FEV (she is down about 18 percentage points from Jan to Aug) is not better, then she will be admitted next Friday.

So, I guess we have a few 'deadlines' to meet.

I am not sure how to feel about this all. Would you consider this aggressive treatment? Should I had stood by my guns and insisted on IVs? Kayla is completely against going in for IVs. So, I don't want to force her unless there is no option-that's why I was willing to try the orals/inhaled. Are the chances that she will hospitalized more often now that she is culturing this nasty bug? She has only had one MRSA flare up that required her to be hospitalized-two years ago. And seeing that it is already resistant to everything, will I cause more harm than good when she is not THAT sick right now-just an increase in cough and a bit more sleepy than usual.

Any suggestions? Advice?
Thanks again you guys! I <img src="i/expressions/heart.gif" border="0"> you all and you just cannot imagine how much it helps me to come here to talk to you.

tammykrumrey · Sep 4, 2008

Again, thanks for all the kind words and prayers. I am so stressed right now! You guys really make my heart feel so good.
 
 Well, the meeting went 'good', if there is such a thing when you are talking about your child having cepacia. My husband did wonderful! I was very proud of him. He even asked a few questions and was not as passive about it all as I kind suspected he would be.
 
 The strain she has is Burkholderia Multivorans. It does show in prelimary reports that it is resistant to all drugs. So, as of now we are just kind of trying out things. I went saying that I wanted her admitted for IV antibiotics. Although I know my husband did not want this unless there was no option. The Dr. said that he was willing to try oral Cipro and Bactrim (Bactrim for her MRSA) and inhaled Tobi. But that if Monday her cough was not better, then he wanted to have her admitted and hoped that he would have more results back as to what to try.
 
 If her cough improves, seh will continue with that course and then he wants her back next Friday for PFTs. If her FEV (she is down about 18 percentage points from Jan to Aug) is not better, then she will be admitted next Friday.
 
 So, I guess we have a few 'deadlines' to meet.
 
 I am not sure how to feel about this all. Would you consider this aggressive treatment? Should I had stood by my guns and insisted on IVs? Kayla is completely against going in for IVs. So, I don't want to force her unless there is no option-that's why I was willing to try the orals/inhaled. Are the chances that she will hospitalized more often now that she is culturing this nasty bug? She has only had one MRSA flare up that required her to be hospitalized-two years ago. And seeing that it is already resistant to everything, will I cause more harm than good when she is not THAT sick right now-just an increase in cough and a bit more sleepy than usual.
 
 Any suggestions? Advice?
 Thanks again you guys! I <img src="i/expressions/heart.gif" border="0"> you all and you just cannot imagine how much it helps me to come here to talk to you.

lilismom · Sep 4, 2008

Tammy,
I always worry if we're not being aggressive enough as well. Lili's Drs seem to try to make things easy for patients and parents and I question whether or not that is always the best way to go. She had clinic on the 19th of Aug and her PFT's were down substantially. I have her on Augmentin right now but am worried we are missing something.
Anyway I didn't mean to get into our issues, I have been checking for an update about the meeting regularly. Lili cultured Multivorans once in Dec 2006, we treated it with bactrim for a month and it hasn't shown back up. We were told that in terms of cepacia, multivorans is not the really nasty one, I guess hers was not resistant. What did your Dr. tell you?
I'm interested in what others have to say in regards to how aggressive to be.
<img src="i/expressions/hugging.gif" border="0">

lilismom · Sep 4, 2008

Tammy,
I always worry if we're not being aggressive enough as well. Lili's Drs seem to try to make things easy for patients and parents and I question whether or not that is always the best way to go. She had clinic on the 19th of Aug and her PFT's were down substantially. I have her on Augmentin right now but am worried we are missing something.
Anyway I didn't mean to get into our issues, I have been checking for an update about the meeting regularly. Lili cultured Multivorans once in Dec 2006, we treated it with bactrim for a month and it hasn't shown back up. We were told that in terms of cepacia, multivorans is not the really nasty one, I guess hers was not resistant. What did your Dr. tell you?
I'm interested in what others have to say in regards to how aggressive to be.
<img src="i/expressions/hugging.gif" border="0">

lilismom · Sep 4, 2008

Tammy,
I always worry if we're not being aggressive enough as well. Lili's Drs seem to try to make things easy for patients and parents and I question whether or not that is always the best way to go. She had clinic on the 19th of Aug and her PFT's were down substantially. I have her on Augmentin right now but am worried we are missing something.
Anyway I didn't mean to get into our issues, I have been checking for an update about the meeting regularly. Lili cultured Multivorans once in Dec 2006, we treated it with bactrim for a month and it hasn't shown back up. We were told that in terms of cepacia, multivorans is not the really nasty one, I guess hers was not resistant. What did your Dr. tell you?
I'm interested in what others have to say in regards to how aggressive to be.
<img src="i/expressions/hugging.gif" border="0">

lilismom · Sep 4, 2008

Tammy,
I always worry if we're not being aggressive enough as well. Lili's Drs seem to try to make things easy for patients and parents and I question whether or not that is always the best way to go. She had clinic on the 19th of Aug and her PFT's were down substantially. I have her on Augmentin right now but am worried we are missing something.
Anyway I didn't mean to get into our issues, I have been checking for an update about the meeting regularly. Lili cultured Multivorans once in Dec 2006, we treated it with bactrim for a month and it hasn't shown back up. We were told that in terms of cepacia, multivorans is not the really nasty one, I guess hers was not resistant. What did your Dr. tell you?
I'm interested in what others have to say in regards to how aggressive to be.
<img src="i/expressions/hugging.gif" border="0">

lilismom · Sep 4, 2008

Tammy,
 I always worry if we're not being aggressive enough as well. Lili's Drs seem to try to make things easy for patients and parents and I question whether or not that is always the best way to go. She had clinic on the 19th of Aug and her PFT's were down substantially. I have her on Augmentin right now but am worried we are missing something.
 Anyway I didn't mean to get into our issues, I have been checking for an update about the meeting regularly. Lili cultured Multivorans once in Dec 2006, we treated it with bactrim for a month and it hasn't shown back up. We were told that in terms of cepacia, multivorans is not the really nasty one, I guess hers was not resistant. What did your Dr. tell you?
 I'm interested in what others have to say in regards to how aggressive to be.
 <img src="i/expressions/hugging.gif" border="0">

Diane · Sep 4, 2008

Hi Tammy,
I think you did great and yes in my opinion the treatment the Dr. suggest is aggressive enough since she is in the beginning stages of it. Using 2 antitibiotics at a time is a must for cepacia since bacteria have a harder time resisting to two antitiobics at a time....PLUS two at a time creates a synergistic effect. Also having a deadline to hospitalize her if things arent improving is good too. Apparently her Dr. wants to keep on top of it and that is great !! Just what you want from a Dr. when treating cepacia.
The strain of cepacia your daugther has isnt the bad one, I know you have to be relieved to hear that. Genomovar III is the worst ( the one i have). I would find out what strain her cousin has and if it is different i would keep them apart from here on.... If they dont have the same strain you dont want them to give each other another strain of cepacia that the other one has. Also with your other daughter, just be sure they dont share utensils, cups, do their treatments in the same room , etc. and it should be ok. You may want to ask the Dr. about this if you havent already. Yay to you and your hubby, for handling this head on <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Sep 4, 2008

Hi Tammy,
I think you did great and yes in my opinion the treatment the Dr. suggest is aggressive enough since she is in the beginning stages of it. Using 2 antitibiotics at a time is a must for cepacia since bacteria have a harder time resisting to two antitiobics at a time....PLUS two at a time creates a synergistic effect. Also having a deadline to hospitalize her if things arent improving is good too. Apparently her Dr. wants to keep on top of it and that is great !! Just what you want from a Dr. when treating cepacia.
The strain of cepacia your daugther has isnt the bad one, I know you have to be relieved to hear that. Genomovar III is the worst ( the one i have). I would find out what strain her cousin has and if it is different i would keep them apart from here on.... If they dont have the same strain you dont want them to give each other another strain of cepacia that the other one has. Also with your other daughter, just be sure they dont share utensils, cups, do their treatments in the same room , etc. and it should be ok. You may want to ask the Dr. about this if you havent already. Yay to you and your hubby, for handling this head on <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Sep 4, 2008

Hi Tammy,
I think you did great and yes in my opinion the treatment the Dr. suggest is aggressive enough since she is in the beginning stages of it. Using 2 antitibiotics at a time is a must for cepacia since bacteria have a harder time resisting to two antitiobics at a time....PLUS two at a time creates a synergistic effect. Also having a deadline to hospitalize her if things arent improving is good too. Apparently her Dr. wants to keep on top of it and that is great !! Just what you want from a Dr. when treating cepacia.
The strain of cepacia your daugther has isnt the bad one, I know you have to be relieved to hear that. Genomovar III is the worst ( the one i have). I would find out what strain her cousin has and if it is different i would keep them apart from here on.... If they dont have the same strain you dont want them to give each other another strain of cepacia that the other one has. Also with your other daughter, just be sure they dont share utensils, cups, do their treatments in the same room , etc. and it should be ok. You may want to ask the Dr. about this if you havent already. Yay to you and your hubby, for handling this head on <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Sep 4, 2008

Hi Tammy,
I think you did great and yes in my opinion the treatment the Dr. suggest is aggressive enough since she is in the beginning stages of it. Using 2 antitibiotics at a time is a must for cepacia since bacteria have a harder time resisting to two antitiobics at a time....PLUS two at a time creates a synergistic effect. Also having a deadline to hospitalize her if things arent improving is good too. Apparently her Dr. wants to keep on top of it and that is great !! Just what you want from a Dr. when treating cepacia.
The strain of cepacia your daugther has isnt the bad one, I know you have to be relieved to hear that. Genomovar III is the worst ( the one i have). I would find out what strain her cousin has and if it is different i would keep them apart from here on.... If they dont have the same strain you dont want them to give each other another strain of cepacia that the other one has. Also with your other daughter, just be sure they dont share utensils, cups, do their treatments in the same room , etc. and it should be ok. You may want to ask the Dr. about this if you havent already. Yay to you and your hubby, for handling this head on <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

Diane · Sep 4, 2008

Hi Tammy,
 I think you did great and yes in my opinion the treatment the Dr. suggest is aggressive enough since she is in the beginning stages of it. Using 2 antitibiotics at a time is a must for cepacia since bacteria have a harder time resisting to two antitiobics at a time....PLUS two at a time creates a synergistic effect. Also having a deadline to hospitalize her if things arent improving is good too. Apparently her Dr. wants to keep on top of it and that is great !! Just what you want from a Dr. when treating cepacia.
 The strain of cepacia your daugther has isnt the bad one, I know you have to be relieved to hear that. Genomovar III is the worst ( the one i have). I would find out what strain her cousin has and if it is different i would keep them apart from here on.... If they dont have the same strain you dont want them to give each other another strain of cepacia that the other one has. Also with your other daughter, just be sure they dont share utensils, cups, do their treatments in the same room , etc. and it should be ok. You may want to ask the Dr. about this if you havent already. Yay to you and your hubby, for handling this head on <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">

momtoCory · Sep 4, 2008