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tammykrumrey
Guest
Thanks guys.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
T
tammykrumrey
Guest
Thanks guys.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
T
tammykrumrey
Guest
Thanks guys.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
T
tammykrumrey
Guest
Thanks guys.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
T
tammykrumrey
Guest
Thanks guys.
<br />
<br />Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
<br />
<br />Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
<br />
<br />
<br />
<br />Sarah, yes,we were told that multivorans is not the real nasty one. He put Kayla on Bactrim, but that was actually to help out the MRSA. I do know that hers is resistant, but I do know that a mix of meds can help. So, that is why we are trying the tobi and Cipro. I am sorry that Lili's PFTs were down. But I will tell you that last night I mentioned how Hannah's PFTs were down too, and her Dr. said that at her age (and she is almost 9) that she still hasn't mastered the technique. So he wasn't treating her yet. So, if anything, I hope that maybe Lili just hasn't mastered the technique yet. (Hannah has been doing PFT since she was about 4 years old-started early b/c she wanted to be like her big sis)
<br />
<br />Thanks Diane for letting me feel better about our plan. I just want tomake sure we are doing the right thing. And yes, it is the same strain that my nephew carries. But I have decided, and told my sister as well, that I still wanted them to keep the distances b/n them. Kayla still has never cultured PA, and I don't want her to catch that too. The lab in Michigan is still in the process of sequencing the cepacia to see if it exactly the same as my nephews. Although if it is, I don't want him to know b/c I don't want him to feel like it is his fault. So, I will probably even tell our kids dr. not to tell me one way or the other.
<br />
<br />
JennyCoulon
New member
If you have to have bad news at least the part about it not being the worst cepacia is the best. I have no idea how you are feeling but want you to know that I am here if you need someone to talk to. It hits me b/c my oldest is 8 years old. Thoughts and prayers are with you.....
JennyCoulon
New member
If you have to have bad news at least the part about it not being the worst cepacia is the best. I have no idea how you are feeling but want you to know that I am here if you need someone to talk to. It hits me b/c my oldest is 8 years old. Thoughts and prayers are with you.....
JennyCoulon
New member
If you have to have bad news at least the part about it not being the worst cepacia is the best. I have no idea how you are feeling but want you to know that I am here if you need someone to talk to. It hits me b/c my oldest is 8 years old. Thoughts and prayers are with you.....
JennyCoulon
New member
If you have to have bad news at least the part about it not being the worst cepacia is the best. I have no idea how you are feeling but want you to know that I am here if you need someone to talk to. It hits me b/c my oldest is 8 years old. Thoughts and prayers are with you.....
JennyCoulon
New member
If you have to have bad news at least the part about it not being the worst cepacia is the best. I have no idea how you are feeling but want you to know that I am here if you need someone to talk to. It hits me b/c my oldest is 8 years old. Thoughts and prayers are with you.....
Hmmm, i'm not sure i agree with the plan of action your doctors have decided on. From what i know about Cepacia (i too have multivorans), if you can ever get rid of it once you first culture it, it will be within the first two years of having it. I would therefore hit it now with some strong IV antibiotics followed up by a month or so of probably double strength Bactrim. Get rid of it now while it's still possible. I'm no doctor though, but look at this way - what harm would this really do? A fortnight of IV's and an additional month of orals and who knows, she may never culture it again. Just my opinion and what i would tell my doctors to do if i was in your shoes. Best IVs for cepacia MV i believe are usually either Ceftazadime or Meropenem. If she doesn't culture PA yet, why not both?!
Hmmm, i'm not sure i agree with the plan of action your doctors have decided on. From what i know about Cepacia (i too have multivorans), if you can ever get rid of it once you first culture it, it will be within the first two years of having it. I would therefore hit it now with some strong IV antibiotics followed up by a month or so of probably double strength Bactrim. Get rid of it now while it's still possible. I'm no doctor though, but look at this way - what harm would this really do? A fortnight of IV's and an additional month of orals and who knows, she may never culture it again. Just my opinion and what i would tell my doctors to do if i was in your shoes. Best IVs for cepacia MV i believe are usually either Ceftazadime or Meropenem. If she doesn't culture PA yet, why not both?!
Hmmm, i'm not sure i agree with the plan of action your doctors have decided on. From what i know about Cepacia (i too have multivorans), if you can ever get rid of it once you first culture it, it will be within the first two years of having it. I would therefore hit it now with some strong IV antibiotics followed up by a month or so of probably double strength Bactrim. Get rid of it now while it's still possible. I'm no doctor though, but look at this way - what harm would this really do? A fortnight of IV's and an additional month of orals and who knows, she may never culture it again. Just my opinion and what i would tell my doctors to do if i was in your shoes. Best IVs for cepacia MV i believe are usually either Ceftazadime or Meropenem. If she doesn't culture PA yet, why not both?!
Hmmm, i'm not sure i agree with the plan of action your doctors have decided on. From what i know about Cepacia (i too have multivorans), if you can ever get rid of it once you first culture it, it will be within the first two years of having it. I would therefore hit it now with some strong IV antibiotics followed up by a month or so of probably double strength Bactrim. Get rid of it now while it's still possible. I'm no doctor though, but look at this way - what harm would this really do? A fortnight of IV's and an additional month of orals and who knows, she may never culture it again. Just my opinion and what i would tell my doctors to do if i was in your shoes. Best IVs for cepacia MV i believe are usually either Ceftazadime or Meropenem. If she doesn't culture PA yet, why not both?!
Hmmm, i'm not sure i agree with the plan of action your doctors have decided on. From what i know about Cepacia (i too have multivorans), if you can ever get rid of it once you first culture it, it will be within the first two years of having it. I would therefore hit it now with some strong IV antibiotics followed up by a month or so of probably double strength Bactrim. Get rid of it now while it's still possible. I'm no doctor though, but look at this way - what harm would this really do? A fortnight of IV's and an additional month of orals and who knows, she may never culture it again. Just my opinion and what i would tell my doctors to do if i was in your shoes. Best IVs for cepacia MV i believe are usually either Ceftazadime or Meropenem. If she doesn't culture PA yet, why not both?!