MRSA, Pseudos,

shimmereestar · Nov 9, 2009

Hey all,

I know it's been quite a while. Things seemed to be going pretty "normal" for a while, so I've been pretty much lurking, when I get the chance. Then all this sadness hit in the CF community. It took me aback. It seemed surreal. I felt like I was going along in my little world and then it hit us too.

Ellie cultured Pseudos in July, we hit it aggressively with hospital and IV's, and they have not appeared to resurface (although I know they are probably lurking around somewhere) and we are now on TOBI every other month.

Today I found out she has been hit with MRSA. I cannot believe how awful I feel. She's not even 2 yet. Is this normal? I just feel so overwhelmed with sadness and I know friends and family are trying to understand, but I really don't think they can. Have any of you had kiddos that cultured both PA and MRSA before 2? She's not in daycare, we pretty much keep her indoors except a few times a week. I'm just so overwhelmed.

I'd really love to hear from somebody who has had experience with it. I just feel so overwhelmed and that it's really been aggressive in my little girl. I'm just sad.

shimmereestar · Nov 9, 2009

Hey all,

I know it's been quite a while. Things seemed to be going pretty "normal" for a while, so I've been pretty much lurking, when I get the chance. Then all this sadness hit in the CF community. It took me aback. It seemed surreal. I felt like I was going along in my little world and then it hit us too.

Ellie cultured Pseudos in July, we hit it aggressively with hospital and IV's, and they have not appeared to resurface (although I know they are probably lurking around somewhere) and we are now on TOBI every other month.

Today I found out she has been hit with MRSA. I cannot believe how awful I feel. She's not even 2 yet. Is this normal? I just feel so overwhelmed with sadness and I know friends and family are trying to understand, but I really don't think they can. Have any of you had kiddos that cultured both PA and MRSA before 2? She's not in daycare, we pretty much keep her indoors except a few times a week. I'm just so overwhelmed.

I'd really love to hear from somebody who has had experience with it. I just feel so overwhelmed and that it's really been aggressive in my little girl. I'm just sad.

shimmereestar · Nov 9, 2009

Hey all,

I know it's been quite a while. Things seemed to be going pretty "normal" for a while, so I've been pretty much lurking, when I get the chance. Then all this sadness hit in the CF community. It took me aback. It seemed surreal. I felt like I was going along in my little world and then it hit us too.

Ellie cultured Pseudos in July, we hit it aggressively with hospital and IV's, and they have not appeared to resurface (although I know they are probably lurking around somewhere) and we are now on TOBI every other month.

Today I found out she has been hit with MRSA. I cannot believe how awful I feel. She's not even 2 yet. Is this normal? I just feel so overwhelmed with sadness and I know friends and family are trying to understand, but I really don't think they can. Have any of you had kiddos that cultured both PA and MRSA before 2? She's not in daycare, we pretty much keep her indoors except a few times a week. I'm just so overwhelmed.

I'd really love to hear from somebody who has had experience with it. I just feel so overwhelmed and that it's really been aggressive in my little girl. I'm just sad.

shimmereestar · Nov 9, 2009

Hey all,

I know it's been quite a while. Things seemed to be going pretty "normal" for a while, so I've been pretty much lurking, when I get the chance. Then all this sadness hit in the CF community. It took me aback. It seemed surreal. I felt like I was going along in my little world and then it hit us too.

Ellie cultured Pseudos in July, we hit it aggressively with hospital and IV's, and they have not appeared to resurface (although I know they are probably lurking around somewhere) and we are now on TOBI every other month.

Today I found out she has been hit with MRSA. I cannot believe how awful I feel. She's not even 2 yet. Is this normal? I just feel so overwhelmed with sadness and I know friends and family are trying to understand, but I really don't think they can. Have any of you had kiddos that cultured both PA and MRSA before 2? She's not in daycare, we pretty much keep her indoors except a few times a week. I'm just so overwhelmed.

I'd really love to hear from somebody who has had experience with it. I just feel so overwhelmed and that it's really been aggressive in my little girl. I'm just sad.

shimmereestar · Nov 9, 2009

Hey all,
 
 I know it's been quite a while. Things seemed to be going pretty "normal" for a while, so I've been pretty much lurking, when I get the chance. Then all this sadness hit in the CF community. It took me aback. It seemed surreal. I felt like I was going along in my little world and then it hit us too.
 
 Ellie cultured Pseudos in July, we hit it aggressively with hospital and IV's, and they have not appeared to resurface (although I know they are probably lurking around somewhere) and we are now on TOBI every other month.
 
 Today I found out she has been hit with MRSA. I cannot believe how awful I feel. She's not even 2 yet. Is this normal? I just feel so overwhelmed with sadness and I know friends and family are trying to understand, but I really don't think they can. Have any of you had kiddos that cultured both PA and MRSA before 2? She's not in daycare, we pretty much keep her indoors except a few times a week. I'm just so overwhelmed.
 
 I'd really love to hear from somebody who has had experience with it. I just feel so overwhelmed and that it's really been aggressive in my little girl. I'm just sad.

ashmomo · Nov 9, 2009

I am so sorry to hear you are going thru this. My 6 month old cultured Pseudos a couple months ago. We did 28 days Tobi and 2 weeks of Bactrim. She has had 1 culture since then, well it was in the middle of her TObi. They did not give me results on that one, but we go this week again, so we will see what was on that culture. I am sure it was too soon though. So I know how you are feeling about that. I will be scared if they come to recommend IVs in the hospital. That will be so hard!
I don't have experience with the MRSA. Sorry. Poor girl, I hope things turn in a different direction for you guys.
As for family/friends trying to understand...I agree with you. They just don't know exactly the stress and worry that we go through. They don't know what this is doing to our children. They don't see the whole picture, just the little cuties that seem quite normal from their perspective. I hope I was of some help. PM me if you need to chat. I also have a 4 year old w/ CF.

ashmomo · Nov 9, 2009

I am so sorry to hear you are going thru this. My 6 month old cultured Pseudos a couple months ago. We did 28 days Tobi and 2 weeks of Bactrim. She has had 1 culture since then, well it was in the middle of her TObi. They did not give me results on that one, but we go this week again, so we will see what was on that culture. I am sure it was too soon though. So I know how you are feeling about that. I will be scared if they come to recommend IVs in the hospital. That will be so hard!
I don't have experience with the MRSA. Sorry. Poor girl, I hope things turn in a different direction for you guys.
As for family/friends trying to understand...I agree with you. They just don't know exactly the stress and worry that we go through. They don't know what this is doing to our children. They don't see the whole picture, just the little cuties that seem quite normal from their perspective. I hope I was of some help. PM me if you need to chat. I also have a 4 year old w/ CF.

ashmomo · Nov 9, 2009

I am so sorry to hear you are going thru this. My 6 month old cultured Pseudos a couple months ago. We did 28 days Tobi and 2 weeks of Bactrim. She has had 1 culture since then, well it was in the middle of her TObi. They did not give me results on that one, but we go this week again, so we will see what was on that culture. I am sure it was too soon though. So I know how you are feeling about that. I will be scared if they come to recommend IVs in the hospital. That will be so hard!
I don't have experience with the MRSA. Sorry. Poor girl, I hope things turn in a different direction for you guys.
As for family/friends trying to understand...I agree with you. They just don't know exactly the stress and worry that we go through. They don't know what this is doing to our children. They don't see the whole picture, just the little cuties that seem quite normal from their perspective. I hope I was of some help. PM me if you need to chat. I also have a 4 year old w/ CF.

ashmomo · Nov 9, 2009

I am so sorry to hear you are going thru this. My 6 month old cultured Pseudos a couple months ago. We did 28 days Tobi and 2 weeks of Bactrim. She has had 1 culture since then, well it was in the middle of her TObi. They did not give me results on that one, but we go this week again, so we will see what was on that culture. I am sure it was too soon though. So I know how you are feeling about that. I will be scared if they come to recommend IVs in the hospital. That will be so hard!
I don't have experience with the MRSA. Sorry. Poor girl, I hope things turn in a different direction for you guys.
As for family/friends trying to understand...I agree with you. They just don't know exactly the stress and worry that we go through. They don't know what this is doing to our children. They don't see the whole picture, just the little cuties that seem quite normal from their perspective. I hope I was of some help. PM me if you need to chat. I also have a 4 year old w/ CF.

ashmomo · Nov 9, 2009

I am so sorry to hear you are going thru this. My 6 month old cultured Pseudos a couple months ago. We did 28 days Tobi and 2 weeks of Bactrim. She has had 1 culture since then, well it was in the middle of her TObi. They did not give me results on that one, but we go this week again, so we will see what was on that culture. I am sure it was too soon though. So I know how you are feeling about that. I will be scared if they come to recommend IVs in the hospital. That will be so hard!
 I don't have experience with the MRSA. Sorry. Poor girl, I hope things turn in a different direction for you guys.
 As for family/friends trying to understand...I agree with you. They just don't know exactly the stress and worry that we go through. They don't know what this is doing to our children. They don't see the whole picture, just the little cuties that seem quite normal from their perspective. I hope I was of some help. PM me if you need to chat. I also have a 4 year old w/ CF.

sdelorenzo · Nov 9, 2009

I know how your feel! Both of my kids cultured MRSA for the first time in July, they are 6 and 8. I really thought we were going to avoid this bacteria. My nephew who is 11 and neighbor who is 12 both have cf and have cultured mrsa in the past year as well. We have not spent anytime with them due to the MRSA. If I had to guess, I think this bacteria is just causing more problems for the medical community and cfers as well in the past few years. My daughter has recently had two clean cultures, but my son is once again culturing MRSA.

By the way, my son cultured pseudomonas at his first birthday, his third birthday and then once in his sinuses when he was five. So, I guess that is good news?? I agree it probably lurks around but doesn't show up on cultures. But at least my son doesn't have many PA bacteria. Very excited the Tobi seems to do a good job for our little ones!
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant 9 months no cf

sdelorenzo · Nov 9, 2009

I know how your feel! Both of my kids cultured MRSA for the first time in July, they are 6 and 8. I really thought we were going to avoid this bacteria. My nephew who is 11 and neighbor who is 12 both have cf and have cultured mrsa in the past year as well. We have not spent anytime with them due to the MRSA. If I had to guess, I think this bacteria is just causing more problems for the medical community and cfers as well in the past few years. My daughter has recently had two clean cultures, but my son is once again culturing MRSA.

By the way, my son cultured pseudomonas at his first birthday, his third birthday and then once in his sinuses when he was five. So, I guess that is good news?? I agree it probably lurks around but doesn't show up on cultures. But at least my son doesn't have many PA bacteria. Very excited the Tobi seems to do a good job for our little ones!
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant 9 months no cf

sdelorenzo · Nov 9, 2009

I know how your feel! Both of my kids cultured MRSA for the first time in July, they are 6 and 8. I really thought we were going to avoid this bacteria. My nephew who is 11 and neighbor who is 12 both have cf and have cultured mrsa in the past year as well. We have not spent anytime with them due to the MRSA. If I had to guess, I think this bacteria is just causing more problems for the medical community and cfers as well in the past few years. My daughter has recently had two clean cultures, but my son is once again culturing MRSA.

By the way, my son cultured pseudomonas at his first birthday, his third birthday and then once in his sinuses when he was five. So, I guess that is good news?? I agree it probably lurks around but doesn't show up on cultures. But at least my son doesn't have many PA bacteria. Very excited the Tobi seems to do a good job for our little ones!
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant 9 months no cf

sdelorenzo · Nov 9, 2009

I know how your feel! Both of my kids cultured MRSA for the first time in July, they are 6 and 8. I really thought we were going to avoid this bacteria. My nephew who is 11 and neighbor who is 12 both have cf and have cultured mrsa in the past year as well. We have not spent anytime with them due to the MRSA. If I had to guess, I think this bacteria is just causing more problems for the medical community and cfers as well in the past few years. My daughter has recently had two clean cultures, but my son is once again culturing MRSA.

By the way, my son cultured pseudomonas at his first birthday, his third birthday and then once in his sinuses when he was five. So, I guess that is good news?? I agree it probably lurks around but doesn't show up on cultures. But at least my son doesn't have many PA bacteria. Very excited the Tobi seems to do a good job for our little ones!
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant 9 months no cf

sdelorenzo · Nov 9, 2009

I know how your feel! Both of my kids cultured MRSA for the first time in July, they are 6 and 8. I really thought we were going to avoid this bacteria. My nephew who is 11 and neighbor who is 12 both have cf and have cultured mrsa in the past year as well. We have not spent anytime with them due to the MRSA. If I had to guess, I think this bacteria is just causing more problems for the medical community and cfers as well in the past few years. My daughter has recently had two clean cultures, but my son is once again culturing MRSA.
 
 By the way, my son cultured pseudomonas at his first birthday, his third birthday and then once in his sinuses when he was five. So, I guess that is good news?? I agree it probably lurks around but doesn't show up on cultures. But at least my son doesn't have many PA bacteria. Very excited the Tobi seems to do a good job for our little ones!
 Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant 9 months no cf

kaylee04cassidy08 · Nov 9, 2009

Hi Sarah. I do not have any experience with the two cultures your baby has, but I do know how heart breaking it is to get the news that there is something on the culture. It makes CF that much more real. It is a step in the direction that you didn't want to go. But don't forget that there are treatments and you may be able to eradicate it. And if not, you learn to live with it, just like we have all had to learn to live with CF itself. I am sure these feelings will return anytime there is "bad news". When my daughter's lung function declined I spent a week in bed. But we just have to keep living. We have to keep going. I know it is not easy and it is okay to cry and punch your pillow or whatever you need to do, but then you move on. We must keep moving. Hugs to you.

-Lauren

kaylee04cassidy08 · Nov 9, 2009

Hi Sarah. I do not have any experience with the two cultures your baby has, but I do know how heart breaking it is to get the news that there is something on the culture. It makes CF that much more real. It is a step in the direction that you didn't want to go. But don't forget that there are treatments and you may be able to eradicate it. And if not, you learn to live with it, just like we have all had to learn to live with CF itself. I am sure these feelings will return anytime there is "bad news". When my daughter's lung function declined I spent a week in bed. But we just have to keep living. We have to keep going. I know it is not easy and it is okay to cry and punch your pillow or whatever you need to do, but then you move on. We must keep moving. Hugs to you.

-Lauren

kaylee04cassidy08 · Nov 9, 2009

Hi Sarah. I do not have any experience with the two cultures your baby has, but I do know how heart breaking it is to get the news that there is something on the culture. It makes CF that much more real. It is a step in the direction that you didn't want to go. But don't forget that there are treatments and you may be able to eradicate it. And if not, you learn to live with it, just like we have all had to learn to live with CF itself. I am sure these feelings will return anytime there is "bad news". When my daughter's lung function declined I spent a week in bed. But we just have to keep living. We have to keep going. I know it is not easy and it is okay to cry and punch your pillow or whatever you need to do, but then you move on. We must keep moving. Hugs to you.

-Lauren

kaylee04cassidy08 · Nov 9, 2009

Hi Sarah. I do not have any experience with the two cultures your baby has, but I do know how heart breaking it is to get the news that there is something on the culture. It makes CF that much more real. It is a step in the direction that you didn't want to go. But don't forget that there are treatments and you may be able to eradicate it. And if not, you learn to live with it, just like we have all had to learn to live with CF itself. I am sure these feelings will return anytime there is "bad news". When my daughter's lung function declined I spent a week in bed. But we just have to keep living. We have to keep going. I know it is not easy and it is okay to cry and punch your pillow or whatever you need to do, but then you move on. We must keep moving. Hugs to you.

-Lauren

kaylee04cassidy08 · Nov 9, 2009

Hi Sarah. I do not have any experience with the two cultures your baby has, but I do know how heart breaking it is to get the news that there is something on the culture. It makes CF that much more real. It is a step in the direction that you didn't want to go. But don't forget that there are treatments and you may be able to eradicate it. And if not, you learn to live with it, just like we have all had to learn to live with CF itself. I am sure these feelings will return anytime there is "bad news". When my daughter's lung function declined I spent a week in bed. But we just have to keep living. We have to keep going. I know it is not easy and it is okay to cry and punch your pillow or whatever you need to do, but then you move on. We must keep moving. Hugs to you.
 
 -Lauren

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