MRSA, Pseudos,

mbrandazzo · Nov 10, 2009

Hi Sarah,

You are NOT alone! I can completely relate to you... My son is not yet two, and has cultured both MRSA and recently pseudo...

He cultured MRSA when he was just three months old... It was right after he was diagnosed and they admitted him right away - We were scared, devastated, and SO new to the whole CF world that it didn't seem real or possible! He was in the hospital for two weeks on heavy IV antibiotics, and then when we were sent home, we had to do a daily cleansing of his nose area... That was when he was 3 months, now he is 21 months and he HAS NOT cultured it since! So the good news is that it is POSSIBLE to get rid of it, or at least keep it at bay...

Now, the whole pseudo thing is still kind of new, and that was a BIG blow to us because we had thought he was doing so well. Like you, we don't send him to daycare and are VERY careful with his exposure to germs... We couldn't understand why it happened, when it seemed we were doing everything we could to prevent it. I was bawling my eyes out when I got the call... Anyway, we have since learned that there really is NO WAY to prevent exposure to PA, and that it is very treatable with the TOBI, so in other words it is not the beginning of the end!

So, please do not lose hope, and please know that you are not alone at all! I felt the EXACT same way you do, I thought that it must mean that Logan has a "severe" case because he seems to catch everything possible, but now I really try and focus on the positives - That he is being treated and given EXCELLENT care... That he is LOVED more than any other little boy I know... and that we believe in the future (hopefully not too far out there) that our little guy will be one of the first to see people like him with CF live full lives. Maybe it is a little idealistic, but we want him to feel positive about things, and pass that spirit on to others...

mbrandazzo · Nov 10, 2009

Hi Sarah,

You are NOT alone! I can completely relate to you... My son is not yet two, and has cultured both MRSA and recently pseudo...

He cultured MRSA when he was just three months old... It was right after he was diagnosed and they admitted him right away - We were scared, devastated, and SO new to the whole CF world that it didn't seem real or possible! He was in the hospital for two weeks on heavy IV antibiotics, and then when we were sent home, we had to do a daily cleansing of his nose area... That was when he was 3 months, now he is 21 months and he HAS NOT cultured it since! So the good news is that it is POSSIBLE to get rid of it, or at least keep it at bay...

Now, the whole pseudo thing is still kind of new, and that was a BIG blow to us because we had thought he was doing so well. Like you, we don't send him to daycare and are VERY careful with his exposure to germs... We couldn't understand why it happened, when it seemed we were doing everything we could to prevent it. I was bawling my eyes out when I got the call... Anyway, we have since learned that there really is NO WAY to prevent exposure to PA, and that it is very treatable with the TOBI, so in other words it is not the beginning of the end!

So, please do not lose hope, and please know that you are not alone at all! I felt the EXACT same way you do, I thought that it must mean that Logan has a "severe" case because he seems to catch everything possible, but now I really try and focus on the positives - That he is being treated and given EXCELLENT care... That he is LOVED more than any other little boy I know... and that we believe in the future (hopefully not too far out there) that our little guy will be one of the first to see people like him with CF live full lives. Maybe it is a little idealistic, but we want him to feel positive about things, and pass that spirit on to others...

mbrandazzo · Nov 10, 2009

Hi Sarah,

You are NOT alone! I can completely relate to you... My son is not yet two, and has cultured both MRSA and recently pseudo...

He cultured MRSA when he was just three months old... It was right after he was diagnosed and they admitted him right away - We were scared, devastated, and SO new to the whole CF world that it didn't seem real or possible! He was in the hospital for two weeks on heavy IV antibiotics, and then when we were sent home, we had to do a daily cleansing of his nose area... That was when he was 3 months, now he is 21 months and he HAS NOT cultured it since! So the good news is that it is POSSIBLE to get rid of it, or at least keep it at bay...

Now, the whole pseudo thing is still kind of new, and that was a BIG blow to us because we had thought he was doing so well. Like you, we don't send him to daycare and are VERY careful with his exposure to germs... We couldn't understand why it happened, when it seemed we were doing everything we could to prevent it. I was bawling my eyes out when I got the call... Anyway, we have since learned that there really is NO WAY to prevent exposure to PA, and that it is very treatable with the TOBI, so in other words it is not the beginning of the end!

So, please do not lose hope, and please know that you are not alone at all! I felt the EXACT same way you do, I thought that it must mean that Logan has a "severe" case because he seems to catch everything possible, but now I really try and focus on the positives - That he is being treated and given EXCELLENT care... That he is LOVED more than any other little boy I know... and that we believe in the future (hopefully not too far out there) that our little guy will be one of the first to see people like him with CF live full lives. Maybe it is a little idealistic, but we want him to feel positive about things, and pass that spirit on to others...

mbrandazzo · Nov 10, 2009

Hi Sarah,

You are NOT alone! I can completely relate to you... My son is not yet two, and has cultured both MRSA and recently pseudo...

He cultured MRSA when he was just three months old... It was right after he was diagnosed and they admitted him right away - We were scared, devastated, and SO new to the whole CF world that it didn't seem real or possible! He was in the hospital for two weeks on heavy IV antibiotics, and then when we were sent home, we had to do a daily cleansing of his nose area... That was when he was 3 months, now he is 21 months and he HAS NOT cultured it since! So the good news is that it is POSSIBLE to get rid of it, or at least keep it at bay...

Now, the whole pseudo thing is still kind of new, and that was a BIG blow to us because we had thought he was doing so well. Like you, we don't send him to daycare and are VERY careful with his exposure to germs... We couldn't understand why it happened, when it seemed we were doing everything we could to prevent it. I was bawling my eyes out when I got the call... Anyway, we have since learned that there really is NO WAY to prevent exposure to PA, and that it is very treatable with the TOBI, so in other words it is not the beginning of the end!

So, please do not lose hope, and please know that you are not alone at all! I felt the EXACT same way you do, I thought that it must mean that Logan has a "severe" case because he seems to catch everything possible, but now I really try and focus on the positives - That he is being treated and given EXCELLENT care... That he is LOVED more than any other little boy I know... and that we believe in the future (hopefully not too far out there) that our little guy will be one of the first to see people like him with CF live full lives. Maybe it is a little idealistic, but we want him to feel positive about things, and pass that spirit on to others...

mbrandazzo · Nov 10, 2009

Hi Sarah,
 
 You are NOT alone! I can completely relate to you... My son is not yet two, and has cultured both MRSA and recently pseudo...
 
 He cultured MRSA when he was just three months old... It was right after he was diagnosed and they admitted him right away - We were scared, devastated, and SO new to the whole CF world that it didn't seem real or possible! He was in the hospital for two weeks on heavy IV antibiotics, and then when we were sent home, we had to do a daily cleansing of his nose area... That was when he was 3 months, now he is 21 months and he HAS NOT cultured it since! So the good news is that it is POSSIBLE to get rid of it, or at least keep it at bay...
 
 Now, the whole pseudo thing is still kind of new, and that was a BIG blow to us because we had thought he was doing so well. Like you, we don't send him to daycare and are VERY careful with his exposure to germs... We couldn't understand why it happened, when it seemed we were doing everything we could to prevent it. I was bawling my eyes out when I got the call... Anyway, we have since learned that there really is NO WAY to prevent exposure to PA, and that it is very treatable with the TOBI, so in other words it is not the beginning of the end!
 
 So, please do not lose hope, and please know that you are not alone at all! I felt the EXACT same way you do, I thought that it must mean that Logan has a "severe" case because he seems to catch everything possible, but now I really try and focus on the positives - That he is being treated and given EXCELLENT care... That he is LOVED more than any other little boy I know... and that we believe in the future (hopefully not too far out there) that our little guy will be one of the first to see people like him with CF live full lives. Maybe it is a little idealistic, but we want him to feel positive about things, and pass that spirit on to others...

crickit715 · Nov 10, 2009

my little girl cultured pa right after her first birthday and i was totally devistated. it was like getting the diagnosis all over again! but...by God's grace she has not cultured it sense. we deal with chronic staph, not mrsa. she had her first bronch and lung lavage in july with 2 weeks iv antibiotics and soon after cultured staph again...its sooooo heartbreaking. i kept thinking "mine will be the kid, that doesnt culture any bacteria if i can just keep her out of daycare and away from sick people!!!". but it doesnt work like that. (still wont let her in daycare, but that another issue, lol) hang in there and know many of us are going thru this with you!! God Bless

crickit715 · Nov 10, 2009

my little girl cultured pa right after her first birthday and i was totally devistated. it was like getting the diagnosis all over again! but...by God's grace she has not cultured it sense. we deal with chronic staph, not mrsa. she had her first bronch and lung lavage in july with 2 weeks iv antibiotics and soon after cultured staph again...its sooooo heartbreaking. i kept thinking "mine will be the kid, that doesnt culture any bacteria if i can just keep her out of daycare and away from sick people!!!". but it doesnt work like that. (still wont let her in daycare, but that another issue, lol) hang in there and know many of us are going thru this with you!! God Bless

crickit715 · Nov 10, 2009

my little girl cultured pa right after her first birthday and i was totally devistated. it was like getting the diagnosis all over again! but...by God's grace she has not cultured it sense. we deal with chronic staph, not mrsa. she had her first bronch and lung lavage in july with 2 weeks iv antibiotics and soon after cultured staph again...its sooooo heartbreaking. i kept thinking "mine will be the kid, that doesnt culture any bacteria if i can just keep her out of daycare and away from sick people!!!". but it doesnt work like that. (still wont let her in daycare, but that another issue, lol) hang in there and know many of us are going thru this with you!! God Bless

crickit715 · Nov 10, 2009

my little girl cultured pa right after her first birthday and i was totally devistated. it was like getting the diagnosis all over again! but...by God's grace she has not cultured it sense. we deal with chronic staph, not mrsa. she had her first bronch and lung lavage in july with 2 weeks iv antibiotics and soon after cultured staph again...its sooooo heartbreaking. i kept thinking "mine will be the kid, that doesnt culture any bacteria if i can just keep her out of daycare and away from sick people!!!". but it doesnt work like that. (still wont let her in daycare, but that another issue, lol) hang in there and know many of us are going thru this with you!! God Bless

crickit715 · Nov 10, 2009

my little girl cultured pa right after her first birthday and i was totally devistated. it was like getting the diagnosis all over again! but...by God's grace she has not cultured it sense. we deal with chronic staph, not mrsa. she had her first bronch and lung lavage in july with 2 weeks iv antibiotics and soon after cultured staph again...its sooooo heartbreaking. i kept thinking "mine will be the kid, that doesnt culture any bacteria if i can just keep her out of daycare and away from sick people!!!". but it doesnt work like that. (still wont let her in daycare, but that another issue, lol) hang in there and know many of us are going thru this with you!! God Bless

twinluv29 · Nov 10, 2009

Hi Sarah. I'm sorry about your little one culturing Pseudom. and MRSA. I know exactly how you feel. One of my twins cultured Pseudom. and MRSA four weeks ago at three months old. He's four months old now and just finished his TOBI/CPT/Albuterol treatments for Pseudom. We went in today to take his first of three cultures to find out if the Pseudom. has been eradicated.

We were hit with the devastating news that he had CF at tne same time the doctors revealed that he cultured Pseudom. about a month ago. While we were still reeling from the news, learning how to do his treatments twice a day, and trying to wrap our minds around this devastating disease, we got the news that he cultured MRSA. My husband and I felt terrible and really down...it's like the hits kept on coming.

It also didn't help that most people we know have no idea what we were going through --- unless you have a child with CF, most people don't quite understand.

We're now testing our other twin for CF, Psuedom., and MRSA. We're bracing ourselves to start this whole nightmarish rollercoaster ride all over again. It's been tough.

The best you can do is stay as positive as possible; pray; let yourself cry when you want to; and remind yourself everyday how lucky you are to have such a beautiful child to have and hold. Because no matter how difficult the last few weeks have been for us, we feel blessed everyday that we have such amazing, loving babies.

Good luck and know that you're not alone.

twinluv29 · Nov 10, 2009

Hi Sarah. I'm sorry about your little one culturing Pseudom. and MRSA. I know exactly how you feel. One of my twins cultured Pseudom. and MRSA four weeks ago at three months old. He's four months old now and just finished his TOBI/CPT/Albuterol treatments for Pseudom. We went in today to take his first of three cultures to find out if the Pseudom. has been eradicated.

We were hit with the devastating news that he had CF at tne same time the doctors revealed that he cultured Pseudom. about a month ago. While we were still reeling from the news, learning how to do his treatments twice a day, and trying to wrap our minds around this devastating disease, we got the news that he cultured MRSA. My husband and I felt terrible and really down...it's like the hits kept on coming.

It also didn't help that most people we know have no idea what we were going through --- unless you have a child with CF, most people don't quite understand.

We're now testing our other twin for CF, Psuedom., and MRSA. We're bracing ourselves to start this whole nightmarish rollercoaster ride all over again. It's been tough.

The best you can do is stay as positive as possible; pray; let yourself cry when you want to; and remind yourself everyday how lucky you are to have such a beautiful child to have and hold. Because no matter how difficult the last few weeks have been for us, we feel blessed everyday that we have such amazing, loving babies.

Good luck and know that you're not alone.

twinluv29 · Nov 10, 2009

Hi Sarah. I'm sorry about your little one culturing Pseudom. and MRSA. I know exactly how you feel. One of my twins cultured Pseudom. and MRSA four weeks ago at three months old. He's four months old now and just finished his TOBI/CPT/Albuterol treatments for Pseudom. We went in today to take his first of three cultures to find out if the Pseudom. has been eradicated.

We were hit with the devastating news that he had CF at tne same time the doctors revealed that he cultured Pseudom. about a month ago. While we were still reeling from the news, learning how to do his treatments twice a day, and trying to wrap our minds around this devastating disease, we got the news that he cultured MRSA. My husband and I felt terrible and really down...it's like the hits kept on coming.

It also didn't help that most people we know have no idea what we were going through --- unless you have a child with CF, most people don't quite understand.

We're now testing our other twin for CF, Psuedom., and MRSA. We're bracing ourselves to start this whole nightmarish rollercoaster ride all over again. It's been tough.

The best you can do is stay as positive as possible; pray; let yourself cry when you want to; and remind yourself everyday how lucky you are to have such a beautiful child to have and hold. Because no matter how difficult the last few weeks have been for us, we feel blessed everyday that we have such amazing, loving babies.

Good luck and know that you're not alone.

twinluv29 · Nov 10, 2009

Hi Sarah. I'm sorry about your little one culturing Pseudom. and MRSA. I know exactly how you feel. One of my twins cultured Pseudom. and MRSA four weeks ago at three months old. He's four months old now and just finished his TOBI/CPT/Albuterol treatments for Pseudom. We went in today to take his first of three cultures to find out if the Pseudom. has been eradicated.

We were hit with the devastating news that he had CF at tne same time the doctors revealed that he cultured Pseudom. about a month ago. While we were still reeling from the news, learning how to do his treatments twice a day, and trying to wrap our minds around this devastating disease, we got the news that he cultured MRSA. My husband and I felt terrible and really down...it's like the hits kept on coming.

It also didn't help that most people we know have no idea what we were going through --- unless you have a child with CF, most people don't quite understand.

We're now testing our other twin for CF, Psuedom., and MRSA. We're bracing ourselves to start this whole nightmarish rollercoaster ride all over again. It's been tough.

The best you can do is stay as positive as possible; pray; let yourself cry when you want to; and remind yourself everyday how lucky you are to have such a beautiful child to have and hold. Because no matter how difficult the last few weeks have been for us, we feel blessed everyday that we have such amazing, loving babies.

Good luck and know that you're not alone.

twinluv29 · Nov 10, 2009

Hi Sarah. I'm sorry about your little one culturing Pseudom. and MRSA. I know exactly how you feel. One of my twins cultured Pseudom. and MRSA four weeks ago at three months old. He's four months old now and just finished his TOBI/CPT/Albuterol treatments for Pseudom. We went in today to take his first of three cultures to find out if the Pseudom. has been eradicated.
 
 We were hit with the devastating news that he had CF at tne same time the doctors revealed that he cultured Pseudom. about a month ago. While we were still reeling from the news, learning how to do his treatments twice a day, and trying to wrap our minds around this devastating disease, we got the news that he cultured MRSA. My husband and I felt terrible and really down...it's like the hits kept on coming.
 
 It also didn't help that most people we know have no idea what we were going through --- unless you have a child with CF, most people don't quite understand.
 
 We're now testing our other twin for CF, Psuedom., and MRSA. We're bracing ourselves to start this whole nightmarish rollercoaster ride all over again. It's been tough.
 
 The best you can do is stay as positive as possible; pray; let yourself cry when you want to; and remind yourself everyday how lucky you are to have such a beautiful child to have and hold. Because no matter how difficult the last few weeks have been for us, we feel blessed everyday that we have such amazing, loving babies.
 
 Good luck and know that you're not alone.

bet10 · Nov 10, 2009

Hi Sarah, I am so so sorry to hear about your little one, but like everyone else has said try and remain as positive as you can - you will get through it and we are all here for you. My five month old little boy cultured Pseudo for the first time 2 weeks ago and it devastated me for a few days. I can honestly say that it was the support and advice of everyone on this board that got me through my bad and sad thoughts. We are all so lucky to have this site and hear the stories of other families who have experienced similar situations to what we are all going through.

Hang in there and keep enjoying your little girl, you will get her through this bump in the road and her fun loving attitude, her cuddles and kisses and fighting spirit will inspire you to continue to be the best Mom ever! She will be okay, sending positive thoughts your way!

Natalie, Mom to Tom w/cf 5 months DDF508 and Jack, 3 no cf

bet10 · Nov 10, 2009

Hi Sarah, I am so so sorry to hear about your little one, but like everyone else has said try and remain as positive as you can - you will get through it and we are all here for you. My five month old little boy cultured Pseudo for the first time 2 weeks ago and it devastated me for a few days. I can honestly say that it was the support and advice of everyone on this board that got me through my bad and sad thoughts. We are all so lucky to have this site and hear the stories of other families who have experienced similar situations to what we are all going through.

Hang in there and keep enjoying your little girl, you will get her through this bump in the road and her fun loving attitude, her cuddles and kisses and fighting spirit will inspire you to continue to be the best Mom ever! She will be okay, sending positive thoughts your way!

Natalie, Mom to Tom w/cf 5 months DDF508 and Jack, 3 no cf

bet10 · Nov 10, 2009

Hi Sarah, I am so so sorry to hear about your little one, but like everyone else has said try and remain as positive as you can - you will get through it and we are all here for you. My five month old little boy cultured Pseudo for the first time 2 weeks ago and it devastated me for a few days. I can honestly say that it was the support and advice of everyone on this board that got me through my bad and sad thoughts. We are all so lucky to have this site and hear the stories of other families who have experienced similar situations to what we are all going through.

Hang in there and keep enjoying your little girl, you will get her through this bump in the road and her fun loving attitude, her cuddles and kisses and fighting spirit will inspire you to continue to be the best Mom ever! She will be okay, sending positive thoughts your way!

Natalie, Mom to Tom w/cf 5 months DDF508 and Jack, 3 no cf

bet10 · Nov 10, 2009

Hi Sarah, I am so so sorry to hear about your little one, but like everyone else has said try and remain as positive as you can - you will get through it and we are all here for you. My five month old little boy cultured Pseudo for the first time 2 weeks ago and it devastated me for a few days. I can honestly say that it was the support and advice of everyone on this board that got me through my bad and sad thoughts. We are all so lucky to have this site and hear the stories of other families who have experienced similar situations to what we are all going through.

Hang in there and keep enjoying your little girl, you will get her through this bump in the road and her fun loving attitude, her cuddles and kisses and fighting spirit will inspire you to continue to be the best Mom ever! She will be okay, sending positive thoughts your way!

Natalie, Mom to Tom w/cf 5 months DDF508 and Jack, 3 no cf

bet10 · Nov 10, 2009

Hi Sarah, I am so so sorry to hear about your little one, but like everyone else has said try and remain as positive as you can - you will get through it and we are all here for you. My five month old little boy cultured Pseudo for the first time 2 weeks ago and it devastated me for a few days. I can honestly say that it was the support and advice of everyone on this board that got me through my bad and sad thoughts. We are all so lucky to have this site and hear the stories of other families who have experienced similar situations to what we are all going through.
 
 Hang in there and keep enjoying your little girl, you will get her through this bump in the road and her fun loving attitude, her cuddles and kisses and fighting spirit will inspire you to continue to be the best Mom ever! She will be okay, sending positive thoughts your way!
 
 Natalie, Mom to Tom w/cf 5 months DDF508 and Jack, 3 no cf

MRSA, Pseudos,

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