Pseudomonas?

kale65 · Oct 30, 2007

My daughter Kale was born June 20, 2007. She was diagnosed through a newborn screening 1 week after she was born. She has two Delta F 508 genes. I'm still learning what that means, but some help would be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Her pancreas was found to be insufficient and she has been taking enzymes since she was two weeks old. Because of that she has been growing great, (top 65% for weight and and 75% for length). The doctors at our CF clinic haven't suggested started any physical therapy with her and we do not see a GI doctor. She takes vitamins, but not vitamins that are prescribed to CF patients, just regular old ones that I buy at WalMart. Basically, she has not had many symptoms, so I dreaded the day that she would...
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.

P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?

------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE

kale65 · Oct 30, 2007

My daughter Kale was born June 20, 2007. She was diagnosed through a newborn screening 1 week after she was born. She has two Delta F 508 genes. I'm still learning what that means, but some help would be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Her pancreas was found to be insufficient and she has been taking enzymes since she was two weeks old. Because of that she has been growing great, (top 65% for weight and and 75% for length). The doctors at our CF clinic haven't suggested started any physical therapy with her and we do not see a GI doctor. She takes vitamins, but not vitamins that are prescribed to CF patients, just regular old ones that I buy at WalMart. Basically, she has not had many symptoms, so I dreaded the day that she would...
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.

P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?

------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE

kale65 · Oct 30, 2007

My daughter Kale was born June 20, 2007. She was diagnosed through a newborn screening 1 week after she was born. She has two Delta F 508 genes. I'm still learning what that means, but some help would be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Her pancreas was found to be insufficient and she has been taking enzymes since she was two weeks old. Because of that she has been growing great, (top 65% for weight and and 75% for length). The doctors at our CF clinic haven't suggested started any physical therapy with her and we do not see a GI doctor. She takes vitamins, but not vitamins that are prescribed to CF patients, just regular old ones that I buy at WalMart. Basically, she has not had many symptoms, so I dreaded the day that she would...
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.

P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?

------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE

kale65 · Oct 30, 2007

My daughter Kale was born June 20, 2007. She was diagnosed through a newborn screening 1 week after she was born. She has two Delta F 508 genes. I'm still learning what that means, but some help would be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Her pancreas was found to be insufficient and she has been taking enzymes since she was two weeks old. Because of that she has been growing great, (top 65% for weight and and 75% for length). The doctors at our CF clinic haven't suggested started any physical therapy with her and we do not see a GI doctor. She takes vitamins, but not vitamins that are prescribed to CF patients, just regular old ones that I buy at WalMart. Basically, she has not had many symptoms, so I dreaded the day that she would...
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.

P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?

------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE

kale65 · Oct 30, 2007

My daughter Kale was born June 20, 2007. She was diagnosed through a newborn screening 1 week after she was born. She has two Delta F 508 genes. I'm still learning what that means, but some help would be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Her pancreas was found to be insufficient and she has been taking enzymes since she was two weeks old. Because of that she has been growing great, (top 65% for weight and and 75% for length). The doctors at our CF clinic haven't suggested started any physical therapy with her and we do not see a GI doctor. She takes vitamins, but not vitamins that are prescribed to CF patients, just regular old ones that I buy at WalMart. Basically, she has not had many symptoms, so I dreaded the day that she would...
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.

P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?

------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE

Alyssa · Oct 30, 2007

With regard to the pseudomonas - You did not do anything wrong! Yes it is pretty common even at a young age - no it's not always an indicator of how severe her case might be - it is possible she will clear it after treatment and not see it again for many many years. It's also possible she will hang onto it for years to come and still not be considered a severe case. Don't get too wrapped up in trying to predict the future - all you can do is treat each thing that comes along as best you can. It's scary, but that's all I can say -- hang in there.

I'm sure it's probably worse for a mother when they are just little babies, but for what it's worth, my daughter wasn't diagnosed until she was 14 years old, then got her first pseudomonas infection a couple of years later - it was very scary for me too, but she has not cultured it again now for about 3 years or more. So you just never know.

About the dog -- it shouldn't make a difference for her CF per se, except and/or unless she also has allergies to dogs. Allergies and asthma do often time accompany CF, and can be difficult to sort out one from the other, but unless your house is filthy because of the dog and until you know if she is allergic, your husband might win on that argument

Oh... now that you mention constantly cleaning.... do be mindful of the cleaning products (fumes) that you use - they could be harder on the lungs than the dirt. Hopefully you can strike a compromise that will make you happy.

Alyssa · Oct 30, 2007

With regard to the pseudomonas - You did not do anything wrong! Yes it is pretty common even at a young age - no it's not always an indicator of how severe her case might be - it is possible she will clear it after treatment and not see it again for many many years. It's also possible she will hang onto it for years to come and still not be considered a severe case. Don't get too wrapped up in trying to predict the future - all you can do is treat each thing that comes along as best you can. It's scary, but that's all I can say -- hang in there.

I'm sure it's probably worse for a mother when they are just little babies, but for what it's worth, my daughter wasn't diagnosed until she was 14 years old, then got her first pseudomonas infection a couple of years later - it was very scary for me too, but she has not cultured it again now for about 3 years or more. So you just never know.

About the dog -- it shouldn't make a difference for her CF per se, except and/or unless she also has allergies to dogs. Allergies and asthma do often time accompany CF, and can be difficult to sort out one from the other, but unless your house is filthy because of the dog and until you know if she is allergic, your husband might win on that argument

Oh... now that you mention constantly cleaning.... do be mindful of the cleaning products (fumes) that you use - they could be harder on the lungs than the dirt. Hopefully you can strike a compromise that will make you happy.

Alyssa · Oct 30, 2007

With regard to the pseudomonas - You did not do anything wrong! Yes it is pretty common even at a young age - no it's not always an indicator of how severe her case might be - it is possible she will clear it after treatment and not see it again for many many years. It's also possible she will hang onto it for years to come and still not be considered a severe case. Don't get too wrapped up in trying to predict the future - all you can do is treat each thing that comes along as best you can. It's scary, but that's all I can say -- hang in there.

I'm sure it's probably worse for a mother when they are just little babies, but for what it's worth, my daughter wasn't diagnosed until she was 14 years old, then got her first pseudomonas infection a couple of years later - it was very scary for me too, but she has not cultured it again now for about 3 years or more. So you just never know.

About the dog -- it shouldn't make a difference for her CF per se, except and/or unless she also has allergies to dogs. Allergies and asthma do often time accompany CF, and can be difficult to sort out one from the other, but unless your house is filthy because of the dog and until you know if she is allergic, your husband might win on that argument

Oh... now that you mention constantly cleaning.... do be mindful of the cleaning products (fumes) that you use - they could be harder on the lungs than the dirt. Hopefully you can strike a compromise that will make you happy.

Alyssa · Oct 30, 2007

With regard to the pseudomonas - You did not do anything wrong! Yes it is pretty common even at a young age - no it's not always an indicator of how severe her case might be - it is possible she will clear it after treatment and not see it again for many many years. It's also possible she will hang onto it for years to come and still not be considered a severe case. Don't get too wrapped up in trying to predict the future - all you can do is treat each thing that comes along as best you can. It's scary, but that's all I can say -- hang in there.

I'm sure it's probably worse for a mother when they are just little babies, but for what it's worth, my daughter wasn't diagnosed until she was 14 years old, then got her first pseudomonas infection a couple of years later - it was very scary for me too, but she has not cultured it again now for about 3 years or more. So you just never know.

About the dog -- it shouldn't make a difference for her CF per se, except and/or unless she also has allergies to dogs. Allergies and asthma do often time accompany CF, and can be difficult to sort out one from the other, but unless your house is filthy because of the dog and until you know if she is allergic, your husband might win on that argument

Oh... now that you mention constantly cleaning.... do be mindful of the cleaning products (fumes) that you use - they could be harder on the lungs than the dirt. Hopefully you can strike a compromise that will make you happy.

Alyssa · Oct 30, 2007

With regard to the pseudomonas - You did not do anything wrong! Yes it is pretty common even at a young age - no it's not always an indicator of how severe her case might be - it is possible she will clear it after treatment and not see it again for many many years. It's also possible she will hang onto it for years to come and still not be considered a severe case. Don't get too wrapped up in trying to predict the future - all you can do is treat each thing that comes along as best you can. It's scary, but that's all I can say -- hang in there.

I'm sure it's probably worse for a mother when they are just little babies, but for what it's worth, my daughter wasn't diagnosed until she was 14 years old, then got her first pseudomonas infection a couple of years later - it was very scary for me too, but she has not cultured it again now for about 3 years or more. So you just never know.

About the dog -- it shouldn't make a difference for her CF per se, except and/or unless she also has allergies to dogs. Allergies and asthma do often time accompany CF, and can be difficult to sort out one from the other, but unless your house is filthy because of the dog and until you know if she is allergic, your husband might win on that argument

Oh... now that you mention constantly cleaning.... do be mindful of the cleaning products (fumes) that you use - they could be harder on the lungs than the dirt. Hopefully you can strike a compromise that will make you happy.

Mommafirst · Oct 30, 2007

Pseudomonas sucks and is scary, but it wasn't your fault. There have been lots of young babies on this board that have cultured it, cleared it and some did or didn't see it again. Its just one of those things that is part of CF. All of this is so new to you, I can completely understand how the culture would send you back to step one. Sounds like you are doing everything you can. I know that its hard to see forward when they are sooo young and that is ALL you want to know, that your darling daughter will be ok. It gets a little easier as they develop a bit. Hang in there, my 22 month old is a very normal joyous toddler.

Mommafirst · Oct 30, 2007

Pseudomonas sucks and is scary, but it wasn't your fault. There have been lots of young babies on this board that have cultured it, cleared it and some did or didn't see it again. Its just one of those things that is part of CF. All of this is so new to you, I can completely understand how the culture would send you back to step one. Sounds like you are doing everything you can. I know that its hard to see forward when they are sooo young and that is ALL you want to know, that your darling daughter will be ok. It gets a little easier as they develop a bit. Hang in there, my 22 month old is a very normal joyous toddler.

Mommafirst · Oct 30, 2007

Pseudomonas sucks and is scary, but it wasn't your fault. There have been lots of young babies on this board that have cultured it, cleared it and some did or didn't see it again. Its just one of those things that is part of CF. All of this is so new to you, I can completely understand how the culture would send you back to step one. Sounds like you are doing everything you can. I know that its hard to see forward when they are sooo young and that is ALL you want to know, that your darling daughter will be ok. It gets a little easier as they develop a bit. Hang in there, my 22 month old is a very normal joyous toddler.

Mommafirst · Oct 30, 2007

Pseudomonas sucks and is scary, but it wasn't your fault. There have been lots of young babies on this board that have cultured it, cleared it and some did or didn't see it again. Its just one of those things that is part of CF. All of this is so new to you, I can completely understand how the culture would send you back to step one. Sounds like you are doing everything you can. I know that its hard to see forward when they are sooo young and that is ALL you want to know, that your darling daughter will be ok. It gets a little easier as they develop a bit. Hang in there, my 22 month old is a very normal joyous toddler.

Mommafirst · Oct 30, 2007

Pseudomonas sucks and is scary, but it wasn't your fault. There have been lots of young babies on this board that have cultured it, cleared it and some did or didn't see it again. Its just one of those things that is part of CF. All of this is so new to you, I can completely understand how the culture would send you back to step one. Sounds like you are doing everything you can. I know that its hard to see forward when they are sooo young and that is ALL you want to know, that your darling daughter will be ok. It gets a little easier as they develop a bit. Hang in there, my 22 month old is a very normal joyous toddler.

Ratatosk · Oct 30, 2007

DS has the same mutations -- homozygous (two copies) of delta 508. Was diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. We've been doing Chest physiotherapy (CPT) now the vest since he was a few days old 3-4 times a day with nebulized bronchiodialators (duoneb). He's on AquaAdeks vitamins. When we had issues trying to get regular adeks when he was a few months old, his dietician indicated that baby vitamins lack the zinc and additional fat soluble vitamins that CFers need.

DS is pancreatic insufficient, so he needs enzymes. He cultured pseudo when he was about 3 months old and has been on tobi every since.

We have a dog. Can't stand the hair either, but it motivates me to sweep/vacuum a little more often. DS LOVES his furry brudder <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS first cultured pseudo, it really brought home the fact that he had CF. Prior to that I was pretty much in denial. Figured it was all a big mistake and eventually someone would tell us the diagnosis was all wrong. I still feel that way when another drug is added. He had a cough a couple weeks ago and his doctor added another antibiotic for a month

Ratatosk · Oct 30, 2007

DS has the same mutations -- homozygous (two copies) of delta 508. Was diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. We've been doing Chest physiotherapy (CPT) now the vest since he was a few days old 3-4 times a day with nebulized bronchiodialators (duoneb). He's on AquaAdeks vitamins. When we had issues trying to get regular adeks when he was a few months old, his dietician indicated that baby vitamins lack the zinc and additional fat soluble vitamins that CFers need.

DS is pancreatic insufficient, so he needs enzymes. He cultured pseudo when he was about 3 months old and has been on tobi every since.

We have a dog. Can't stand the hair either, but it motivates me to sweep/vacuum a little more often. DS LOVES his furry brudder <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS first cultured pseudo, it really brought home the fact that he had CF. Prior to that I was pretty much in denial. Figured it was all a big mistake and eventually someone would tell us the diagnosis was all wrong. I still feel that way when another drug is added. He had a cough a couple weeks ago and his doctor added another antibiotic for a month

Ratatosk · Oct 30, 2007

DS has the same mutations -- homozygous (two copies) of delta 508. Was diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. We've been doing Chest physiotherapy (CPT) now the vest since he was a few days old 3-4 times a day with nebulized bronchiodialators (duoneb). He's on AquaAdeks vitamins. When we had issues trying to get regular adeks when he was a few months old, his dietician indicated that baby vitamins lack the zinc and additional fat soluble vitamins that CFers need.

DS is pancreatic insufficient, so he needs enzymes. He cultured pseudo when he was about 3 months old and has been on tobi every since.

We have a dog. Can't stand the hair either, but it motivates me to sweep/vacuum a little more often. DS LOVES his furry brudder <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS first cultured pseudo, it really brought home the fact that he had CF. Prior to that I was pretty much in denial. Figured it was all a big mistake and eventually someone would tell us the diagnosis was all wrong. I still feel that way when another drug is added. He had a cough a couple weeks ago and his doctor added another antibiotic for a month

Ratatosk · Oct 30, 2007

DS has the same mutations -- homozygous (two copies) of delta 508. Was diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. We've been doing Chest physiotherapy (CPT) now the vest since he was a few days old 3-4 times a day with nebulized bronchiodialators (duoneb). He's on AquaAdeks vitamins. When we had issues trying to get regular adeks when he was a few months old, his dietician indicated that baby vitamins lack the zinc and additional fat soluble vitamins that CFers need.

DS is pancreatic insufficient, so he needs enzymes. He cultured pseudo when he was about 3 months old and has been on tobi every since.

We have a dog. Can't stand the hair either, but it motivates me to sweep/vacuum a little more often. DS LOVES his furry brudder <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS first cultured pseudo, it really brought home the fact that he had CF. Prior to that I was pretty much in denial. Figured it was all a big mistake and eventually someone would tell us the diagnosis was all wrong. I still feel that way when another drug is added. He had a cough a couple weeks ago and his doctor added another antibiotic for a month

Ratatosk · Oct 30, 2007

DS has the same mutations -- homozygous (two copies) of delta 508. Was diagnosed shortly after he was born because of a bowel obstruction caused by meconium illeus. We've been doing Chest physiotherapy (CPT) now the vest since he was a few days old 3-4 times a day with nebulized bronchiodialators (duoneb). He's on AquaAdeks vitamins. When we had issues trying to get regular adeks when he was a few months old, his dietician indicated that baby vitamins lack the zinc and additional fat soluble vitamins that CFers need.

DS is pancreatic insufficient, so he needs enzymes. He cultured pseudo when he was about 3 months old and has been on tobi every since.

We have a dog. Can't stand the hair either, but it motivates me to sweep/vacuum a little more often. DS LOVES his furry brudder <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS first cultured pseudo, it really brought home the fact that he had CF. Prior to that I was pretty much in denial. Figured it was all a big mistake and eventually someone would tell us the diagnosis was all wrong. I still feel that way when another drug is added. He had a cough a couple weeks ago and his doctor added another antibiotic for a month

Pseudomonas?

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