3 Year old daughter with CF

B

briellemom

New member
I am writing this because my daughter who is now 3 1/2 years old has been tested for CF for over a year now with still no answers. I was wondering if some of the moms in here with knowledge/personal experience could please give us some insight. In October of 2005 my daughter Delaney had some general tests done because she is very petite and it is hard for her to gain weight. During this testing she cultured positive for Pseudomonas. She also had 2 borderline sweat tests. She was treated with Tobi and the nebulizer for 28 days and has been tested every 3 months since with negative cultures. She has also undergone many many genetic testing to rule out other genetic possibilities. Everything has been negative. They have tested her stool and other digestive tests that are indicative of CF, all of which are normal. I was tested when I was pregnant and am not a carrier. We had extensive genetic testing done on her a year ago that tested many of the mutations for CF; this testing took 3 months for the results, and they came back saying that they are more than 99% sure that she does not have CF and is not a carrier. We finally put all of this behind us and figured that she was fine. However, we kept bringing her back to the CF/Pulmonary specialist every 3 months, for an exam and throat culture. They said they wanted to keep an eye on her. Well, every culture was negative until now. Last week she cultured positive for the Pseudomonas again. She will be starting the Tobi tomorrow. She has no other symptoms--no coughing, no weazing, no fever. The only thing is that she has a poor apetite and gains weight slowly. She has been like that since she was 12 months old.
Needless to say we are very concerned that she is growing this bacteria again. We are thinking it could have something to do with the environment--since the last time she had it was winter too. Does this sound plausible? Any comments/feedback/questions would be welcome!
 
B

briellemom

New member
I am writing this because my daughter who is now 3 1/2 years old has been tested for CF for over a year now with still no answers. I was wondering if some of the moms in here with knowledge/personal experience could please give us some insight. In October of 2005 my daughter Delaney had some general tests done because she is very petite and it is hard for her to gain weight. During this testing she cultured positive for Pseudomonas. She also had 2 borderline sweat tests. She was treated with Tobi and the nebulizer for 28 days and has been tested every 3 months since with negative cultures. She has also undergone many many genetic testing to rule out other genetic possibilities. Everything has been negative. They have tested her stool and other digestive tests that are indicative of CF, all of which are normal. I was tested when I was pregnant and am not a carrier. We had extensive genetic testing done on her a year ago that tested many of the mutations for CF; this testing took 3 months for the results, and they came back saying that they are more than 99% sure that she does not have CF and is not a carrier. We finally put all of this behind us and figured that she was fine. However, we kept bringing her back to the CF/Pulmonary specialist every 3 months, for an exam and throat culture. They said they wanted to keep an eye on her. Well, every culture was negative until now. Last week she cultured positive for the Pseudomonas again. She will be starting the Tobi tomorrow. She has no other symptoms--no coughing, no weazing, no fever. The only thing is that she has a poor apetite and gains weight slowly. She has been like that since she was 12 months old.
Needless to say we are very concerned that she is growing this bacteria again. We are thinking it could have something to do with the environment--since the last time she had it was winter too. Does this sound plausible? Any comments/feedback/questions would be welcome!
 
B

briellemom

New member
I am writing this because my daughter who is now 3 1/2 years old has been tested for CF for over a year now with still no answers. I was wondering if some of the moms in here with knowledge/personal experience could please give us some insight. In October of 2005 my daughter Delaney had some general tests done because she is very petite and it is hard for her to gain weight. During this testing she cultured positive for Pseudomonas. She also had 2 borderline sweat tests. She was treated with Tobi and the nebulizer for 28 days and has been tested every 3 months since with negative cultures. She has also undergone many many genetic testing to rule out other genetic possibilities. Everything has been negative. They have tested her stool and other digestive tests that are indicative of CF, all of which are normal. I was tested when I was pregnant and am not a carrier. We had extensive genetic testing done on her a year ago that tested many of the mutations for CF; this testing took 3 months for the results, and they came back saying that they are more than 99% sure that she does not have CF and is not a carrier. We finally put all of this behind us and figured that she was fine. However, we kept bringing her back to the CF/Pulmonary specialist every 3 months, for an exam and throat culture. They said they wanted to keep an eye on her. Well, every culture was negative until now. Last week she cultured positive for the Pseudomonas again. She will be starting the Tobi tomorrow. She has no other symptoms--no coughing, no weazing, no fever. The only thing is that she has a poor apetite and gains weight slowly. She has been like that since she was 12 months old.
Needless to say we are very concerned that she is growing this bacteria again. We are thinking it could have something to do with the environment--since the last time she had it was winter too. Does this sound plausible? Any comments/feedback/questions would be welcome!
 
D

ddawes27

Guest
Mom,
My son was born a healthy 5 lbs with no complications of CF until last month when he was diagnosed. He is a 32 lb boy who at 5, has never has had any problems, (that we recognized). When he tested positive for the sweat test, I spoke with a girl at work with a 25 year old daughter with CF. She reinforced his diagnosis with me........she asked if he had pale stools, and did they float. She also asked if I NOTICED "grease circles" In the toilet after his BM. These things were all true for him..........Thats my experience..........after that he went to a great, and reputable CF Center at All Children's Hospital. He has a wonderful team looking after his care..........I hope your child has an asthma problem.......otherwise find a CF team!
 
D

ddawes27

Guest
Mom,
My son was born a healthy 5 lbs with no complications of CF until last month when he was diagnosed. He is a 32 lb boy who at 5, has never has had any problems, (that we recognized). When he tested positive for the sweat test, I spoke with a girl at work with a 25 year old daughter with CF. She reinforced his diagnosis with me........she asked if he had pale stools, and did they float. She also asked if I NOTICED "grease circles" In the toilet after his BM. These things were all true for him..........Thats my experience..........after that he went to a great, and reputable CF Center at All Children's Hospital. He has a wonderful team looking after his care..........I hope your child has an asthma problem.......otherwise find a CF team!
 
D

ddawes27

Guest
Mom,
My son was born a healthy 5 lbs with no complications of CF until last month when he was diagnosed. He is a 32 lb boy who at 5, has never has had any problems, (that we recognized). When he tested positive for the sweat test, I spoke with a girl at work with a 25 year old daughter with CF. She reinforced his diagnosis with me........she asked if he had pale stools, and did they float. She also asked if I NOTICED "grease circles" In the toilet after his BM. These things were all true for him..........Thats my experience..........after that he went to a great, and reputable CF Center at All Children's Hospital. He has a wonderful team looking after his care..........I hope your child has an asthma problem.......otherwise find a CF team!
 
B

briar2004

New member
Hi. I am a new mom to the cf thing also . my son was dx w/cf at age 8mnths. Then ending up in the hospital with a+sweat test and +pseudomonas 2 different strands they told me that since he tested + he would allways have it in his lungs.. my point is that every culture has been fine... also i went to a cf meeting in Tulsa Oklahoma and i spoke with a very smart dr there and he told me that only cf people could test+for pseudomas and that only tobi or ticarcillian would be able to kill the bacteria or more less keep it in remission.

So now the ? you need to ask is how your daughter is underweight and tested positive for the pseudomanas but not for the genetic testing or for the sweat test.. this is just so frustrating sometimes b/c I think sometimes as much as my son is so healthy that he just could not have this cf.........

Also you might want to check her bm for any greasy looking stuff and also the smell of her bm people with cf tend to have the worst smelling bm arould......

Also there is a nother disorder called celiac disease i work for a dr and we just had a pt that had some of the symptoms simillar to cf and his was celiac disease ..... You may want to look on line at some of the symptoms to this...

It was very nice hearing you story keep in touch and i will pray for your daughter and family ... You know we sometimes forget that GOD is in control.....

Tish......Birar Oklahoma
 
B

briar2004

New member
Hi. I am a new mom to the cf thing also . my son was dx w/cf at age 8mnths. Then ending up in the hospital with a+sweat test and +pseudomonas 2 different strands they told me that since he tested + he would allways have it in his lungs.. my point is that every culture has been fine... also i went to a cf meeting in Tulsa Oklahoma and i spoke with a very smart dr there and he told me that only cf people could test+for pseudomas and that only tobi or ticarcillian would be able to kill the bacteria or more less keep it in remission.

So now the ? you need to ask is how your daughter is underweight and tested positive for the pseudomanas but not for the genetic testing or for the sweat test.. this is just so frustrating sometimes b/c I think sometimes as much as my son is so healthy that he just could not have this cf.........

Also you might want to check her bm for any greasy looking stuff and also the smell of her bm people with cf tend to have the worst smelling bm arould......

Also there is a nother disorder called celiac disease i work for a dr and we just had a pt that had some of the symptoms simillar to cf and his was celiac disease ..... You may want to look on line at some of the symptoms to this...

It was very nice hearing you story keep in touch and i will pray for your daughter and family ... You know we sometimes forget that GOD is in control.....

Tish......Birar Oklahoma
 
B

briar2004

New member
Hi. I am a new mom to the cf thing also . my son was dx w/cf at age 8mnths. Then ending up in the hospital with a+sweat test and +pseudomonas 2 different strands they told me that since he tested + he would allways have it in his lungs.. my point is that every culture has been fine... also i went to a cf meeting in Tulsa Oklahoma and i spoke with a very smart dr there and he told me that only cf people could test+for pseudomas and that only tobi or ticarcillian would be able to kill the bacteria or more less keep it in remission.

So now the ? you need to ask is how your daughter is underweight and tested positive for the pseudomanas but not for the genetic testing or for the sweat test.. this is just so frustrating sometimes b/c I think sometimes as much as my son is so healthy that he just could not have this cf.........

Also you might want to check her bm for any greasy looking stuff and also the smell of her bm people with cf tend to have the worst smelling bm arould......

Also there is a nother disorder called celiac disease i work for a dr and we just had a pt that had some of the symptoms simillar to cf and his was celiac disease ..... You may want to look on line at some of the symptoms to this...

It was very nice hearing you story keep in touch and i will pray for your daughter and family ... You know we sometimes forget that GOD is in control.....

Tish......Birar Oklahoma
 
A

Alyssa

New member
Hello and welcome to the site. Check out the link in my signature line for info about borderline sweat test numbers.

You are not alone when it comes to not being able to find one or both CF gene but yet still present with some of the more common symptoms of CF. Be very thankful that the docs from the CF are willing to treat and follow your daughter. Treating her with Tobi and such will be helpful weather or not she actually has CF.

I have just a couple of suggestions - you may have already done this but my first thought was to double check your "extensive genetic testing" Ask for the paperwork and make sure they really tested for ALL known CF gene mutations -- even a year ago that should have been somewhere in the neighborhood of 1300-1400 mutations. And that test should have been done by one of the two main companies who do that kind of testing either Ambry or Quest. Some doctors/insurance companies tell the parents they are doing genetic testing, but in reality they have done "genetic testing" but they are testing for 100 or fewer genes.

If in fact your daughter did receive testing for ALL genes, there is one more test that has fairly good accuracy when sweat testing and genetic testing prove negative or inconclusive. This test is not as pleasant as a blood draw or a sweat test and isn't widely available, but you could ask about getting a Nasal Potential Test. To quote from this website:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/ency/healthwise/aa33691
">http://health.yahoo.com/ency/healthwise/aa33691
</a>
The nasal potential difference test (nasal PD test) measures how well salts (sodium and chloride) flow across the mucous membranes in the nose. This type of test can be helpful when the results of a sweat test or a genetic test are not clear.

Here is another link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ionchannels.org/showabstract.php?pmid=16426521
">http://www.ionchannels.org/sho...act.php?pmid=16426521
</a>
If it were me, I'd be asking if this is a possibility for your daughter. But even if it is available you will have to consider her comfort during the procedure. They have to put a small tube high up into the nose, then slowly drip saline back out of the nose. A very small needle is inserted in the arm -- probably not terribly painful, just a stick like a blood draw. But its the waiting around with a dripping nose that will probably be irritating :) It is my understanding this can take 15-30 minutes to do.

Best of luck and be sure to keep us posted.
 
A

Alyssa

New member
Hello and welcome to the site. Check out the link in my signature line for info about borderline sweat test numbers.

You are not alone when it comes to not being able to find one or both CF gene but yet still present with some of the more common symptoms of CF. Be very thankful that the docs from the CF are willing to treat and follow your daughter. Treating her with Tobi and such will be helpful weather or not she actually has CF.

I have just a couple of suggestions - you may have already done this but my first thought was to double check your "extensive genetic testing" Ask for the paperwork and make sure they really tested for ALL known CF gene mutations -- even a year ago that should have been somewhere in the neighborhood of 1300-1400 mutations. And that test should have been done by one of the two main companies who do that kind of testing either Ambry or Quest. Some doctors/insurance companies tell the parents they are doing genetic testing, but in reality they have done "genetic testing" but they are testing for 100 or fewer genes.

If in fact your daughter did receive testing for ALL genes, there is one more test that has fairly good accuracy when sweat testing and genetic testing prove negative or inconclusive. This test is not as pleasant as a blood draw or a sweat test and isn't widely available, but you could ask about getting a Nasal Potential Test. To quote from this website:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/ency/healthwise/aa33691
">http://health.yahoo.com/ency/healthwise/aa33691
</a>
The nasal potential difference test (nasal PD test) measures how well salts (sodium and chloride) flow across the mucous membranes in the nose. This type of test can be helpful when the results of a sweat test or a genetic test are not clear.

Here is another link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ionchannels.org/showabstract.php?pmid=16426521
">http://www.ionchannels.org/sho...act.php?pmid=16426521
</a>
If it were me, I'd be asking if this is a possibility for your daughter. But even if it is available you will have to consider her comfort during the procedure. They have to put a small tube high up into the nose, then slowly drip saline back out of the nose. A very small needle is inserted in the arm -- probably not terribly painful, just a stick like a blood draw. But its the waiting around with a dripping nose that will probably be irritating :) It is my understanding this can take 15-30 minutes to do.

Best of luck and be sure to keep us posted.
 
A

Alyssa

New member
Hello and welcome to the site. Check out the link in my signature line for info about borderline sweat test numbers.

You are not alone when it comes to not being able to find one or both CF gene but yet still present with some of the more common symptoms of CF. Be very thankful that the docs from the CF are willing to treat and follow your daughter. Treating her with Tobi and such will be helpful weather or not she actually has CF.

I have just a couple of suggestions - you may have already done this but my first thought was to double check your "extensive genetic testing" Ask for the paperwork and make sure they really tested for ALL known CF gene mutations -- even a year ago that should have been somewhere in the neighborhood of 1300-1400 mutations. And that test should have been done by one of the two main companies who do that kind of testing either Ambry or Quest. Some doctors/insurance companies tell the parents they are doing genetic testing, but in reality they have done "genetic testing" but they are testing for 100 or fewer genes.

If in fact your daughter did receive testing for ALL genes, there is one more test that has fairly good accuracy when sweat testing and genetic testing prove negative or inconclusive. This test is not as pleasant as a blood draw or a sweat test and isn't widely available, but you could ask about getting a Nasal Potential Test. To quote from this website:

<a target=_blank class=ftalternatingbarlinklarge href="http://health.yahoo.com/ency/healthwise/aa33691
">http://health.yahoo.com/ency/healthwise/aa33691
</a>
The nasal potential difference test (nasal PD test) measures how well salts (sodium and chloride) flow across the mucous membranes in the nose. This type of test can be helpful when the results of a sweat test or a genetic test are not clear.

Here is another link:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ionchannels.org/showabstract.php?pmid=16426521
">http://www.ionchannels.org/sho...act.php?pmid=16426521
</a>
If it were me, I'd be asking if this is a possibility for your daughter. But even if it is available you will have to consider her comfort during the procedure. They have to put a small tube high up into the nose, then slowly drip saline back out of the nose. A very small needle is inserted in the arm -- probably not terribly painful, just a stick like a blood draw. But its the waiting around with a dripping nose that will probably be irritating :) It is my understanding this can take 15-30 minutes to do.

Best of luck and be sure to keep us posted.
 
A

Alyssa

New member
Oh, and to answer your question about is it plausible to get PA in the winter time -- of course! Many people get more infections in the winter because of the general cold virus being passed around more in the winter time (a lot of time a lung infection starts with just a cold but eventually moves into the lungs), less fresh air, people are staying indoors more etc etc. But it's not a hard and fast rule -- my daughter's first (and only so far) PA infection came on in June, but most of her staph infections happen in the winter. Generally speaking people with CF have lungs that are more susceptible to "hosting" the bacteria.... the little buggers just find it so easy to set up housekeeping in there :)

Most of the time my daughter does not have a cough unless she has an infection causing extra mucus (causing the cough) But everyone's case is different - some people are almost always on antibiotic, some always have a cough/mucus but only treat with antibiotic when the bacterial count gets really high, and some people are like my daughter and only treat with antibiotics when she has a productive cough going on. This can be cultured and the correct antibiotics started.
 
A

Alyssa

New member
Oh, and to answer your question about is it plausible to get PA in the winter time -- of course! Many people get more infections in the winter because of the general cold virus being passed around more in the winter time (a lot of time a lung infection starts with just a cold but eventually moves into the lungs), less fresh air, people are staying indoors more etc etc. But it's not a hard and fast rule -- my daughter's first (and only so far) PA infection came on in June, but most of her staph infections happen in the winter. Generally speaking people with CF have lungs that are more susceptible to "hosting" the bacteria.... the little buggers just find it so easy to set up housekeeping in there :)

Most of the time my daughter does not have a cough unless she has an infection causing extra mucus (causing the cough) But everyone's case is different - some people are almost always on antibiotic, some always have a cough/mucus but only treat with antibiotic when the bacterial count gets really high, and some people are like my daughter and only treat with antibiotics when she has a productive cough going on. This can be cultured and the correct antibiotics started.
 
A

Alyssa

New member
Oh, and to answer your question about is it plausible to get PA in the winter time -- of course! Many people get more infections in the winter because of the general cold virus being passed around more in the winter time (a lot of time a lung infection starts with just a cold but eventually moves into the lungs), less fresh air, people are staying indoors more etc etc. But it's not a hard and fast rule -- my daughter's first (and only so far) PA infection came on in June, but most of her staph infections happen in the winter. Generally speaking people with CF have lungs that are more susceptible to "hosting" the bacteria.... the little buggers just find it so easy to set up housekeeping in there :)

Most of the time my daughter does not have a cough unless she has an infection causing extra mucus (causing the cough) But everyone's case is different - some people are almost always on antibiotic, some always have a cough/mucus but only treat with antibiotic when the bacterial count gets really high, and some people are like my daughter and only treat with antibiotics when she has a productive cough going on. This can be cultured and the correct antibiotics started.
 
C

chrissylou32

New member
You mentioned celiac disease. My daughter has a genetic marker for this, and she's being tested for cf via blood tests( she would not sweat for the sweat test). She did however test positive of pseudomonas during a broncho scope brought on by a recent hospital stay for pneumonia. She's 11 yrs old and has cerebal palsy....and we have never had a pulmonologist til now. My question is, can you find pseudomonas in children with celiac disease? Does psedomonas occur in children that do not have cf? I know you said that the doc told you pseudomonas = cf, but has anyone heard of aquiring this type of bacteria outside of cf? Thanks so much.
 
C

chrissylou32

New member
You mentioned celiac disease. My daughter has a genetic marker for this, and she's being tested for cf via blood tests( she would not sweat for the sweat test). She did however test positive of pseudomonas during a broncho scope brought on by a recent hospital stay for pneumonia. She's 11 yrs old and has cerebal palsy....and we have never had a pulmonologist til now. My question is, can you find pseudomonas in children with celiac disease? Does psedomonas occur in children that do not have cf? I know you said that the doc told you pseudomonas = cf, but has anyone heard of aquiring this type of bacteria outside of cf? Thanks so much.
 
C

chrissylou32

New member
You mentioned celiac disease. My daughter has a genetic marker for this, and she's being tested for cf via blood tests( she would not sweat for the sweat test). She did however test positive of pseudomonas during a broncho scope brought on by a recent hospital stay for pneumonia. She's 11 yrs old and has cerebal palsy....and we have never had a pulmonologist til now. My question is, can you find pseudomonas in children with celiac disease? Does psedomonas occur in children that do not have cf? I know you said that the doc told you pseudomonas = cf, but has anyone heard of aquiring this type of bacteria outside of cf? Thanks so much.
 
L

Liamsmommy

New member
I was doing some resurch on the net about pseudomonas and basicaly anyone with a weakened immune system can get this.
This is from
<a target=_blank class=ftalternatingbarlinklarge href="http://www.merck.com/mmhe/sec17/ch190/ch190o.html
">http://www.merck.com/mmhe/sec1...190/ch190o.html
</a>

"Pseudomonas can cause minor skin infection or serious, life-threatening illness. The most serious infections from Pseudomonas develop in debilitated and hospitalized people, particularly those with a weakened immune system. People with diabetes are particularly prone to Pseudomonas infections. Pseudomonas can infect the blood, skin, bones, ears, eyes, urinary tract, heart valves, and lungs"

I found alot of supporting medical web sites that also state that anyone can get this and that its mainly seen in people that have a weakened immune system I also found that people with CF are at a high risk of getting this becuase of there lungs not being as storng.
I hope this helps
Shawna
 
L

Liamsmommy

New member
I was doing some resurch on the net about pseudomonas and basicaly anyone with a weakened immune system can get this.
This is from
<a target=_blank class=ftalternatingbarlinklarge href="http://www.merck.com/mmhe/sec17/ch190/ch190o.html
">http://www.merck.com/mmhe/sec1...190/ch190o.html
</a>

"Pseudomonas can cause minor skin infection or serious, life-threatening illness. The most serious infections from Pseudomonas develop in debilitated and hospitalized people, particularly those with a weakened immune system. People with diabetes are particularly prone to Pseudomonas infections. Pseudomonas can infect the blood, skin, bones, ears, eyes, urinary tract, heart valves, and lungs"

I found alot of supporting medical web sites that also state that anyone can get this and that its mainly seen in people that have a weakened immune system I also found that people with CF are at a high risk of getting this becuase of there lungs not being as storng.
I hope this helps
Shawna
 
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