Does this sound like CF?

dnice

New member
Hello,

I will give you a rundown on my son to see what you think.

He had RSV as a baby with frequent upper resp. infections as a toddler. When he was 4, he had pneumonia once and then twice when he was 5. These pneumonias were during cold and flu season. The only time of the year he really gets sick. He never coughs any other time of the year. He is 6 1/2 now.

At that point, we went to a pulmonologist. This wonderful doctor started him on preventative meds and diagnosed him with reactive airway disease. First it was xopenex and pulmocort twice a day. Worked like a charm. Then, in July, we switched to Symbicort twice a day, which also worked great.

My son went 9 months without a single problem, and then came down with bronchitis this week. The doctor was happy that he had gone so long. Not a single cough or anything for the 9 months prior.

In July, we also had some blood tests done. He had no immunity to pneumonia, so he had the pneumonia shot they give senior citizens. They rechecked him after the shot and he now has strong immunity. They also tested his immune system. It all came back late although he was a bit low (97 when normal is 100) for mannose binding protein/lectin. He now takes a preventative zithromax to boost his immune system during cold & flu season. The doctor says he often sees kids outgrow this immune issue and they only need the prventative perhaps one or two years.

The latest news is that he fell a bit off his growth curve. I will preface to say that both sides of the family are very short. He has been around the 5% for height and weight and loses some weight when sick. At this week's appointment, he had lost a bit of weight since July and had only grown 1/2 cm. Now he's more like the 2%. I'm concerned about his height now - not so much the weight because he was just sick. I wonder if it is from the Symbicort - slow growth is listed as a possible side effect. His stools are normal - not greasy, they do not float, not runny. He is not a big eater.

So, what do you think.
 

dnice

New member
Hello,

I will give you a rundown on my son to see what you think.

He had RSV as a baby with frequent upper resp. infections as a toddler. When he was 4, he had pneumonia once and then twice when he was 5. These pneumonias were during cold and flu season. The only time of the year he really gets sick. He never coughs any other time of the year. He is 6 1/2 now.

At that point, we went to a pulmonologist. This wonderful doctor started him on preventative meds and diagnosed him with reactive airway disease. First it was xopenex and pulmocort twice a day. Worked like a charm. Then, in July, we switched to Symbicort twice a day, which also worked great.

My son went 9 months without a single problem, and then came down with bronchitis this week. The doctor was happy that he had gone so long. Not a single cough or anything for the 9 months prior.

In July, we also had some blood tests done. He had no immunity to pneumonia, so he had the pneumonia shot they give senior citizens. They rechecked him after the shot and he now has strong immunity. They also tested his immune system. It all came back late although he was a bit low (97 when normal is 100) for mannose binding protein/lectin. He now takes a preventative zithromax to boost his immune system during cold & flu season. The doctor says he often sees kids outgrow this immune issue and they only need the prventative perhaps one or two years.

The latest news is that he fell a bit off his growth curve. I will preface to say that both sides of the family are very short. He has been around the 5% for height and weight and loses some weight when sick. At this week's appointment, he had lost a bit of weight since July and had only grown 1/2 cm. Now he's more like the 2%. I'm concerned about his height now - not so much the weight because he was just sick. I wonder if it is from the Symbicort - slow growth is listed as a possible side effect. His stools are normal - not greasy, they do not float, not runny. He is not a big eater.

So, what do you think.
 

dnice

New member
Hello,

I will give you a rundown on my son to see what you think.

He had RSV as a baby with frequent upper resp. infections as a toddler. When he was 4, he had pneumonia once and then twice when he was 5. These pneumonias were during cold and flu season. The only time of the year he really gets sick. He never coughs any other time of the year. He is 6 1/2 now.

At that point, we went to a pulmonologist. This wonderful doctor started him on preventative meds and diagnosed him with reactive airway disease. First it was xopenex and pulmocort twice a day. Worked like a charm. Then, in July, we switched to Symbicort twice a day, which also worked great.

My son went 9 months without a single problem, and then came down with bronchitis this week. The doctor was happy that he had gone so long. Not a single cough or anything for the 9 months prior.

In July, we also had some blood tests done. He had no immunity to pneumonia, so he had the pneumonia shot they give senior citizens. They rechecked him after the shot and he now has strong immunity. They also tested his immune system. It all came back late although he was a bit low (97 when normal is 100) for mannose binding protein/lectin. He now takes a preventative zithromax to boost his immune system during cold & flu season. The doctor says he often sees kids outgrow this immune issue and they only need the prventative perhaps one or two years.

The latest news is that he fell a bit off his growth curve. I will preface to say that both sides of the family are very short. He has been around the 5% for height and weight and loses some weight when sick. At this week's appointment, he had lost a bit of weight since July and had only grown 1/2 cm. Now he's more like the 2%. I'm concerned about his height now - not so much the weight because he was just sick. I wonder if it is from the Symbicort - slow growth is listed as a possible side effect. His stools are normal - not greasy, they do not float, not runny. He is not a big eater.

So, what do you think.
 

dnice

New member
Hello,

I will give you a rundown on my son to see what you think.

He had RSV as a baby with frequent upper resp. infections as a toddler. When he was 4, he had pneumonia once and then twice when he was 5. These pneumonias were during cold and flu season. The only time of the year he really gets sick. He never coughs any other time of the year. He is 6 1/2 now.

At that point, we went to a pulmonologist. This wonderful doctor started him on preventative meds and diagnosed him with reactive airway disease. First it was xopenex and pulmocort twice a day. Worked like a charm. Then, in July, we switched to Symbicort twice a day, which also worked great.

My son went 9 months without a single problem, and then came down with bronchitis this week. The doctor was happy that he had gone so long. Not a single cough or anything for the 9 months prior.

In July, we also had some blood tests done. He had no immunity to pneumonia, so he had the pneumonia shot they give senior citizens. They rechecked him after the shot and he now has strong immunity. They also tested his immune system. It all came back late although he was a bit low (97 when normal is 100) for mannose binding protein/lectin. He now takes a preventative zithromax to boost his immune system during cold & flu season. The doctor says he often sees kids outgrow this immune issue and they only need the prventative perhaps one or two years.

The latest news is that he fell a bit off his growth curve. I will preface to say that both sides of the family are very short. He has been around the 5% for height and weight and loses some weight when sick. At this week's appointment, he had lost a bit of weight since July and had only grown 1/2 cm. Now he's more like the 2%. I'm concerned about his height now - not so much the weight because he was just sick. I wonder if it is from the Symbicort - slow growth is listed as a possible side effect. His stools are normal - not greasy, they do not float, not runny. He is not a big eater.

So, what do you think.
 

dnice

New member
Hello,
<br />
<br />I will give you a rundown on my son to see what you think.
<br />
<br />He had RSV as a baby with frequent upper resp. infections as a toddler. When he was 4, he had pneumonia once and then twice when he was 5. These pneumonias were during cold and flu season. The only time of the year he really gets sick. He never coughs any other time of the year. He is 6 1/2 now.
<br />
<br />At that point, we went to a pulmonologist. This wonderful doctor started him on preventative meds and diagnosed him with reactive airway disease. First it was xopenex and pulmocort twice a day. Worked like a charm. Then, in July, we switched to Symbicort twice a day, which also worked great.
<br />
<br />My son went 9 months without a single problem, and then came down with bronchitis this week. The doctor was happy that he had gone so long. Not a single cough or anything for the 9 months prior.
<br />
<br />In July, we also had some blood tests done. He had no immunity to pneumonia, so he had the pneumonia shot they give senior citizens. They rechecked him after the shot and he now has strong immunity. They also tested his immune system. It all came back late although he was a bit low (97 when normal is 100) for mannose binding protein/lectin. He now takes a preventative zithromax to boost his immune system during cold & flu season. The doctor says he often sees kids outgrow this immune issue and they only need the prventative perhaps one or two years.
<br />
<br />The latest news is that he fell a bit off his growth curve. I will preface to say that both sides of the family are very short. He has been around the 5% for height and weight and loses some weight when sick. At this week's appointment, he had lost a bit of weight since July and had only grown 1/2 cm. Now he's more like the 2%. I'm concerned about his height now - not so much the weight because he was just sick. I wonder if it is from the Symbicort - slow growth is listed as a possible side effect. His stools are normal - not greasy, they do not float, not runny. He is not a big eater.
<br />
<br />So, what do you think.
 

just1more

New member
Ok, I'm gonna take a stab.

My gut tells me the likelihood of classic CF is low. While every patient w/ CF presents differently, the symptoms you list could have several sources. Among them being that the meds you discuss working are all asthma drugs. While many cystics have asthma, they are different and have different treatment plans.

In addition, while your son is small, it could just be family genetics (as you mention) and what you describe for stools would point to him being pancreatic sufficient.

Ultimately, the only way to know is to test, and mostly likely a genetic test.

If your gut tells you they are still missing something, then I would push for the test. But I <u>personally</u> would not lose much sleep worrying abt. CF with what you have described.

DISCLAMER: I am not a medical professional, diagnosis & treatment should be something you discuss with your pulmo in detail if you are uncomfortable with what you have so far.
 

just1more

New member
Ok, I'm gonna take a stab.

My gut tells me the likelihood of classic CF is low. While every patient w/ CF presents differently, the symptoms you list could have several sources. Among them being that the meds you discuss working are all asthma drugs. While many cystics have asthma, they are different and have different treatment plans.

In addition, while your son is small, it could just be family genetics (as you mention) and what you describe for stools would point to him being pancreatic sufficient.

Ultimately, the only way to know is to test, and mostly likely a genetic test.

If your gut tells you they are still missing something, then I would push for the test. But I <u>personally</u> would not lose much sleep worrying abt. CF with what you have described.

DISCLAMER: I am not a medical professional, diagnosis & treatment should be something you discuss with your pulmo in detail if you are uncomfortable with what you have so far.
 

just1more

New member
Ok, I'm gonna take a stab.

My gut tells me the likelihood of classic CF is low. While every patient w/ CF presents differently, the symptoms you list could have several sources. Among them being that the meds you discuss working are all asthma drugs. While many cystics have asthma, they are different and have different treatment plans.

In addition, while your son is small, it could just be family genetics (as you mention) and what you describe for stools would point to him being pancreatic sufficient.

Ultimately, the only way to know is to test, and mostly likely a genetic test.

If your gut tells you they are still missing something, then I would push for the test. But I <u>personally</u> would not lose much sleep worrying abt. CF with what you have described.

DISCLAMER: I am not a medical professional, diagnosis & treatment should be something you discuss with your pulmo in detail if you are uncomfortable with what you have so far.
 

just1more

New member
Ok, I'm gonna take a stab.

My gut tells me the likelihood of classic CF is low. While every patient w/ CF presents differently, the symptoms you list could have several sources. Among them being that the meds you discuss working are all asthma drugs. While many cystics have asthma, they are different and have different treatment plans.

In addition, while your son is small, it could just be family genetics (as you mention) and what you describe for stools would point to him being pancreatic sufficient.

Ultimately, the only way to know is to test, and mostly likely a genetic test.

If your gut tells you they are still missing something, then I would push for the test. But I <u>personally</u> would not lose much sleep worrying abt. CF with what you have described.

DISCLAMER: I am not a medical professional, diagnosis & treatment should be something you discuss with your pulmo in detail if you are uncomfortable with what you have so far.
 

just1more

New member
Ok, I'm gonna take a stab.
<br />
<br />My gut tells me the likelihood of classic CF is low. While every patient w/ CF presents differently, the symptoms you list could have several sources. Among them being that the meds you discuss working are all asthma drugs. While many cystics have asthma, they are different and have different treatment plans.
<br />
<br />In addition, while your son is small, it could just be family genetics (as you mention) and what you describe for stools would point to him being pancreatic sufficient.
<br />
<br />Ultimately, the only way to know is to test, and mostly likely a genetic test.
<br />
<br />If your gut tells you they are still missing something, then I would push for the test. But I <u>personally</u> would not lose much sleep worrying abt. CF with what you have described.
<br />
<br />DISCLAMER: I am not a medical professional, diagnosis & treatment should be something you discuss with your pulmo in detail if you are uncomfortable with what you have so far.
 

MurrensMama

New member
There are other things to look for in suspecting CF. One is salty-tasting skin. If your son tastes salty to a kiss that would be an indicator of possible CF. Sinus issues can also be a symptom of CF. Lots of kids with CF also seem pale even when healthy. All of these things including those you mentioned are just possibilities though. Each individual is different and the more we learn about CF, the more we see variability and atypical presentations. If you are concerned, you can request a sweat test (a simple painless procedure, but best done by a CF center, for accuracy of determining the results) or a genetic test (a sample of blood is drawn and then sent for analyzing).
 

MurrensMama

New member
There are other things to look for in suspecting CF. One is salty-tasting skin. If your son tastes salty to a kiss that would be an indicator of possible CF. Sinus issues can also be a symptom of CF. Lots of kids with CF also seem pale even when healthy. All of these things including those you mentioned are just possibilities though. Each individual is different and the more we learn about CF, the more we see variability and atypical presentations. If you are concerned, you can request a sweat test (a simple painless procedure, but best done by a CF center, for accuracy of determining the results) or a genetic test (a sample of blood is drawn and then sent for analyzing).
 

MurrensMama

New member
There are other things to look for in suspecting CF. One is salty-tasting skin. If your son tastes salty to a kiss that would be an indicator of possible CF. Sinus issues can also be a symptom of CF. Lots of kids with CF also seem pale even when healthy. All of these things including those you mentioned are just possibilities though. Each individual is different and the more we learn about CF, the more we see variability and atypical presentations. If you are concerned, you can request a sweat test (a simple painless procedure, but best done by a CF center, for accuracy of determining the results) or a genetic test (a sample of blood is drawn and then sent for analyzing).
 

MurrensMama

New member
There are other things to look for in suspecting CF. One is salty-tasting skin. If your son tastes salty to a kiss that would be an indicator of possible CF. Sinus issues can also be a symptom of CF. Lots of kids with CF also seem pale even when healthy. All of these things including those you mentioned are just possibilities though. Each individual is different and the more we learn about CF, the more we see variability and atypical presentations. If you are concerned, you can request a sweat test (a simple painless procedure, but best done by a CF center, for accuracy of determining the results) or a genetic test (a sample of blood is drawn and then sent for analyzing).
 

MurrensMama

New member
There are other things to look for in suspecting CF. One is salty-tasting skin. If your son tastes salty to a kiss that would be an indicator of possible CF. Sinus issues can also be a symptom of CF. Lots of kids with CF also seem pale even when healthy. All of these things including those you mentioned are just possibilities though. Each individual is different and the more we learn about CF, the more we see variability and atypical presentations. If you are concerned, you can request a sweat test (a simple painless procedure, but best done by a CF center, for accuracy of determining the results) or a genetic test (a sample of blood is drawn and then sent for analyzing).
<br />
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