Opinions please (long)

[mommy2jack]

I hijacked someone else's thread so I figured i'd make my own.
My son is 5 years old. It all started when he was about two weeks and I thought he had a really bad cold - he coughed and wheezed terribly. he has been nebulized almost daily since birth and on pulmicort, oripred, albuterol, xopenex, flovent...etc. They tested him for CF at 6 months old. His sweat test was normal (15). We never looked back. We accepted that our boy had really bad asthma and a ton of mucus. He has spent the years wheezing and always sounds like he has bronchitis...always coughing and sounding what the ped calls "junky". My son gets fevers from time to time and I typically bring him to the ped where he is usually put on antibiotics for "something". He has had strep many times starting BEFORE 1 year old. Ear tubes and still has fluid. on 9/3 he had a fever of 104.2(on Tylenol) so I brought him to Urgent care....they werent used to the mucus sound like I was so they assumed he had Pnuemonia (I knew they were wrong) - anyway they gave him a chest xray and said it looked hazy. Put him on a very strong antibiotic and dx'd him with bacterial Pnuemonia. We followed up with a Pulmo doc who ordered a bronchoscopy - she said she couldnt believe her eyes in there. She said his airway is terribly inflamed and full with mucus so thick that its solid. She cultured some and got back some staph and some other stuff - she put him on antbiotics for another two weeks......she sent us for another sweat test and it came back normal (15). She wants to find the source so she sent s to a specialist ENT. He is going to be doing a bronchoscopy/cilia biopsy so he sent us for a CT of the sinus. When we got the results, I was shocked. He has Pansinusitis! I cant believe his because I feel like he shoul dhave symptoms!!!!!! The ENT said the CT shows CF sinuses????? They are sending him for the Genzyme long panel genetic test for CF. He also says he suspects nasal polyps and will be having a nasal endoscopy as well as his adnoids out at the same time as the bronch.
He has NO digestive issues. He has chronic constipation but NEVER diarreah!
Does this seem like CF????? Ive asked a thousand times but why is his sweat test normal? I know a mucus cough is not normal.....I know the pansinusitis is not normal.....could it be anything else?

Thank you.

 

[mommy2jack]

I hijacked someone else's thread so I figured i'd make my own.
My son is 5 years old. It all started when he was about two weeks and I thought he had a really bad cold - he coughed and wheezed terribly. he has been nebulized almost daily since birth and on pulmicort, oripred, albuterol, xopenex, flovent...etc. They tested him for CF at 6 months old. His sweat test was normal (15). We never looked back. We accepted that our boy had really bad asthma and a ton of mucus. He has spent the years wheezing and always sounds like he has bronchitis...always coughing and sounding what the ped calls "junky". My son gets fevers from time to time and I typically bring him to the ped where he is usually put on antibiotics for "something". He has had strep many times starting BEFORE 1 year old. Ear tubes and still has fluid. on 9/3 he had a fever of 104.2(on Tylenol) so I brought him to Urgent care....they werent used to the mucus sound like I was so they assumed he had Pnuemonia (I knew they were wrong) - anyway they gave him a chest xray and said it looked hazy. Put him on a very strong antibiotic and dx'd him with bacterial Pnuemonia. We followed up with a Pulmo doc who ordered a bronchoscopy - she said she couldnt believe her eyes in there. She said his airway is terribly inflamed and full with mucus so thick that its solid. She cultured some and got back some staph and some other stuff - she put him on antbiotics for another two weeks......she sent us for another sweat test and it came back normal (15). She wants to find the source so she sent s to a specialist ENT. He is going to be doing a bronchoscopy/cilia biopsy so he sent us for a CT of the sinus. When we got the results, I was shocked. He has Pansinusitis! I cant believe his because I feel like he shoul dhave symptoms!!!!!! The ENT said the CT shows CF sinuses????? They are sending him for the Genzyme long panel genetic test for CF. He also says he suspects nasal polyps and will be having a nasal endoscopy as well as his adnoids out at the same time as the bronch.
He has NO digestive issues. He has chronic constipation but NEVER diarreah!
Does this seem like CF????? Ive asked a thousand times but why is his sweat test normal? I know a mucus cough is not normal.....I know the pansinusitis is not normal.....could it be anything else?

Thank you.

 

[mommy2jack]

I hijacked someone else's thread so I figured i'd make my own.
My son is 5 years old. It all started when he was about two weeks and I thought he had a really bad cold - he coughed and wheezed terribly. he has been nebulized almost daily since birth and on pulmicort, oripred, albuterol, xopenex, flovent...etc. They tested him for CF at 6 months old. His sweat test was normal (15). We never looked back. We accepted that our boy had really bad asthma and a ton of mucus. He has spent the years wheezing and always sounds like he has bronchitis...always coughing and sounding what the ped calls "junky". My son gets fevers from time to time and I typically bring him to the ped where he is usually put on antibiotics for "something". He has had strep many times starting BEFORE 1 year old. Ear tubes and still has fluid. on 9/3 he had a fever of 104.2(on Tylenol) so I brought him to Urgent care....they werent used to the mucus sound like I was so they assumed he had Pnuemonia (I knew they were wrong) - anyway they gave him a chest xray and said it looked hazy. Put him on a very strong antibiotic and dx'd him with bacterial Pnuemonia. We followed up with a Pulmo doc who ordered a bronchoscopy - she said she couldnt believe her eyes in there. She said his airway is terribly inflamed and full with mucus so thick that its solid. She cultured some and got back some staph and some other stuff - she put him on antbiotics for another two weeks......she sent us for another sweat test and it came back normal (15). She wants to find the source so she sent s to a specialist ENT. He is going to be doing a bronchoscopy/cilia biopsy so he sent us for a CT of the sinus. When we got the results, I was shocked. He has Pansinusitis! I cant believe his because I feel like he shoul dhave symptoms!!!!!! The ENT said the CT shows CF sinuses????? They are sending him for the Genzyme long panel genetic test for CF. He also says he suspects nasal polyps and will be having a nasal endoscopy as well as his adnoids out at the same time as the bronch.
He has NO digestive issues. He has chronic constipation but NEVER diarreah!
Does this seem like CF????? Ive asked a thousand times but why is his sweat test normal? I know a mucus cough is not normal.....I know the pansinusitis is not normal.....could it be anything else?

Thank you.

 

[mommy2jack]

I hijacked someone else's thread so I figured i'd make my own.
My son is 5 years old. It all started when he was about two weeks and I thought he had a really bad cold - he coughed and wheezed terribly. he has been nebulized almost daily since birth and on pulmicort, oripred, albuterol, xopenex, flovent...etc. They tested him for CF at 6 months old. His sweat test was normal (15). We never looked back. We accepted that our boy had really bad asthma and a ton of mucus. He has spent the years wheezing and always sounds like he has bronchitis...always coughing and sounding what the ped calls "junky". My son gets fevers from time to time and I typically bring him to the ped where he is usually put on antibiotics for "something". He has had strep many times starting BEFORE 1 year old. Ear tubes and still has fluid. on 9/3 he had a fever of 104.2(on Tylenol) so I brought him to Urgent care....they werent used to the mucus sound like I was so they assumed he had Pnuemonia (I knew they were wrong) - anyway they gave him a chest xray and said it looked hazy. Put him on a very strong antibiotic and dx'd him with bacterial Pnuemonia. We followed up with a Pulmo doc who ordered a bronchoscopy - she said she couldnt believe her eyes in there. She said his airway is terribly inflamed and full with mucus so thick that its solid. She cultured some and got back some staph and some other stuff - she put him on antbiotics for another two weeks......she sent us for another sweat test and it came back normal (15). She wants to find the source so she sent s to a specialist ENT. He is going to be doing a bronchoscopy/cilia biopsy so he sent us for a CT of the sinus. When we got the results, I was shocked. He has Pansinusitis! I cant believe his because I feel like he shoul dhave symptoms!!!!!! The ENT said the CT shows CF sinuses????? They are sending him for the Genzyme long panel genetic test for CF. He also says he suspects nasal polyps and will be having a nasal endoscopy as well as his adnoids out at the same time as the bronch.
He has NO digestive issues. He has chronic constipation but NEVER diarreah!
Does this seem like CF????? Ive asked a thousand times but why is his sweat test normal? I know a mucus cough is not normal.....I know the pansinusitis is not normal.....could it be anything else?

Thank you.

 

[mommy2jack]

I hijacked someone else's thread so I figured i'd make my own.
<br />My son is 5 years old. It all started when he was about two weeks and I thought he had a really bad cold - he coughed and wheezed terribly. he has been nebulized almost daily since birth and on pulmicort, oripred, albuterol, xopenex, flovent...etc. They tested him for CF at 6 months old. His sweat test was normal (15). We never looked back. We accepted that our boy had really bad asthma and a ton of mucus. He has spent the years wheezing and always sounds like he has bronchitis...always coughing and sounding what the ped calls "junky". My son gets fevers from time to time and I typically bring him to the ped where he is usually put on antibiotics for "something". He has had strep many times starting BEFORE 1 year old. Ear tubes and still has fluid. on 9/3 he had a fever of 104.2(on Tylenol) so I brought him to Urgent care....they werent used to the mucus sound like I was so they assumed he had Pnuemonia (I knew they were wrong) - anyway they gave him a chest xray and said it looked hazy. Put him on a very strong antibiotic and dx'd him with bacterial Pnuemonia. We followed up with a Pulmo doc who ordered a bronchoscopy - she said she couldnt believe her eyes in there. She said his airway is terribly inflamed and full with mucus so thick that its solid. She cultured some and got back some staph and some other stuff - she put him on antbiotics for another two weeks......she sent us for another sweat test and it came back normal (15). She wants to find the source so she sent s to a specialist ENT. He is going to be doing a bronchoscopy/cilia biopsy so he sent us for a CT of the sinus. When we got the results, I was shocked. He has Pansinusitis! I cant believe his because I feel like he shoul dhave symptoms!!!!!! The ENT said the CT shows CF sinuses????? They are sending him for the Genzyme long panel genetic test for CF. He also says he suspects nasal polyps and will be having a nasal endoscopy as well as his adnoids out at the same time as the bronch.
<br />He has NO digestive issues. He has chronic constipation but NEVER diarreah!
<br />Does this seem like CF????? Ive asked a thousand times but why is his sweat test normal? I know a mucus cough is not normal.....I know the pansinusitis is not normal.....could it be anything else?
<br />
<br />Thank you.

 

[Mommafirst]

I'm not a doctor, so I'm not sure what else it could be, but I have witnessed several people around here that have had normal sweat tests and then wound up having CF. I hope you get some answers and can get started helping your ds to breathe a little easier.

 

[Mommafirst]

I'm not a doctor, so I'm not sure what else it could be, but I have witnessed several people around here that have had normal sweat tests and then wound up having CF. I hope you get some answers and can get started helping your ds to breathe a little easier.

 

[Mommafirst]

I'm not a doctor, so I'm not sure what else it could be, but I have witnessed several people around here that have had normal sweat tests and then wound up having CF. I hope you get some answers and can get started helping your ds to breathe a little easier.

 

[Mommafirst]

I'm not a doctor, so I'm not sure what else it could be, but I have witnessed several people around here that have had normal sweat tests and then wound up having CF. I hope you get some answers and can get started helping your ds to breathe a little easier.

 

[Mommafirst]

I'm not a doctor, so I'm not sure what else it could be, but I have witnessed several people around here that have had normal sweat tests and then wound up having CF. I hope you get some answers and can get started helping your ds to breathe a little easier.

 

[sdelorenzo]

Sounds like you have some drs who are on the right path in trying to figure out what is going on with your son. I have also heard of a number of kids with cf who had normal sweat tests or just one gene be diagnosed with cf. But 15 does sound pretty low, especially twice yrs apart.

Your son's symptoms do sound a lot like cf. My daughter was diagnosed at one month of age. A few weeks after that my 4 yr old nephew was also tested for cf and he ended up having cf. His main problem up until that point had been chronic constipation.

Hopefully they can get some answers soon for him. Even if he doesn't end up getting diagnosed with cf, maybe you should ask the pulmonologist to treat his symptoms. For example, do chest physical therapy (either manually or with the vest) to help loosen the mucus in his lungs. Or use enzymes to see if his constipation improves.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, aunt to Joseph, 11, with cf

 

[sdelorenzo]

Sounds like you have some drs who are on the right path in trying to figure out what is going on with your son. I have also heard of a number of kids with cf who had normal sweat tests or just one gene be diagnosed with cf. But 15 does sound pretty low, especially twice yrs apart.

Your son's symptoms do sound a lot like cf. My daughter was diagnosed at one month of age. A few weeks after that my 4 yr old nephew was also tested for cf and he ended up having cf. His main problem up until that point had been chronic constipation.

Hopefully they can get some answers soon for him. Even if he doesn't end up getting diagnosed with cf, maybe you should ask the pulmonologist to treat his symptoms. For example, do chest physical therapy (either manually or with the vest) to help loosen the mucus in his lungs. Or use enzymes to see if his constipation improves.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, aunt to Joseph, 11, with cf

 

[sdelorenzo]

Sounds like you have some drs who are on the right path in trying to figure out what is going on with your son. I have also heard of a number of kids with cf who had normal sweat tests or just one gene be diagnosed with cf. But 15 does sound pretty low, especially twice yrs apart.

Your son's symptoms do sound a lot like cf. My daughter was diagnosed at one month of age. A few weeks after that my 4 yr old nephew was also tested for cf and he ended up having cf. His main problem up until that point had been chronic constipation.

Hopefully they can get some answers soon for him. Even if he doesn't end up getting diagnosed with cf, maybe you should ask the pulmonologist to treat his symptoms. For example, do chest physical therapy (either manually or with the vest) to help loosen the mucus in his lungs. Or use enzymes to see if his constipation improves.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, aunt to Joseph, 11, with cf

 

[sdelorenzo]

Sounds like you have some drs who are on the right path in trying to figure out what is going on with your son. I have also heard of a number of kids with cf who had normal sweat tests or just one gene be diagnosed with cf. But 15 does sound pretty low, especially twice yrs apart.

Your son's symptoms do sound a lot like cf. My daughter was diagnosed at one month of age. A few weeks after that my 4 yr old nephew was also tested for cf and he ended up having cf. His main problem up until that point had been chronic constipation.

Hopefully they can get some answers soon for him. Even if he doesn't end up getting diagnosed with cf, maybe you should ask the pulmonologist to treat his symptoms. For example, do chest physical therapy (either manually or with the vest) to help loosen the mucus in his lungs. Or use enzymes to see if his constipation improves.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, aunt to Joseph, 11, with cf

 

[sdelorenzo]

Sounds like you have some drs who are on the right path in trying to figure out what is going on with your son. I have also heard of a number of kids with cf who had normal sweat tests or just one gene be diagnosed with cf. But 15 does sound pretty low, especially twice yrs apart.
<br />
<br />Your son's symptoms do sound a lot like cf. My daughter was diagnosed at one month of age. A few weeks after that my 4 yr old nephew was also tested for cf and he ended up having cf. His main problem up until that point had been chronic constipation.
<br />
<br />Hopefully they can get some answers soon for him. Even if he doesn't end up getting diagnosed with cf, maybe you should ask the pulmonologist to treat his symptoms. For example, do chest physical therapy (either manually or with the vest) to help loosen the mucus in his lungs. Or use enzymes to see if his constipation improves.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf, aunt to Joseph, 11, with cf

 

[JORDYSMOM]

I'm sorry you are going through this. I am glad they are going to do the full panel genetic test. We do have members here with very low sweat test numbers who have CF. I hope you find the answers very soon. Please let us know.

Stacey

 

[JORDYSMOM]

I'm sorry you are going through this. I am glad they are going to do the full panel genetic test. We do have members here with very low sweat test numbers who have CF. I hope you find the answers very soon. Please let us know.

Stacey

 

[JORDYSMOM]

I'm sorry you are going through this. I am glad they are going to do the full panel genetic test. We do have members here with very low sweat test numbers who have CF. I hope you find the answers very soon. Please let us know.

Stacey

 

[JORDYSMOM]

I'm sorry you are going through this. I am glad they are going to do the full panel genetic test. We do have members here with very low sweat test numbers who have CF. I hope you find the answers very soon. Please let us know.

Stacey

 

[JORDYSMOM]

I'm sorry you are going through this. I am glad they are going to do the full panel genetic test. We do have members here with very low sweat test numbers who have CF. I hope you find the answers very soon. Please let us know.
<br />
<br />Stacey