My son had the sweat test today and his level was 11. They also did the Ambry test (wont get the results for a few weeks), but they were fairly confident with today's results. My son is still breathing very hard, so they are scheduling a CT to rule out some of the ILDs and will bronch him again after he finishes his antibiotics to see if the bacteria is gone.
Thank you all so much for your input!!!
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Hello all and thank you all so much for this site!
My son started having respiratory distress in mid October. His sypmtoms were coughing, rapid and labored breathing. He was diagnosed with bronchiolitis, then asthma and then viral pneumonia. He has been hospitalized 5 times for the distress. He has needed supplemental oxygen for 3 of the visits. On our last visit the Pulmonologist did a bronchoscopy. They found no anatomical abnormalities but the lungs were inflamed. The cultures all appeared to be negative at first, but then they found a slow growing staph (5 days after procedure). They put him on antibiotics and ordered a CT and a sweat test. We had the sweat test on Tuesday of this week and my son didn't sweat enough (even though he was VERY hydrated) so the test was invalid. We received a call from the Children's hospital yesterday and were told that they found pseudomonas on one of his cultures. It's been 4 1/2 weeks since the bronch, so I'm confused as to why it is just now showing up. He is going to be taking Cipro and Tobi for 3 weeks and then will have another bronch to see if the psuedo is gone.
His only symptoms now are rapid and labored breathing. He hasn't had a cough in over a month. We have our next sweat test next Wednesday. Hopefully they can get enough this time. He has also had the basic genetic panel done and tested negative for the most common genes. No one in either my or DH's family has ever been dx with CF.
He also has had severe reflux since birth. He still coughs quite a bit while drinking his bottle and I know reflux can cause breathing difficulties. The asthma medications (flo-vent and albuterol) never seem to make a difference in his breathing.
Not sure if anyone has the answers, but here are my questions:
1. Is it common for psuedo to take this long to grow on a culture?
2. Is psuedo found in the lungs ever associated with anything other than CF?
3. Is there anything more I can do to better prepare him for the sweat test?
4. With his symptoms, does this look like CF? (I need to prepare myself for the diagnosis if so)
5. My sons breathing seemed to get much better for about 10 days after the bronch, then deteriorated again. Is this common with a bronch?
6. Is it possible that the bacteria could be from aspiration from the reflux?
Again, thank you so much for reading this. Any information would be greatly appreciated.
Thank you all so much for your input!!!
********************************************************************
Hello all and thank you all so much for this site!
My son started having respiratory distress in mid October. His sypmtoms were coughing, rapid and labored breathing. He was diagnosed with bronchiolitis, then asthma and then viral pneumonia. He has been hospitalized 5 times for the distress. He has needed supplemental oxygen for 3 of the visits. On our last visit the Pulmonologist did a bronchoscopy. They found no anatomical abnormalities but the lungs were inflamed. The cultures all appeared to be negative at first, but then they found a slow growing staph (5 days after procedure). They put him on antibiotics and ordered a CT and a sweat test. We had the sweat test on Tuesday of this week and my son didn't sweat enough (even though he was VERY hydrated) so the test was invalid. We received a call from the Children's hospital yesterday and were told that they found pseudomonas on one of his cultures. It's been 4 1/2 weeks since the bronch, so I'm confused as to why it is just now showing up. He is going to be taking Cipro and Tobi for 3 weeks and then will have another bronch to see if the psuedo is gone.
His only symptoms now are rapid and labored breathing. He hasn't had a cough in over a month. We have our next sweat test next Wednesday. Hopefully they can get enough this time. He has also had the basic genetic panel done and tested negative for the most common genes. No one in either my or DH's family has ever been dx with CF.
He also has had severe reflux since birth. He still coughs quite a bit while drinking his bottle and I know reflux can cause breathing difficulties. The asthma medications (flo-vent and albuterol) never seem to make a difference in his breathing.
Not sure if anyone has the answers, but here are my questions:
1. Is it common for psuedo to take this long to grow on a culture?
2. Is psuedo found in the lungs ever associated with anything other than CF?
3. Is there anything more I can do to better prepare him for the sweat test?
4. With his symptoms, does this look like CF? (I need to prepare myself for the diagnosis if so)
5. My sons breathing seemed to get much better for about 10 days after the bronch, then deteriorated again. Is this common with a bronch?
6. Is it possible that the bacteria could be from aspiration from the reflux?
Again, thank you so much for reading this. Any information would be greatly appreciated.