4th Pneumonia

J

Justinsmom

New member
Hi,
My son Justin was diagnosed in Feb. He has had 4 pneumonias since Feb. 11. He is completely PI. My question is, should we expect one pneumonia after another? He has had a total of 4 since Feb. 11!!!! He was symptomatic with 1,2 and 4, and the 3rd was diagnosed with bronchoscopy. He had 2 different bacteria. Both common. This is new to us. He was known PI for close to a year before the pulmonary involvement. Our CF doctor is wonderful and his vest treatments seemed to help, although only on them a week and probably not enough time to combat this attack. We caught this early. My question is, is this what is will be like for him to have CF? He has had health issues since he was born, but I am not sure what to expect. Do most kids have a long period between infections or are they close together. Any experience is appreciated.
Thanks!!!
 
J

Justinsmom

New member
Hi,
My son Justin was diagnosed in Feb. He has had 4 pneumonias since Feb. 11. He is completely PI. My question is, should we expect one pneumonia after another? He has had a total of 4 since Feb. 11!!!! He was symptomatic with 1,2 and 4, and the 3rd was diagnosed with bronchoscopy. He had 2 different bacteria. Both common. This is new to us. He was known PI for close to a year before the pulmonary involvement. Our CF doctor is wonderful and his vest treatments seemed to help, although only on them a week and probably not enough time to combat this attack. We caught this early. My question is, is this what is will be like for him to have CF? He has had health issues since he was born, but I am not sure what to expect. Do most kids have a long period between infections or are they close together. Any experience is appreciated.
Thanks!!!
 
M

Mommafirst

Guest
Are they sure the pneumonia was clear in between? It kind of sounds like they aren't getting rid of it. Did they do IV antibiotics or just orals?

I think everyone's CF is different, but this sounds like a particularly bad couple of months for him. I would think they need to really hit this hard to see if they can get him cleared for more than a week or two at a time.
 
M

Mommafirst

Guest
Are they sure the pneumonia was clear in between? It kind of sounds like they aren't getting rid of it. Did they do IV antibiotics or just orals?

I think everyone's CF is different, but this sounds like a particularly bad couple of months for him. I would think they need to really hit this hard to see if they can get him cleared for more than a week or two at a time.
 
I

imported_Momto2

New member
Justinsmom, what's his FEV and general body condition? Unless he is in poor shape, this seems a bit extreme. My guess is that the pneumonia was never fully cleared up. I would also take extra precautions that he is not picking stuff up at the doctors....

Sadly, I have had winters where the infections just kept coming one right after the other. Its exhausting. I hope your son gets off this bandwagon quickly!
 
I

imported_Momto2

New member
Justinsmom, what's his FEV and general body condition? Unless he is in poor shape, this seems a bit extreme. My guess is that the pneumonia was never fully cleared up. I would also take extra precautions that he is not picking stuff up at the doctors....

Sadly, I have had winters where the infections just kept coming one right after the other. Its exhausting. I hope your son gets off this bandwagon quickly!
 
J

Justinsmom

New member
All of his pulmonary issues started when his old GI doctor let his BMI drop below 3% before giving him Creon eventhough we knew he was PI. His fecal elastase dropped to 25 and it still took the hospital 6 weeks to get it ordered when he was finally seen at the old CF Center and they couldn't believe how emaciated he looked. That was in August and his pulmonary issues (more than the asthma he has had since 18 months old) started in October. He is much better weight wise on the Creon and his BMI is now about 15%.

His FEV's are usually in the 90's. He tends to be lower in the 25/75 in the 70's (his last FEF 75 was 60% - he has small airway issues.) When he has one of these "flair ups" or whatever you call the recurrent pneumonias, his FEV's are around 70 and his PEFR is in the low 50's. Ped did not do any PFT's this time, but he couldn't even take a deep breath without coughing. Really short of breath if he moved around much. Seems better today but still some cough and shortness of breath

I am not sure that the pneumonia is clearing out of the lung either. I know when they did the brochoscopy, the numbers of the bachterias were really high. I thought once they cleared it out, and he went through another round of the antibiotic, he would be done with it. It was 2 weeks after finishing the antibiotic that he was sick again. How do you treat a pneumonia if the antibotic doesn't work. Again, this is so new to us.

Thanks for your input.
 
J

Justinsmom

New member
All of his pulmonary issues started when his old GI doctor let his BMI drop below 3% before giving him Creon eventhough we knew he was PI. His fecal elastase dropped to 25 and it still took the hospital 6 weeks to get it ordered when he was finally seen at the old CF Center and they couldn't believe how emaciated he looked. That was in August and his pulmonary issues (more than the asthma he has had since 18 months old) started in October. He is much better weight wise on the Creon and his BMI is now about 15%.

His FEV's are usually in the 90's. He tends to be lower in the 25/75 in the 70's (his last FEF 75 was 60% - he has small airway issues.) When he has one of these "flair ups" or whatever you call the recurrent pneumonias, his FEV's are around 70 and his PEFR is in the low 50's. Ped did not do any PFT's this time, but he couldn't even take a deep breath without coughing. Really short of breath if he moved around much. Seems better today but still some cough and shortness of breath

I am not sure that the pneumonia is clearing out of the lung either. I know when they did the brochoscopy, the numbers of the bachterias were really high. I thought once they cleared it out, and he went through another round of the antibiotic, he would be done with it. It was 2 weeks after finishing the antibiotic that he was sick again. How do you treat a pneumonia if the antibotic doesn't work. Again, this is so new to us.

Thanks for your input.
 
I

imported_Momto2

New member
Yeah, a low BMI really messes with the lungs and overall health.
You didnt mention whether his antibiotic rounds were all IV, oral, or both?
Sorry this is such a hard time. February-April is always the worst for me too.
 
I

imported_Momto2

New member
Yeah, a low BMI really messes with the lungs and overall health.
You didnt mention whether his antibiotic rounds were all IV, oral, or both?
Sorry this is such a hard time. February-April is always the worst for me too.
 
J

Justinsmom

New member
Hi,

Thanks for the input. Our CF Clinic nurse called me back today. They think he is not able to clear the mucus and bacteria out of his lungs on his own. Not sure if it is a new infection(s) or just the same one not clearing. They are considering adding pulmozyme to his daily mainenance drugs. We go back in 1 month and we will reassess then.

His first round was 2 days of iv and the rest oral. Since then, they are all oral. Glad April is almost over!!!!
 
J

Justinsmom

New member
Hi,

Thanks for the input. Our CF Clinic nurse called me back today. They think he is not able to clear the mucus and bacteria out of his lungs on his own. Not sure if it is a new infection(s) or just the same one not clearing. They are considering adding pulmozyme to his daily mainenance drugs. We go back in 1 month and we will reassess then.

His first round was 2 days of iv and the rest oral. Since then, they are all oral. Glad April is almost over!!!!
 
I

imported_Momto2

New member
If he were my kid, I would INSIST on two weeks of IV antiobiotics. He needs to get rid of this now. Continual infection is just damaging his lungs. What % HTS is he on?
 
I

imported_Momto2

New member
If he were my kid, I would INSIST on two weeks of IV antiobiotics. He needs to get rid of this now. Continual infection is just damaging his lungs. What % HTS is he on?
 
M

Mommafirst

Guest
Pulmozyme is a great drug, they should get him on it right away. I'd agree with Sarajerome and think that aggressive IV antibiotics with airway clearance 4x per day is essential until he gets this cleared out. Poor kiddo and momma...its all so exhausting!!!!
 
M

Mommafirst

Guest
Pulmozyme is a great drug, they should get him on it right away. I'd agree with Sarajerome and think that aggressive IV antibiotics with airway clearance 4x per day is essential until he gets this cleared out. Poor kiddo and momma...its all so exhausting!!!!
 
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