Hi Everyone – many of you have been struggling with this disease for some time now and I was hoping for a bit of sage advice. My son was diagnosed having MAC after a DNA probe. He had pnuem. twice, but after the second time, he wasn’t recovering well, even after the oral steroids.
He was diagnosed with asthma at 9 months olds, chronic ear infections started at the same time. He had severe stomach aches and frequent headaches. When he was 7, the pulminologist opted to do a bronch after the 2nd pnuemonia and stated that he was aspirating in his lungs and had acid reflux that was never diagnosed (aka Silent Acid Reflux). When the meds didn’t work on acid reflux, we opted for a fundoplycation, which raps the stomach around the esophogus. After the surgery, he stopped coughing and his breathing improved. The pulminologist and ID dr. suggested at his age not to worry about MAC because he had no underlying disease and his CT Scan was good.
We moved to NY and got a new ID and 2 pulminologists, both said not to treat the MAC.
He had problems breathing again in November 2007, his xray looked fine and we tested him for genotype CF which was negative. The pulminologist put him on Symbicort. After taking the meds he did fine and passed all his breathing tests and can sleep through the night. He also started to finally gain some weight after a full year with no weight gain.
Sooo….. as you all wrote stories about childhood asthma, acid reflux, coughing, pnuemonia, I wanted to ask your opinions of what I should look for as he gets older. Is there one symptom over the others that I should be on the look out for that I should request to do another bronch or ct scan for? I feel like this is not a matter of IF but WHEN will the MAC not be colonized.
Your son has had a lot to go through already. Lucky to have such a devoted parent though. I’m not sure if I understand correctly. Is he positive for MAC at this time or more precisely did his last bronchoscopy culture positive for MAC? If so, then personally I would not want to wait to start treatment. If he didn’t test positive then I would wait until he manifested a fever, night sweats, or coughing and then ask for another CT and /or bronch. Of course, I’m not a doctor….and speaking of doctors, I would want to be sure that the doctor he sees has considerable experience with MAC (NTM) patients. Good luck and I hope he continues to feel well.
He did test positive for MAC in 2007, from his bronchoscopy. I did send his results to several Drs. via email with MAC background all agreed that he should not be treated at this time. For some reason 3 ID Drs. feel that young children with normal immune systems can get beat MAC on their own with no underlying disease.
After I found out in 2007 he tested positive, I wanted to treat him immediately, but several Drs. said his levels were not that great and all the thoughts were: 1) Not far enough along to treat; 2) His body was fighting it off 3) bad test sample 4) He had just aspirated the MAC from his stomach into his lungs from his acid reflux and it never actually started the disease and finally most just state 5) it is colonized and keep watching for recurring symptoms. …. It is the last statement that we are working on at this time. We discussed doing another bronch, but we opted to wait until his get sick again vs. just putting him through another procedure when his xray last November did not show any signs of nodules. All the drs. agree that if the MAC is colonized to leave it be because it isn’t spreading. Part of me wants to do another bronch to see if it is still there, but you said, he has already been trhough so much.
I agree with Laura that it’s vital to be certain your son sees doctors with extended experience with NTM. I say this because I was enouraged to believe in “colonization” when, in reality, those bugs were growing! Of course, I was 68 when I fell ill, although my immune system was normal according to tests. As a mother and grandmother though, my inclination would be to query doctors at National Jewish, NIH or at Tyler Texas, if only to keep up with the latest information and not depend fully on “wait and see.” The squeaky wheel gets the grease, as they say, and mothers often know best! Good luck and keep us posted!
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