Hi Craigsmom,
I can really identify with your son. Antibiotics 26 times! How exhausting, scary, and perplexing. I first got sick when I was nearly 21. I essentially got pneumonia that never went away. They kept putting me on Tetracylcine. Then I would go off of it and 8 days later all the symptoms would return. That went on for 2 years until they found that I had pseudomonas and treated me for that with IV's. And that did the trick (at the time). In other words, they were treating me with Tetracycline which wasn't really doing much. It was the wrong drug. Over and over.
So here's my question to you. Your son has several different bacteria. How do the doctors know that it is the ORSA that is the bug that is making him sick? Have you ever seen or discussed what the cultures are showing? If he is resistant to Oxacillin and similar drugs, are there other drugs that he is sensitive to?
Have you taken him to an infectious disease specialist? Each of the 26 times he has been on drugs, do they change them? It just seems so weird to keep doing something that doesn't work over and over, thinking that it's somehow gioing to start working.
I have another line of thinking...When I first got sick, it was always a mystery why out of the blue all this started happening. Some may say it's in the genes. Why did the symptoms start at that particular time? My doctor believes there are triggers that bring on these exacerbations. For me, it was spending a year in close contact working with Formaldehyde in college. Was there anything in Craig's life around the time that he got respiratory symptoms? I have noticed reading people's blogs, that frequently I can spot triggers right before people's exacerbations. Did you move, start a new school, buy him a new mattress, did he take up a new hobby, anything new in school or a part time job? Does he work on cars? Any unhealthy environment? I ask this because if you can find a trigger, and you an remove the trigger, the coughing and subsequent symptoms may lessen.
Inflamation and an asthma component contributes greatly to this disease. So if his airways are inflamed and swollen and this is not being addressed, the bacteria sits in the lungs wreaking havoc. If you can reduce inflamation, open the airways, get as much mucus out as possible -- this would help him greatly.
You haven't mentioned anything about what meds or treatments he does -- and while I can't diagnose him or give medical advice, we can compare notes and you might be able to figure out how to attack this.
I do a lot of things that help me -- allergy control, supplements, all kinds of things -- but you have such a serious problem that first I think you need to address the larger picture. Exactly what is making your son sick and what else is contributing to his symptoms. I'd start with his doctors. Are you satisfied? Have you had a second opinion? I would also consult an allergist. And an infectious disease specialist. Gather as much information as you can from them. Start learning about how to control allergens in your home.
Even if it is ORSA, it is imperative that he gets his airways open and the mucus out. Everything you do is a help.
In my own case, a few years ago, my culture showed MRSA and less than a year later it was just Staph, then that disappeared for at least a year, then reappeared. But I had no symptoms. So I never treated it. Sometimes, these bugs sit in the lungs and do nothing. I've had exacerbations (coughing, fever, chills) where my doctor treated me for inflamation first, and no infection ever appeared...and the symptoms resolved.
Interesting that his PFTs go up and down. There is something hopeful in that. The fact that they can go up is a good thing. I really wonder what part inflamation is playing in all this.
