Sir, your story is absolutely amazing. You, your wife, and your son deserve to be recognized for your struggles that will undoubtedly help others in the future.
Part of the problem is that diagnoses and treatments are expanding faster than the ability of humans to memorize and learn about all of them. IIRC there are close to 14,000 diagnoses—just diagnoses!—that we know about. Combine that with the numerous drugs, treatments, and other changes, and it quickly becomes apparent why people with unusual conditions are better off making themselves experts than in relying solely on the expertise of doctors who aren't specialists in whatever they have.
Half a century ago, medicine was neither costly nor effective. Since then, however, science has combatted our ignorance. It has enumerated and identified, according to the international disease-classification system, more than 13,600 diagnoses—13,600 different ways our bodies can fail. And for each one we’ve discovered beneficial remedies—remedies that can reduce suffering, extend lives, and sometimes stop a disease altogether. But those remedies now include more than six thousand drugs and four thousand medical and surgical procedures. Our job in medicine is to make sure that all of this capability is deployed, town by town, in the right way at the right time, without harm or waste of resources, for every person alive. And we’re struggling. There is no industry in the world with 13,600 different service lines to deliver.
Note that this was published in 2010. By now those numbers have probably grown.
I've also had personal experience with the doctor-doesn't-know problem: I had an unusual disease seven years ago, and the first specialist I saw said that she Googled it a few hours prior. Her partner gave me completely wrong information; he didn't even know how to treat what I had. Fortunately my family found a research center where some of the major researchers in the field worked, and the treatment I ultimately got had been published a few months before I started (it had become standard two or so years prior). If you're curious about specifics, send me an e-mail—it's in my profile.
Most doctors quickly realize that they're outgunned when my wife and I start talking about our son.
We have a lot more luck with PhDs than MDs.