A few quick notes - I'm scatter brained this morning. If I was you, I'd fight to have your son looked at by Dr. Bruce Cohen (or someone on his staff) at the Mito Clinic at Akron Children's Hospital.
https://www.akronchildrens.org/cms/doctors/bruce_cohen/
Dr. Cohen is absolutely fabulous, smart, caring ...... Never gives up ....... He's not our doctor, but I've seen him speak at several conferences, and I've spoken with him on two occasions. I've also spoken with people that take their children to see him. He is the gold standard doctor to see in Ohio.
I fought my insurance company and won when they said I couldn't go out of network and they finally allowed it. It took getting through their lies, misinformation, hangups and disconnected calls, and learning their confusing terminology to get it approved. Most important record every call with your insurance company (make sure to record both sides and let each person you speak with know that you are recording the calls). But it was well worth it. Yet, it was hell to get through.
Who is your insurance company? Some are much worse. Our current one has been excellent. Thank God we changed insurance companies.
What type of plan do you have? PPO, HMO ...
Do you have to see a certain network or is there a list of doctors from which to choose?
99.9% of insurance policies have a note stating something to the effect that if you need a specialist and there is none in network, or if you can't get into see any doctors in network because they are backed up for a year, you can get approval to see a doctor outside of network.
It's very important to find that piece within your policy. Part of it is layers. They'll give you a one page policy. Then you'll find that there are supplemental pages to the policy. You should fight to get all of that.
Once you get the exact language in your policy that allows for a loophole to see doctors outside your network, then find out what backup you need to put in front of your insurance company. For example, I told them which doctors told me to go to see the specialist. I gave them the list of all the doctors they suggested seeing for this who specialize (very short list and were in my network) and all of them were more than a year out or not accepting new patients. Very unacceptable.
Then I had to keep calling, pushing through all the lies. And then 10 million white hairs later, I got to go out-of-network at in-network prices.
I'd say with your symptoms, it's good to get the possibility of MitoD looked into. If it isn't, then you can check that off your list. Be sure to include the language where you and your son both have symptoms in three or more organ systems and list them all out. Then back it up with all the studies and hospitals that say, check out with Mito specialist if symptoms in three or more organ systems.