This story begins with a typical boy, very active, well-adjusted, with a bit of a difficulty recalling learned information that delayed learning to read. Headaches began interfering with school work occasionally around 9 years old, then they began to interfere quite regularly by 10 years old; followed soon thereafter by a bad virus that made him very sick that he never recovered from. He was obviously very nauseated for days on end, but doctors typically dismissed him after the first test they ran came back normal. No medication helped the nausea. I realized his headaches were constant about this time, along with episodes of very intense left sided chest pains, annoying joint pains, the feeling of asthma that was not helped by medication, neck pain, hypersensitivity to light, smell, taste--then one day he asked why his sister was talking in slow motion! Upon questioning, he said that had always happened every now and then for as long as he could remember. (This could be his aura for migraines.)
Fast-forward six months of a multitude of doctor visits in three states, ER visits, hospitalization, and enough tests to document every square inch of his 70lbs; and he finally received a diagnosis of post-viral dysautonomia--possibly postural orthostatic tachycardia syndrome (POTS). His nervous system that takes care of automatic functions was damaged by the virus. This seems to be the worst news possible. There's no cure. There's no medicine to stop the unending pain. There's no surgery to 'fix it'. Every day of his life is a battle. If he's 'lucky' he'll outgrow it in 10 or 15 years. All we can do is try to manage symptoms, but the pain continues despite following doctor's orders. After a few months of pain, he went from happy well-adjusted 10 year old to someone angry and difficult; from many friends, to not wanting anyone around. His childhood has been cut short.
A few words on doctors: GET A GOOD GENERAL DOC! Your general practitioner is the 'gate keeper' and can send you to the correct specialists; he can sometimes even get you in to them quicker. Your GP is critical to you getting good care. I traveled to a very well known place in Northern California to see doctors, which was extremely time consuming and expensive (not to mention they were clueless). It was much better to go to a clinic set up for traveling patients like Mayo Clinic--where you can get in and out. It would have saved us thousands of dollars and months of wasted time if we had done that first.
Mayo Clinic FYI: you may be refused if you mention that you've been to other well-known hospitals (even if they were unable to diagnose your condition).
Hospitals. If you keep a log it will help keep things straight in the midst of sleepless nights. The name of the nurse assigned each shift, meds given, doctor visit times and conversations (don't forget his name, too!). If a child is the patient, ask about the child life specialist or any special child programs the hospital has in place. If the entire medical team meets to discuss your child's care, it might be best done outside the child's room if he is already stressed (or doctor wary).
Organization. You need to document your illness time line with symptoms, weight, BP, perhaps even weather! Be as detailed as possible for your records, you may see a pattern emerge or seemingly insignificant detail may shed light on your illness. I highly recommend documenting medications, with dates started/stopped, reactions, and dosages, on a separate list. A three-ring binder or travel file is very helpful to bring it ALL: you never know which test result, recommendation, or letter will be needed at the next doctor's appointment. Include information on immunizations and dates for developmental milestones.
I continue to look for answers, competent caring doctors, and ideas on parenting a chronically sick kid. Life goes on, someday this will all be a faded memory when all is made new.