I diagnosed my own daughter when she was 5 years old with Sensory Processing Disorder (SPD), which the Childhood Specialist we were seeing at the time (the tantrums had gotten so bad, we had no choice) said, off the record, was what she had. The Pediatrician was absolutely no help. Not only did the Ped not take my concerns about my daughter complaining about bright lights and headaches (she got eye glasses when she was 3 years old, is far sighted and has Strabismus), she also totally dismissed my concerns about all of her symptoms that eventually led up to the SPD diagnosis.
No Pediatric ENT or Pediatrician said anything to us about my daughter's inability to talk when she was younger, or where we could go for help (I finally took her to the school district when she was 3, and she was put into speech class. They couldn't believe that the Pediatric ENT hadn't mentioned anything to us about getting her help in speech, or where we could go ourselves.).
I got her help with her speech, because I pushed and pushed and pushed, knowing that there was something wrong and it needed to be fixed. While she was in speech and then Early Childhood, it was mentioned that they wanted to test her because they noticed certain "things." Testing came back stating she had various states of Hypotonia; she was in OT/PT through the 4th grade. If she hadn't had continuous help during the school year, I doubt my daughter would be able to do half the things she can now. She will continue to take Speech this fall, in the 5th grade.
My daughter also had/has issues with weight. Again, no help from the Pediatrician. I finally, with the help and intervention of the Childhood Specialist, got my daughter into the Pediatric Wellness and Fitness Program. There, I finally found a doctor whose son has SPD and understood the many different issues my daughter (and us) were facing. We did the program for about a year, but ultimately, it's up to my daughter to "help herself." Because we weren't getting cooperation, we finally left the program.
However, there is a happy side. My daughter is now aware that no one can do for her; she has to do for herself. We are teaching her about good nutrition (we eat organic) and being physically active (she's been in dance since she was 4 years old and last year particiated in Girls on the Run of Dane County, in which she's been learning how to run and have confidence in herself). She still sees her Childhood Specialist once a month, and that helps her talk to someone about her problems and not dump everything on dear ole mom.
I must confess, I didn't get much of anything from doctors; not a diagnosis (I figured it out) and certainly, not any help on where to get help and/or how to help her. I bought a few really good books, read them, and have figured out how to help her myself. The Childhood Specialist has been my lifeline; I feel she's as much my helper as she is my daughter's. Yes, Madison does have the Waisman Center; however, the Waisman Center is horribly expensive, and we couldn't afford their prices. Besides, my daughter is on the high-functioning end of the Autism Spectrum; unless you live with her 24/7, you have no idea she has "issues" if you meet her and spend just a few hours with her. Many of her issues are emotional, with some anxiety and OCD issues thrown in, as well as weight-related anxieties.
I commend you on pulling together some basic information to give to your doctors, but I have found that very few doctors are really interested in the information or in helping you cope. With all the various issues my daughter had growing up, some really bad ones as a baby, I never had a Ped who was genuinely interested in "getting to the bottom of it." To do that, I had to be a detective and a "doctor" myself.
And I'm still doing it, as now we have gone over to the Alternative Medicine side of the field, as we are discovering that healthier, cleaner living--and doctoring--is helping us better than anything. It is very possible that the genetic liver mutation we discovered that we all have is or could be partly to blame for a lot of my daughter's issues. The mutation doesn't allow our bodies to detox or metabolize correctly. The allopathic doctors don't know about, won't acknowledge it, and won't help us with it. However, the alternative medical community knows all about the mutation and are more than willing to help us get well. And from some very simple tweaks--like eating organic, doing away with gluten and dairy, and drinking reverse-osmosis water--my daughter is world's better now than she was just two years ago (she is now 10 years old).
If you want know more information, feel free to contact me.