thanks for all of your support!

[Guest guest]

, Shelby, Dawn, , Darla and Bridget (and everyone)-

Thank you so much for all of your support and good advice. It really helped validate my feelings about the visit. I had also emailed Dr. Kahler and Dr. Kelley, and Dr. Kahler called me back this afternoon to address my concerns and to gather more info about my kids. He wants me to give Dr. Wang (I misspelled his name, and I'm pretty sure that was unintentional!) another chance. He thinks that Dr. Wang is inexperienced but is willing to learn, and has the potential to become a resource for kids like mine. I think Dr. Kahler is saying that, if I let Dr. Wang (very traditional) be convinced by association with my kids that autism is a metabolic disorder and is treatable, and that (suspected, in my case) mito disease is manageable and the kids can look healthy, it would benefit Dr. Wang's education and other kids. Dr. Wang is presenting us at a case conference tomorrow (maybe it will generate more ideas) and Dr. Kahler said that Dr. Wang needed time to assimilate all of the info that I provided. Fair enough, but I'm not sure that I can work with someone who wants a traditional doctor-patient relationship - I am way beyond that, and need to be considered a partner (if not an expert!) in my kids. So we will see - I at least need to repeat the blood sugar, and find out the rest of the lab results, and see whether he can get me the info about Carnitine transport protein deficiency workup. I would just love to go to a doc who says "Ah ... I've met kids like yours before, and here is what I think will help" rather than feeling like I need to train the doc (at my kids' expense, and paying them for it as well!).

Thank you all for helping me to calm down!

- Dr. Carol Greene is a geneticist who is arriving at the University of land in September. The number to schedule appointments is (410)328-3335, but the secretary was out today. My pediatrician and Dr. Kahler both said that she is very nice and very willing to partner with parents. I don't know whether she is experienced in mito disease, and I need to find that out. I think that she used to be at Childrens National Medical Center - I know that I've heard her name mentioned before, but I can't remember where.

Kathy