Re: Ann- Question about drs/ Holland trip

[Guest guest]

We see Dr. Whiteman and he has been great to work with our pediatrician and other doctors. We know that he takes the time to call or receive calls from other doctors concerning my kids and my own care. I wouldn't trade him for anything! It scares me to think that there are so few left to treat Mito anymore. With Cohen not wanting to do long=term care anymore, it makes me wonder what we would ever do without Dr. Whiteman!!? He is booked and not accepting new patients at this time as he is overwhelmed so that is sad for those who want to see him. He is also one of the very few who treat adults as well as children. Question about drs/ Holland trip HI all,I'm just starting to think a bit more about what we're going to do AFTER the diagnosis comes in from Shoffner (hopefully, there will be a dx or at least a "non-specific" one that will point us in one direction or another!). I expect to hear from him, now that I clarified it with his office, sometime in middle of May. Anyhow, IF we get a mito or metabolic dx, what did you do in terms of doctors who treat? I know that a number of you see Cohen or Whiteman and that they specialize in mito. How many of you see them? How many of your local doctors work with them to help your mito/metabolic disorder child? How many of you just work with your local doctors? Will Cohen or Whiteman consult with local docs even if Cohen/Whiteman do not see the child. I have lots of anxiety about the diagnosis, but I also have anxiety about what we do AFTER we, hopefully (isn't it weird to pray for a diagnosis? I guess this state of limbo and confusion just drives us all nuts) get a diagnosis. I'm hoping Asher's neurologist will know what to do next....... I mean, Asher's not currently in any state of crisis given that he now is tube feeding... And I hear that Whiteman and Cohen are so so so busy that it takes a long time to get in.Have you ever heard the Holland story about what it's like raising a child with Down's? How it's quieter, not as flashy, but a journey worth itself anyhow. Sometimes, I feel like raising a Mito/Metabolic kid is like taking a trip to Israel. You know a bomb is going to go off somewhere at some time but you don't know when or where, you just have to be at a heightened state of vigilance all the time. Pessimistic, maybe... , but, then again, my one actual trip to Israel almost 10 years ago was the most interesting, satisfying, and eye-opening experience I've ever had.Let me know about what you do regarding doctors.Anne R Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com