When dealing with 'something,' that all these specialists 'can't put their finger on,' we have been living with the hope that one day we will be put in front of someone who has seen something just like what we are dealing with daily. We have heard success stories of someone having something similar, and being able to say 'hey - this is the same thing!' This is why we are never stopping putting ourselves in front of different doctors and specialists.
Starting this quest, I would have never thought, or believed, that every syndrome wouldn't be easy to identify, but it is not. The more common syndromes (if you can even say 'common') have all these markers and characteristics...they have trends and established routines. Some that we know publicly have huge sections in the library to help support people, parents, caregivers, teachers, etc. We aren't there...at least not yet.
The appointment with Dr. Wonderful Dentist's yesterday did not go bad. I hardly even had to be Mrs. Assertive Advocate. He came in the room and said 'I saw a picture at a Dallas conference that looked exactly like your son's mouth. It was the same picture. I couldn't believe it!' How old was this other patient? '5 years old. The good news, they have figured out how to treat it with this boy to prevent or slow the losing of his teeth.'
What does this mean for us? Referral to another specialist. How? Dr. Wonderful Dentist will be calling him this week, and will follow up with me by Thursday. If I don't hear from him by Thursday, call his secretary.
Okay - we have heard that one before, and I will call on Thursday, or Friday. But Dr. Wonderful Dentist is doing what we needed him to do...he is well connected and has lots of exposure to different dentists and patients. This is what would possibly lead to a find of what is going on (at least for the teeth).
So...on to the next guy...eventually :)
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