Shawn woke up this morning and was washing his hands when one of his friends looked over and asked what happened to him - his left wrist and back of his hand were both purple and swollen; like someone beat him with a bat. Completely painless. He went to the clinic where they were rather freaked out; they called his doctor here in Chicago and discussed it; took some blood tests and sent him home. And of course just like every other test this kid has had thrown at him, the initial results are normal - CBD and SED rates both normal. Full metabolic panel still pending.
His doctor came over tonight with lots of info about what he's been doing and who he's been talking with (which includes lots of very smart people, including the head of endocrinology at Childrens Hospital and a carcinoid expert at Northwestern); but not much in the way of answers, because there just isn't any data to give us a clue. Last week's urine and blood tests show nothing. He discussed this with the lab at the Mayo, they said there is a small possibility the test was influenced by the drugs Shawn's on; so at this point he's off both the antihistamines (Cyproheptadine and Ranitidine) for a few days and will then repeat the urine tests. So he's also now back on the restricted diet.
There is just no data yet to help point to a definitive diagnosis. There are other tests that can be done but we don't want to go off doing more invasive procedures without some data as to whether they are necessary. The last thing we need is complications from a procedure that didn't need to be performed.
We originally had an appointment at the Mayo for March 10; it hasn't been cancelled but it's currently with a general internist. Tomorrow Shawn's doctor will be calling them to see if they can switch him to a different doctor, possibly see him earlier and/or suggest further tests to be performed here first, have any other suggestions, or all of the above!
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