Looks like we'll be at the Mayo Clinic on March 10. Between now and then we're doing one more urine test this weekend. Shawn's now off both histamine blocking drugs for this test.
I'm going back to Bloomington on Saturday and will stay till Thursday when Shawn will start his spring break. (Between high-speed internet and my phone, I can work just as well there as anywhere.)
Dave's staying in OP with the dog, driving down Wednesday and we'll all come home Thurdsay. Then off to Minnesota on that Sunday, March 9. I think it's about a 6 hour drive from OP.
Probably won't be much to report between now and then - but continue leaving your greetings for Shawn on the Guest Book. Hopefully we'll have more info in a few weeks...
Thursday, February 28, 2008
Tuesday, February 26, 2008
The picture just continues getting more and more confusing
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!
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!
Thursday, February 21, 2008
Make sure to sign the guestbook
About all we can do right now is wait for the next round of test results to make their way back to us from the Mayo Clinic... in the meantime, I've added a guestbook to this site so we can hear from all of you who are waiting along with us... please go and sign the guestbook and let us know who you are!
Wednesday, February 20, 2008
Zeke's thoughts on our road trip
made his thoughts about being left behind pretty clear this morning.
Tuesday, February 19, 2008
More get well wishes
Shawn is teaching a Hebrew class at the local synagogue in Bloomington - when he returned to IU a few weeks ago he received cards from the kids in his class. I scanned a few of them while I was there this weekend.
Monday, February 18, 2008
Next set of tests on its way...
Shawn is off the restricted diet, and the next round of his urine and blood is on its way to the Mayo Clinic. Meanwhile, for lunch he had a fruit drink with pineapple in it, and for dessert he had a banana shake. It's funny how being told that you can't have something makes you want it so much. (I wonder why that never works for broccoli or brussel sprouts?)
One more day in Bloomington
Dave and I have decided to stay one more day in Bloomington, will return to Chicago tomorrow. (If I had my choice, I'd just stay down here but I don't guess that's a very viable option.)
Three weeks till spring break. It looks like that will be the target date for surgery, either in Chicago or Minnesota.
Three weeks till spring break. It looks like that will be the target date for surgery, either in Chicago or Minnesota.
Subscribe to:
Posts (Atom)