8/11: A Decadron Increase
After a restless night, Leo's symptoms seemed to get slightly worse today. He seems to have started having minor headaches recently. I think his first headache was actually on our way to the airport in Houston, when he started crying in the car, but we couldn't figure out why. He started the same crying in the car on the way home, after we arrived in Chicago. I finally asked whether he had a headache and he said yes.
This morning, Leo started crying and touching his right temple. He isn't really using his left arm, so it's hard to say whether it was really on the right or left. Regardless, when we asked if he had a headache, he said yes. I immediately called the Burzynski Clinic and spoke to the on-call doctor, Dr. Alam, I think. He told us not to worry because headaches, it seems, are common for people with brain and brain stem tumors. This made sense. He said that unless Leo has a headache that doesn't stop, starts vomiting, or becomes somnolent (constantly sleepy) we shouldn't worry (more than normal). At the same time, we should increase decadron to 10mg per day, up from 9mg, to help with symptoms like this. But we worried all day while Leo spent some quality time at the Grandparents'.
It wasn't very long ago when it was next to impossible to take Leo out of the bathtub. He spent hours in the tub, freezing in water that had gotten cold (well, maybe not cold cold) and then argued when getting dressed. Now bathtime is a nightmare. He despises being undressed, probably because he thinks something unpleasant is coming his way. While I hold him, covering the dressing in his chest, Marina (and Granpa in Houston) washes as fast as possible. If that's not bad enough, washing his hair is even worse. Afterwards though, dressed and calm, Leo ate and drank and finally fell asleep. He didn't sleep well last night and didn't nap much during the day, so we're hoping for at least a little sleep tonight -- for all of us. And praying for a good day tomorrow.
This morning, Leo started crying and touching his right temple. He isn't really using his left arm, so it's hard to say whether it was really on the right or left. Regardless, when we asked if he had a headache, he said yes. I immediately called the Burzynski Clinic and spoke to the on-call doctor, Dr. Alam, I think. He told us not to worry because headaches, it seems, are common for people with brain and brain stem tumors. This made sense. He said that unless Leo has a headache that doesn't stop, starts vomiting, or becomes somnolent (constantly sleepy) we shouldn't worry (more than normal). At the same time, we should increase decadron to 10mg per day, up from 9mg, to help with symptoms like this. But we worried all day while Leo spent some quality time at the Grandparents'.
It wasn't very long ago when it was next to impossible to take Leo out of the bathtub. He spent hours in the tub, freezing in water that had gotten cold (well, maybe not cold cold) and then argued when getting dressed. Now bathtime is a nightmare. He despises being undressed, probably because he thinks something unpleasant is coming his way. While I hold him, covering the dressing in his chest, Marina (and Granpa in Houston) washes as fast as possible. If that's not bad enough, washing his hair is even worse. Afterwards though, dressed and calm, Leo ate and drank and finally fell asleep. He didn't sleep well last night and didn't nap much during the day, so we're hoping for at least a little sleep tonight -- for all of us. And praying for a good day tomorrow.
posted by Yury at 9:32 PM
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