Earlier in the month, we took her off her anti-nausea medicine completely and replaced it with another medicine she had been on previously. The first few days after removing the medicine, Hannah only had about 2 episodes per day. I thought maybe we had found the answer! But, after those first few days, she began having more episodes, leveling off at about 4 per day. So, they didn't go away.
We initially started this new medicine at a higher dose than normal. However, this medicine is not only an antiemetic, it's also prescribed for anxiety. At the dosage she was on, it commonly causes tiredness and irritability. Oh boy, yes it did. After two days I contacted the doctor to let him know this dosage would not work for very long. I could barely get her out of bed to go to school. For the rest of the day, she was very irritable, irrational, and hostile at times. When she wasn't hostile, she was crying.
We cut the dose in half to see how that would work. Initially it was acceptable, but soon after it was evident that she wasn't feeling well. She had two mornings where she was standing outside the car vomiting, just like the old days. It wasn't good. I would have loved to have kept her on this new medicine, at the lower dose, but it just wasn't working for her.
Throughout all of this, the change in medicines, her eye episodes have gone up and down, but remained overall consistent at around 4 per day. Our next step is to put her on Triliptal, and anti-seizure drug. This drug, is meant specifically for partial seizures. But, the doctor didn't want to start the Triliptal without getting her nausea under control first. However, we can only do this one step at a time. This week, the doctor put Hannah back on the Kytril, the drug that she has been on for quite a while. Our trial did not show that the Kytril was causing the eye episodes, and she obviously needs it to control the nausea. On Saturday Hannah started the Kytril again. On Saturday Hannah had 7 eye episodes. On Sunday, Hannah had 5 episodes. Today, she had three.
Go figure. This thing is a crazy roller coaster ride for her. It's almost difficult now for her to count them during the day because she is so used to having them, and just going on with her day. These episodes are like a normal part of her day now, almost like counting how many times you breath or blink your eyes. I taped an index card to her planner, and she marks down when she has an episode during the day at school. This is the best we can do, and it's probably as accurate as it can get.
We are tracking her episodes now for a week, then will let the doctor decide when and if to start the anti-seizure medicine. That's where I feel like we're headed, but looking at the side effects of Triliptal, some of them are quite scary. I know that the drug companies have to list everything, but it's a bit daunting to see them all on paper.
So, after our own one person trial, we seem to be no closer to anything. Colby asked Hannah tonight, "what do you do if you have an eye thing during lacrosse?" Hannah just casually replied, "duck."
I did take Colby and Hannah both to the orthopedist last week, Colby for a slight scoliosis and Hannah for her ongoing bone pain, but that's a story for another post. I'm sure you can only handle so much medical talk at one time. Suffice it to say that both girls thought the doctor "didn't know anything." That pretty much sums it up!