Thursday, January 12, 2012

The new year has started with more doctor appointments for Hannah. We met with her neurologist on January 3rd. Just before going into the appointment, we were able to videotape one of Hannah's eye episodes to show the doctor. I really think it made an impact, much more than me just telling them time and again what is happening, and them finding nothing on any tests or exams. But, while the doctor was interested in the video, still no ideas what is going on. It's frustrating. The doctor showed the head of neurology also, but they decided that without concrete findings of seizures, they were going to hold off on treating her. Unless any changes occurred, we were to just remain status quo.

Hannah also saw her endocrinologist, whom we really like, this week. He explained the levels to me, all is fine. Her IGF (growth factor) is within range and has continued to increase with her age, which is good. She will have to have a bone age and bone density scan in June, nothing until then. He also saw the video of Hannah's eye episodes, but no ideas. There are blood issues that could cause eye disturbances, but they would cause the eyes to stay deviated, and he explained that there would be many other symptoms also.

EEG #4

Earlier this week, Hannah began complaining about having more eye episodes, and that many of them were longer. I picked her up on Monday and she had had 10 episodes and told me we "really needed to do something about them." Yesterday, she had 4 episodes in the first hour of school. She also didn't feel well, and came home to spend the rest of the day in bed. I called neurology to see if they wanted to start her on medicine, and they asked to see her today. In we went this morning for another (her 4th) EEG and to meet with Dr. Maytal, the head of neurology. I find neurologists to be some of the most interesting (um, that's a nice way of putting it) doctors. I could barely understand him, not sure what nationality he was but I really had to focus to catch every word he said. He didn't want to call these seizures, just not enough evidence, but prescribed medicine to begin.

We then went over to cardiology for Hannah to be evaluated. Our neurosurgeon had advised us that sometimes "cardiac arrhythmias can cause transient neurological issues." Hannah's exam was normal, but the doctor wanted to monitor her heart function while she was having the eye episodes so she is wearing a 24 hour halter monitor. She has already had one significant eye episode, so we'll see if they find any heart correlation. Dr. Seiden, the cardiologist we had never met before, was a very nice doctor, who was interested in the issue and suggesting possible other causes to check into. He did mention something about  her current medicine for anti-nausea and the possibility for it to cause dystonic spasms (involuntary eye spasms.) Now, we have seen many doctors throughout this eye problem journey and none of them had suggested we look into her medicine (although I know I discussed it with her oncologist) so I know it's far fetched.

I sent an email today asking her oncologist to call me tomorrow to discuss possibly taking her off the anti-nausea medicine she is on to see if it makes a difference. They will have to substitute another, so not sure if it's worthwhile, but I would like discuss this option with him before jumping to the seizure med. Wouldn't that be great if it was as easy as just a change in her medicine!

So that's what we've been up to. Hannah has missed a lot of school for all these doctor appointments (and she has been sick twice lately as well.). I received a note from school about her absences already, but they have assured me it's not an issue, especially in 7th grade and considering her history. It just makes it difficult for her to keep up with everything. We're doing lots of work at home, when she's feeling well, and so far she has kept up. Oh how I'm coming to love homework!!

That's all for now, will check in again soon. If I get a chance, I'll post a video to let you share in the eye episode experience!!

♥Kim