Boston Update

Overall, the appointment went well. Dr. Poduri was very impressed with his development since she saw him last year. Although he is still behind in several areas, he is continuing to make incredible strides and continues to defy the odds. She did confirm that the issues we are seeing with the inward rotation of the right leg and the issues with plantar flexion, are definitely neurologically based, not orthopedic. Right now all we can do is continue with PT and OT, and utilize the AFOs. She said that she isn’t going to address the toe walking unless he is doing it next year. He walks on his toes constantly now (when he isn’t wearing the AFOs). She also feels that there are more areas of heterotopia than what we saw on the first MRI.

The majority of our appointment was spent talking about the seizures. While my husband and I have struggled to wrap our heads around this whole seizure ordeal, she says there is no doubt that what we are seeing, all of the time, are seizures. She referred to them as being “cookie cutter” in nature. Due to the fact that his eyes always deviate to the right side, and he had an episode where his entire head turned to the right, she believes that the seizures are originating in the right temporal lobe. We always assumed (meaning me) that they were originating in the frontal lobe, so this was quite interesting.

We also talked a lot about seizure control. The biggest threat to Giovanni’s future is the progression of the seizures. The most important thing that we can do right now is to keep them controlled with the medication. Not controlling them completely increases the likelihood that the seizure activity will spread to other parts of his brain, changing the nature and severity of the seizures. Although we haven’t seen a seizure in a little while, she feels that we are teetering on the edge of the medication being at an optimal dose. She has asked us to watch him closely over the next two weeks for seizure activity. If we don’t see anything we are going to do one increase in his Trileptal. If we see any seizure activity at all, we will be a little more aggressive with the dose increase.

She feels that we should try to max out on the Trileptal, given the side effects are minimal. If we end up maxing out, the next step will be Keppra or Lamictal, followed by Depakote. I asked her why the Neurosurgeon was so quick to talk to us about surgery, given that we just started this journey a little over a year ago. Apparently with this type of brain lesion, meds tend to be less effective and resistant to medications…eventually. She told me not to worry about that now as we are a long way off from that. She also has decided to hold off on the MRI for now. She said the anesthesia is too risky, as the MRI isn’t going to change what we are doing. If he starts showing signs of hydrocephalus then we will do it, but she would like to hold off for a few more years.

So that is the appointment in a nutshell. Overall it was a good appointment with a lot of information. We also had the opportunity enroll in an epilepsy study so I will talk more about that in a later post.