TEST RESULTS

This past week was quite exhausting! We spent both Monday and Tuesday nights in the hospital ( 48-hr EEG) and spent pretty much all of Wednesday (we got home at 10pm) waiting for Victor to recover from his muscle biopsy and sedation from the MRI. We expected not to get results until our next appointment with Victor's neurologist, scheduled on April 26th. However, this morning we were called in to go over the results with a different neurologist.

Scared as I was, waiting for the hours to pass before we showed up for the appointment, the results are better than we had thought or would have hoped for:

EEG Results: Basically, most of Victor's seizures are myoclonic. Some activity that we had questioned was confirmed to be just odd eye rolling, not seizure. He also had one Clonic seizure type that seems to stem from too many myoclonics: these appear randomly not as often as the myoclonics.

MRI Results: After a lengthy intro explaining that some of the neurologists felt Victor has some odd devastating syndrome, the Doc we met with confirmed otherwise since he is a specialist in mitochandrial diseases. Showing no lactate peaks in all of Victor's MRI's, the doc saw only one other case similar to Victor's. Basically, Victor has been taking Vigabitrin (Sabril) since November. This med was great for stopping the Infantile Spasms. However, there was some controversy as to whether the increased dose in this med may have also increased his myoclonic seizure activity. The Vigabitrin combined with the effects of the Ketogenic Diet have changed a portion of Victor's cerebellum--effecting his increased eye rolling (which we thought to be seizure activity). The good news is that this is somewhat reversible. In the one other case this particular doc had and only one published case, when the Vigabitrin was decreased so too did the myoclonic seizures.

Therefore, we have started to wean Victor from this medication. We also spoke with the Doc about weaning the Phenobarbitol, as it has definitely slowed all of Victor's development. Having said this, it will be just before Victor's first birthday before he will be totally off of the Vigabitrin. We will have to play another waiting game to see if these myoclonic seizures will stop and lead toward stopping the other type of seizures that he's had. We also plan to increase the ratio of the Diet in a few weeks, hoping that the Diet will be the impetus for helping Victor overcome these obstacles.

It is our grande hope that with a whole lot of positive thinking and the weaning of his meds, that Victor will start to show improved vision & motor abilities. Also, I just enrolled him in a swim class at the hospital's therapy pool. Twice a week, on top of his 2x/week physical therapy, he'll use the buoyancy of the water to feel movement in the water and hopefully out of the water.

All of this is yet another milestone that we hope to successfully pass. We urge you to join us in visualizing Victor's rapid development and success!

THANK YOU!