Terrific Results

Seth returned to the hospital today for his updated EEG. He has been on the Sabril/Vigabatrin for about six weeks now with no seizure activity since July 30th.

We knew ahead of time that this day would not be enjoyable. EEGs are never enjoyable for Seth. As expected, he screamed throughout the preparation for the EEG and fought me when it was time for the sleeping portion. I was able to get a clear view of the screen today and was upset to see that several large spikes were still appearing on the screen at random times.

As we left to head to his neurology appointment down the hall, I prepared myself for the inevitable. We were going to be told that his EEG still wasn't clear. When his neurologist walked into the room to see us, I was shocked to see a smile on her face. We were told that his EEG was FINALLY clear after all! I obviously don't know what to look for during the test. :)

She said there are still a couple of "sharps" occurring when he falls asleep, but everything was normal other than that. The sharps were explained as being much smaller than spikes and not a huge worry.

She asked about developmental milestones, and we mentioned that he still seems to be struggling with speech. She told us that while she thought everything would turn out fine, a reference to ECI (Early Childhood Intervention) would probably be in his best interest. That should be set up later this week.

We celebrated his clear EEG today with family. It was wonderful to be able to share his good news with the people we love most!

Our other great news is that Seth began weaning from the Vigabatrin tonight. In four weeks, he should be off it completely! We have been told to return for his next neurology checkup in January. He will not need another EEG at that appointment. We are so excited that our little superhero is doing so well! Thank you for all your continued prayers and support!

ERG? What's that?

Seth went in today to have an ERG (electroretinography) done on his eyes. Josh and I had never heard of an ERG prior to Seth's first eye appointment in August, so today was quite a learning experience for us. We were given instructions to not feed him after midnight as he would be under anesthesia for the duration of the procedure. As always, with a child as young as Seth, this made us nervous. He had been under full anesthesia prior to this in June when he had his MRI and did well, but this procedure would be done in a doctor's office that was not connected to a hospital. Luckily, Seth was only mildly sedated and was awake the whole time.

We were told that Seth's ERG would give a baseline of whether or not his retinas had changed due to the Vigabatrin. Unfortunately, it's not a very fun test to watch. He first had to be given the anesthesia while we were seated in a dark room. After that had kicked in, Seth and I were moved to another dark room where his eyes were held open using some metal spectrums and a kind of contact lens was placed directly on each of his eyes to monitor the electrical activity in his retinas. The doctor then used a tool that flashed several lights into his eyes. The test was then repeated with the lights on in the room.

Seth handled the test much better than I expected. He squirmed a little at the beginning of the test, but then just "talked" to myself, the anesthesiologist, and the doctor during the remainder of the test. When the test was over, the doctor told us that his results were normal for a baby in his age group, and that there was one large discrepancy between the data on the eyes during one test. However, she was not concerned about this difference as she notated that it was probably due to the fact that the makeshift contact lens did not fit that eye properly. Unfortunately, there are only two sizes in the lenses for babies and neither size truly fit his right eye, so she had to work with what she had been given.

His test results were faxed over to his eye doctor, so I'm sure we will hear more about his results when we return to the regular eye doctor in November. We are definitely glad that no vision issues have come up while using the Vigabatrin!

Since my last post, Seth has learned how to pull up on everything in sight and has produced a "d" consonant sound a few times. He has also given up almost completely on crawling and has chosen his preferred method of movement to be hopping everywhere. He's gotten quite adventurous and has hopped all the way from the living room down the hall to his room so far. We are really starting to do some serious baby proofing!

Seth will go in for his next EEG at the end of September, so we are hoping for even better news after that appointment. For now, things are going really well. Seth has been seizure free since July 30th, so we have finally hit one month seizure free! He is completely off the ACTH and prednisone at this point and is solely using the Vigabatrin. We will get a better idea when he will be weaned from that medicine after his EEG at the end of the month. Keep praying for our little fighter. It is doing wonders!