Vigabatrin Mix Master

So, I forgot to mention that Vigabatrin doesn't come in a chewable form so we have to crush it and put it in something. The first day I mixed it in orange juice and put it in an oral syringe--I felt pretty proud of myself as Evan drank it up. Yesterday Evan was less interested in the tainted OJ but still took the medicine. Today he flatly refused, so I tried putting it in a medicine cup he could take himself--no go. My next choice was to put it in a regular glass so I asked him if he'd like some orange juice--no. He asked for cranberry juice, so in went the Vigabatrin. Success! We'll see what tomorrow will bring.

As for the seizures, they continue. We have a few scheduled increases of Vigabatrin until we reach what should certainly be a working dose, so we'll see what happens.

We started Vigabatrin

I guess Rob and I were both dragging our feet about starting Evan on Vigabatrin. It arrived 10 days ago and we finally gave Evan his first dose. The package sat unopened on the kitchen counter for days and yesterday we took the plunge. We wanted to wait until the craziness of the holiday died down a bit because when Evan gets excited it sometimes triggers seizures. So, now that things are closer to calm, I guess we're out of excuses.

Yesterday morning we gave him the Vigabatrin and he only had one small seizure that evening. This makes us hopeful, but it's too soon to say anything about it's effectiveness yet.

So, keep your fingers crossed!

Vigabatrin Arrived

Evan's Vigabatrin arrived from Canada and we find ourselves wondering if this drug is going to work or if we will add it to the list of the ones that don't. Evan really hasn't had much success with any of the meds stopping his seizures so it's hard to remain optimistic and believe that this one might be different. But, this one might be different and wouldn't it be wonderful to have an end to the seizures!? I'd even be happy with a good reduction at this point.

We'll probably start him on the Vigabatrin this weekend so we'll both be around and be able to see any possible side effects he may have with the new drug. Merry Christmas Evan, here's a new medicine. Do you think Santa can bring Evan a seizure-free life? I'd give anything to stop watching him go through this.

Good TV: Surgery Saved My Life

A few days ago Rob and I watched the show, Surgery Saved My Life on the Discovery Channel. The show was about a teenager who underwent epilepsy surgery and had a very positive experience--it's been 5 months since his surgery and he's still seizure free. I can't hear enough of these positive stories, but I need a box of tissues while I hear them!

The story was pretty amazing, although the narrator was a little too sensational at a few points. The family is Native American and the mom is a medicine woman. It was fascinating to see the surgeon willingly work with the family to combine two vastly different methods of healing.

Waiting for Vigabatrin to Arrive

After we got all the paperwork together to get Vigabatrin sent to us, it took me three days to fax all the info to the pharmacy in Canada. This is the side of me that I truly dislike--the procrastinator. In this case it was a mix of procrastination and dread though. I guess I still had a mental block to get over. It's a huge thing to decide to put your child on a medication that could leave him with permanent vision impairment and even after Rob and I made the decision to go with this drug, my heart just isn't in it. I believe we are making the right decision, it's just hard to believe that something that sounds so wrong is now the right decision.

I also spoke with the pharmacist in Canada and he seemed very nice. We got a smaller amount of the drug than what Dr. Pearl prescribed because we don't want a 6 month supply of the stuff in case it doesn't work, especially since it's not cheap and not covered by insurance. We requested enough tablets for about 2 1/2 months and we should see some results within a month if Vigabatrin is going to have any positive effects on Evan's seizures. If this works we'll be equal parts elated and terrified!