So it has been a really long time since I updated this blog. When I started this blog, I planned to update it at least once a month, but life always seems to get in the way. I always come up with these great ideas for topics, but parlaying that into actual substance is another story. I usually only have one arm free, since Thane seems to be glued to my side. So I'm stealing a few moments to write a quick update. In August, I attended the Idea League Conference in Connecticut. A doctor from John's Hopkins spoke about the Modified Atkins Diet and I came home determined to try it. Its success rate is almost as high as the Ketogenic diet, but you don't have to restrict calories and you only have to count carbs...much more doable for us. We planned to start it right away, but my Mother-in-law was having a pure grade of Taurine formulated for Kael and we wanted to try that first. Taurine is an amino acid that we hoped might help his seizures, or at the very least, improve his cognition.
It took a lot longer to receive the Taurine than we had hoped, so we began it on September 30. Although we do seem to see some improvement in Kael's cognition. His seizures have not improved at all. We also began weaning him off of Clobazam. If we look back over the past 6 months, we have seen no change in Kael's seizures no matter what we do. We have raised and lowered Clobazam (and have now completely removed it), raised and lowered Stiripentol, added Topamax, and added Taurine. He continues to have an average of 15 Generalized Tonic-Clonic Seizures (grand mal) a month. The day after we completely removed the Clobazam, Kael had tons of seizures (GTCs, absence, complex partials, non-convulsive status) but after a day, he seemed to go back to his normal schedule. The non-convulsive status was a new thing for him (as far as I know). I didn't actually realize he was having a seizure until it broke. Basically, for over an hour, he was out of it - non verbal, chewing, barely able to walk. At first, I just thought it was a result of having 3 GTC's earlier in the day. I began to suspect it was a seizure when it broke instantly. At least now I know what it looks like and will give him emergency meds after 15 minutes, if it happens again.
Our next step is to start the Modified Atkins Diet. We will begin this the first week of November. After 2 weeks, we will begin to wean the Stiripentol. We have decided to wean any and all drugs, since nothing seems to make a difference. If he begins to have more seizures, then of course, we will stop the wean. But at this point, we feel that the drugs are pretty useless. Our hope with the diet is that: 1)we will be able to take him off all meds 2)his cognition will begin to improve 3)his seizures will decrease. We are not that hopeful that his seizures will decrease, but if we can maintain his current status without drugs, then we will consider the diet a success.
Thank you for your continued prayers and support - it means so much to us!