Apologies once again for the long time in between updates.
Over the last little while we've been working with different combinations of meds, etc. As mentioned in a previous post, we started with the vitamin B12 shots. We actually started to see some positive results with the shots over the first couple of weeks, but in the last few weeks things have started deteriorating quickly. Charlie's seizures have dropped in frequency but increased in intensity. He's been having 2-3 Grand Mal seizures a day, more powerful and involved than we've ever before seen. These new seizures are accompanied by severe convulsions and in some cases he's not breathing for up to 30 seconds. After these seizures, which last between 30 seconds and 3 minutes, he is exhausted. He'll typically sleep between 2-4 hours after a seizure. People who have these types of seizures compare the physical exertion to running a marathon. They're pretty intense.
In the interest of trying to kick these, we've felt like we should step back from all the meds he's on and try to establish a baseline. It's been over a year since we've seen what the seizures are like without any meds in his system, so we've decided to go med-free for a week or so and see where we're we stand. From here, we're going to start playing with the meds one at a time to carefully gauge what sort of effect they are having on the seizures and the autism behaviors.
We'll keep you all posted.