Monday, March 1, 2010
Ouch... Been awhile eh?
Yes, it's been a while.... what, about 9 months?
I could make every type of excuse, but to be honest, this has just not been a priority. It's been a bit of a whirlwind 9 months. We've gone from losing jobs to starting companies and thrown in a new baby for good measure.
But, like any good addict, we've returned.
So, let me take a moment and update everyone on Charlie. At the last time of posting, we were having some serious problems with Charlie's seizures. We were dealing with his meds, on and off, what to do next, etc, etc, etc. The doctors wanted us to do the ketogenic diet but weren't really sure. We were working with our DAN doctor and trying all sorts of who know whats enzymes and supplements, and just nothing seemed to be working. We had taken him down to no meds for a little while to more or less 'clear out his system.' The results created some of the worst days of seizures we'd had. He was having 3-5 grand mal seizures a day, sometimes just starting to wake up after several hours of being passed out on the couch, only to have another one and drop again.
Shortly before our last post, we decided to resume the only med that had ever really had a positive effect on him - B12 shots. We started them up with the intention of ramping back up his to all his meds. As before, we immediately saw a 'softening' of the seizures and they were coming less frequently -- about one every few days.
We stuck with this over the course of 2 weeks and then one day we just forgot to give them to him. We went for about 10 days when we realized we hadn't been giving him anything. We actually hadn't seen any seizures in that time so I figured I'd just let it run and see what happened.... and here we are.
We're now officially 8+ months without a seizure from a boy that has had at least one seizure (often times 10-20) a week since he was one year old!!! AWESOME! We would've posted this sooner, but really we just couldn't believe that it was real. After three years of dealing with these, it just seemed too good to be true.
Steff and I still have dreams about Charlie seizing. I imagine it will take some time to really believe that this part of our life is behind us. But thank goodness we're seizure free.
So, with the seizures behind us, we've moved on to dealing with some of the other issues, like behavior and speech. He's now 4 and a half years old and is essentially non-verbal. His behavior is still crappy. That's next problem to tackle.
On other fronts, we've officially launched our new company that sells autism toys and other toys for kids with special needs (and kids without special needs as well).
Oh yeah... and we've had our baby - Lucy Kate McGhie.