set back

Well, Jack had a few seizures.

I still haven't been able to pin down what from. I don't think that it could be from the dried fruit that someone gave him, but I have read that forbidden food can cause seizure up to 10 days after and the first one was only 2 days after. That story is a whole other post but I have never been so livid with another parent. The other thing that changed was his nap schedule. We finally dropped the morning nap and we were able to do things like story time at the library, and play dates. But we're going back to two naps for the time being. Drats! We've also started giving him his meds right before we put him down for bed so that it's closer to 12 hours between doses. That means we have to pin him down and use a syringe to get some of them in, which is no fun at all. We (Jonathan and I ONLY) were planning on going away for 2 nights for our anniversary in December but because of all of this, I'm re-thinking it. I don't think my mom could get the meds in him with the syringe. I wonder if we get all of it in him because as hard as we try, he still manages to spit a little out.

So here are the things we've changed:

• meds 12 hours apart (or very close to it)
  
• added 2nd nap back in
• cut out kool-aid
• NO sleeping in the car

Two of the three seizures happened while he was sleeping in the car seat, which means that we aren't going to let him sleep in the car anymore. Of course that means that we don't go far from home and that we always head back an hour before nap time so that we can get here. And when I think about it some of the seizure that we saw towards the beginning of the diet were also while sleeping in the car. It means that the furthest we go for a long while is the doctors office at Dell Children's. The only exception to that is next weekend when we go to TSC camp (which is already paid for). We are really excited about it and the plan is to travel while he is awake and then attempt to get him to nap there. It really limits what we can do and who we can see but thankfully the weather is great right now and we have some good parks that are close.

Jonathan has been working a ton this week and I've been on the phone all week with the dietitian, the nurse, and our old dietitian trying to figure out what is causing these. I'm also officially done breast feeding so I think my hormones are all over the map, which really doesn't help.

I'm left wondering if this diet is going to be his miracle. We were two months away from starting to wean his meds and now the doc wants to increase them instead. (I'm supposed to check in with him on Monday and I want to ask questions before we do the increase.) I'm feeling like we are out of options, because if this doesn't work we are back to the surgery option which wasn't looking good to begin with. The chances of this being HIS cure is only 30% but after getting seizure free I was hanging my hat on him being in that 30%, now I'm not sure anymore. The good news is that I have heard stories of kids having break through seizures and then returning to no seizures for over a year. I suppose I was just hoping that for once my kid had caught a break.