John's neurologist is retiring

We knew it could happen at any point, but it still was a bit of a shock. After 38 years as a pediatric neurologist, he's closing up the clinic next month. We owe him a lot, as I don't believe any other neurologist would have been so aggressive in getting John on the keto diet and ultimately getting the VNS for him, all within 9 months of seizure onset. That being said, I think he was running out of things to try, so we were already talking about trying to see another doctor just for another opinion. So, the timing isn't that bad for us.
We scheduled one more appointment to see him in the next couple of weeks. We need to discuss our plan of action before we can get an appointment with another neurologist. And, we have to talk about what will become of his referral for us to go to UCLA. I'm not sure if that is still an option or not.
So, we now need to find a new neurologist. I checked with my insurance and the only 2 that are "in-plan" are not good choices for us. There are 3 at OHSU which we're going to try to get in to see. We tried once before and they weren't taking new patients, but it sounds like we may be able to get in now due to the circumstances. OHSU is an "out of plan" hospital for my insurance, so we'll have to pay a lot more now, but we don't really have any other choice.
We finally took John to get his labs done again. It's been quite awhile since he's had to do that. We wanted to do it ASAP, in the hopes that the results will be back before we see his doctor for the last time. We're mostly interested in his Lamictal level, so we can determine if we have any more room to play with his doseage. Of course John doesn't particularly like people poking him so it always a bit nerve-wracking to have to do those labs. He screams like he's going to die, and gets really tense, which just makes it harder to get the blood.
As for John's seizures, they have gotten a bit worse again. He had well over 20 yesterday, some of them a couple seconds long with shaking. But, at the same time his spirits are great right now. It just seems like the days when he seems more clear are also the days when he has a lot of seizures. It's a trade-off, but as long as the seizures don't progress to anything more drastic (like drops or tonic-clonics) then I think it's better this way.

Tough couple of weeks but better again

After my last post, John went through a pretty tough couple of weeks. His seizures got strong enough that we came close to having him wear a helmet again. On a few occasions, he looked like he might be going in to a grand mal seizure again. Thankfully, that didn't happen. He also continued to have other strange behaviors like he would spit out almost anything he ate. He wanted to eat, but every time something went in his mouth he'd spit it out and cry. We took him to the doctor and the dentist to try to find a cause but they couldn't find anything. It was probably seizure related, but who knows. Thankfully, this behavior has also disappeared over the last couple of days. He did end up getting a pretty bad cold, so maybe all of this was related to an upcoming sickness.
Due to his cold, we haven't gotten his blood draw yet. We'll probably do that in the next week or two. I don't think there is any real hurry.
We had another meeting with the speech therapist, and we now have a plan to work on over the next month. Yoshie has been working pretty hard with this last week and I think it's paying off. He hasn't made any huge jumps, but he does appear to be learning a bit.
The last 2 days, John has really seemed to return to his normal self. He's had less than 10 seizures each of the last 2 days, and is happy most of the day. It really felt like things were going downhill quickly a couple of weeks ago so it's nice to be back to where things had stabilized.