Good News - Bad News

The bad news: Oliver had a seizure last night.

The good news: It was the first one (we think) in about 10 days. That's Oliver's longest stretch between seizures since JUNE!


Unfortunately, as I witnessed, it looked a little different. He was sort of stiff and panicked looking holding his arms still and had about 10 spasms which I could only see in his face, not his body. I'm wondering if it was a new seizure type like a tonic seizure with some spasms in the middle. Either way though, we wouldn't change his course of treatment anyway, just keep trucking on with the diet and hope to see less of these as time goes on. He got fussy afterwards and it made me wonder if some of the times we hear him crying in his crib and run to get him....if he had a seizure prior to that and we didn't see/hear it. Since this one was more mild he was kind of wimpering but wasn't screaming like he used to with his spasms. So perhaps he has had more of these in the past few weeks and we just didn't know? Again, still won't change our course of action for now (wean the IS meds and keep on with the diet then re-evaluate med plans).

After his seizure he had a 30 minutes crying fit while Jason tried to get his meds into him. But then he did settle down and went back to cooing at us while we made his dinner. He's still not eating full meals some of the time , and now I'm wondering if it's the reduced calories that have been giving us the most seizure control we've had in months? Something to ask our keto team about.

We are very excited for Thanksgiving and the little break we'll have from work to hang out with the boys. We are hoping Oliver has continued health over the next few weeks so we can really work on his therapies. The alertness we've seen in the past 2 weeks while the seizure were reduced is so encouraging to us.

Our moods are directly tied to Oliver these days...when he's doing well we're all feeling optimistic. When he's not...we all get really down. Even Tobin is becoming more and more aware of just how much his brother has to go through. While he was having his seizures last night Tobin would not leave the room. I told him he could go play or watch a tv show but he said "maybe I'll just stay here in case you need anything for Oliver". it's so sweet and at the same time I want to shelter him from all the sadness involved with Oliver's diagnosis but I know that as he gets older he is understanding it all better. On our ride to school each morning he says "I hope Oliver doesn't have another seizure or a fever today". Such a great big brother, Oliver is so lucky to have him.