Hope Writes Its Own Story

As you know, Simon's seizures have been a real source of stress this summer. He was having myoclonic jerks again, staring spells,eye twitchy things and hand wringing. School was noting 20 or 30 in just a few hours! We were able to have another 24 hour eeg and it was very helpful. We found out that the only thing that are seizures are the myoclonic jerks. He did have several staring/zoning out episodes and they weren't seizures. He had been drooling much more, sleeping more, not eating well or as much, was more tired and lethargic and not doing as much.

He was on the following meds:

8 ml Keppra 2x day

110 mg Lamictal 2x day

100 mg Topamax 2x day

.0125 Clonapin 1x day

5.625 mg Tranxene 2x day

The neuro thought perhaps some of the meds were causing the bad behavior (sleepy, zoning, etc) so we're going to fiddle a bit. We backed off some of the Tranxene, giving 3.75 in the morning and increased the Clonapin to .25 in the morning. We're hoping the clonapin will ward off some of the jerks,and it does seem like its working!

We check in with neuro again tomorrow or Monday to see if we'll make some further changes. But today, he didn't sleep as long at school AND he was able to stand at school AND at home! He stood well yesterday at home for the first time in months and that he could do well twice is great. PLUS, he's been eating better. He's improved with everything every day this week, so I really pray we're on an upswing!