Patrick and I had decided when Levi first began Clobazam that we would finish out the increase schedule. Many of the meds he's been on in the past made the seizures worse as we went up on the dosage, and so of course we did not continue. After the last few days, however, I'm questioning the wisdom in that. Upon initially starting Clobazam, the infantile spasms seizures maintained at the same amount as when he was on Clonazepam (which Clobazam replaced), and brought the focal seizures from around 12 a day down to about 4. The length and severity seemed much less as well. We were pleased. As we've increased the dose, both types of seizures have gotten worse. The focal seizures have gone up to around 20 a day this week, with longer duration. We also have to keep in mind that as we are increasing Clobazam, we are decreasing Phenobarbital. So what are the answers here? I certainly don't know. I plan on calling our neurologist tomorrow and letting her decide. She knows way more than I do! So far our next step will be the ketogenic diet.
Our OT Diane worked with Levi on a ball this morning. It was just an ordinary play ball. She draped him over it and rolled him, and it was the perfect size for him to kind of lean over while standing and bearing weight on his legs. He loved it! I was so excited I ran right out and got one for him. We haven't used it yet since he wasn't feeling well today, but I'm looking forward to playing with him and doing some therapy that is fun! Our vision therapist, Becky, brought some brightly colored toy flowers that Levi enjoyed, and I picked up some of those as well. I put the blue and yellow one on the side of his lambie bouncer. He was mesmerized! For the rest of the afternoon he watched his toys, the flower on the right, the other toys on the left. It's SO good to see him seeing better and being interested in something!!
Even though he was a bit under the weather today, he took a super long nap and woke in a good mood. He was full of smiles and huge grins. Unfortunately he was also full of seizures. So much so that we didn't get very far into the bottle that he actually wanted because he kept seizing. He made up for it at dinner, though!
Please pray for wisdom for us as we consider what should be done about Clobazam and the ketogenic diet. Thank you for all your prayers!
Our OT Diane worked with Levi on a ball this morning. It was just an ordinary play ball. She draped him over it and rolled him, and it was the perfect size for him to kind of lean over while standing and bearing weight on his legs. He loved it! I was so excited I ran right out and got one for him. We haven't used it yet since he wasn't feeling well today, but I'm looking forward to playing with him and doing some therapy that is fun! Our vision therapist, Becky, brought some brightly colored toy flowers that Levi enjoyed, and I picked up some of those as well. I put the blue and yellow one on the side of his lambie bouncer. He was mesmerized! For the rest of the afternoon he watched his toys, the flower on the right, the other toys on the left. It's SO good to see him seeing better and being interested in something!!
Even though he was a bit under the weather today, he took a super long nap and woke in a good mood. He was full of smiles and huge grins. Unfortunately he was also full of seizures. So much so that we didn't get very far into the bottle that he actually wanted because he kept seizing. He made up for it at dinner, though!
Please pray for wisdom for us as we consider what should be done about Clobazam and the ketogenic diet. Thank you for all your prayers!
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