Yesterday was another awesome day for Levi! We began by driving to Hanger Prostetics and Orthotics so he could be fitted for hand splints. He will have a combo splint, one part for functional use, then an add on part for keeping his hands open while sleeping. We had a super experience at Hanger! They were so friendly, and the person who helped us, Brian, was extremely knowledgeable, friendly, and terrific with Levi.
When we arrived at Hanger and I opened the car door, Levi gave me a huge toothy grin (he smiles with seizures a lot, but this was definitely a purposeful grin without a seizure!), and again when we were inside and I swung his stroller around to face me. His vision seemed much clearer at times. He made eye contact with Moga several times, for a longer period than normal. Levi was so happy. It's nice to see him content and trying to interact with us, instead of just laying around like a zombie. Is this due to the lower dose of Phenobarbital? I would think so. When we began the wean he was at 8 mls a day, and we are now down to 4 mls!
The seizures were severely less yesterday as well. Before the sudden spike in seizures over a week ago, he used to have in the area of 30-50 seizures a day. Since then he's been hitting 70-80 plus a day. Yesterday he had around 40! Last night at supper we increased his Clobazam to 15 mg. It will take a few days to see results, but we are praying that this works and we do not have to go forward with the ketogenic diet! We thank God for blessing us with these very positive improvements!!
When we arrived at Hanger and I opened the car door, Levi gave me a huge toothy grin (he smiles with seizures a lot, but this was definitely a purposeful grin without a seizure!), and again when we were inside and I swung his stroller around to face me. His vision seemed much clearer at times. He made eye contact with Moga several times, for a longer period than normal. Levi was so happy. It's nice to see him content and trying to interact with us, instead of just laying around like a zombie. Is this due to the lower dose of Phenobarbital? I would think so. When we began the wean he was at 8 mls a day, and we are now down to 4 mls!
The seizures were severely less yesterday as well. Before the sudden spike in seizures over a week ago, he used to have in the area of 30-50 seizures a day. Since then he's been hitting 70-80 plus a day. Yesterday he had around 40! Last night at supper we increased his Clobazam to 15 mg. It will take a few days to see results, but we are praying that this works and we do not have to go forward with the ketogenic diet! We thank God for blessing us with these very positive improvements!!
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