Tuesday, December 13, 2011

EEG, New Medication Clobezam

The EEG went very well. Our favorite tech Roz took very good care of us.  It was great to see her again, and she was surprised by how big Levi has grown!  We caught a lot of seizure activity, so I feel confident we will have a clear picture of exactly what's going on with him. It will take about a week to get the results.  Levi had a lot of difficulty sleeping again last night.  I was so tired I just let him fuss a little bit.  He had a LOT of seizures overnight, which is not usual, but if it had to happen it might as well be while he's hooked up to an EEG.  Finally he allowed me to put him on his side, and he curled up and fell asleep.  He's still sleeping now, looking like a sweet little cuddle bug.  I'll post pics later.

Our neurologist came by to see us last night, and I'm excited about the path they want to take with meds!  We will be starting a new medication that has just been approved in the US a month ago, but has been widely used in other countries like Canada, Australia, and in Europe for years. It's called Clobezam, and the reason I'm so excited is that it's in the same family as Clonazepam, which Levi has taken for months now, with very good results, except that it causes extreme sleepiness, and when we try to increase, he's even been lethargic at times.  Although the new med can cause sleepiness, it is not so extreme. So we are praying that we will see all the positive effects without the negative side effects.  We will begin that in a week or so.

Please keep this in your prayers. It would be so wonderful if we could wean Levi down off his other meds and only be on Clobezam to control the seizures!  We want to see our little guy wake up and start having fun and learning!  I will post pics later.

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