Game Plan

Super glad we heard from Dr. M at lunch time and didn't have to wait all day..after missing his call Friday evening and waiting all weekend!

Dr. M anticipates the Charlie Claire's lamictal level will increase just by her coming off the phenobarb.  C will take her last dose of phenobarb on Friday and she will get a blood test about 10 days after that.  Dr. M said her lamictal level may increase rapidly so we need to watch for signs of C being overly sleepy, out of it, etc. which would indicate a problem and we need to call immediately.

Hopefully the increase will stop these episodes. If the blood test shows the lamictal is at a good level and helping then we will work on getting Charlie Claire off Keppra followed by getting her off Klonopin.  We all agree that we do not want Charlie on multiple seizure meds long term. Dr. M isn't sure if the Keppra is doing anything to help these episodes and really the only way of knowing is to take it away. If we taper her off of the Keppra and things are still looking good we will then start tapering the Klonopin.  The Klonopin probably isn't helping C's episodes since she has been on it at the same dose for a long time.  Klonopin is one of the medications that your body becomes dependent on and in order to continue experiencing the positive effects you would need to continue to increase your dose - which we have not done. The Klonopin taper will take a while since C's body is dependent on it she could experience withdrawal (which could include withdrawal seizures) if they drop it to quickly.

If the lamictal is in the therapeutic range but is on the low end and not helping then they will try and get her level to 12 as quickly as possible. If we hit the 12 mark and have seen no improvement we will be heading up to VCU to meet with the team and discuss our next steps.

One thing I discussed with Dr. M. is if these episodes Charlie Claire is having could turn into infantile spasms again.  This is the form of catastrophic epilepsy C was having before her surgery and it severely impacts development. We have not seen a spasm since the morning of March 30. It is a fear of mine for them to return. Dr. M reassured me that the infantile spasms should remain in our past and that it isn't a concern of his. He also reminded me that if these episodes were having any type of negative impact on C's development they would be much more aggressive in their approach with this.

We are grateful we got to speak with Dr. M today and go over all of our questions/concerns/etc.  It is a huge help for us to be able to go over everything with Dr. M and for us all to be on the same page.

Tomorrow our sweet little ones turn ONE! Not only will we be celebrating them but we will be celebrating how far we've come in this year...