Wednesday, February 1, 2012

a new month

It's February 1st - a new month.
We are starting this month off seizure free.  The last time we had a seizure free month was June 2011.

I bet that we'll get to add February 2012 to that list soon.  :)

I'm taking Ben to get a blood draw again tomorrow.  His results all came back normal from the last draw.  His depakote level was 77 (50-100 is considered a good therapeutic level).  His felbatol level is low so that means if seizures return, we can increase that med.  We will do these blood draws every 2 weeks.

We have been getting clobazam from Canada for the last several months.  It is now available here in the US.  It costs $40/month in Canada, but it would cost us $800/month if we didn't have insurance.  (Thank you God for insurance!)  Because it's brand new, there isn't a generic version yet.  But our neurologist gave us a savings card from the manufacturer that will help with our copay.  It'll probably end up being about the same considering we don't have to pay shipping any longer.  We will make the switch in about a week.

I am a little concerned about making the switch because even the slightest difference can alter his seizure control.  Some moms on the support group noticed a difference when they made the switch.  But I don't think any of them had complete seizure control when they switched so it still could be coincidental.

We are praising God:
~ for a blessing from a friend and her family...God gives us more than we could ever ask or think!
~ Ben has been seizure free!!!!!
~ we are starting to breathe a little easier and enjoy Ben's good health

We are praying:
~ that his switch to the US version of clobazam will be smooth
~ that Ben will remain seizure free
~ that they will be able to quickly find a vein tomorrow for the blood draw
~ for another family I've been talking with on the support group.  I can't share many details except that there are 2 children in this family with Doose and neither one is doing very well.  Please join us in prayer for C & P...

Thank you for loving, praying, and supporting us!

Remember to check out Team Ben's Epilepsy Walk - our team continues to grow!

2 comments:

  1. Yes Lord, Seizure free in February! May it be so!

    ReplyDelete
  2. We are so excited to see what God is doing! We are praying ... Every day!!

    ReplyDelete