We started off on Trileptal before we got the Doose diagnosis.

The first med we tried was Zonegran.  It was his first time to swallow pills and he did great! 

Then we moved on to Keppra.  I was very scared of the side effects of this medication.  We didn't see any for the time we were on it.  But it didn't help at all.

We started using Clonazapam on a regular basis rather than just as a rescue med.  It seemed like he continually built up a tolerance to this one.

Then we tried Topamax.  We stopped this med because we were concerned about possible kidney stones.

When that wasn't working, we added Depakote.  During our 2nd stay in the EMU, we tried to get his levels up using an IV.  We got to full dosage and still didn't see any improvement, but we are still using this med as well.  We had to use IV again on Christmas, but it hasn't helped.

The doctor ordered ClobazamThis drug is currently not FDA approved and available through Canada.  In combination with Topamax and Depakote, we had 4 seizure free days.  Then the tonic clonic seizures came back with a vengance.  We only have one more increase available to us on this med.

The Ketogenic Diet is our next option.  We are really hoping that the Clobazam will be the one.

As of January 2012, we just stopped Tranxene because he had some adverse affects from it.

We are currently on the ketogenic diet, clobazam, depakote, and unfortunately still having to use clonazapam on a regular basis.  We are starting felbatol tomorrow.  If that doesn't work, then we will have to go to IV steroids.

***Update April 2012:  We are using depakote, clobazam, clonazapam, felbatol, and a 3.5:1 ratio of the ketogenic diet.  We just celebrated 3 months of seizure freedom!  We are overjoyed to have finally found our "magic bullet".

***Update September 2012:  We have started to wean clonazapam.  Ben has been seizure free since January and we are ready to see if he can maintain it with fewer meds.  If all goes as planned, he will only be on clobazam, depakote, and felbatol by the end of November. 

***Update April 2013:  We have successfully weaned clonazapam and clobazam and the ketogenic diet!  Currently he is still seizure free using only depakote and felbatol.  Our goal is to be off of depakote by the end of the summer.  We go back to the neuro in June. 

***Update October 2013:  We have successfully weaned Depakote!  Ben still has seizure control using only felbatol.  We are hoping that with Depakote gone we will see improvements in the area of slowed processing and reduction of ADHD type characteristics.

1 comment:

  1. HI! My name is Amy. We started the ketogentic diet with our little boy last week. He also has doose. Reading your blog has been an incredible blessing to me. This whole experience can feel so isolating, even with great support and the loving arms of God holding us tight. Thank you for sharing your walk. You are blessing our family.

    So excited that your sweet boy is experiencing seizure freedom! I hope and pray we will be able to have the same success.