Monday, June 24, 2019

Vagus Nerve Stimulator, CBD Oil Fail

Last week, Levi had the Vagus Nerve Stimulator surgically placed under the skin on his chest.  This will send electrical pulses to the brain every five minutes to keep the seizures at bay.  He is currently having 40-50 seizures a day, which is an educated guess.  The majority of his seizures are very quick, lasting only a few seconds, peppered with longer, harder seizures lasting one minute or so, where his head and face tick, he vocalizes, and sometimes laughs hysterically.  He has Lennox-Gastaut syndrome, a condition that often follows on the heels of Infantile Spasms, which he contracted at five months old.

We did try CBD oil before resorting to the VNS.  First we tried Charlotte's Web, a strain of cannabidiol well known for having a great impact on childhood epilepsy.  It did not work for Levi.  His cognition, mood, and muscle tone improved, but the seizures were unaffected.  After about a year we realized it was the cause of his extreme insomnia.  I know, CBD typically aids in the ability to sleep, but we have learned not to ask Levi to be typical!

About a year later, we tried the new CBD prescription medication Epidiolex, which is specifically for Lennox-Gastaut and Dravet Syndrome.  Again, we saw an improvement in cognition, mood, and muscle tone, but the farther we increased on Epidiolex, the more his little body was wracked by seizures. 

We were disappointed, but not surprised.  Every anti-epileptic Levi has ever tried has worsened the seizures.  At 18 months old, he was having more than 200 seizures a day, while taking five different epileptic drugs.  He'd exhausted the supply of medication for his age group, so we turned to the Ketogenic Diet.  Success!  After some trial and error, a feeding tube, and then a colostomy, his seizures decreased substantially to around 20 a day.  He was weaned off all meds and maintained the diet for three years before his body could no longer tolerate the huge amounts of fat.

Since Levi tends to respond to alternative therapies, and we are again out of medications, we moved on to the Vagus Nerve Stimulator.  The device was turned on this afternoon.  It's too early to know, of course, how this will play out.  He did have a longer seizure at one point, and we swiped the magnet over the VNS as instructed.  The seizure stopped!  Over the course of the next several months, the strength of the electrical pulses will be increased every two weeks.  We are praying this finally does the trick!