Thursday, July 10, 2014

Myoclonic Seizures

Levi had an appointment with the neurologist yesterday, and we've learned that the new seizures he's been having are myoclonic.  He's had infantile spasms and partial (focal) seizures since he was a baby.  We've tweaked a few medications, and he wants Levi's daily calories to be reduced.  He is only at the fifth percentile for his age on the growth chart, but his BMI is at 85%.  He's too chunky for his length.  The doctor thinks cutting some calories should help the ketones stabilize, which will help reduce all the seizure types.

Otherwise, he's doing very well.  He was so happy and active at school yesterday that he was exhausted by the time we picked him up.  He wouldn't give in to a nap, though.  He stayed up through the neuro appointment, dinner, and the majority of church group.

Thanks for your continued prayers for our little miracle boy!

Tuesday, July 8, 2014

Ups and Downs

For the most part, Levi is doing very well.  He is growing stronger and learning so much in school.  He can sit up in the recliner without sliding to the side, he is able to hold his head up for longer periods of time and more often, he's learning to giggle, which comes out more like a squeal and is so adorable!  Levi wakes up happy in the morning, and only rarely has evening fussiness, which used to be an every day thing.  His smiles light up the room.  He loves riding the bus to and from school, probably because the ride is so bouncy and the driver and aide shower him with affection.

Unfortunately, he is still battling an increase in seizures, and the partial seizures, which were eradicated after starting the ketogenic diet two years ago, have returned.  The ketogenic diet makes the body burn fat for energy, instead of sugar, which produces ketones.  Somehow, it is not really understood why, these ketones can stabilize seizures.  Some children have actually been cured of epilepsy with this treatment.  Levi's ketones used to be high and stable, but for some reason over the past couple months, we have had a hard time keeping them in the range they are most effective.  The dietitian has been tweaking the diet ratio, which has helped.  Some days he has only a few seizures, others are more concentrated.  This morning, he had 15-20 in a row.  That's very rare for him now.  It wore him out.  He fell asleep three hours ago and is still snoozing.  If you know Levi, you know that is very odd for him, indeed.  He fights daytime sleep with an iron will!

We tried frankincense essential oil for a while because we learned it has properties that lessen or stop seizures in some people.  It didn't work for Levi.  That's okay, he is still having FAR less seizures than he did before starting the diet.  I'm excited for the newest epilepsy treatment to come available in our state.  Charlotte's Web is a strain of marijuana oil that is very low in the substance that causes a high, and is making great strides in wiping out seizures.

We appreciate all the prayers and kind thoughts for Levi!!

Levi snoozing on Daddy's lap :)

Levi enjoying Lambie vibrating seat. We were surprised he still fit!

Levi giving Moga kisses. He loves her so much!!