Refractory Epilepsy

Epilepsy Awareness Month. Day 2!

Refractory epilepsy simply means seizures that aren’t controlled by medication, and to be diagnosed with epilepsy one has only to have two or more seizures. That’s it, any more than one and you get the prize. It doesn’t matter how the seizure presents or the cause. Just have two or more and BAM! Apparently, or at least according to the first ER doc to see our little man, “everyone gets one!” After one, however whether because of injury, genetics or otherwise, the patient is officially diagnosed with epilepsy.

For most people, one med is enough to keep them from ever having another seizure.

For my son, nothing has worked to stop his seizures. Refractory epilepsy is his official diagnosis.

There are different types of seizures. Some are caused from injury or detox. Some are caused by genetic disorders or come in combination with other conditions. And then there are those cases in which there is no earthly knowledge of cause. As is with Buddha, we are waiting for science and it’s noble doers to catch up and rescue him! God knows they’re trying!!!

Buddha has a handful of seizure types. Tonic clonic, generalized, partial, myoclonic jerks, absence, and subclinical. Everyone has the potential to seize but most people’s brains have mechanisms put in place to stop the firing from turning into seizures. To prevent misfiring when the body doesn’t have those mechanisms in place, there are hundreds of medications people can try. Although most are just variations of the same handful of drugs created to work by how body’s metabolize the chemicals. There are also no drug trials for children’s Epilepsy drugs. Kids are always growing and changing so there’s no way to set a baseline. Its all trial and error. It’s a clumsy dance in the dark where we hope to find a positive connection…that doesn’t lead to a spark.

For most people one med is enough to keep them from ever having another seizure.

Because Buddha’s epilepsy is refractory, he has to take many different kinds of meds and consistently switch to new ones as his body works around the seizure fighting components of the latest and sets his brain ablaze yet again. Finding the right combination is like winning the lottery. Let’s just say, the odds are not in our favor.

Buddha’s seizures, besides being debilitating and dangerous, cause development delays and emotional outbursts laced with anxiety and confusion. His medication causes behavioral side effects, metabolic side effects, fogginess, confusion, exhaustion, attention issues, emotional regulation issues, and more. He is also on a diet that keeps him from eating ANYTHING normal and gives him intestinal issues and acidosis if not maintained perfectly.

Even with all this vigilance, his brilliant team of doctors, the miracles of today’s modern science, of which there are many, and the constant maintenance by us and his caregivers, he still seizes almost every day.

When his body metabolizes his meds, they either make him toxic or his body burns through them in a way that renders them barely effective. We’re out of meds to try at this point, so we mess with dosages regularly.

That is the short hand version of his story.

THAT BEING SAID, he is at home and not in the hospital! So, thank God for the benefits the meds do provide, even if they can’t stop the seizures completely. He is home, he has friends, he is learning, he has fun, he ice skates and plays baseball. He smiles and he knows he’s loved. He knows he’s good! He knows that he is a good person who did nothing to deserve this.

At least I hope he knows that! After my prayers for a cure, It is my greatest wish.

Somehow, he gets up most days with a smile on his face and super powers in his back pocket. Some days are even really good and he makes it through without a hitch.
It’s not a normal life.

It’s not an easy life. It’s not as bad as it could be…as it has been in the past.

He’s alive and he’s amazing! And even though he swallows handfuls of meds every day, even though he’s often confused and his “brain is going backwards”, even when his heart breaks with overstimulated taxation or he has trouble carrying on a conversation, he never gives up. He believes he can do anything!

He still seizes almost every day.

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