Anti-Seizure Medications: A Drug Story

My only son, Gabriel, is on multiple drug therapy to treat his seizure disorder. By stating multiple drug therapy, I'm not talking about just 2 or 3 medications. I'm talking about 4 anti-seizure medications and 2 supplements that he has to take every single day. It's like a meal plan but in this case, i like to call it "Gamot Plan" (Medicine Plan). Here's how this crazy thing goes;

Morning

Phenobarbital 1 tab, Trileptal 5ml & Zonegran 1 tab

PLUS Folart 1 ml and Vitamin B6 (Pyridoxine) 100 mg

Lunch

Phenobarbital 1 1/4 tab , Zonegran 1/2 tab

Before Bedtime

Phenobarbital 2 tabs, Trileptal 6 ml, Rivotril 1/2 tab & 

Zonegran 1 tab

Being the primary caregiver of my little angel, I have to administer all these drugs to him every single day - after his meals. So you can just imagine what a typical day for me is like. It revolves around these drugs because that is what keeps my son alive. If I miss one, you wouldn't want to hear the end of it; because he has to maintain a certain drug level in his blood to keep him stable. 

When he was younger, I bring him to the laboratory every now and then so that the hospital divas can extract blood from him for his drug assay. Drug assay is a laboratory procedure which is primarily done to measure the level of anti-seizure drug that is in his blood - One assay for every anti-seizure drug. Because there is a need to maintain a certain blood drug level, abrupt withdrawal of any anti-seizure drug means trouble - a big one. 

Note: Not all anti-seizure drugs require an assay. Examples of anti-seizure drugs that can be subjected to blood assay are Phenobarbital and Dilantin. 

Gabriel used to take Dilantin years back but it caused him to have toxic liver. His liver function test turned out so bad and he was then diagnosed with Drug-Induced Hepatitis after only a year of taking Dilantin. His daily dose of Dilantin was then gradually tapered down and was replaced with a new anti-seizure drug. That is when I first met our new friend, Zonegran and then later on, Trileptal.


Gabriel has been taking anti-seizure medications since he was 4.5 months. One set of drugs after another... there was always this quest for the most effective drug combination. 

Identifying an anti-seizure drug is just half the battle. The other half is in establishing the right combination, experts call it adjunctive drug therapy. This is where the real challenge lies. 

Establishing an effective drug combination is much like finding a needle in a haystack. I swear it is much easier to convince the Iraqis to sign up a peace agreement with the U.S. than to come up with an anti-seizure drug combination that will work 100% for intractable or hard-to-control seizures. 

Watching my child have seizures every now and then during the course of the day (and night) while waiting for him to respond to the medications or to achieve the right and stable level of drug in his blood is heartbreaking. It's like seeing your own child hanging by a thread...on a cliff. 

His first set of lifeline were Phenobarbital and Tegretol. 

Phenobarbital

Then he was shifted to Phenobarbital, Tegretol and Topamax (?).

After a HUGE HOSPITAL BILL that brought cheers to Makati Medical Center and its doctors...

Then came Phenobarbital, Dilantin and Topamax. (This combination comes with free Drug-Induced Hepatitis, Gum Hyperplasia, and Metabolic Acidosis)

Dilantin

The side effects of these drugs caused us to spend a 2-Week Hospital Arrest at the University of Perpetual Help System - DALTA. The pain, fear and frustrations that my husband and I had to endure are, on the average, as long as the name of the hospital.

Then came Phenobarbital, Dilantin, Topamax and Keppra.

Followed by Phenobarbital and Keppra. MAJOR FAIL!

Then Phenobarbital and Zonegran. (They had a complicated relationship. A third party might spice things up)

Soon enough, it became Phenobarbital, Zonegran and Trileptal. 
(But it still wasn't enough)

And finally, a phenomenal mix of...

                    Phenobarbital, Zonegran, Trileptal and Rivotril.

They come with a back up, of course - Folart and Vitamin B6

(A winning combination - "quite" effective but costs a fortune)

and I'm hoping that this combo will be the last, the finale, the culmination, of this entire drug hullabaloo.

And the award goes to... Phenobarbital. I can't believe in the staying power of this drug through it all. From one hospital trip to another, it has always been there - unmoved, untamed by far more expensive drugs, never changed, never eliminated - not even once. It's the last one standing. 

Pretty soon, I'm positive that you, Magic 4 + 2, will all leave my son (and our pockets) alone, especially you, Phenobarbital. You are a friend that i will never, ever, miss.

Honestly, I can't wait for that day to happen.