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.

this is 'oh so true'

Source:  quoteko.com

I'm a Limited Edition Mom

Take some time to know me... (because I would love to meet other moms who are in the same bandwagon as me):

I'm a mom of a 7-year old angel with idiopathic seizure disorder, global developmental delay and special needs. (Perhaps, this is the closest and most accurate description of myself). I'm also my son's primary caregiver.

I'm a licensed Physical Therapist.

Friends say I'm a "jack of all trades" - a master of none given the fact that I worked under different industries. I worked as a physical therapist, professional health specialist representative, professional health specialist supervisor, sales manager for a wellness clinic, junior brand manager for an immune system booster and an OFW in Dubai where I worked as an office staff for a general trading company that specializes in both building materials and beauty products (quite a confusing mix, huh). 

I'm 36 years old. I'm a sucker for work-from-home jobs. My husband and I also run a small business - a laundry station near a university. 

For almost 7 years now, I'm working as a freelance web-content writer, academic writer and researcher, blogger, and online seller.

I love to cook, I'm a frustrated baker. I like experimenting in the kitchen. I love making dinners for my husband and friends. (Being a housewife unleashed the domestic goddess in me). 

Whenever I'm happy or excited about something, I sing in the shower and dance like crazy.

      
My only hope is to travel the world someday. But that only comes second to wanting my son to develop and improve his motor and cognitive skills, stop having seizures and gain independence. 

A few minutes ago, I decided to start dreaming again. (When all my dreams, ambitions and aspirations dissolved into thin air years back, I stopped believing in dreams. I thought they weren't meant to be real. That is why they are called "dreams". Because they can only happen when we are asleep. However, just now, or a few minutes back, I have made a decision to start building my dreams again. The trouble is, I don't have an idea what to dream of.)

Just a thought. How about becoming a billionaire so that I can afford to pay for anything & everything for my son? I would love to have more than enough riches to last 10 lifetimes. I want to help other people with special needs especially those who do not have the means to support the medical demands of their condition.

Well, we shall see what we shall see. As always, what will happen next remains to be unseen. Good luck to us moms of special children. Our angels should always be our top priorities regardless of who we are, what we have, and what we'll become in the future. Special children need special attention, unconditional love and genuine care. They know the people who are true to them because they feel.

Let's just be good moms for our little angels. They need us.

* I'm not the owner of the above images.Credits to the owners of the images used in this blog post.