Pharmaceutical Hell

Devastated.  That's the only way to describe the feeling of knowing that the path ahead for your child was going to be so difficult and uncertain.  Infantile Spasms was no ordinary form of epilepsy.  It was insidious and it was devious.  The seizures associated with them don't look like the seizures you typically think of.  When I think of a seizure, I think of someone convulsing uncontrollably.  With these, they were quick and in some cases, barely noticeable.  The damage was being done internally, to the brain itself. 

The best analogy I can give to Infantile Spasms is that it acts like an Etch a Sketch to the brain.  Everything Rhythm had learned up through seven months had vanished, like someone had shaken the Etch a Sketch and wiped away what had been drawn.  That happened with every attack.  Rhythm was not advancing developmentally much beyond a 1-2 month old baby, even as the days and months were passing.

Part of this issue can be attributed to the very things that were supposed to be helping her - the medications themselves.  In the hospital, the only priority was stopping the seizures.  She was given a witches brew of pharmaceuticals starting in the hospital and beyond.  A seven month old child's body can only handle so much.  Every one of these drugs had side effects, much like you see on television every time they show a commercial for something that cures something but has 25 awful side effects.

Here is what they prescribed to her, and the associated potential side effects:

Phenytoin Sodium IV - this was given at the hospital in the form of an IV.  Notwithstanding how traumatic it was for both daughter and mother as they kept sticking the IV in places all over her body trying to make it work.  The condensed list of side effects include:  Toxic Effect on Brain or Spinal Cord, Drowsiness, Easily Angered, Fever caused by Administration of a Drug, Involuntary Eye Movement, Involuntary Quivering, Nausea and Vomiting, Overgrowth of Gums Onto Teeth, and Rash.  That is not even half the list.  THIS DID NOT STOP THE SEIZURES.

Rivotril - This was the first of three medications that Rhythm was to start taking together after being discharged from the hospital.  The condensed list of side effects include: Drowsiness, dizziness, tiredness, loss of coordination, increased saliva production, easy bruising/bleeding and signs of infection (such as fever, persistent sore throat).  Rhythm was almost always asleep and in a vegetative state.  THIS DID NOT STOP THE SEIZURES.

Valproic Acid - the second of three medications, and one of the most damaging.  Although it is known as an anti-epileptic drug and is often used together with other meds, the list of side effects is jarring: diarrhea, constipation, upset stomach, dizziness, drowsiness, weakness, hair loss, blurred/double vision or other vision changes, ringing in the ears, shakiness (tremor), unsteadiness, weight changes, unusual or unpleasant taste in your mouth, chest pain, easy bruising or unexplained bleeding, fast/slow/irregular heartbeat, swelling of hands or feet, uncontrolled eye movement, feeling cold/shivering, rapid breathing, or loss of consciousness. THIS DID NOT STOP THE SEIZURES.

Phenobarbitol - the third of the medications for Rhythm, and one that was supposed to calm the brain during times of seizures.  Standard side effects include: drowsiness, headache, dizziness, excitement or increased activity (especially in children), nausea and vomiting.  THIS DID NOT STOP THE SEIZURES.

During the several months that Rhythm was on all three of those medications, she was either asleep or crying or having seizures.  It was absolute hell for Jen.  She did not have a child who would laugh, smile or even make eye contact.  It was as if Rhythm was blank.  She always had a sad look about her.

It was heartbreaking, and as insidious as Infantile Spasms is, these medications were just as bad.  They weren't stopping the seizures, so what is their use?  To turn our child into a vegetable?  Most every child with Infantile Spasms has a reason that it happened, such as a traumatic brain event at birth, damage to the brain or even genetic factors.  The doctors who initially worked on Rhythm did not delve deep enough into her cause, and some of the more effective medications such as Sabril were not even available in the Philippines.

Jen could not sit idly by and watch as the meds and the seizures took their toll on Rhythm, and potentially even threatened her life.  It was time for a different path.

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