Another Drug

Pictured above is Bertrand's current "breakfast". (Missing from the picture are miralax and phlexyvits, but Daddy took the picture, not me.) It seems like we can never add just ONE item without requiring several more. In fact, more than half the stuff in the picture is needed because of a problem caused by some other item in the picture (e.g., keppra binds with B6, zonegran causes stomach ulcers, the ketogenic diet is low in vitamins and causes constipation, etc.).

This is actually not a lot of medication compared to some other kids we know, but it is still more than Daddy and I would like for Bertrand. That's why I cringe at the thought of adding another medication. But, that's the point we are at with Bertrand's seizure management. Bertrand's seizures, particularly the atonic (drop) seizures, have gotten much worse. We would be adding a new seizure medication in the hope of reducing this number and to be allowed to wean another medication that is not working. (Zonegran has provided no seizure relief but plenty of nasty side-effects.)

So, at Bertrand's neurology appointment last Thursday, the neurologist laid out three medication options: Valproic Acid (Depakote), Topiramate (Topamax), and Lamotrigine (Lamictal). These three drugs are metabolized in the liver, and up to this point we've shied away from putting any additional stress on that particular organ. Liver damage and liver failure are not topics doctors or parents take lightly! However, according to Bertrand's gastroenterologist, the current state of Bertrand's liver damage and treatment is stable. Since Bertrand's quality of life is suffering significantly, we can proceed with hefty doses of caution (extra blood draws, constant monitoring, etc.). After all, a liver doesn't do you much good without a brain--and vice versa. Striking a balance is important.

• Depakote: Used for generalized convulsions and absence seizures. Fast results. Side-effects include liver failure, stomachaches, increased appetite, weight gain, change in personality, irritability, tremor, hair loss, decrease in platelets, Stevens-Johnson Syndrome (allergic rash), and tiredness.
• Topamax: Used for several seizure types including partial seizures. Moderately fast results. Side-effects include tiredness (hence the nickname Dopamax), irritability, language problems, behavioral problems, decreased appetite, weight loss, dizziness, kidney stones, acute glaucoma, decreased sweating. (Effects made more severe in conjunction with ketogenic diet.)
• Lamictal: Used for several seizure types including partial and complex-partial seizures. Slower results. Side-effects include Stevens Johnson Syndrome, tiredness, dizziness, vomiting, ataxia.

The choice of medication was left up to us, Bertrand's parents. We are well-versed on the pros and cons to each one from the handouts given to us by the doctor and our own excessive research. We also reached out to our vast online network consisting of parents of children with intractable epilepsy and movement disorders. This was invaluable, but it was like drinking from a fire-hose until patterns started to emerge.

While it is the drug our neurologist has the least experience with, we feel that Lamictal is a conservative first choice. In comparison, Depakote's liver risk is just too high and Topamax's cognitive effects too severe. The greatest concern with Lamictal is an allergic response called Stevens-Johnson Syndrome, which is addressed through a slow introduction. (This is why results are seen much later than with the other drugs.) But, liver involvement is minimal, it is used with success by kids with multiple seizure types and, in particular, complex partial seizures (some of Bertrand's most insidious seizures). Furthermore, a child similar to Bertrand, with a movement disorder AND seizures, went seizure-free with Lamictal.

We have to start somewhere, so Lamictal it is.