Watching, Waiting, and Hoping that Third Time's a Charm

Third time's a charm or so the old saying goes. I hesitate to say that things are 'charmed' around here, but I will say that my youngest son is tolerating Topamax better than I expected. Topamax is the third anti-epileptic medication that he has tried. Tried. I say that as though it's like trying a new food or a new restaurant. If only it were that simple.

I can't say for sure that the Topamax is working. He has had at least one, and possibly two, seizures at school so far this year. Both occurred earlier in October at school. The neurologist increased the dosage of Topamax to 100mg per day - 50mg in the morning and 50mg in the evening. Finding the right therapeutic dose is a frustrating game to play. And it's not a fun game as you watch and hope for seizure control and hope against side effects.

No medication is without side effects. Some side effects of Topamax are: loss of appetite, difficulty concentrating, and memory problems. There are more, of course, but those are the most common. So far, I've noticed that he's not eating as much as he used to. He's eating, but his portions are smaller. To be honest, I haven't noticed problems with concentration or memory, but I have noticed that he is a little goofy. Maybe it's just my imagination, but since the dosage increase he seems goofier than usual. Being goofy is not officially a side effect, but I have read that other people on Topamax feel this way. Since my son can't tell me how these meds affect him, I read epilepsy boards to see how teens and adults describe how they feel when they are on these meds.

Some people seem to experience little or no side-effects and the medication works wonders for them. Other people, however, seem to experience moderate to severe side-effects that make taking the med impossible. And to add insult to injury, the med provides inadequate seizure control. It frustrates me just to read about it. I'm sure it frustrates the people taking the meds and the doctors who prescribe them. Epilepsy is just infuriating and frustrating all around.

In the meantime, chocolate pudding has become one of my best friends. Fortunately, the pills are small and I'm able to put each pill in a spoonful of pudding and give it to my son. Unfortunately, the pills leave a bitter aftertaste, so I give him an extra spoonful of pudding sans pill to help eliminate the bitterness. "Just a spoonful of pudding makes the medicine go down..." Sorry.


"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Medication Merry-Go-Round

Back in May I was lamenting the no-win situation of trying medication for my youngest son's seizures. At that time, we were starting the second medication (Trileptal) because the first (Keppra) had undesirable side-effects, a.k.a. "kepprage". With the Trileptal, there did not seem to be any side-effects and my son seemed to do well on it. Until the last week of May.

Shortly after Memorial Day, my son developed a dry cough. I dismissed it as being a symptom of allergies, or possibly an on-coming cold. However, as the days turned into weeks I realized that it wasn't allergies or a cold. For one thing, there wasn't the usual accompanying runny nose and watery eyes. And when he coughed, he wasn't spitting up mucus. It was just a persistent dry cough.

I began to suspect that it was a side-effect of the medication, so I did a little reading. Sure enough,  a dry cough can be a side-effect of Trileptal. Before calling the neurologist, I made an appointment with the pediatrician just to be sure it wasn't bronchitis or pneumonia. I didn't want the neurologist to think that I was a paranoid mom, so I took my son to the pediatrician first. The result? A clean bill of health. No bronchitis, no pneumonia, no nothing.

When we got home I called the neurologist. As luck would have it he was out of the office for that week. The nurse practitioner spoke with another neurologist in the office who recommended decreasing the dosage by half to see if it made any difference. It did make a difference in that it reduced but did not eliminate the coughing. Mmmhmm. The following Monday, July 1, I received a call from the neurologist's office and his regular doctor was back in the office. He wanted to wean my son off of Trileptal and start him on Topamax. I hesitated. My son had been on Topamax as a baby and he was a zombie. I said, "You know, we're scheduled to see you on Monday the 8th. Let's wait and talk about it then." In the meantime I weaned my son off of Trileptal per the doctor's instructions. Saturday was his last dose and what do you know? His coughing all but disappeared.

At the appointment, we talked about alternatives to Trileptal. Tiagabine (I think) came up as did Topamax. The doctor also mentioned Depakote, but said he preferred not to start my son on that just yet as it requires alot of blood work. I tentatively agreed to try Topamax again. We talked about possible side-effects: tingling in the hands, confusion, weight loss. Sigh.

Today, we're starting antiepileptic drug #3.

I want off this merry-go-round. I'm sure my son does, too.