Andrew's staring problem

Dear Andrew & Abby,

Today I'm going to tell you the story of Andrew's seizures.

One night, when he was about six months old, Mommy and Daddy woke up because strange noises were coming through the baby monitor from Andrew's room. We went in to check on him and when I picked him up, he wouldn't look at me. He was making a bah-bah-bah-bah sound over and over and was pretty listless. Mommy and Daddy didn't know what was going on, so we freaked out a little. We took Andrew to the emergency care center where they told us that what we had seen was a febrile seizure. Andrew had a high fever and an ear infection when they checked him out, and the doctor said that the high fever probably brought on the seizure. But not to worry, febrile seizures were fairly common and children usually grew out of them pretty quickly. Many only have one and never have another. Unfortunately, that wasn't true for Andrew.

Over the next two years, Andrew had several more seizures. Each one was different, but most were not full blown gran mal seizures. The worst one happened while we were out of town at Grandma Jamie's for Thanksgiving. Unfortunately, we knew that one was coming, but couldn't get the Tylenol in time. It was a gran mal. Andrew convulsed and turned blue. I called 911 for an ambulance and had to stand just out of reach from Andrew on the wall phone while I watched my little boy turn very very blue. Daddy was holding him, but I couldn't reach him and it was horrible.

After that, he started taking medicine for his seizures. I still think that we should have had tubes put in Andrew's ears, but your Mommy just didn't know enough to push our very conservative pediatrician at the time. In my mind, if the seizures were caused by spiking fevers (always), and the fevers were caused by ear infections (almost every time - and if it wasn't ear infection, it was strep throat), then we should treat the ear infections. But the ear infections finally went away. Unfortunately, the seizures didn't.

After Andrew was on medicine and he grew out of the ear infections, he didn't have many seizures. But then he grew (always with the growing!) and the seizures crept back in. Also, Mommy and Daddy let you stop taking the meds. Because we're bad horrible parents. We know. The seizures that showed up without the meds were called "absence seizures." It took us a while to really believe they were seizures because they looked mostly like zoning out - and Andrew is VERY good at zoning out. But these episodes were different. He couldn't hear or remember what happened while he was zoned. And then one of his teachers noticed and called us. It was the validation from another adult that finally convinced us that we were really seeing what we thought we were - we're not the most confident parents. But that's probably because we're so bad at it. So we called the neurologist, confessed that we are terribly inadequate as parents, and Andrew is back on his medicine.

This week, we went back to visit Dr. Hamati at Riley Children's Hospital. Part of me will be just a little sad when (if?) we are done visiting Dr. Hamati, because she is just so wonderful. Even when she's scolding your neglectful parents. But you know, not seeing Dr. Hamati will also mean that Andrew is done with seizures and seizure medicine and for that, I will be very very happy. We will be scheduling another EEG for Andrew in October because it will officially be two years since Andrew's last seizure. We're hoping for a very boring reading. If we get a boring reading, we get to try weaning Andrew off the medicine - this time with permission!

I know we could have it much worse. Andrew has not been diagnosed with epilepsy and his seizures are mild and controllable. He suffers from no noticeable side effects from his medicine (Lamictal). But still, Mommy would be happier if you did not have to take two pills in the morning and two pills at night every day.

Daddy and Mommy also take medicine every day, for various things. We're old, that's what happens. Abby has asked why she doesn't "get" to take medicine every day. The day she asked me that, I almost cried. And then I gave her some gummy bear vitamins. Remember, I'm not very good at this parenting thing.

love,
Mommy (hey, I gave birth to you, that counts for something!)