Mourning the Child You Thought You Had

When Matthew was born, he was full term, had a high Apgar score and was just as perfect as a baby could be. He hit all his milestones as any neurotypical child would. Why would we think he would not grow up to be a typical child, get his driver's license at 16, and go to some sort of college or vocational school after graduation?

Even after Matthew was diagnosed with epilepsy just shy of his 6th birthday, we had no idea that the future we thought he was going to have would be the farthest thing from his reality. Sure, we thought he may have a harder time getting a license to drive, but he would be on a medication that would control his seizures and all would be okay, right? We could not have been more wrong.

Matthew's early child development

Matthew attended our local elementary school from TK-2nd grade. His seizures were controlled, after many failed medications, with Felbatol (felbamate) and the modified Atkins diet. He had been diagnosed with Doose syndrome, aka myoclonic astatic epilepsy, and could very well "grow out" of his epilepsy.

After about a year and a half of seizure freedom, Matthew had an EEG at UCLA, where we were being seen, which was completely clean. No sign of seizure activity. This was amazing! This is what we had been hoping for! Our epileptologist, Dr. Lerner (an amazing doctor who was very knowledgeable and had the best bedside manner) said we could start to wean Matthew from the diet and from the meds.

I don't remember which we did first, but we slowly weaned him off the diet and off of Felbatol. Life was amazing. We had our son who was seizure-free and not on any sort of treatment. Boy, were we in for a surprise.

The return of epileptic seizures

Driving home to Southern California from New Mexico after New Year's with friends, Matthew had a seizure in the car. The weaning took place in 2010. The seizures started again in January 2011. Went back to UCLA and started up both the Felbatol and modified Atkins diet. Nothing. We were able to start him on the ketogenic diet to see if that would help. After months of being on it, nothing.

We then added a new medication, Banzel (rufinamide). It was new to the market and was supposed to have little to no side effects. Matthew wasn't having quite as many seizures, but we thought they had taken their toll, as he stopped talking.

By Easter of his 2nd grade, we had to home-school him through the district. He was seizing multiple times a day still, and since he became nonverbal, we weren't sure what to do. After an evaluation by the school district, it was decided that Matthew go to a new school that offered a smaller class size with a dedicated nurse in the classroom.

Verbal development, changing schools, and a new diagnosis

How could my perfect baby, who hit all his milestones, now must go to a school in another district and be in a special education class for medically fragile children? That was a hard pill to swallow. This is our new normal. Having a child with intractable epilepsy who is no longer speaking.

Eventually, we would wean Matthew from the Banzel, while inpatient getting a second opinion, and Matthew began talking right away. We were so happy to hear his voice again. He did have more seizures though too, and a new diagnosis of frontal lobe epilepsy. That led to his first surgery, then more surgery, then more meds, and now 2 devices, a vagus nerve stimulatordeep brain stimulator (DBS).

Accepting the unexpected with epilepsy

I have to say that Matthew's 16th birthday was especially hard. All of our friends that we met from playgroup when the kids were babies were now getting their driver's licenses. Senior year wasn't easy either. Those same friends would talk about who is going where to college and what they wanted to study. It was a very exciting time for my friends and a very different and hard time for me.

On this roller coaster of a ride, we had to mourn the child we thought we had, and accept our reality with the child we did have. Don't get me wrong, I love Matthew for who he is and what he has taught us. He has shown us how simple things can make you so happy. He has this innocence that I envy. It may not be the life we thought he was going to have, but he is still with us and for that I am grateful.

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