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Epilepsy Blog Relay: Advocating for a non-verbal child

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Trusting mother’s intuition

Since the end of last summer, I knew something had changed drastically with my daughter’s health, but between her pediatrician and neurologist, there were no answers as to why. In June 2018, right before the end of Colleen’s school year, I was constantly getting videos of her walking unassisted. It was a truly amazing thing to see (Colleen has both cerebral palsy and epilepsy.)

But after we came back from a trip to Disney, she really struggled to get back into the swing of school. A week didn’t go by where she didn’t have to come home, either because she didn’t have the stamina to stay in school or because she was having too much seizure activity to be able to stay focused. I knew something had to be done.

Advocating for a non-verbal child

This is just one area where Colleen needed an advocate. She can’t tell us what’s wrong, so it’s up to us to make sure she’s taken care of. As her parent, I’ve become pretty good at anticipating her needs and she’s starting doing things, like going to her seat in the kitchen when she’s hungry. But when it comes to her health, things have been a lot more difficult.

We have bounced back and forth between taking her to her pediatrician, making sure all her blood-work is fine or there’s not an ear infection or something that she can’t communicate, to calling her neurologist to see if we could adjust her medication. We love her neurologist now, but there was a point from before we switched where we had to beg them to help her and even to get some basic blood work done to check her medication levels. These are the cases where you (or even for yourself) where you become your child’s best advocate. I’d like to say all doctors are amazing, but it seems that some are not as interested in trying to help figure out what’s going on. Don’t be afraid to look elsewhere and seek answers. Sometimes it takes really listening to your gut and not taking no for an answer to do what’s right for your loved one.

Related: Tips on switching neurologists

Balancing side effects with seizure control

We are now better health-wise than where we were last winter. Colleen has been seizure free for two months, but it’s a hard balance between seizure control and side-effects. She is on Depakote sprinkles and a pretty small dose of Onfi. The Onfi is what is stopping her daily-seizures/myoclonic jerks, but at what point do you say that the side-effect isn’t worth it? Surely, there has to be something better? I am at that point where I’d like to see if there was something else, but she’s made so much progress again. She’s been walking unassisted through the house. She’s mostly happy, but I can tell she just isn’t herself. She is just sad. A lot. Our hope is now that somewhere out there, there is a medication that won’t have such severe side-effects.

Your turn

What are your experiences with side-effects? Have you ever had great seizure control but other things happen? It’s such a struggle!

Share your story Read more by Jen

NEXT UP: Be sure to check out the next post from the team at Epilepsy Awareness Day at Disney Land at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Follow Jennifer Lounsbury:
CP/Epilepsy Advocate. Photographer and designer. “Courage, dear heart.”

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