We are still in the process of trying to get Tess back to her old self. She had a massive seizure on New Year’s Eve, and honestly, she hasn’t been her usual joyful self since about Thanksgiving.
We just added a new anti-seizure medication. She was already on Keppra, but we added Lamotrigine on top of that so she’d have a backup and be less likely to have breakthrough seizures like the ones last August and on December 31st. With Lamotrigine, you start with a small dose and ramp up, adding one more pill each week until you reach the full dose of eight pills.
The Side Effects
Over time, patterns have emerged. After each weekly ramp-up, Tess gets intensely tired in the days that follow. Napping over the weekend. Lethargic. Doesn’t want to walk or swim or ski or move. Her neurologist confirmed this fatigue is a known side effect and said we should watch and hope it levels out now that she’s reached her full dose.
But fatigue isn’t the only change. She’s been super grabby and impulsive. Also just kind of flat. Not a lot of smiles. Seeing her do her happy-hands thing? That’s become rare. If I had to sum it up, I’d say she seems uncomfortable in her own skin. And that doesn’t sound like our girl at all.
Everything Connects
Often when Tess is uncomfortable, it’s a matter of things not moving along for her bowels or urination. We have to keep those systems functioning. She gets magnesium at night before bed, Miralax in her water every morning at breakfast, and her meals frequently include foods that help with regularity, like prunes and dried figs. We also find it necessary to give her a suppository every day or two. All of this helps immeasurably.
On top of this, we’re now seeing and hearing signs of sleep apnea at night. Loud snoring. Sometimes she’ll stop breathing and then gasp for air. We’re in the process of scheduling a sleep study.
Glimpses of Tess
There are moments when the old Tess peeks through. Some laughs and smiles. I saw it when we worked on an activity matching dishes. I also saw big smiles when I got her on the treadmill for a short walk.
But the complexity of all these overlapping systems is dizzying. Is she unhappy because she can’t go to the bathroom? Or is the medication affecting her mood? Is sleep apnea messing up her rest and creating anxiety? Each of these things can cause or worsen the others. It’s a web, and pulling on one thread tugs everything else.After a major seizure, our daughter started new anti-seizure medication. What followed was a complex web of side effects, bowel issues, and sleep apnea that all affect each other.
This is the reality that many rare disease families live with but rarely talk about in public. It’s not just one condition with one treatment. It’s a constantly shifting puzzle where the medications, the bowel function, the sleep, the behavior, and the mood are all tangled together. You adjust one thing and watch to see what happens everywhere else.
We’ll keep working on all of it. Because somewhere in there, Tess is telling us she wants to feel better. And we’re listening.