And sometimes I don't update because I simply don't know what to say... where to begin?
We seemed to have sailed smoothly though the holidays only to find ourselves with increased seizures, worsening behavior and no answers. Last Thursday was the first call in many months from school to come get Jenelle because of seizures. Not a long lasting grand mal, so we escaped Diastat and an ambulance ride... but clustering complex partial seizures (our new "Groucho Marx" seizure) that left Jenelle not exactly herself so the school nurse was concerned - rightfully so. Just as we finally get to the dose of Felbatol we were shooting for. One step forward, two steps back.
And on top of the seizures, Jenelle's bad behavioral habits have returned. She is scratching herself, pulling her hair out, rolling her fingers in her hair until they get caught - then having to cut her hair from her finger to get the circulation to return. She soothes herself with a rhythmic coo.. and when that isn't enough to soothe her, she bangs her head with her fist or on the floor. When lying on the floor she scoots and arches her back and neck (and to see it in person, you'd think she was going to snap her neck!) The other day this caused a large rug burn on the back of her neck - something to watch to make sure it doesn't take long to heal and get infected. God I wish she could just tell us what it is.
Dr. Tran is not oblivious and is very much in the loop. We have to rule things out like lack of sleep (which would cause an increase in seizures), and the possibility that the Felbatol dose is too high. Little changes with not much difference. It could be hormones, and the onset of menses (which still hasn't started, thankfully.) Illness... which is a strong possibility at this point as Jenelle suffered much this weekend with diarrhea. Imagine your 12 year old diapered child with the runs... not fun in any way. After Saturday's "poopy day" Jenelle was fine the rest of the weekend so I sent her to school, only to have to pick her up from school again today for another runny diaper. Right now it is 10:45 p.m. and I've been snuggling with her feeling her twitch and jerk and toss and turn trying to fall asleep. We listen to music to no avail. No rest for the princess - but tomorrow will be a day at home until 24 hours have passed from her last runny BM (joy!)
I'm worried... the subtle changes in her like this... the regression scares me. If Felbatol means she will be pulling her hair out, then no thank you. That is a side effect I never missed. Is she in pain? Possibly. Last Thursday, I gave her in Tylenol, just in case it was a headache... but did it help I'm not sure.
Sometimes, things change so quickly I don't know where to begin. Sometimes, there are more questions than answers. This isn't my first dance, so I know it takes time - I just wish she could tell us what it is. And I'm worried.
Thank you always for your thoughts and prayers - please keep them coming and pray things settle down soon. I'll keep you posted.