One week on the seizure medication.

Emma has been on liquid Keppra for a full week now, and we have noticed some changes. The first few days she seemed very alert, and her therapists all independently mentioned how focused she was. However, the last three nights she hasn’t slept at all well. She has been waking up any time between 2:00 a.m. and 3:30 a.m. and remaining awake until somewhere around 5:30 a.m. With this development, Emma has been exhausted during the day, and has been exhibiting tremors, especially in the morning. Clearly being tired is exacerbating her symptoms.

We’re not sure how long we will keep her on the medicine if this disturbed sleep continues. It’s just not fair on her.

I feel very frustrated. Of course it’s great if these movements prove not to be seizures, but then we are left with the question of what exactly they are? This morning it looked like Emma’s whole body was working just to keep her balanced upright and standing. Tiny little jerks all over. At breakfast yesterday she couldn’t keep her hands still for the shaking. The medicine should have worked by now if they were seizures.

So now we wonder – is this physical manifestation of brain damage? Is this cerebral palsy? My biggest fear is a doctor deciding that we don’t (and won’t) know the cause, and saying “it’s just a tic, which are common with kids on the autism spectrum”… because this has been going on for a long time, and we don’t want to be fobbed off. We don’t want Emma labeled for the sake of quieting us. We want a diagnosis so we can do the very best for Emma in terms of cures and/or therapies.

All that being said, Emma hasn’t become mean and cranky, as some children do on this medicine. She is still grinning and playing. She is still cuddling, blowing her own little version of raspberries, and watching her Bubble Guppies. She’s still our little Emma who we love dearly.

Hoping for a better week next week.

Katy and Adam