Today was a great day for Nora! She has now had five doses of her steroids since Monday night. Today, she had two episodes (12pm and 6:30pm). They were much milder than they have been previously, and only involved her eyes; no arm movement associated. She seemed to ‘recover’ more quickly and was less agitated afterwards. Her neurologists say that a successful result of the steroids is for the seizures to stop, not just a change in their severity or frequency. Even so, we’re happy to see less of them.
One noticeable change in Nora is her mood – she’s far more irritable and has a very short fuse. That’s a result of the steroids and is to be expected, along with her voracious appetite.
Before the steroids, Nora was the very quiet and calm and the change to loud and a bit pissed has frazzled Zoe a little bit. We’re trying to explain to Zoe that the medicine makes Nora feel better, but also makes her cry more. That’s hard to for me to swallow, and I’m not two years old.
Nora went to see her primary care Nurse Practitioner today, whom we think is absolutely awesome*, and we’ll get a referral to a neurologist at Duke for a second opinion. Just seems like this is the type of thing that warrants a second look.
I bet you’re wondering about that picture. Specifically, why haven’t we cleaned her head? That glue is really sticky, guys. We’re rubbing oil on it to help get it off because the next step is nail polish remover. We’re not ready to go the acetone route just yet.
Also, this picture is right after her first episode today. Her eyes take a bit to get their act together after an episode, and the ophthalmology doctors said it’s too soon to know whether or not that’s just because she’s a baby and babies go cross-eyed sometimes, or if it’s related to the location of the cortical dysplasia.
Good news for tomorrow: we are replacing her Prilosec suspension with a Prilosec Solutab that will immediately dissolve on Nora’s tongue, so we won’t have to force that pink liquid on her. Small victories.
** Elaine Matheson, Durham Pediatrics*