On Evelyn’s vision, and another EEG

We saw Evie’s Paediatrician yesterday and the short story is that she’s coming off the phenobarbital, having another EEG and then we’re reassessing dependant on the results of her EEG.

At this stage, we’re going to have to wait and see how her vision develops and whether there are large improvements or not. Benign seizure disorders should not be causing delayed visual maturation however, so Evie continues to be a confusing case. Her sporadic visual abilities might be associated with the seizures, or it might be something entirely different, all on it’s own. We can’t know for certain at this stage.

She still doesn’t smile to anything visually, but will smile at our voices or when she’s being touched, so that’s something at least. She does like light gazing, but seems to have trouble adjusting to being outside, even if we put her in the shade. Apparently there’s such a thing as too much light in Evelyn’s world. I think I need to buy her baby sunglasses.

The Paed was encouraged by the fact that she does have the ability to track and follow with her eyes, even if she is using her peripheral vision to do so. Because she uses her peripheral vision, she can see movement relatively well, but always appears to be looking above our heads, or off to the side, as well as having good days and bad days – a sign of cortical visual impairment (DVM is CVI that resolves by 6 months – all my research shows that DVM is unlikely to resolve entirely in babies who also have seizure disorders) and so that is what my gut feeling is.

She had a blood and urine test repeated, as she was too young at the time of original testing for whatever they were looking for to show up (but also, if that’s what she has, it should have been seen as calcifications on her MRI and her MRI was clear).

So, that’s that. The EEG should be booked for the next fortnight or so and she had her last dose of Phenobarbital today, after having a half dose for the last three days. I’m torn as to whether the phenobarb was doing anything or not – my gut says that it wasn’t helping, and with the last few days of half doses, she’s actually been sleeping more than when she was on a full dose. And I know that it will take a while for the levels to drop in her blood, but last night (with no dose of PB before bed) she stayed in bed asleep for over 14 hours, waking twice for feeds – whereas usually once we give the PB she sleeps for an hour and then “fusses*” for another 2-3 before she’s ready for a long period of sleep (6-8 hours).

*I say “fusses” but Evie is the most laid back baby, ever. Her “fussing” is wanting to be asleep, but cat napping instead.

I guess now we’re back to waiting and seeing. Waiting for the EEG and seeing what it says.