Further bumps in the road

I suppose it was foolish or blindly optimistic to think it would all be plain sailing since we consulted AHT on Harrison’s epilepsy.

Things have definitely been better, but the seizures keep coming, which we’re surprised and anxious about. Even Luisa seemed disappointed when I called to update her. She just explained she has a lot of work to do to get the right balance for him, but at the moment things are quite blind until we get true peak & trough blood samples taken to see how he is adjusting to his new dose, what kind of level does he have in his blood and is there more room to maneuver.

As ever, it never rains it pours, so amidst all of this Harrison has also had an upset tummy on and off too. In addition to the standard knock on effect that his ability to cope alone when we’re out at work seems to take a downward turn also (right back to square one).

So right now feels like groundhog day, we’re going over old ground with some of the behavioural changes and its so hard to see his separation anxiety exacerbated again, especially as we worked so hard to build him up to a good level. But, on a positive note the last couple of seizures (this morning and before that, on Monday morning) he has only suffered one fit in isolation (this is great progress!) thanks to the new seizure emergency plan we have with his meds and also he seemed to bounce back really quickly following the seizure too. He had his usual 1 hour of postictal pacing and bumbling into the walls, but after that was quite lively, energetic and coordinated. The devastating part is that both of these seizures occurred whilst we were out at work, he was alone in the kitchen. We have a camera setup so we can keep an eye on him, heartbreaking watching the footage of him convulsing on his own and coming round all confused and disoriented. Much harder than going through it in real life, to be honest!