We appear to be entering a frightening new phase of Taz’s seizures. We have built our day to day living around the largely predictable, yet too frequent, appearance of them. So when things go haywire, the carefully stacked cards get struck by a tornado. We could see the storm in the distance, and have been squinting to see if it’s headed our way these last few months, and if so, how much damage it will do. In the last week it’s become close enough to wreak havoc. Polly’s tonic clonics are no longer confined to a few while in bed, at predictable intervals. They are springing up everywhere, in the swimming pool, on the school taxi, the playground. We knew this because her caregivers had told us, but we’d yet to witness a random one ourselves. We knew when we did it would be a mighty stomach punch. It happened on Thursday after school when she crashed to the floor with us. Then again on Friday as Taz ate her boiled egg at breakfast. Like a bolt of electricity it stunned her little body and she flung back, violently jerking. Luckily grandma moved like lightening and caught her. It did not last long. She then had a further three that day.
We feel gutted, again. These are not prolonged seizures but are violent and cause her to fall and hurt herself. It means the helmet is back, and the reins at some points. This is terrifying for us because it catapults us back to 2020 when she was having hundreds of drops a day. We had to hold her from waking till bedtime with very little help. Our lives shrunk dramatically and it was incredibly painful to live through.
But. This time things are a bit different. To start with, the seizures are different and as yet they are not as frequent. The key differences though have nothing to do with the seizures themselves. This time we have proper support in place, ready. We already have the helmet, the reins, especially imported from the US and customised with a long handle so she does not feel as restricted, the special chair which stops her head flinging back when she eats, her amazing bed which keeps her from falling at night. We also have proper care support so we get a break from being glued to Taz and a carer can step in. If the main concern is her hurting herself then this time we are pretty well set up for this scenario. School are on it, using the helmet and reins, organising for a special car for her to go on her school outing. Plus, we are not in a lockdown. Friends and family can help, I can go to yoga, go running, go out with friends, go and buy some plants. Also, we know things change. If it can get worse it can also get better.
We already have support mobilising, friends parachuting in, Taz’s consultant calling to make a meds plan, extra care support being put in place. Last time we started from scratch, this time we are ready. Of course, none of this takes away the stomach lurch each time it happens. As I sat with my arm around her while she ate this morning I wondered if I was ever going to be able to to relax as we get more used to this. Currently it is like waiting for a jack in the box to pop, but far more dramatically. When she is at school, our phones ringing causes a similar response.
We are waiting to hear if Taz will be prescribed Epidyolex (the CBD product available on the NHS for certain epilepsies). We will give it a go if we get it but we don’t hold out too much hope about it helping. Meanwhile, I have prescribed myself plenty of yoga, running, dark chocolate, gardening, therapy, podcasts and constructive distractions like my job, that get my mind focused and working on other things.
Onward.
Life with a Livewire 