I feel like we’re constantly holding back the tide with our hands. The seizures are unrelenting, and oh how I loathe them. They’re so horrid.
Here’s the thing – there are half a dozen things that can cause seizures. Pain (like from, say, teething). Heat (oh hey London heatwaves). It could be Kai’s put on weight and outgrown some of his doses, or that there’s NKH progression or that he’s constipated. It could be this viral thing he’s picked up.
It could be ANYTHING.
So I track the seizures, and we got from 1 a day, to 2 a day and then suddenly with no warning we’re into the realm of 7-10 a day. What happened? What happened in the last week? What have we changed? What is going on?
And I genuinely feel like it’s best to try figure out whats going on by myself. Isn’t that crazy? We have a huge team of medical people. A huge huge huge team of medical people. People with many degree’s and fancy letters behind their name. But the problem with a rare disease like Nonketotic Hyperglycinemia is because there is no information, and because the NHS is so decentralised, I can predict what they’re all going to say:
- The neurologist will want to increase his anti-epileptic medication. Without asking whats causing the seizures. Just increase the dose.
- The metabolic guy consultant will say he’s sorry Kai’s having a hard time. What’s his most recent weight – he’s probably outgrown out of his meds. Let’s increase his metabolic meds.
- Our CCN will want to talk to our neurologist. And then when the increase of anti-epileptics doesn’t work, our metabolic consultant.
- Our GP will have concerns, but ‘just to be safe’ we should go into A&E and get him checked out.
- The A&E people will take bloods, and wait for our neurologist to show up.
There is no one on that team asking for the whole picture. There is no one person asking when the last time Kai pooped was (you’d be surprised how many seizures we have because Kai is constipated). There is no one asking about teething or pain or high temps, and do the seizures stop when Kai’s had calpol. There isn’t anyone looking outside their silo. Our medical team aren’t looking at the non-medical options.
Except me. Because he’s my son and I see everything everyone else is tinkering with and I’m doing the best I can to track what I know. But I don’t know what I don’t know. What if it’s caused by something else? Something I’ve not seen before, or come across, or have no idea to look out for? What is it I don’t know??
I hate that this is the case. That I feel like of all our team, I’m the best placed person to work out why Kai is having these incredibly horrific seizures. I want to trust our team – I want to trust the team of people with the many years of degrees and experiences and letters after their name to tell me what to do. But I can’t, because they’re looking at their speciality with blinkers on.
So it’s on me. It’s a weird place to be in.
The other thing is The Fear. That for every seizure Kai has, for every additional seizure we have in a day I wonder if this is it. If today is the day we end up back in hospital, or hospice. I think back frantically to the last time I saw Kai’s beautiful blue eyes and wonder if I’ll see them again. Whether yesterday was the last time I will have heard his little vocal squawks, or the funny faces he pulls when we feed him pureé.
The escalation between where we are, and in a coma in intensive care is a series of small, tiny steps. And they’re all seizure related. The more seizures Kai has, the closer we get and the more anxious The Fear becomes.
I hate that I even feel like this. I want to be able to enjoy time with my baby boy. I want to trust that today will be a good day. I want to be able to plan further than a week ahead and I want to be able to stop pre-empting rsvp’s with ‘If kai is doing well.’
I’m jealous of the Neuro-typical path. Stupid NKH. Stupid Holland. I want to be in Italy, and I’m sad that we’re not. I’m sad that Kai can’t hold his head up. That he’s not crawling or standing or socialising. That we can’t put him down to sleep and trust that he won’t have seizures. That he can’t see across a room. That because of his medical needs we can’t trust a non-medical babysitter. I desperately want more for my beautiful Kai than the life he has, with his grim future.
I wonder if I’ll ever be not grieving this.
