As Mikaere gets older, there are an untold number of things that need managing. All sorts of things, usually as a result of something caused by NKH.
One of the recentish things that has come up is that his thumbs abduct. Essentially, it means that his thumbs cross inside his palms, making them useless for any kind of functional work (like grasping). This is partly because of the way his muscles work (as a result of his deteriorating CNS thanks to NKH).
The OT pushed for neoprene splints, but they’re heavy and make his wee hands sweat (and then the splints smell and it’s gross). It’s a whole thing.
So, we sought different advice and are using kinseo tape to achieve the same thing. Honestly, I don’t know why more therapists don’t use it. It’s significantly cheaper than a splint, more comfortable and more versatile.
I am frustrated that it’s a solution we had to seek out ourselves (our OT service was very clear about how they don’t have training on kinseo tape, and wouldn’t be willing to get training, but it “appeared” to work for Mikaere’s thumb abduction, so they would “monitor” things. Eye roll. They also didn’t have an alternative to splints, so 🤷🏻♀️).
Hey ho. It’s a solution that works for us, and I’m pretty pleased to have an alternative to splints (thank you Hayley!) Anyway, thumb tape. It’s a thing we’re doing 🙌
#paedatricOT#kinseoTape#thumbAbduction#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
