Just heard again from the doctor. He confirmed that the epilepsy team specialist agreed that Rory's tremors are not the dangerous epileptic variety. They will make a follow-up appointment with that specialty team a couple of days from now, and he recommended she meet with her psychologist as well. Between all the specialists we'll get a good plan in place.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
Is she doing therapy? It took a while to find a therapist I was good with and who presented me with a strategy I felt actually helped. I always took Neil which helped me feel comfortable.
ReplyDeleteMeditation can also help. There’s one I love on Amazon (I have music unlimited, so it might not be free to you). It’s meditation for deep peace and relaxation by Dr Ramdesh. Any of the ones I’ve tried by Dr Ramdesh have been good.
Also some strategies in that book I gave everyone a year or so ago (The Happiness Trap). Like when she’s upset talking about how she wasted everyone’s time, nudge her to say “I notice I’m having the thought that I’ve wasted everyone’s time. I notice that I noticed that I’m having the thought that I’ve wasted everyone’s time. I notice that I noticed that I noticed...” etc. helps you take a step back and recognize that thoughts are just words, not necessarily truth.
Or maybe none of these sound good or maybe she’s tried them all. Anxiety and depression and all the things that go with them are so personal and the helps are so personal.
We will continue to pray. Please let us know if you need help getting kids shuttled somewhere. Happy to look at trying to combine violin lessons for the boys too if that helps.