Patience

"The strongest of all warriors are these two -- Time and Patience."          War and Peace, Leo Tolstoy

I've been getting a lot of questions about how treatments are going, and how Hope is doing. I don't have a clear answer, but I decided I might as well update with what I do have. Real life isn't always neat and tidy with easy answers, but you're welcome to wait with us in this moment of not knowing how things are going. 

Hope was discharged after her third treatment, and we've continued it outpatient. Today, she had number thirteen. We don't yet have a stopping point figured out. In my last post, I said that the average course of treatment is six to twelve, but I didn't really know what to expect. Now we know that she isn't responding quickly, and the doctor told us that with her symptoms we should expect closer to twenty for her. 

I know what you all want to know. But is it working for her? Is she getting better or not? That's the part where I can't give you a clear answer. For most of the month we've been doing this, we've been saying that no, it's not working. In the last few days, I've thought that she seems somewhat more energetic and maybe a little brighter overall. Much of the time, I think she looks the same, but there are patches of better mood. I can't say if it's starting to work, but I'm starting to think that it might be. It's been hard, honestly, to watch weeks go by without any relief for her, but we're still hopeful that she just needs a higher number of treatments and that ECT will still be successful.

The overall picture of the three weeks since discharge isn't a pretty one. There have been three episodes of pretty severe self harm with the most recent being five days ago. We've been very much on the verge of hospitalization again; her therapist and psychiatrist were in support of readmission after the last episode, and I said that I'd like to give these treatments and a new med (I'll write about that below) a little more of a chance before taking that route again. They both agreed to let me make the final decision, because we don't believe that she is currently suicidal, but we all know that another severe self harm episode will mean the hospital. Not only that, but it may mean a PRTF instead of an acute stay, which means she'd be there longer. We're trying so hard to avoid that. 

She's physically tolerating treatments very well. Here are all of the categories you might be wondering about:

- Pain -  She had a headache and mild muscle aches after the first treatment, but has had no pain at all after any of the others. Being so young and healthy, her body is taking it all in stride. The only uncomfortable parts of the process are the injection of the numbing agent they give before they start her IV, and the burn of the anesthesia as it goes in through her IV. Both of those are brief and manageable. 

- Anesthesia - She'd never had anesthesia before this, but it has gone well. One time she wouldn't stop breathing, and they had to give additional meds. After that, they just increased the amount she's getting, because she'd probably begun to build up a bit of tolerance. She's on the longer side as far as how long it takes her to wake up and be functional, but she's been consistent. 

- ECT - Her brain is producing nice seizures that look just like they want; only once did she have one that didn't last the minimum twenty seconds. In that case, they just do another one right then and there. 

- Memory - We are seeing some memory impairment. Hope already has a poor memory, with schizophrenia's cognitive effects being similar to dementia. We're comparing to her baseline, though, not a typical 16 year old. She does a memory test once a week so they can compare, and we keep an eye on how she's doing functionally. She is disoriented when she wakes after treatments, as expected, and then over the course of the next hour or two, that mostly clears. We are seeing some incidents of her not remembering conversations, places we've been, things we've done in the last few weeks. For example, she's been participating in a photography workshop, and she has taken pictures of things that she can't remembers seeing or doing, and only knows for sure that she did because there's photographic evidence. None of this is concerning enough to stop treatments, and she should return to her baseline within a few months. She says it's just annoying, not distressing, to be unable to recall things. 

We've done one more thing to try to help Hope stay safe. I know I've said before that we've pretty much exhausted med options, but we've actually started a new med. This one isn't a psych med, but it may help her. Naltrexone is a medication that is used in drug and alcohol addiction, but there are some studies and a fair amount of anecdotal evidence that it can help with self harm. To strip it down to the "for Dummies" version, self harm causes your brain to reward you with happy chemicals. This drug stops your brain from responding that way. Hopefully, it will decrease her desire to cut. If she does cut, it is supposed to take away the feeling she's used to getting from it, therefore making it less desirable to do it again. Naltrexone will not address any other problems, make her feel better or happier, or decrease any of her symptoms. It's job is simply to keep her physically safer. She only started taking it a week ago, and since we eased her onto it, today is actually the first day she's had a full dose. We don't know yet if it will help, but we're hopeful.

I guess that's where we are with everything right now. We don't know if the ECT will make her feel happier, but we hope so. We don't know if the new med will make her safer, but we hope so. All we can do is be patient, and keep on hoping for a positive outcome. 

We love all of you, hope you're having a great summer, and hope your holiday weekend is a good one!