“You are imperfect, permanently and inevitably flawed. And you are beautiful.” Amy Bloom
Hope is home. I'll lead with that, because it is the most important thing there is to say. If you want to pull up a chair and stay a while, I'll fill in the rest of the details.
The big takeaway from this hospitalization is that she's now showing clozaril resistance. Basically, the last chance antipsychotic med is not working for her, and there's nowhere to go from there. We can stack up other meds and hope to get some increase in stability, but realistically, we can't get rid of her psychosis. She will continue to hallucinate. She will continue to have delusions. She will struggle beyond what she would have to if she were more med responsive. Her illness is very severe, and was never going to be easy, but we've so hoped that we could get as much help as possible with at least controlling or minimizing the positive symptoms. I hate that this sounds like we're taking a defeated stance, but clinically speaking, there isn't a lot to be done from here. When speaking to the doctor, I asked him, "So, we're going to try adding a mood stabilizer, but that isn't expected get rid of the psychosis, right? Is there anything left that we can do for the actual psychosis?" He replied with this less-than-optimistic statement: "Well, there's a lot of research being done right now, and we're understanding more about it all the time. I genuinely believe that in the next ten years, there will be more options." Maybe in the next decade. Yeah... Thanks, buddy. We were aware of this already. The schizophrenia specialist that we saw before we started this med told us that there isn't much after it. We had asked her as well what happens if it doesn't work. If you've been with us for that long, you may remember that she said some people are just med resistant, and have to learn to live with their symptoms. This subset of patients tend to have a much poorer outcome. We so hoped that this wouldn't be the case for our Hope. It would be like telling a person suffering from any other chronic, major health concern that medicine is not an option for them... That their only choice is to ride out the pain and difficulty, and live as much as they can in the circumstances. To be clear, we're not cutting out the clozaril. We can't say that it isn't doing anything, because we don't know what she'd look like without it. We don't know that she isn't responding at all; it may be that she's only partially responding. It is absolutely worth sticking with it, it's just no longer expected to do as much as we'd hoped.
Despite the gloom and doom sound of the paragraph above, we are not done trying to fight this beast. We are aware that there isn't an easy answer at this point, but we will continue to do all we can. She takes four different supplements that some studies have shown can be helpful for some people. None of them are the answer to our problems, but it's worth doing anything that even could make her a little more comfortable. For those who follow here because of schizophrenia in their own lives or those of their loved ones, I'll let you know exactly what we're doing. Hope takes fish oil, hemp oil, a vitamin b complex, and a zinc/magnesium/b6 combo. (All supplements should be discussed with providers. They should also be thoroughly researched to ensure that you're buying something as high quality as you can afford. Some fish oil, for example, can contain high levels of mercury or may have been processed using a carcinogen. Research until you understand the different ways that supplements can be processed, which type is ideal for your specific situation, look for things that are cold pressed, organic, etc.) The other big thing that happened in this hospitalization is that we added lithium. Lithium is very effective for treating things like bipolar disorder, and not necessarily shown to be effective in schizophrenia. However, it is a powerful mood stabilizer, and some patients show some benefit from that. Symptoms are exacerbated by stress, and if a person's mood can be kept as level as possible, they can be as comfortable as possible, and maybe even experience a decrease in symptoms. It's not a magic wand, and may not even result in any change for Hope, but it's worth a try.
The lithium trial has not been without bumps. Here's where we are right now. Hope has been on lithium for almost three weeks. We don't think we see any benefit so far. We do see some side effects. On the more minor side of things, we have sedation and tremors. Sedation is manageable. Tremors are only a big deal if they affect large muscles, and what we are seeing is that her hands shake -- an acceptable side effect. On the more serious side, we're seeing tachycardia (fast heart rate.) It has increased to the point that it's more than just borderline, and outside the range of where we can leave it long term. On the day before she was discharged, the nurses were concerned enough that they called in the medical doctor to see her. (Psychiatrists are MDs, of course, but they don't deal with physical health. They call in a doctor for that when needed.) He ordered an EKG to see what's going on. The good news is that it's not doing anything other than running too fast (so, sinus tach, in medical terms.) The bad news is that it's running too high to be okay that way long term. We are working in conjunction with her pediatrician and psychiatrist to figure out what to do about this. Her body may adjust some, but it has been long enough now that we would expect it to have done so already if it was going to. There are three options for us bringing it down -- decreasing the med, stopping the med, or adding an additional med. If we don't think the lithium is doing anything for her, the obvious answer is to stop it. In addition to the side effects above, it can throw off your body in multiple ways, and do damage to some systems when used long term. There's always a risk/benefit analysis with meds, and for some people, it's worth it. It really is an incredible med, and literally makes the difference between life and death for some people. Still, it's only worth using if you're seeing improvement with it. If we were seeing improvement, and wanted to continue the lithium, we would have two options. We could either decrease the dose until the undesirable symptoms resolve, or add a med to control said symptoms. Decreasing it could push it outside the therapeutic range, and adding another med is... well, adding another med. We hate to do that if we don't have to. No decisions are being made until next week. By then, we hope to have a clear idea of whether or not it's worth continuing.
Symptomatically, Hope is better than when she went in, but not well. She was at one of her worst points ever, with the paranoid delusion that she was dying, and was suffering so badly. That delusion has pretty much resolved. (On its own, before any med changes. Most delusions will eventually resolve; only a small number become permanent.) She has continued to struggle with some panic and paranoia, both about her health, and about something happening to me. It has been much less frequent, though. For lack of a better way to organize my thoughts, I'm just going to list what she's going through now. That sounds clearer and easier than a wordy paragraph.
* hallucinations - She is hearing the voice. At this point, it isn't really giving commands, as it usually does. Most of the time, it's taunting her. We'll never get rid of it. No meds or therapy will ever help her. Life is hell, and it always will be. Her life will be pain and misery forever. She experiences other hallucinations as well, but none as bothersome as the voice.
* delusions - She still believes things to be true that don't make any sense. Sometimes she recognizes that they're a result of her illness, and sometimes she thinks that she just understands things on a different level than the rest of us.
* anxiety - She worries that something will happen to her, or to me. She fears for her health, and worries about accidents. Some of her fears are irrational, like the car tipping over when you go around a corner. Sometimes her anxiety is not about anything specific, and just happens. It's most often when she's overwhelmed, though. On Sunday night, we went out to dinner for Father's Day. She got panicky halfway through the meal, couldn't settle down, and we ended up just having to box up our meals and leave.
* cognitive difficulty - She can't easily follow what's going on around her, and becomes confused easily. You can have a surface conversation with her, but she describes that those interactions are tiring, and she can't sustain it for too long. It varies some from day to day, but sometimes she can't follow simple tv programs or books. She describes that sometimes her brain feels totally blank, like it's not thinking anything at all, and other times, she can't focus on one thing because she can't not hear everything around, and tune out the unnecessary information.
* memory impairment - She can't always recall things that happened, even earlier that day. She struggles to complete requested tasks, especially if you ask her to do more than one step at once.
* motor/planning issues - She always struggles with spilling things, dropping things, walking into doorways, etc. She has a hard time with the things that a healthy brain does in the background without us even noticing, such as understanding where our bodies are in space, how much force to use to pick something up, how to position just right to go through a doorway. Right now, she's having extra difficulty. For example, walking down the steps is hard and she moves slowly and sometimes still stumbles. She says that she's looking down and understands now this foot needs to move down to that step, but still finds it hard to coordinate just right. It's not really a physical issue, it's an issue with the way her brain processes what's happening around her and how to do what she wants it to do.
* social interaction - She struggles to interact. Part of this is probably attributable to some of the things I mentioned above. If she has to focus hard to understand, and feels somehow removed from the rest of the world, I can imagine that it would be hard to interact, and would just feel less stressful to be alone. This is a hard one to balance, though. She gets stressed by too much interaction, but feels sad when she doesn't feel that she has people in her life. We have to figure out how to give her enough social interaction to feel loved and supported, but not so much that it stresses her.
* general functionality - I don't even know how else to label this. She isn't taking good care of herself, her hygiene, her chores, etc. without significant prompting. She does things like walk away from the refrigerator or microwave without closing them, showing the inability to properly complete the basic steps of things she's done thousands of times before. These things become particularly bothersome when it comes to things like cooking. She'll want to make something simple for herself, but will forget to turn off the stove. Or she'll be asked to help make dinner, but break all food safety rules (leaving refrigerated foods out, touching raw chicken and then touching everything else in the kitchen, etc.)
These are all things that have been present in Hope's life since she became ill, though they aren't always as bad as they are now. Schizophrenia cycles, and in her better times, these things are milder and more manageable. In times like this, it feels like so much time and energy is spent just managing her illness. I know that even unmedicated schizophrenia cycles, and therefore it will improve again eventually. However, I don't know what things will look like now that she's not responding to the clozaril. It never helped the negative symptoms anyway, but it did help the hallucinations, and that's a big deal. Now, we just have to see how it all plays out. It's a pretty helpless feeling, really. We hope that with the right support, and with counseling aimed at coping with psychosis, and with hard work on her part and ours, we'll be able to keep her functional and at home.
Home. That's something that was up in the air this time. I kept saying that we couldn't make the decision yet. Obviously, we decided to bring her home. Pretty much every member of her care team felt some unease about either decision. It's hard to bring her home so unstable. On the other hand, it's hard to send her into a residential facility without a clear understanding of what exactly it's supposed to do for her. It's not like they could fix things if they had more time, and it's not like she's just learning how to behave better or control her anger like so many of the kids there. She doesn't deserve to be away from home long term just because her body won't respond to meds. At least not without giving her a fair shot. We don't know how she'll do at home. We don't know what it'll be like for her to try to move forward with her new circumstances. We felt like she deserved the chance to try it. There is a possibility that she will be unable to be safe at home. The possibility exists that she will struggle so badly that our only choice will be to try something more secure than outpatient care. How could we not bring her home and let her try, though? Unless we've got a really good reason to believe that she or others can't be safe, she belongs at home.
I have been blown away once again by the support that friends, family, and strangers have shown our family. I want to thank every single person who has shown us kindness, in any of a thousand different ways. I try to express that gratitude. If I have ever failed to do so, please know that it is felt. I am frequently brought to tears by both simple and grand gestures of kindness. You guys are incredible. I hate, beyond words, that our circumstances have put us too often into the helpee category, when I'm much more comfortable in the helper category. There's this part of me that wants to crawl out of my skin every time anyone goes to any trouble for me. But if I can sit through that feeling for a moment, I am hit by the most incredible gratitude. If the experience of parenting this exceptional child has taught me one thing, it is that people are infinitely more beautiful than I can even describe with words. I love you all so very much.
