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!

A New Hope (Any Star Wars fans out there?)

"Take calculated risks. That is quite different from being rash."          General George Patton


Tomorrow brings a new possibility for our Hope. We've spent the last several years watching med after med fail to improve things for her. She simply doesn't respond well. We haven't tried every med that exists, but have sampled some from each class of antipsychotics, mood stabilizers, and antidepressants. Her failure to respond to any of them means that she's not likely to respond to others in the same class. We've arrived at the point where there is unanimous agreement from her outpatient psychiatrist, her current inpatient psychiatrist (who is the adolescent department head at that hospital), a hospital chief of psychiatry, and the team of psychiatrists from the brain stimulation service. Our best bet for response and improvement for Hope is electroconvulsive therapy. I've tried to answer what I thought might be your questions below.

Whaaaat?
Hearing that we're doing ECT may make you nervous. That's okay. I'm going to ask that all who love her take a few moments to research it, because I think it'll put your mind at ease. The horror movie image you might have of a person strapped to a table, convulsing in a way that looks terrifying is outdated. Yes, it used to look like that. Even then, it was sometimes the best option they had for people, and could be very effective. The way it's done now is under general anesthesia. They are still using electric current to induce a seizure, but because the body is paralyzed, you don't see the convulsions of the past. These convulsions often made people feel like they'd been hit by a truck, because their muscles clenched so aggressively that they were very sore afterward, and there were even instances of bones broken from it. None of this will be Hope's experience. It's actually considered a low risk procedure, so much so that it's sometimes used during pregnancy when meds could harm the baby or in older adults who can't tolerate med side effects. Hope has been evaluated not only by multiple psychiatrists to determine that this is be best course of action for her, but has also had physical tests done to ensure that she can handle it.

Why?
ECT is used most often for depression. It is often more effective than meds, and response is faster. It can sort of reset the brain when it is stuck in a bad funk. (Yeah, this is apparently my oh-so-technical medical knowledge.) It can also be used in treatment resistant schizophrenia. It won't change negative or cognitive symptoms, but can have an effect on positive symptoms, such as hallucinations and delusions. We do not expect it to fully eliminate these things, but we do hope for a decrease. At the moment, these things are not the biggest threat to Hope's safety. The severe depression, self harm, and suicidal ideation are her biggest threats. It's not possible to untangle all of this from her schizophrenia, because her overall situation contributes to her hopelessness and depression, and the voice that says such awful things to her contributes to her hopelessness and depression. So yeah, they're all tangled together. But the ECT can help. And, to be honest, nothing else is expected to right now.

When?
We start tomorrow morning. Treatment is usually six to twelve sessions. It'll be three days a week for probably two to four weeks.

How does this work?
Here's what it will look like, to the best of my understanding. Hope will be transported from the hospital where she is to the hospital that does ECT. I will meet her there. They'll do a quick physical exam, start an IV, etc. She'll be taken into the room, where she'll only be for about fifteen minutes. She'll be anesthetized, and they'll put a blood pressure cuff on one ankle, to prevent the sedative from entering that foot. That's done so that when she's seizing, the one foot actually isn't paralyzed and they have another way to watch the seizure. Her brain will be stimulated for a total of six seconds, but in short pulses. They'll be watching EEG brain activity and also the one foot to monitor the seizure. The seizure needs to last at least twenty seconds to be effective, and they're usually thirty seconds to a little over a minute. If her brain happened to "get stuck" and kept seizing, they'd give a med to stop it at 100 seconds. Over the next 30 - 45 minutes, she'll wake up and become reoriented. She will likely be confused at first, but that's not a shock considering that she's just had a seizure and just been anesthetized. There may be some lingering confusion and/or memory loss, but these things will resolve. The main things we expect are manageable -- headache, sore jaw from clenching, sore muscles (not from the seizing like in the old days, but actually from the muscle relaxer that causes a chemical dump in the muscles.) They'll take her back to her hospital, allow her some extra rest, and then have her go about the rest of her day as she's able.

When can she come home?
She does not have to be inpatient for the whole course. We will start inpatient, and hopefully finish as outpatient. Right now, the earliest possibility is next Thursday. The inpatient doctor wants to watch her through three treatments, so Friday, Monday, Wednesday, and if she's doing pretty well, he could discharge her on Thursday. That also happens to be her birthday. I'd love to get her home then, and am even hoping he might consider doing a late discharge on Wednesday evening so that she can wake up here on her birthday. If not, the social worker already said we'd plan to put her on the schedule as the earliest discharge on Thursday. Of course none of this is certain, but that is our earliest possibility, because we know he wants to watch her through at least three treatments.

What are the risks?
We expect some headaches and possible muscle aches. We expect confusion and memory loss. That is usually fully resolved within two weeks, although there is a small possibility of it lingering for up to about six months. There is a chance of seizures between treatments, and this is slightly increased for Hope, because her clozaril can induce seizures. The main risks are just the ones that come with general anesthesia. She has never been anesthetized, so we don't know how she'll react, but after the first time, we'll have a better understanding. These risks are very small, and present in any procedure that requires anesthesia.

Will it work?
There's a 60 - 70% chance that there will be noticeable improvement. Those are pretty good odds!

But isn't she just a baby?
Yes. She is. She's also very sick. I'm not going to pretend that this is just a mundane thing they do to kids all the time. Hope's case, in all ways, is incredibly rare and unique, though. The doctor from the brain stimulation team said she hasn't seen it done on a fifteen year old, but has seen some sixteen year olds. The head of adolescent psych at the largest psych unit in the city says that unit has done it twice in the decade and a half he's been there, both times on kids older than Hope. It will be a first for most of the staff at that hospital, but the doctor from the brain stimulation team came into their team meeting and discussed it with them, so everyone does know how to take care of her and what to watch for. When we started clozaril (when she was just thirteen), a pharmacist came and did the same thing, because that was also not known to most staff on the adolescent unit. So yeah, it's not common. But there are studies on it, there have been official guidelines on how to use it in adolescents since 2004, and there's a lot of experience in using it on adults. Hope is young, but she's 5'5" and 130. Hope is young, but she's physically very healthy. Hope is young, but she has a long history of severe illness and med resistance. ECT is actually so low risk and can be so life-changing -- literally life-saving -- that many doctors think it should be considered more often than it is.

Is Hope okay with this?
She is. We wouldn't consider it if she had any hesitation. Actually, they wouldn't do it against her will anyway. Legally, we have to consent, but they also require her assent. She is somewhat nervous about it, as you'd expect with any procedure, but she's hopeful. She knows that meds aren't giving much hope at this point, and says that if this might make her less miserable, it is absolutely worth trying. She knows that her doctor uncle thinks it's a good idea, and she knows that her psychiatrist (who is typically very conservative) thinks it's a good idea. No one in the medical field that we've talked to have had any qualms at all. It's just the regular people who don't understand it and think of it's decades-old past who seem worried.

What we need from all of you is to keep Hope in your thoughts and prayers. It's safe, but will still have some physical side effects, and will sometimes be painful. (I mean, really, who ever wants to get an IV? Even that, which will be done with each treatment, is enough to cause some anxiety.) What we don't need from friends and family right now is doubt, stories about things you've heard might go wrong, pleas to change our minds, etc. We don't anticipate that level of pushback, but I'd be lying if I said I wasn't worried what other people are going to think or say. We've done the research. We've gotten much more than second opinions, and we're comfortable moving forward. There are risks, but if we're being frank here, the risk of her taking her own life at this point is much higher than the risk of ECT harming her. Please keep our baby in your prayers and thoughts, especially in the early morning hours of Monday, Wednesday, and Friday in the coming weeks. Maybe also send up a prayer for the nervous parents, and even an extra little one for the not-a-morning-person mama who will need leave home at 5:15 some mornings. ;) We're all a little nervous about tomorrow morning, as we would be with any procedure, but I think that once we've gotten that first one out of the way, it'll be a lower-anxiety experience.

I'll do my best to post a quick update here tomorrow to let you all know how it went. Love and HOPE to all.