"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 The horror movie image you might have of a person strapped to a table, convulsing in a way that looks terrifying is outdated.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.
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