Get comfy, friends, this is
going to be a long one. Since I’ve been such a cruddy blogger, many things have
changed since my last update. We’ve had a couple more hospitalizations, a
changing diagnosis, and a generally rough few months. I know that some of you
have been waiting to hear how this week’s visit to a specialty clinic went, but
most of you don’t know how we got to where we are now, so I’ll try to do a
recap of the months since I last posted. I apologize for the length, but I’m
going to try to give as complete a picture as possible, and not rely on myself
to come back with the rest of the story later.
After Hope’s May
hospitalization, we had a couple of months of relative stability. I am so
thankful for that time we had to catch our breath. We never fully relax, and
are always watching for the next big thing, but for a couple of months, we were
as relaxed as we’ve been since this all started.
By mid-August, we were
starting to see some breakthrough psychosis. There were a couple of visual
hallucinations. Then she developed an intense fear of a particular type of toy.
She had intentionally broken one at some point in the past (just humorously, at
the time), because she didn’t like them. Suddenly, she became convinced that
because she’d done that, they were all mad at her, and were going to take
revenge. She could recognize that those types of thoughts don’t make logical
sense, but it didn’t lesson the fear.
In early September, Hope had
a huge break. She woke up one morning feeling like she was still dreaming. You
know the feeling, right? You dream that you woke up, but you know you’re
actually still dreaming. She was convinced that’s what was happening to her,
but the problem is that minutes turned into hours, and then days. No matter
what she did, she just couldn’t wake up. As time went on, she became
increasingly afraid she’d be stuck in a dream forever. She didn’t tell us any
of this until it had persisted for a week. (By her logic, we couldn’t be
expected to help, we’re just the dream versions of ourselves, not real people.
Eventually, though, she decided that if her subconscious had any ideas, they
might come through the people who help her in real life. It makes weird sense,
I suppose.) By the time she told us, she was completely panicked. The very
first thing we always do is assess safety. She was unable to assure us that she
wouldn’t try to hurt herself. She was not suicidal, and didn’t want to hurt
herself in real life, but she was at risk of doing extreme things to try to
make herself wake up. If pinching herself didn’t work, maybe she just needed to
do something bigger. What stops a person who is 100% sure she’s dreaming from
throwing herself out a window to jolt herself out of the dream? Because we
feared for her safety, our only choice was to head to the hospital.
Let me stop for a moment and
explain this dream delusion, because it is important stuff. You might wonder
what would make a person suddenly become convinced that she’s dreaming. It was
the result of some new symptoms. Her vision was “off.” She describes it as
blurry, but not in a visually blurry way, in a surreal way. Her thoughts were
processing incorrectly. She has always thought in pictures. I don’t think that
way, so that’s a foreign concept to me, but she describes it as images or
videos in her mind. That’s how all of her thoughts and experiences have
processed, all her life. Suddenly, there were no pictures, only words, like
someone transcribing the thoughts. Her mind also felt sluggish, like things
were slower and more difficult than usual. In addition to the weird vision and
incorrectly processing thoughts, she felt in some way separated from everyone
else. Somehow, she wasn’t fully here with us. Taken all together, it’s not so
hard to see how her mind interpreted all of these surreal experiences as a
dream. Most of us would quickly move on and determine that something else must
be wrong with us, after not waking up relatively quickly. Unfortunately, her
mind is not healthy, and she was not able to move on to the idea of something
being medically wrong. Delusions are not rational, and all of the logic in the
world can’t shake them.
Now, what does all of that
mean? Where did that odd collection of symptoms come from in the first place?
Well, unfortunately, this puts us into the territory of schizophrenia. We were
told in the very beginning that they were only guessing on diagnosis, and we
would just have to see how her illness unfolds over time. They guessed it was
bipolar with psychosis, then removed the bipolar diagnosis because she didn’t
have the mood instability to warrant it, and called it just a psychotic
disorder - nos (not otherwise specified) for a while. By this point, though,
she had developed undeniable schizophrenia. In schizophrenia, symptoms are
classified as positive, negative, and cognitive. Basically, positive symptoms
are things that are not present in a healthy person (hallucinations, delusions,
thought disorders, movement disorders); negative symptoms are disruptions of
normal emotions or behaviors (flat affect, decreased pleasure in life,
inability to begin or sustain activities, withdrawal from others); and
cognitive symptoms are just what they sound like (poor executive functioning,
inability to focus or concentrate, poor working memory.) Hope has everything I
just listed, except movement disorder. The characteristics of her “dream” world
– weird vision, sluggish and incorrectly processing thoughts, feeling of
separation from people – are all part of this illness.
Let’s go back to the
September hospitalization. We believed that they would change meds until they
fixed the problem. In the past, we have controlled psychosis with meds. Sure,
it takes time to find one that works sometimes, and even if you do, it might
only work for a while. And sure it might only lessen the symptoms, not
eliminate them altogether. But, in our experience, you can at least make things
significantly better by just finding the right meds. They did tweak her meds
there, but that did not fix or change anything. In fact, it was in this hospitalization
that we learned, for the first time, that they might not be able to fix it. You
see, our prior experience was with only positive symptoms. We learned at this
time that while positive symptoms often respond relatively well to meds,
negative and cognitive symptoms do not respond well. We were suddenly faced
with the fact that we might not be able to get Hope back to who she was before.
I am trying to stay unemotional and factual, so I can relay all of this
information to you, but I can’t let that last statement pass without telling
you that this is perhaps the most difficult thing I’ve ever faced… and we have
faced an awful lot. While we arrived at the hospital fully expecting them to do
something to fix her, we took her home unchanged. Being delusional isn’t a
reason to be hospitalized. The only reason they can keep a person, really, is
if the person is a danger to self or others. She assured them that she wouldn’t
try to hurt herself, despite being agitated about being stuck in a dream, and
they sent her home.
Once these new categories of
symptoms developed, and we were faced with the fact that Hope has
schizophrenia, we went looking for experts. Childhood onset schizophrenia is
rare, and is something her regular psychiatrist and therapist have seen only a
few times between them. They were both very supportive of us having her seen by
someone with more experience. We found that a large university in our state has
a specialty schizophrenia clinic. They only manage care of patients 16 and up, but
were willing to do a consultation to help us confirm diagnosis, recommend a
treatment plan, and advise her regular care providers on how to proceed. We
counted down the days, hanging our hope on the fact that if anyone could help,
it would be these people.
While we waited, Hope’s
mental health took another hit. Despite being on a combination of meds that
included her highest ever dose of an antipsychotic, she had a breakthrough of
all previous psychotic symptoms. The voice returned. The intrusive thoughts
returned. The visual hallucinations returned. And, keep in mind, all of this is
on top of the symptoms I described above.
In early October, we had to
do another hospitalization. (Hospitalization number five in just under a year,
if you’re keeping count.) Only two and a half weeks after her last discharge,
they readmitted her for safety concerns. Once again, they could do nothing but
determine that she was stable enough not to be a safety concern, and send her
home. It was three days – her shortest hospitalization ever – and she was the
sickest she’s ever been. This time, though, they didn’t try to do anything. Med
changes hadn’t helped last time, and they had no reason to believe that they
would this time. We were only a week and a half away from the specialist
appointment that everyone was so eagerly awaiting. So, they told us to watch
her closely, and hang on until we could get to the experts.
That brings me, finally, to
this big appointment that everyone in Hope’s world has been waiting for. It
went well, in that we were happy with the doctor, and we got some direction.
The doctor is an expert in this narrow field, and by far the most educated
person on this topic that we’ve seen. Where most psychiatrists see schizophrenia
only occasionally, her life’s work is research and treatment of it. She was
able to confirm that Hope does in fact have childhood onset schizophrenia, and
not an easy case – not only because of the early onset, but also the number of
breaks, severity of symptoms, and resistance to meds. We expected her to say,
“Oh, that med isn’t working; let’s try this one next.” She did not say that.
Instead, she told us that the regularly available meds in the same class are
likely not going to work. She has already shown resistance to more than one of
them. She is on such a high dose of her current antipsychotic that her blood
work is showing hormone levels being pushed triple the high end of normal, and
it’s doing nothing for her. If we tried another one, it likely wouldn’t work at
all. If it did, it wouldn’t be for long. Also, there’s a good reason not to try
things that are unlikely to work… because the longer psychosis remains, the
less likely it is to respond in the future.
She did have a
recommendation, and she recommended it very, very strongly. There is one med
that is used for med-resistant schizophrenia, and it is basically our only
option at this point. I don’t usually share specifics of what meds Hope is
taking here, but there is nothing else like this, and therefore no reason to be
vague about it. It’s called Clozapine (close-uh-peen). The good news is that
many people who don’t respond to other meds do respond to this one. It is a big
step, though, and not one we take lightly. Clozapine is something that can’t
even be prescribed by any doctor or filled at any pharmacy; both must be part
of a special registry. Patients are also part of a special registry. A variety
of tests must be performed before beginning treatment. Starting the med must be
done in-patient, to properly monitor for some serious side-effects. The dose is
started very small, and increased a little at a time, depending on how well it
is tolerated. Once they reach the proper dose, we can take her home. However,
she will have to have weekly blood draws for six months. If all is well, after
six months she can go to having her blood drawn only every other week. If that
goes well, after another six months she can switch to a monthly blood test.
That will continue for as long as she’s on Clozapine. (That means either
forever, or until they’ve found a cure. Unfortunately, with her resistance to
other types of meds, it’s not like there will come a point where we can go back
to something lesser. The good news is that this med has been around a long
time, and they know that people can stay on it for decades.) Once we’ve
started, we just stay on top of the monitoring, and stay crazy militant about
med compliance and consistency. It has an extremely short half-life, and
missing a single dose can cause rebound psychosis, which she told us can be
many times more intense than anything you’ve ever experienced before. Mostly,
we just hope that Hope is in the percentage of people that respond to Clozapine
after everything else has failed.
What we need most from
friends and family is support and compassion. I know there will be some people
who read this and question whether or not we’re making the right decision with
this med. Please, understand that we’re doing the only thing we know to do at
this point, and that the decision was not taken lightly. If the above
description of the seriousness of this med scares you, I promise you that as
Hope’s parents, we are at least as scared as you are. The one thing that scares
me more, though, is losing her. If she remains the way she is now, the chances
that we lose her are very high. Schizophrenia is very serious, and childhood
onset suggests a severe course of illness. Her illness has already shown to be
very severe, and we don’t know if we’ve seen the worst of it. She’s med
resistant already. Her first suicide attempt was at age 12. She believes
herself to be in a dream, meaning that her actions don’t have real world
consequences; and her voice has told her that killing herself will wake her up,
and put her back into her real life. Everything about her situation is
alarming. We don’t want to lose her. Not only do we not want to lose her, we
desperately hope to regain as much as possible of what we’ve already lost of
her. This medication is our best hope, and starting it as soon as possible
gives us the best chances. We don’t have a start date yet, as there are a
number of details to work out, but I will try to update when we know.
People sometimes ask how
they can support us through rough times, and as always, we ask that you pray.
If we cross your mind, feel free to let us know – those calls/messages/texts
mean a lot to us. Also, please just give us some grace. We are not the best
versions of ourselves right now. We do our best to keep daily life looking as
normal as possible, for the kids’ sake. You still see me at all the same
places, and doing all the same things, as always. I fear that I seem
ridiculously moody, though. One day, I’ll smile and chat and make small talk,
and the next day I probably look unfriendly and unwelcoming. If you ever feel
like I’ve blown you off, or I hurt your feelings, please accept my apology. The
same goes for Hope. She’s still involved in her regular extracurricular
activities, but they take all she’s got. Interacting with people right now
takes an extreme amount of concentration and energy. She tries to look like her
old self as much as possible. This is an incredible effort, if you consider
that she feels flat and withdrawn, she has to concentrate hard to stay engaged
in a world she feels separated from, has to fake emotions because she has very
few right now, has to use energy she doesn’t have just to spend a couple of
hours out of the house – and on top of that, she’s sometimes fighting to ignore
voices and intrusive thoughts. If you see her out and about, she is, quite
literally, giving you everything she has. Please remember that.
I’m sorry this is so, so
long. If you’ve managed to stick with me for this long, thank you. Knowing how
many people love our girl, and are praying for her and thinking about her, is
such a gift to us. The presence of each and every one of you in our life is a
gift to us. Much love to all!
