The Executive Decision

We are a very forgiving household.  This is why almost all my daughters’ friends spend their time here.  It’s also why most of them call me ‘Mom’.  I feel too young for that.  Or, I feel like someone’s mother-in-law.  “Hey Mom!”  It’s a weird feeling to have multiple teenagers call you ‘Mom’, but it’s a sign of affection and respect.  It’s also a sign that their own home lives are lacking in something.  They feel comfortable here.  One young woman comes here to sleep.  Her home environment is highly abusive.  One of her family members has tried to strangle her in her sleep numerous times.  She, therefore, doesn’t sleep well if at all at her house so she comes here from time to time just to sleep.  She slips out quietly in the morning.  I’ve called CPS twice about that situation to no avail.

Another girl comes here to be herself.  She is forced to care for her younger brother who by all accounts meets the criteria for having some sort of developmental disability.  Her parents work all day so she must be his caregiver.  She’s a senior in high school this year, and she’s getting out.  She comes here for a break.  Being a house full of girls, we usually get only girls coming here, but, on occasion, we do get a boy.  He is a transgender boy.  His parents hate him.  They “forget” to pick him up and neglect him.  They ignore him completely.  They gave him a Bible for Christmas.  That’s it.  He comes over to our house occasionally but largely keeps to himself.  He’s skittish and shy and understandably so.  He’s being emotionally abused by his family.

All this is to say that I see a lot of behaviors come and go.  I hear what many adults would deem “inappropriate talk”.  One identifies it and moves on.  Most kids who come here want to be better particularly the ones who call me ‘Mom’.  They want to be respectful.  They, however, may not know how to be because they haven’t been taught well, or they haven’t been given enough real opportunities.  No one has believed in their goodness enough to give them a second or even third chance.  Everyone fails.  Everyone needs to be given opportunities to try again.

There are kids who come here, however, who do not want to be better.  They do not really care.  They have learned to be exploitative to get their needs met, and they’ll display rather cruel behaviors in unexpected ways.  That happened last weekend.  Eadaoin needed help with a school project so she invited one of her newer school friends over to spend the night.  Her name was Lauren.  Lauren was initially quite friendly and extremely talkative.  She talked so much, in fact, that I couldn’t get a moment’s peace.  Wherever I went, there was Lauren.  Lauren in the evening.  Lauren in the morning.  Lauren in the afternoon.  Lauren did not pick up on social cues either, and Lauren spoke very openly about her alcoholic stepfather and his abuse as if it were normal: “You know how adults are.  They drink when they’re stressed.”  She then went on to recount how she, her siblings, and her mother had to leave one night to get away from him.  I just nodded my head and listened.  There were other stories she told about her friends that raised red flags.  To her, it was all fine.  Good.  She was perfect.  Her life was great.

Grace’s friend, her former BFF, came over as well.  That friendship has been evolving as middle school friendships do.  She has been less than kind to Grace during the last year and a half displaying relational aggression.  We’ve been unsure how to handle it.  Does Grace end the friendship? Should she talk to her sometimes? Wanting to believe the best about her, she didn’t want to simply write her off.  These are important decisions for young people.

Grace came to me on Monday morning crying.  She told me that Lauren and her former BFF had called her ‘stupid’.  She had been trying to keep up with them in a board game, but she could not.  This is a reality for many young adults with schizophrenia spectrum disorders and for people taking certain drugs.  There is cognitive slowing.  It can’t be helped.  When she wasn’t able to process the game as fast as they thought she should, Lauren laughed at her and said, “You are so stupid.”  Her BFF laughed at her, too, and said, “Yeah, you are so stupid!”  They then went on to laugh at her together.  It didn’t end there.  Someone began teasing her for not being as physically developed as other girls.  “So, when are you gonna get your boobs?!”  And, that’s when the pointing and laughing really started.

As a mother, I felt something rise up in me that might be called rage.  As a woman who has watched other girls victimize girls in this way, I wanted to punch a hole in my wall.  As a host, I wanted to take these girls and shout at them, “How dare you treat my daughter like that in MY house!”  I did neither of these things.  I had to sit there and collect myself.  I had to take deep breaths.  I wanted to cry on her behalf.  Her face! She just stood there full of shame, tears collecting in her eyes.

At what point do we say, “No more.  That person can no longer come here”? I had to ask myself that question.  I may be called ‘Mom’ by a lot of these kids, but I am not their mother.  I had to remember that.  I am, however, Grace’s mother, and she is vulnerable.  So, I made an executive decision.  “Grace, BFF can’t come here anymore.  She is displaying a pattern of cruelty when she comes here.  I’ve talked to her about it more than once, and she won’t stop.  You cry when she leaves.”  I talked to Eadaoin about Lauren.  She might be a perfectly appropriate “school friend”, but she is not going to be a good choice for bringing home.  She lacks compassion and empathy.  I am truly sorry that she is enduring abuse at home.  That is probably why she has learned to normalize abuse and why she is repeating those behaviors.  She is merely doing what has been done to her.

These red flags, however, must be observed, and we have to follow our instincts.  This is how we learn to make good choices in our relationships.  If I don’t want to raise my daughters to tolerate abuse in their relationships, then I have to make the tough decisions about who will and will not come here.  They have to know that they are worth something.  They are worth more than something.  Do they want to hang out with people who think it’s funny to bully and call vulnerable people names? Do they want to be with girls who engage in relational aggression? This is how we develop a conscience in our children.  We point out these behaviors and ask them what they think.  In the end, Grace cried out of relief.  She had not wanted BFF to come to our home anymore.  She simply didn’t know what to do about it.  She was glad that I made the executive decision for her.  Eadaoin understood, too.  She said that she didn’t realize that Lauren would behave so badly, and she apologized to Grace.

It was a very fine line for me to walk.  I remember being 16.  I tied my identity to my choice of friends.  If my mom didn’t like my friends, then she didn’t like me.  I had to be so careful in how I talked about Lauren to Eadaoin.  I wanted her to know that she could still make good decisions.  I still believed in her, and I didn’t view Lauren as ‘all bad’.

I keep waiting for life to get easier, but I think that’s magical thinking.  I think we just need to increase our stamina.  Life is the ultimate marathon.  People praise and admire those who finish the IRONMAN triathlon or the Leadville 100.  I think finishing life well should not go unnoticed.  It is the greatest test of character, will, and endurance.  Feel good about yourself today.  You showed up for your life.  I guess now it’s a matter of how we show up, isn’t it?

 

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Another Article

I add good articles to my Cool Info page when I find them for future viewing by interested readers.  Here’s one I will be adding today:

Schizophrenia onset linked to elevated neural links

What is Neuropsychological Testing?

I’ve mentioned in past posts the necessity of neuropsychological testing in diagnosing schizophrenia spectrum and bipolar spectrum disorders.  People often hear this, nod, and then walk away asking, ‘What the heck is she talking about? What is neuropsychological testing?”

Well, let’s talk about that.  I finally have Grace’s written report in hand from her testing, and Eadaoin and I completed her intake for her round of neuropsychological testing yesterday.  Why even bother with this sort of testing, and why is it necessary?

Let’s define it.  What is it? There are a few definitions out there.  Here’s a short one:

Neuropsychological assessment is a performance-based method to assess cognitive functioning. This method is used to examine the cognitive consequences of brain damage, brain disease, and severe mental illness.

Here’s the best one I’ve found:

Neuropsychological evaluation (NPE) is a testing method through which a neuropsychologist can acquire data about a subject’s cognitive, motor, behavioral, linguistic, and executive functioning. In the hands of a trained neuropsychologist, these data can provide information leading to the diagnosis of a cognitive deficit or to the confirmation of a diagnosis, as well as to the localization of organic abnormalities in the central nervous system (CNS). The data can also guide effective treatment methods for the rehabilitation of impaired patients.

NPE provides insight into the psychological functioning of an individual, a capacity for which modern imaging techniques[1, 2] have only limited ability. However, these tests must be interpreted by a trained, experienced neuropsychologist in order to be of any benefit to the patient. These tests are often coupled with information from clinical reports, physical examination, and increasingly, premorbid and postmorbid self and relative reports. Alone, each neuropsychological test has strengths and weaknesses in its validity, reliability, sensitivity, and specificity. However, through eclectic testing and new in situ testing, the utility of NPE is increasing dramatically. (online source)

One of the primary reasons why a person might get an NPE is to confirm a burdensome mental health diagnosis particularly if that person is a child.  For example, if one suspects that a child has early-onset bipolar disorder, then evaluating the neuropsychology of the child should be part of the diagnostic process because there are specific neuropsychological markers, specifically executive function deficits, when bipolar disorder is present.  It is irresponsible to diagnose a child with bipolar disorder and subject them to the medications without having included an NPE in their diagnostic process.  The same is true for a schizophrenia diagnosis.

In the context of a schizophrenia spectrum disorder particularly in childhood-onset (COS), the NPE needs to be one of the tools used every two years until the disease process/prodrome settles which isn’t until after the first five years of onset and/or the child reaches eighteen to twenty years of age.  COS is a severe form of schizophrenia.  The earlier the onset, the harder the child is hit particularly in cognition.  Recall that schizophrenia is defined as having three categories of symptoms: positive, negative, and cognitive. (See Clearing The Fog)  This is where the NPE becomes highly valuable.

Grace had her first NPE when she was seven years-old.  That can be unusual because most neuropsychologists won’t perform an NPE on a child so young, but I can be very persuasive.  Grace was completely unable to read, and I was trying to convince a school board to grant her an IEP.  I won because I had an NPE from a reputable hospital.  Her next NPE was done when she was ten years-old at the very beginning of COS although we didn’t know that we were observing that.  Her next NPE was a few months ago.  The neuropsychologist was thrilled to have three data points to chart, and the results were indeed stunning.  On the graph, starting from age 7, there was a decline in very specific cognitive functions.  In certain areas, she is growing normally–verbal skills.  In other skills, she is not just below average; she is impaired.  That is a marker of disease progression known as regression.  Remember, schizophrenia is a neurodegenerative/neurodevelopmental disease like MS.  It isn’t like depression or even bipolar disorder in that the brain itself is largely unaffected in structure, size, or density.  People with schizophrenia lose white matter, and they lose the most white matter in the first five years of disease onset.   So, a child with COS is doubly hurt because their brain is growing and developing while degenerating at the same time.

The NPE is vital in a treatment plan because it allows parents, caregivers, educators, and clinicians to see exactly where the impairments and regressions have occurred.  This allows for a very specific course of treatment and therapy to be created so that the parts of the child’s brain that are growing and developing normally can be taught to compensate for the impaired areas in addition to aiming treatment at the impairments.  Knowing the exact nature of the impairments also elucidates the etiology of certain behaviors.  What might look like panic attacks or tantrums may actually be a function of poor executive function and a deficit in working memory.  A thorough NPE will reveal that.

Grace will receive another NPE in two years.  Her neuropsychologist was very clear with me.  She placed herself on Grace’s team and all but demanded that she see Grace again in 24 months for another round of testing.  Because Grace’s results were so stunning and because Eadaoin is struggling with mood and working memory issues, the neuropsychologist made an exception for our family and insisted that she be evaluated as well.

The question that most people ask about the NPE is “Will insurance pay for it?”

That depends.  If it’s solely for the purpose of diagnosing a learning disorder, then no.  They consider this an educational issue and leave that to the schools to do.  That’s what an IEP evaluation is for, so say insurance companies.

Grace’s NPE, however, was covered entirely by insurance because her neurologist ordered it, and it is being done for the purpose of tracking regression and disease progression.  Due to family history and possible diagnosis of a mental health disorder, Eadaoin’s NPE is also being paid for by insurance.  It will also help her obtain an IEP.

So, what kind of tests are involved in this so-called neuropsychological assessment?

For general intelligence, the WISC-IV, VCI Subtests, PRI Subtests, WMI Subtests, and PSI Subtests.  For memory, WRAML-2 and CVLT-C.  For Visual-Spatial/Visual-Motor, VMI.  For social perception, NEPSY-II and CASL.  For attention and executive function, Conners’ CPT-2, WCST, D-KEFS, Trail Making Test, Color-Word, Verbal Fluency.  For achievement, WIAT-III.  For motor, grooved pegboard.  For adaptive behavior, ABAS-II (parent), ABAS-II (teacher).

Part of the NPE does involve teachers and parents answering questions, too.  It is a long process.  It takes a few months to complete, but it is worth the effort.  The NPE is also useful for children, teens, and adults with autism spectrum disorders and even ADHD as ADHD affects working memory and executive function.  There are many reasons to seek out an NPE, but, in the context of mental illnesses like schizophrenia spectrum disorders and bipolar disorder in children, the NPE becomes a vital tool in contributing to a solid treatment plan that not only brings stability to a child or teen but also provides direction into how to specifically treat a person so that they can thrive.

 

Anxiety and Practicing The Art of Mindfulness

In addition to Grace’s childhood-onset schizophrenia spectrum disorder diagnosis, she also has a generalized anxiety disorder diagnosis.  So, while Grace’s positive symptoms are under control, she still has some negative symptoms, cognitive symptoms, and symptoms of anxiety.  Controlling the positive symptoms in schizophrenia seems to be goal number one because a person can’t function if they’re psychotic.  I’m not entirely sure how one controls a lack of behavior and feelings which is what the negative symptoms are.

Grace now exhibits a very low affect.  At times, she glides around the house like a wraith.  It used to be very unsettling, but it’s very familiar to me now.  It does freak out the normies like the social workers who come to assess her.  They look a little frightened of her.  Her mood is not congruous with her affect.  She appears apathetic, having no energy for what used to interest her, but this isn’t necessarily true.  It’s just how she appears.  Oftentimes, if you ask her how she is she’ll tell you that she feels well which is just odd because she looks terrible.

The part of her diagnosis that is exacerbating her negative symptoms which may kick off her positive symptoms is her anxiety.  Anxiety is a monster, and it is hard to control.  Stress makes anxiety worse.  Stress also wakes up the sleeping dragon of schizophrenia.  What can be done to control anxiety? I’ve been going around and around about this.  Grace does receive services, and, while the services are good, it feels like it’s not the best fit.  We’re not hitting the bulls-eye.

Grace, like so many of us, is easily triggered by small things.  She can be moving at a good clip until one little thing sets her off, and then the whole family is affected by her crash.  It is extremely stressful.  We might be out enjoying a lovely day when, suddenly, Grace’s mood switches, and she’s standing in the middle of a venue looking like Creepy Susie.

Angus Oblong - Creepy Susie 300dpi

 

It’s unsettling, disappointing, and, to be honest, hard on everyone.  Of course, we all love Grace and want to help her, but the honeymoon is over.  I’ve seen some eye rolls.  I’m seeing the shoulders slump.  “Do we have to leave now?”  The resentment is building.  The questions are going to come: “Why does everything have to revolve around Grace?”

That’s a fair question.  My answer? It doesn’t.

So, last week, I took it up a notch with Grace because I wanted to know what her limits were.  She was doing well.  She was self-directing.  Everyone was getting on, and then she wasn’t doing well.  I don’t know what set her off, but her dark presence cast a gloomy pall over the rest of us.  I took her into a vacant bedroom and talked to her.  I wanted to know what had caused her mood to switch.  I also wanted to know why it was so frequent.  Lately, she has been particularly antagonistic towards Milly.  Milly can scarcely breathe without Grace criticizing her.  Milly is not going to put up with that so she dishes it back to Grace.

There’s nothing like having a house guest to open your eyes to relational dynamics.

Basically, I told Grace that she’s had about two years of therapy and skills training.  What skills was she using in the moment to help herself deal with whatever was bothering her? No response.  I also said that I understood her limitations, but I was going to practice assumed competence here.  I was not going to enable her.  Sure, she had a diagnosis.  So what? She also had more invested in her success than most adults have so she needed to bring those skills to the table.  Her therapist wasn’t coming into our home for hours every week for nothing.  I expected her to use what she was learning.

No response.

“I can’t remember my skills! And I get anxious because I get bad thoughts.  And then I get overwhelmed.”

That’s information I can work with.  Cognitive symptoms are part of schizophrenia, and the earlier the onset the worse the cognitive decline.  We can type out a list of her skills and put them on cards like a cheat sheet.  That’s easy enough to remedy.

The “bad thoughts” are something altogether different.  Is that anxiety or psychosis?

People with schizophrenia can experience a call to action wherein they will hear voices or even have an urge to do something that they intuit as coming from somewhere outside of themselves.  This occurs during psychosis.  It is said that a person has “insight” when they know that the voice or call to action is not real.  Anxiety is a natural by-product of experiencing psychosis because one would be fearful of experiencing it again.  “Is that person real? Am I really seeing this? I just heard a voice.  Was that voice a real voice?” When you know that you’ve once experienced a reality that, to you, was very real but was, in fact, not real at all, then you will question reality and your perceptions of it frequently.  This is the root of Grace’s anxiety.  She questions her perceptions a lot and engages in checking behavior which looks like obsessive behavior.  Did she really take her medications, or did she just imagine it?

I, therefore, wanted to come up with a strategy to help her.  I am currently taking a Dialectical Behavior Therapy skills class with Eadaoin.  It’s 25 weeks long, and we are learning, in great detail, DBT and how to apply it to our lives.  What I noticed about Grace’s statement is that she had applied a judgment to her thoughts.  She had “bad” thoughts.  Not just thoughts.  And the nature of the thoughts is what kicked off her anxiety.  What if I could introduce her to mindfulness, a core component of DBT, without telling her what I was doing? What if I could teach her Step 1? Just Step 1?

“Grace, would you be willing to think differently about your thoughts? What if your thoughts, when you are not psychotic, are neither good nor bad.  What if they are just thoughts.  What if, instead of judging them, you just watched them go by like clouds? So, imagine yourself on the hammock looking up at the sky watching the clouds pass over you.  You see a cloud shaped like an elephant.  You don’t say that it’s cute or big or good.  It’s just an elephant.  You then see a ball.  Then, a raindrop-shaped cloud.  Then, a kitten.  Then, a face.  Then a cloud shaped like a horrible monster who frightens you.”

“I don’t like that!”

“Well, no, because normally that is not something that you want to see.  There are intrusive thoughts that we don’t want to think, but now instead of applying a judgment to the cloud and labeling it as a bad cloud simply let it pass.  ‘That’s a monster cloud.’  It’s neither good nor bad in this moment.  It’s just a cloud.  Then, you see another cloud shaped like a candy cane.”

“That’s hard, Mom.”

“Yes, it can be, but it’s not impossible.  It’s just a new way to think about thoughts.  We can be so attracted to one idea that we often don’t realize that there are other ways to think.  Instead of judging our thoughts and categorizing them as good or bad, we can simply let them pass.  They don’t have to be either.  You can be an observer of your thoughts rather than a judge of them.  The funny thing about doing this exercise is that once you start observing your thoughts, you will notice that you start to feel different in your body.  You will start to feel less anxious because you aren’t assessing yourself all the time.”

Grace agreed to try this.  This practice is called observing or wordless watching, and it is step one in practicing mindfulness.  It is not easy, but it’s doable.  I’ve been practicing mindfulness for a few years, and I can say that it’s worth learning.  Your inner state of mind changes for the better as you increase your practice which changes your outer affect and relatability.  As you learn to stop judging your thoughts you will find that you stop judging others which is, to me, a miracle.

Keep in mind, mindfulness is a practice which means that as you begin it will not come easily.  The more you practice, the easier it gets.

Also, there are many, many mindfulness exercises, but here’s one that I find quite fun:

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click the image for the link

In addition to this, you can print mandalas which are fantastic for practicing mindfulness and a wonderful excuse for breaking out the markers, colored pencils, and crayons.  Here are some useful links for free printable mandalas and a brief overview of the mandala:

 

 

 

 

The Empowered Caregiver

I guess today is the day for more than one post, but this is for your edification.  I haven’t gone into too much detail about my appointment with Grace’s neuropsychologist yesterday.  Surprisingly, I couldn’t bring myself to talk about it.  I am a verbal processor, but I was simply too upset by the test results to speak about them yesterday.  I had to hold back tears yesterday when I shared the results with my husband.  My husband, being a dude, was very pragmatic: “Well, Jules, we knew, didn’t we? Now it’s confirmed.  Now we know.”  I couldn’t get there.  My emotional self was ruling over me yesterday.  My thinking self was standing in the corner.  I couldn’t find my wise self.

Basically, the neuropsychological testing has provided us with a great deal of data that show that Grace is now cognitively impaired.  It is severe.  The good news here is that the doctor who did all the testing is absolutely fantastic.  She explained that she went very in-depth with Grace, well beyond the testing that was done two years ago.  She also spent a great deal of time digging through all the current research on neurocognitive decline in schizophrenia spectrum disorders.  She is now adding herself to Grace’s care team, and she insisted that she see Grace again in two years for another round of testing.

It is not characteristic of me to be pushy.  I have to work very hard to be assertive.  I prefer not to be the center of attention in groups although if no one will speak I will speak first as is typical for an only child.  I, however, have always been unusually assertive where Grace has been concerned.  I had a weird intuition about her from Day 1.  For example, I spread out her vaccinations so that she received one at a time because I had a weird feeling.  As it turns out, she was violently allergic to the Prevnar vaccine.  As a baby, she had a 105 degree fever for four days, a swollen face and lips, febrile seizures, vomiting, and a rash all over her body due to that vaccine.  I would never have known what vaccine caused the reaction had I not insisted that she receive them all separately.  She would have died had she received it a second time.

When she was seven years-old, I insisted that a clinical psychologist at one of our local children’s hospitals administer a neuropsychological work-up.  The doctor told me repeatedly that she was too young, but I had a feeling that something was wrong.  And, I was right.  Her learning disorder was diagnosed very early because of this neuropsych, and I was able to influence her school to give her an IEP.  The better part about having the data from this particular testing is that it provided another point of comparison for the latest round of testing.  We now had three points of comparison to chart, and that is how we could really see how far Grace had declined.  Having this information is vital for her care, future planning for her treatment plan, future planning for her education and IEP, and strategic planning for how we maintain and direct our own household.

The thing to know about early-onset schizophrenia spectrum disorders is that most of the published longitudinal studies have been performed in adult populations.  What is being discovered is that the results from adult studies cannot be applied to children.  The adult brain is matured, therefore, it responds differently to drug therapy and even the onset of disease differently than a child’s brain.  Neurodegeneration looks different and progresses differently in the adult brain than it does in the child’s brain.  So, childhood-onset schizophrenia spectrum disorders and even childhood-onset mood disorders cannot be treated the same as they would be in an adult.  Children manifest these diseases differently.

If you are a parent, then this will not be hard for you to grasp.  Think about those viruses that run through your home.  The virus shows up differently in your child than it does in you.  When Milly was four months-old, she caught Hand, Foot, and Mouth Disease.  She had little blisters on her feet and bright red palms.  She looked uncomfortable.  I caught the illness from her, but it affected me very differently.  I had very painful blisters all over my hands and feet, and something like twenty to forty sores lining my cheeks and throat. It was agony.  I couldn’t eat.  I couldn’t speak.  All I could do was drink water and drool.  I called my doctor, and she wanted to prescribe Vicodin for the pain.  But, I was breastfeeding.  I just had to ride it out.  I lost ten pounds.  The illness didn’t fully abate for fourteen days! This is an example of how something can look different in a child vs. an adult.  It’s the same with “diseases” of the brain like mood disorders and psychotic and affective disorders which are really neurodevelopmental and/or neurodegenerative disorders.  So, when people tell you things like, “Oh, my Uncle Frank is bipolar.  He takes lithium, and he’s just fine.  Your kid should take lithium, too, and she’ll be fine like my uncle,” it’s an ignorant statement because you cannot treat a pediatric psychiatric illness like you treat an adult’s.

The rate of neurocognitive decline in adults diagnosed with schizophrenia spectrum disorders is nothing like it is in children and adolescents:

The current study is the longest follow-up study to date of early-onset schizophrenia compared with both a healthy and a neuropsychiatric (ADHD) control group using an extended neurocognitive test battery. The main finding is a significant decline in verbal memory and learning and a neurocognitive arrest (ie, lack of improvement with age) in attention and processing speed, after 13 years in subjects with early-onset schizophrenia. The results imply that impaired neurocognition is present early in the illness process (nevrodevelopmental), but certain later maturational processes may also be dysfunctional. Elsewhere we have reported findings on the dichotic listening (DL) procedure showing the same trend.25 Normal DL performance characterized the schizophrenia group at baseline, while the group showed significantly impaired executive attentional control at follow-up. The findings support the hypothesis of neurocognitive decline during postillness neurodevelopment in early-onset schizophrenia.

These results stand in contrast to stability of neurocognitive functioning reported in the majority of longitudinal neurocognitive studies in adults with schizophrenia. However, the results support the findings from the recent follow-up study of adolescents with early-onset schizophrenia, which found deterioration in immediate verbal memory and attention over a 4-year period. (Schizophrenia Bulletin)

What does all this mean?

Go with your gut.  If your intuition is telling you that something isn’t right with your child, then listen.  Don’t settle for sub-par care.  After Grace had her allergic reaction to the Prevnar vaccination, the emergency room physician told me that I shouldn’t hesitate to give her the second dose of the vaccine.  The allergist who overheard her nearly had a heart attack, took me aside, and said with emphasis, “Under no circumstance should you give your daughter a second dose of that vaccine.”  Just because someone has “Dr.” before their name doesn’t mean that they’re good at their job.  After all, what do you call someone who graduated last in their class from medical school?

Doctor.

Be assertive.  It’s hard to assertive.  It’s hard to make those phone calls and insist that your child’s needs matter particularly if there is a very long waiting list, but you have to start somewhere.  Put your child on the list.  Keep asking questions.  Talk to other parents whose kids seem to be stable or improving.  What are they doing? Who are they seeing? What kind of treatment plan do they have in place? This is how we progress.  We build a community of like-minded people who are willing to share and help each other along.  We find clinicians who are willing to bend the rules to help our kids.  For example, Eadaoin desperately needs neuropsychological testing as well, but no one is willing to take that need seriously.  I have had door upon door slammed in my face.  Yesterday, as the neuropsychologist was sharing Grace’s results, I asked about Eadaoin.  I explained her symptoms.  I asked if it would be wise for her to get testing.  Grace’s neuropsychologist looked at me and said, “Normally, a child would have to be in our system here to be seen by me, but this is serious.  With your family history and her age, she very much needs testing.  I’ll do it myself.  I’ll put in a request.  Have your PCP fax the referral, and we’ll get it going.”  So, learn to take some risks for your child, and you’ll be astounded at what you can achieve.  Yes, you will be denied, but you’ll also move forward.

Educate yourself.  Learn the lingo.  Familiarize yourself with the research so that you can enter into the conversations with good questions.  This is how you participate in your child’s care.  It’s also how you empower yourself.  You will feel a whole lot less like your life is happening to you when you can participate in your own circumstances more fully.  This is how you equip yourself.  Unfortunately, no one is going to do that for you unless you enroll in a group that you either pay for or insurance pays for.  Either way, you have to find your mettle.  You have to enter into your circumstances and be your own catalyst for change, or you’ll end up feeling steamrolled by your own life.  No one wants that.

With that in mind, here is a fantastic article to get you started.  This is what Grace’s neuropsychologist meant when she said “classic presentation”.  If you are taking care of someone with an early-onset schizophrenia spectrum disorder, then this is for you:

Neurocognitive Decline in Early-Onset Schizophrenia Compared With ADHD and Normal Controls: Evidence From a 13-Year Follow-up Study

Sniff

I returned to the specialty hospital today to hear the results of Grace’s neuropsychological testing.  I went alone.  There was a huge back-up in the parking garage so I was late.

I sat down with the neuropsychologist in her office.  She sat across from me.  She inhaled and looked at me, paperwork in hand.

“Do you remember what you said to me when we had our first meeting? You told me what Grace’s psychiatrist told you when she diagnosed Grace with schizophrenia.  She told you what she had, and she told you that the prognosis wasn’t good.  Well, I’m going to take my cue from Grace’s psychiatrist.  I’m going to tell you what you already know.  You came in here afraid that Grace was declining.  I’m going to tell you that she is, and the prognosis isn’t good.”

I knew.  But, when someone tells you and they show you all the data points, well, it’s stunning.  I felt a lump form in my throat when I heard the phrase “cognitively impaired” and “broad impairments” and “classic presentation” and “neurodegeneration”.  I knew what the results would be before the testing, but knowing and having the hard data feel different.

I had hoped that she might have leveled off.  I had hoped that her IQ would not have dropped.

I hate this disease.  I hate it.

I just hate it.

Mood vs. Function

Grace has had a few bad days.  We haven’t had days like these in a long time.  Sure, she gets into moods, but we all have moods.  Granted her moods are more extreme than yours or mine most likely.  Her bad days are the kind of bad days that land someone in the Behavioral Health ER.  Suddenly, she’s sad.  Then, she’s really, really sad.  Then, she feels compelled to act on her sadness by harming herself.

This kind of mood comes on fast.  I can’t predict it.  There are no harbingers.  It’s like a random strike of lightning.  One moment, you’re enjoying your Sunday on the golf course, working on your putting.  The skies are clear.  The sun is shining.  The next moment, you’re on the ground with no memory of what happened to you.  Mood disorders can behave like this.  Once the extreme mood passes the sufferer often can’t remember what that mood was all about.  It’s just a blur of intensity and high color.

This is Grace right now.  Intensity and high color.  We’ve had to use our PRN prescription of Seroquel a few times recently to manage her moods and psychosis.  She’s been hallucinating daily and very sad.  This is not a great combination.  We can have one state at a time but not both.  This can lead to the dreaded mixed state which is the Patriarch of dangerous mental states, but, for whatever reason, Grace tends towards falling into mixed states.  So, yeah, I need that bottle of Seroquel in my back pocket.  It’s my magic bullet.

Dr. Awesome, however, doesn’t like it.  Dr. Klerpachik didn’t seem to mind, but he warned me that Dr. A would probably get all up in his business for prescribing the same class of anti-psychotic as Abilify to manage Grace’s symptoms.  She is the queen around here when it comes to psychotic disorders in children.  She trained Dr. K.  We just had our check-up with Dr. Awesome, and our visit didn’t exactly go well which surprised me.  Usually, it’s in and out.  Here’s your prescription, but Dr. A is thorough.  She is not happy that Grace is still hallucinating.  She hallucinates a few times a week, and she is currently hallucinating daily.  Most of her hallucinations are benign.  She sees our cats doing weird things like sitting in the kitchen sink.  Sometimes, however, she sees things that stress her out like a weird, faceless man sitting next to her on the couch watching TV with her.  Or, she might see an arm reach out of the couch to try and grab her leg.  That’s not quite as benign.  It’s just creepy.  She no longer trusts her own perceptions as a result.

Yesterday, two of my daughters were outside romping in the snow.  I could hear them yelling at each other inside.  Ah yes, a snowball fight.  Suddenly, Grace said, “Mom, I hear voices now!”  I heard her sigh.  I replied, “Grace, we’re all hearing voices.  Your sisters are outside having a snowball fight.  That’s what you’re hearing.”  Sounding almost overjoyed, Grace sighed again with great relief, “Oh good! I thought I was hearing voices!”

Dr. Awesome was very direct and told me that Grace isn’t going into remission.  The drugs should have stopped the progression of her “illness”.  She’s on so many medications that she’s concerned about her side effect profile.  She was reading through the notes in her file and asked about the mitochondrial disease.  “What’s this mitochondrial disease? What do we know about this?”  I shrugged.  “I don’t really know.  We don’t know, and if she does have it we treat it how we’re treating it.”  She stared at me.  “What does that mean? I know nothing about mitochondrial diseases.  If she has it, then  I need to read about it.  I need to know what I’m looking at.  I need to know!”  Don’t we all.  I need to know as well because mitochondrial diseases are often progressive.  Could that be why Grace continues to hallucinate? Is that why she continues to slide down the slippery slope of cognitive decline? Grace has a brilliant neurologist, but even she’s at a loss.  Mitochondrial diseases are very hard to diagnose and just about impossible to treat.  I think, however, that Dr. Awesome is not happy not knowing.  Dr. Fabulous and I can perhaps live with the mystery and administer palliative care.  Dr. Awesome wants answers.  Hell, I’d like answers, but I sort of feel like Inigo Montoya from “The Princess Bride” asking the Masked Man to reveal to him his identity during their epic duel:

“Who are you?”

“No one of consequence.”

“I must know.”

“Get used to disappointment.”

“Okay…”

Alas, there will be tests and more tests no doubt in Grace’s future.  Her presentation is just too complex.  In the meantime, I have to figure out ways to parent her that don’t sound like a bad joke: “Mom, there’s man sitting on the couch.  I can see him!”…”Well, just don’t go in there.”

Yeah, that’s not exactly brilliant parenting.  That’s like the stupid joke about the man who visits his doctor complaining about his elbow hurting when he bends it.  His doctor responds, “Well, just don’t do that!” As much as I’d like to respond with a similar answer, I can’t.  This probably accounts for my extraordinary exhaustion.  This is high-level problem solving, and I’m doing it all the time because Grace is constantly walking the psychosis line.  It’s very delicate.

Just this morning, she woke up in one of those moods.  Two nights ago she hit a very low spot, and she’s still climbing up from her Pit of Despair.  She was extremely agitated as she did her morning activities.  All she has to do is get dressed, brush her hair and teeth, take her meds, put her pre-made lunch in her backpack , and either pack her breakfast, or eat it.  This is often more than she can handle.  She was on the verge of crying or self-harming all morning.  I asked her how she felt.  She tried to explain it, and then I gave her the word.  “It sounds like you feel agitated.”  She immediately said, “Yes, I feel agitated.”  It looked to me like she was about to lose it.  It’s hard to know what to say to someone who is trying very hard to practice self-control.  She is trying to do her deep-breathing, but it looks more like hyperventilating.  “Grace, you don’t have to lose control of yourself here.”  She started to vibrate.  “I’m feeling angry! I woke up this way!”  I thought about it.  She needed help, but I didn’t know what to say.  I’ve awakened in a pissed-off state of mind before.

Last month, I tried some progesterone cream.  I’m only 41, but I had a few hot flashes.  I just wasn’t having it. Hot flashes? It felt like I was walking around in my own personal sauna.  It was miserable.  So, I thought that progesterone cream would help.  Wrongety-wrong-wrong.  I tried an 1/8 of the recommended dose, and two days in I thought I was going to murder everyone in my path or just set myself on fire.  Self-immolation seemed like a good option to me.  At least I would have had a choice about feeling like I’d been set on fire.  The thing is I don’t get PMS.  I never have.  I might get a little weepy from time to time, but I don’t get bitchy or angry.  So, this experience was an entirely new experience.  I am now terrified of that progesterone bottle in my bathroom as is my husband.  So, I thought about that experience and Grace feeling angry.  I still had to be functional even though I was homicidal.  Huh.  Now there’s a thought.  I went with it.  “Grace, you know, I wake up from time to time in a bad way, but I have to be functional even though I’m mad.  Do you think you can be agitated and functional at the same time?”  She thought about it.  “You are free to feel agitated.  It’s okay to feel that way.  Sometimes you can’t change how you feel even with coping strategies, but maybe stop thinking about changing how you feel and instead think about being functional.”  That did the trick.  She sat down for a little bit and started talking about what she did yesterday and fidgeted with something on the table.  Within five minutes, she was under control and ready for school.

I think that this is actually a great approach for anyone because moods change.  We have to learn to go with the flow particularly females because our hormones can do a number on us.  One day we feel okay.  The next day we might feel energetic.  The next day we feel exhausted.  The ebb and flow of estrogen and progesterone affect cognition, energy levels, libido, and, yes, mood.  Even men have a hormonal cycle.  Their cycle is just longer.  So, learning to go with the flow and focus on functionality is a great coping strategy rather than trying to change the mood.  There’s a saying in my neck of the woods: If you don’t like the weather, then stick around for five minutes.  Moods are like the weather.  They are ever-changing.  Functionality, however, can be improved over time through therapy, skills training, and various self-help approaches and even through modeling in the context of relationships and mentoring.  It’s an idea in any case.  It worked this morning.

As always, it’s one day at a time.  One moment sometimes.