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?


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


6 thoughts on “The Empowered Caregiver

  1. I’m glad you got your voice back. 🙂 You are a powerful advocate for Grace. I always say that, I know; but it comes through in your blog. You are a great mom.

  2. You’re not only a great advocate for Grace (all your kids), but a great advocate and informer for all of OUR kids. I thank you for that. Taking the time to write to us, for us, even it’s for yourself and making it public (that’s why I write often) is such a selfless act…just like those ‘diamond in the rough’ doctors we happen to stumble upon that our children couldn’t thrive, couldn’t live without!

  3. Would you suggest neuropsychological testing if you don’t exactly know what is wrong with your kid? And the psychiatrist has been messing with meds and nothing is working? I’m getting frustrated because I don’t know how much she can control and how much she can’t.

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