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


More Data

Grace was in the rapids of self-harming ideation for about a week.  It was exhausting.  She was also hallucinating.  It came out of nowhere.  Combine that with extreme irritability, and it just makes for a very stressful period of time.  I would send her to school and practically melt into my chair.  I went for a week without getting out of my pajamas.  Sure, I showered, but I just didn’t have the stuffing to get dressed.  I knew what was coming home to me.

Then, on Wednesday, she got a migraine.  A bad one.  The hallucinations stopped.  The ideation went away.  The irritability disappeared.  Grace takes 100 mg of Topamax daily to prevent migraines.  She started taking this medication last November.  This was her first breakthrough migraine.  Her migraines usually last about seven days, and they do not respond to over-the-counter (OTC) abortives.  It won’t matter if I give her 800 mg of ibuprofen with coffee.  Nothing puts a dent in these monsters.  She will languish for a solid week in the dark until they subside.  The weird thing about them is that I used to be able to predict the onset of a migraine based upon Grace’s mood.  Usually she was deeply depressed with self-harming ideation.  She would hit the bottom, and then BAM! The migraine would start.  After the migraine, she would go up towards a mania.  The migraine was always the tell.  In the background was her psychosis always simmering away.  So far, no doctor has been able to explain the migraines to me.  Why do they last for seven to nine days? Why do they appear in the middle of a mood cycle? Why are they still happening even though she’s medicated?

Grace never had migraines until after her first psychotic episode.  The good news is that Topamax works.  Clearly, something neurological is going on.  Secondly, the Toradol injection that she gets at the hospital for her migraine does abort the migraine.  We went into the hospital last Thursday so that Grace could get an injection, and within five minutes her migraine was much better.  Her migraine was completely gone within 24 hours.  No languishing in pain.

The Toradol does interact a bit with the Lithium but not substantially so it can make Grace a bit sleepy.

All this is to say, if you have a loved one getting debilitating migraines with a schizophrenia spectrum diagnosis or bipolar disorder, and you’ve removed all the migraine triggers, then you have options.  Plus, you are not alone.  First, find a neurologist that believes you.  We went through two pediatric neurologists that refused to believe us.  One even implied that I might be drug-seeking and that Grace was a girl who was just anxious and couldn’t tell the difference between a tension headache and a real migraine.  Awesome.  Secondly, get rid of all migraine triggers that you can control.  MSG, tyramine, caffeine, and soy are big food triggers, and poor sleep hygiene is another issue.  Of course, if you’ve got a child with a developmental disability or any mental health issue, then the sleep issues tend to be affected.  Sleep hygiene goes out the window.  We do what we can and avoid perseverating on what we can’t.  Thirdly, track those headaches by keeping a headache calendar.  When you get into that neurologist armed with solid data, it’s a heckuva lot harder to blame it on food and poor sleep hygiene if you’ve got a documented pattern with documented symptoms.  Where is the headache being experienced? Behind the eye on the left side? On the back of the head? On the right side of the head? Is there nausea? Is there nausea and vomiting? Does the child feel better after vomiting? Is there photophobia (an intolerance to light)? Does it have to be quiet during the headaches? Is there an aura before the headache? Does the child see lights or smell anything? Does the child hear anything? Grace would hear music and see lights before her migraines.  She had a definite aura.  There are so many different types of migraines.  The more information you can record the better.

Lastly, don’t stop advocating for your child.  Find the right people to be on your care team.  I almost gave up until one of Grace’s psychiatrists insisted that I get another opinion.  I asked him if he knew a good pediatric neurologist, and, as it turns out, he did.  Grace’s neurologist, Dr. Fabulous, is the one that he recommended.  It also helped that he knew her personally, and, when I called the speciality hospital, I name-dropped–“So, Dr. Klerpachik wanted me to call on behalf of my daughter.  He really thought highly of Dr. Fabulous and thought that she might be able to help my daughter.”  That got my foot in the door.

The neuropsychiatric disorders are just weird.  A lot of research is being done, but it’s not enough.  Neurodegeneration is happening.  I do wonder if that’s what might be behind the migraines.

Not a great thought, but one must consider all the variables even if they are unpleasant.

B12 Deficiency and The Paleo Diet

I came across Chris Kresser recently.  He’s been around for a while, and he’s just released a new book, Your Personal Paleo Code.  The Paleolithic Diet is reaching fad status now, and I usually stay away from fad diets.  After what Dr. Terry Wahls accomplished with supplements and the Paleo Diet, however, I had to sit up and pay attention.  Dr. Robert Lustig even supports the Paleo Diet.  These people aren’t idiots but neither are some of the naysayers.  For the past few months I have continually run into the Paleo Diet and ignored it until my neighbor, a registered dietitian, recommended I look into it.  Then Chris Kresser released the aforementioned book.  I went back to his website.  What did I have to lose? The dude is no slouch!

I bought the ebook because I’m a Kindle junkie, and then I noticed he had seven free ebooks all addressing different health issues.  When I was in high school I just knew that I was going to medical school.  A seizure disorder thwarted my plans.  Chronic sleep deprivation, medical school and residency don’t go together.  So, I chose differently.  Consequently, I now find myself doing all sorts of reading about health in an effort to see if I can help Grace feel better and improve my own well-being.  It’s something, right? The first ebook I read was about B12 deficiency.  It’s a quick and dirty read.  You’ll be done with it almost as soon as you start, but if you have any issues with depression, anxiety, cognitive slowing, memory loss, or neuropsychiatric conditions, then you’ll want to read this ebook.

What does Kresser have to say?

What do all of these diseases have in common?

  • Alzheimer’s, dementia, cognitive decline and memory loss (collectively referred to as “aging”)
  • Multiple sclerosis (MS) and other neurological disorders
  • Mental illness (depression, anxiety, bipolar disorder, psychosis)
  • Cardiovascular disease
  • Learning or developmental disorders in kids
  • Autism spectrum disorder
  • Autoimmune disease and immune dysregulation
  • Cancer
  • Male and female infertility

Answer: they can all mimic the signs and symptoms of vitamin B12 deficiency.

He starts off with this:

Data from the Tufts University Framingham Offspring Study suggest that 40 percent of people between the ages of 26 and 83 have plasma B12 levels in the low normal range – a range at which many experience neurological symptoms. 9 percent had outright deficiency, and 16 percent exhibited “near deficiency”. Most surprising to the researchers was the fact that low B12 levels were as common in younger people as they were in the elderly.  That said, B12 deficiency has been estimated to affect about 40% of people over 60 years of age. It’s entirely possible that at least some of the symptoms we attribute to “normal” aging – such as memory loss, cognitive decline, decreased mobility, etc. – are at least in part caused by B12 deficiency.

Why is B12 deficiency under-diagnosed?

B12 deficiency is often missed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. This is why most studies underestimate true levels of deficiency. Many B12 deficient people have so- called “normal” levels of B12.

Yet it is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL – levels considered “normal” in the U.S. – have clear B12 deficiency symptoms. Experts who specialize in the diagnosis and treatment of B12 deficiency, like Sally Pacholok R.N. and Jeffery Stewart D.O., suggest treating all patients that are symptomatic and have B12 levels less than 450 pg/mL. They also recommend treating patients with normal B12, but elevated urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin (other markers of B12 deficiency).

In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. explain the low rates of Alzheimer’s and dementia in that country.  (B12 Deficiency)

If Kresser’s observation about Japan’s Alzheimer’s and dementia lower rates in relation to B12 is sound, then I feel shocked.  I thought about it and decided to do some research on B12 and schizophrenia.  Had anyone done any studies? Were there any results? Yes.  In March of 2013, the results of a study were published in JAMA wherein 100 patients with schizophrenia were given B12 and folate:

“The symptoms of schizophrenia are complex, and antipsychotic medications provide no relief for some of the most disabling parts of the illness. These include negative symptoms, which can be particularly devastating,” says Joshua Roffman, MD, MMSc, of the MGH Department of Psychiatry, corresponding author of the JAMA Psychiatry paper. “Our finding that folate plus vitamin B12 supplementation can improve negative symptoms opens a new potential avenue for treatment of schizophrenia. Because treatment effects differed based on which genetic variants were present in each participant, the results also support a personalized medical approach to treating schizophrenia.”

After looking around the journals, I found that there is research being done on folate and B12 in relation to dementia and schizophrenia.  It seems that there is a genetic mutation that affects the metabolic pathways which affects folate metabolism, and this mutation directly affects the negative symptoms of schizophrenia.  There is a connection between elevated homocysteine levels and low folate and B12 levels.  It’s all very complex.  Needless to say, B12 and folate matter.  Other countries are doing better than we are.  This is an easy fix.


Randomized multicenter investigation of folate plus B12 supplementation in schizophrenia

Dr. Terry Wahls and The Wahls Protocol: Dr. Wahls wrote her first book, Minding My Mitochondria, and it is now nowhere to be found.  No one wants to give it up.  It was a runaway success, but the publishers will not release any more editions because Wahls is releasing her second book The Wahls Protocol in March.  Wahls theorizes that MS is a mitochondrial disorder at heart, and that’s how she treated her own illness to get well.  Keep in mind, Grace’s neurologist thought that her illness might be mitochondrial in nature as well.

Dr. Robert Lustig: Dr. Lustig’s talk on sugar, Sugar: The Bitter Truth, was a Youtube sensation, and it’s now a short book.  I have the book.  I recommend it.  You can’t approach health, healing, and well-being without taking a look at the standard American diet (SAD) of which sugar is a huge part.  If you really want to feel horrible about eating sugar, then read this study: International Variations in The Outcome of Schizophrenia and Depression in Relation to Dietary Practices: an ecological analysis.

Chris Kresser: Kresser’s website is full of ebooks, recipes, links to his podcasts, and all sorts of other resources.  Of all the people recommending the Paleo Diet, I think Kresser is the most centrist in his approach.

Schizoaffective Disorder vs. Schizophrenia

I’ve gotten a lot of hits on this blog searching for the difference between schizoaffective disorder and schizophrenia.  It’s an important question for not a few reasons.  It’s an even more important reason if you’re the caregiver.  Grace’s exact diagnosis is schizoaffective disorder-bipolar type.  When she’s stable, that means that the mood component of her diagnosis is relatively under control.  She does, however, hallucinate almost daily, and we do deal with a certain level of paranoia almost every day.  Grace experiences sundowning which means that as the evening comes her symptoms worsen.  Last night, for example, at 6:45 PM, her speech was disorganized; she was fearful to sleep in her room.  She was stumbling around the house and mumbling to herself about something I couldn’t understand.  I saw her swatting at the air.  For Grace, this is actually pretty decent symptom management.  We wouldn’t have any sleepovers when she’s like this, but this is the reality of managing psychosis in a young person who experienced the onset of this disease at 10 years-old.  Overall, I am looking for insight.  Does Grace know that what she sees isn’t real? Yes.  Does Grace know that her fear is a product of her brain misfiring? That’s a bit harder actually.  Lately, she’s been waking up around 4 AM and lying in bed paralyzed with fear until morning.  She’s too terrified to get out of bed and ask for help.  There is a lack of insight into her fear.  We are working on this.

What I’ve described is the “shizo-” part of schizoaffective disorder.  In Grace’s case, however, she truly has almost all the symptoms of schizophrenia including the cognitive symptoms.  The “-affective” part of schizoaffective disorder refers to either mania, depression or a mixed state.  In Grace’s case, she has experienced all three while experiencing psychosis.  I would say that it was frightening, but it was also just plain weird.  She presented as an adult in her bipolar symptomatology with four weeks of severe depression, one transition week characterized by intense migraine-like headaches, and two weeks of mania.  This was a predictable cycle.  Attached to this was psychosis complete with positive, negative, and cognitive symptoms.  During her mixed states, we battled suicidal ideation.

Some clinicians believe that schizoaffective disorder is really just a form of schizophrenia.  Some don’t know what to make of it.  Some clinicians believe it to be on the bipolar spectrum.  Here’s what I know from the literature.  If a person had psychotic symptoms prior to the emergence of affective symptoms, then you are most likely looking at a schizophreniform diagnosis.  Grace has hallucinated for most of her life.  The affective symptoms didn’t show up until she was ten years-old.  This places her on the schizophrenia spectrum rather than the bipolar spectrum.  What does it matter since she would be clinically treated the same? It matters because schizophreniform diseases tend to progress, and a child must be cared for very specifically if they fall on the schizophrenia spectrum.  Bipolar disorder tends not to progress.  In schizophrenia, the brain atrophies.  The brain, on average, loses 5% of its mass, and there is an aggressive form of schizophrenia wherein patients can lose up to 20%.  Most people will lose that 5% in the first five years after the prodromal phase of the disease.  The interesting part of dealing with something like schizoaffective disorder in children is that there is no way of knowing which way a child will go until they reach about 18.

Grace is being closely watched for the development of pure schizophrenia as well as for how her current symptoms progress.  There are a few things that often determine prognosis.  If you have a family history of schizophrenia (Grace’s great-grandfather), maternal prenatal complications (check), and an early age of onset, then oftentimes the prognostication isn’t promising.  So far, Grace is doing as well as I could ever imagine in terms of her own personal level of hope for her future, but her brain is being ravaged.  She is not the same girl she was three years ago.  Not by a long shot.  Her biggest accomplishment this month is that she learned to unload the dishwasher.  This might sound odd that a 13 year-old girl just learned to do this task, but Grace’s executive function skills are so impaired now that unloading the dishwasher was, for her, like reaching the top of Mt. Everest.  She was very proud.

For one of the best discussions on the differences between schizoaffective disorder and schizophrenia, please read the following article complete with slide deck.  You’ll see just how nuanced the issue really is and what a pain in the ass these nuances are for the cream of the crop in the mental health field.


Understanding the Diagnostic Challenges of Schizophrenia Versus Schizoaffective Disorder (Slides With Transcript)

Dr. Fabulous

Grace and I finally met with our third neurologist.  Her psychiatrist insisted that we get a second, or really third, opinion.  We have waited for this appointment for months! We went to one of the premier specialty centers in our region.  One can’t just make an appointment.  I had to speak to a gatekeeper.  The gatekeeper sent me to a nurse.  The nurse questioned me.  The nurse then sent me to the neurologist’s nurse who questioned me who then spoke to the neurologist.  The neurologist then agreed to see Grace.  I was so relieved.  This is a facility that is known to treat “zebras”.  It’s a funny term, but it means that if all people are horses there are bound to be a few zebras in the mix.  Grace is a zebra at this point.

Dr. Fabulous spent two hours with us.  I have never seen such a thorough neurological examination.  She did not act like a neurologist either.  She was, well, normal and kind! Not at all clinical.  She seemed to like humans! Such a refreshing experience.  I will spare you all the details, but there is a plan and an idea percolating in the good doctor’s head.

Does Grace have a clear-cut case of childhood-onset schizophrenia aka schizoaffective disorder-bipolar type? Maybe not.  I know, I know.  I’m nervous.  Because Grace is having such debilitating migraines–oh yeah, we got a firm diagnosis on that, y’all–there might be more to her presentation than anyone has considered! Can someone please give me the Fist Bump of Victory on that? I have not been overmedicating my child.  Dr. Fabulous said that she is clearly having migraines–Transformed Migraines to be clear.  So, she’s increased her Neurontin to 900 mg as a preventative measure, and we need to bring in a pharmacologist to talk about abortives.  She wants to use a triptan, but triptans deal with serotonin.  Grace is already on so many drugs that deal with serotonin.  She doesn’t want her to get Serotonin Syndrome.  So, the jury is still out on how to abort these migraines, but, heck, we’ve got a diagnosis.  That’s something.

Remember my post on Ehlers-Danlos Syndrome? Then, the possibility of seizures due to these “events” she’s been having around flashing lights? Then, Grace’s GI issues with gluten? Then, of course, there’s the Restless Leg Syndrome and the intermittent muscle cramping and her strabismus.  When Dr. Fabulous put it all together she said, “I have a lot to consider, but I’m leaning towards some kind of mitochondrial disease.”  Combine that with her neuropsychiatric issues and the cognitive decline, and it starts to make sense.  It’s not a bunch of health problems in one little body.  It’s one underlying problem causing a lot of “symptoms”, if you will, the psychiatric issues included.

I feel stunned.  A mitochondrial disease.  So, Grace is being admitted to the hospital for three days for a VEEG and further testing in mid-October.

I don’t know about you, but I feel like I’m on a roller coaster! But, wouldn’t it be nice to have an answer? A real answer?!


What is Mitochondrial Disease?


Warning: Please excuse my husband’s and my sense of humor if we offend you.  It is how we are coping.  If we don’t find the funny in our daily lives, then we’ll fall into heap on the floor and do the Homer Simpson in an infinite loop.

This morning I took Grace for her second MRI.  Her neurologist, whom my husband has derisively begun to call Dr. Nouveau, has ordered the second scan to be sure that her brain isn’t degenerating.  Apparently, some rare degenerative neurological conditions present like schizophreniform mood disorders.  So, Dr. N is doing her part to rule out any hidden medical conditions.  At 0830, I dosed her up with Diazepam aka Valium and dragged her off to get her head scanned.   She did well, and she even felt well enough to attend a charity event with my friend’s church’s youth group.

Pause: If you’ve attended a church youth group as a youth, then you might recall that it’s just like attending middle school or high school in its social dynamics. It’s not friendlier or more welcoming or even more sensitive.  In fact, in my experience, if you want to be made to feel left out–particularly by girls–attend a church youth group.  Relational aggression runs high.  It’s just the way it is.

Play: Grace’s older sister accompanied Grace to Feed My Starving Children today–the service event chosen by the youth group leaders for their outing today.  Grace really wanted to go.  It’s a marvelous charity, and I thought it would enhance Grace’s self-esteem, too.  She is still psychotic, but she is managing to hold it together enough during the day if she isn’t stressed terribly.  The Three Men follow her everywhere, but the Creepy Lady hasn’t shown up today.  The Three Men were also not brandishing swords which meant that her psychosis wasn’t terribly out of hand this morning.  I let her go.  The youth leaders would be supervising her as well.  She needed to feel successful.

When we picked her up, she was smiling, but I could tell that she was exhausted.  Grace and her sister climbed into the car and reported that all went well.  Grace had the job of weighing the food.  She felt good about it.  Then, the story began.  There were three girls.  Three mean girls.

Grace:  “Why are there always mean girls? I don’t understand it.  This is church!”

Me:  “Well, who knows what’s going on with them.  People have all sorts of reasons for being mean.”

Grace:  “They were talking about this horror movie while we were packing food for starving kids.  How is that appropriate? (beginning to mimic one of the girls) ‘And then this baby had a demon go into it, and then the baby started walking around, and it was, like, sooooo creepy, but I wasn’t, like, scared at all!’ That is NOT okay conversation, Mom!”

My Husband:  “Well, you never know, maybe their parents made them watch that horror movie.  That’s some pretty convincing birth control, don’t you think?”

Grace: “DAD!”

My Husband: (putting on his stern Texan father voice) “Sit yourself down here, girls! You’re all gonna watch this horror movie about a devil baby! Now, you’re all gonna think twice, aren’t you, before you date, I bet!!”

Grace: “DAD!!”

My Husband: “Those devil babies are a real problem! How’re you gonna nurse a devil baby? They have those pointy teeth! And, they’ve got those red eyes! You can’t get rid of red-eye in all those portraits, can you? It wasn’t really a horror movie.  It was a fable!!”

Grace: “DAD!!!!”

Grace’s sister and I were laughing so hard that we couldn’t speak.  Perhaps you had to be there, but leave it to my husband to add some much needed levity to the situation.  Grace couldn’t even remember what she was upset about.  She was too upset with her father for talking about nursing devil babies and trying to take their pictures.  She completely forgot about mean girls, relational aggression, their cool iPhones, and the fact that she hasn’t been in school for two weeks.

Humor.  It is so important.

Sunday Evening

Grace has just come off a week of migraines.  I don’t know if it’s just one migraine that won’t abate or numerous migraines that remit and continue.  She missed an entire week of school.  The school doesn’t seem to care.  Should I?

Her pediatric neurologist finally returned my call this afternoon, and I filled her in on Grace’s condition.  Grace’s psychiatrist doesn’t know what to make of her hallucinations.  Actually, I think he has some ideas; he’s just doing his due diligence.  Her neurologist was very compassionate, and I realized how much I needed it.  Compassion is in short supply.  I almost cried on the phone.  I explained to her that Grace’s psychosis is worsening.  She is now terrified to ride in the car.  She doesn’t want to look into mirrors or pass by windows.  She now sees the three men all the time, and now they are brandishing swords as well as handguns.  They look meaner and more intent on harming her.  She fears that everyone might be out to get her, and she can’t tell what’s real anymore.

This is starting to sound a lot more like schizophrenia.  Gracie isn’t the only one experiencing terror at this point.  I’m right behind her.

Her neurologist will do her due diligence, too.  Another MRI.  Perhaps another EEG.  There are degenerative neurological conditions that present as psychiatric conditions, but they are rare.  So, is childhood-onset schizophrenia.  She told me that she believes Grace’s condition to be psychiatric in nature, however, and not neurological, but she is on board.  We are also seeing another psychiatrist next week.  We need another pair of eyes.  This gal sees a lot more schizotypal kiddos, and she may be able to help us.

I’m…exhausted, and I can’t send Grace to school.  It is completely irresponsible to send a psychotic child to school.  I know that even if the school district does not.

My husband and I are scared, but we must be brave.  There is little room for fear right now.  We have three other children.  Not just Grace.  I have an autistic child, too, who needs special attention.  I have another daughter with an anxiety disorder.  I…must solve this.  A foundation of truth.  I can build on that.