About Grace

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Grace is 13 years-old.  She has a schizophrenia spectrum disorder, more specifically, schizoaffective disorder-bipolar type.  She was a normal kid one day.  Then, in September 2011, she wasn’t.  Here’s how it happened…Oh, and I also have three other daughters one of whom has an autism spectrum disorder and another who has a bipolar spectrum disorder.  I like to say that we live a BIG LIFE.  Our lows might be really low, but this just leaves room for magnificence, wonder, and astonishment.  Welcome to our BIG LIFE.  I’m astonished a lot.

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Grace hadn’t yet turned 11 years-old when the strange symptoms began.  She couldn’t remember what she had done at school.  Had she fallen asleep? She felt confused.  She was in a daze.  Her speech was slurred.  Her pediatrician sent her to the emergency room, concerned that she had had a seizure since there was a family history of seizure disorders.  She was examined and deemed healthy.  She was sent to a pediatric neurologist.  The pediatric neurologist found nothing wrong with her but ordered an EEG just to be on the safe side.  The EEG was clean.  The strange symptoms continued.  She began sobbing uncontrollably at random times during the day.  Severe headaches that looked migrainous began.  The evenings were the worst part of the day for her.  She would crawl under the table, grip her head, rock back and forth, and wail: “I don’t want to live.  I can’t live anymore.”  She would get up in the morning, pale, eyes puffy, dazed.  She was going through the motions.  She wasn’t sleeping.

We went to another pediatric neurologist.  She ordered an MRI and a sleep-deprived EEG, and we saw a sleep specialist at a local children’s specialty healthcare center.  She was diagnosed with Restless Limb Syndrome.  Her ferritin levels were exceedingly low which can cause low dopamine in the brain.  This can cause behavioral issues, too, so she was put on a ferritin regimen.  Her sleep issues improved quickly.  I felt relieved.  Maybe the low dopamine issues were the cause of her new behavioral problems? Her neurologist didn’t think so.  She took me aside in her office and suggested that we get a neuropsychological consultation because she suspected that Grace had a mood disorder.  I took a deep breath and took the next step.

Grace became suicidal.  We moved quickly.

Suddenly, Grace wasn’t depressed anymore.  She was happy.  Very, very, very happy.  She was interested in everything  She felt brilliant, and she could write in her journal for hours on end.  She was drawing in her sketchbooks for hours, too.  I wish I could say that she was her “old self”, but that wasn’t quite true.  She was a bit like her “old self”…on steroids.  Or crack.  Her mood was elevated.  Her speech was rapid.  She was euphoric.  She was grandiose, too.  She was completely averse to being corrected: “I’m a brilliant writer.  There is nothing wrong with how I write! It’s perfect!” And, she wasn’t sleeping either.  She was awake at 2 AM and watching movies.  She didn’t seem tired.

As quickly as she was “weirdly happy”, as she described it, she began to slip into sadness.  It would happen slowly, but within a week, she was in the darkness.  This cycle happened three times.  Two weeks of an elevated mood, a week of an interim state, followed by two weeks of a depressed state with suicidal ideation.

We sought the help of a center in our area who could provide a neuropsychological assessment as well as a mental health assessment.  I asked them directly if she could be bipolar.  They told me, “No.  It’s not possible.”  In the end, I was told that she had an Axis I Major Depressive Disorder and a Generalized Anxiety Disorder.  Grace is stressed by living with an autistic sibling.  That is exacerbating her anxiety.  Bipolar Disorder? Not possible.

Feeling in my gut that the experts were wrong and with the help of my own therapist, I was able to admit Grace into a partial hospitalization Day Treatment program.  After 29 days in Day Treatment, she was discharged with a Mood Disorder NOS (not otherwise specified) diagnosis and a Major Depressive Disorder diagnosis.  Essentially, the Mood Disorder NOS diagnosis means that they observed behavior consistent with childhood onset Bipolar Disorder, but they were not comfortable diagnosing an 11 year-old.  She’s too young, they told me.  So, they discharged her to me in a hypomanic state with a Neurontin prescription and a Zoloft prescription.

Two days after discharge, Grace crashed.  She switched moods.  We found ourselves in the Behavioral Health Emergency Room wherein I recounted Grace’s story…again.  She was admitted to the Children’s and Adolescents’ Mental Health Stabilization Unit where she currently is.  I was called last night by one of the best pediatric psychiatrists in our state, and we spoke for one and a half hours.  I recounted our family history, Grace’s history, and her release from Day Treatment.  The doctor told me that a Mood Disorder NOS diagnosis was incorrect.  Grace has Bipolar Disorder NOS, and she indicated that we know that children can have Bipolar Disorder so she was confused by our experience with the center that misdiagnosed her.  I said, “In the wake of the overly diagnosed children, they misdiagnosed Grace.”  She sighed and agreed with me.  Bipolar Disorder has been overly diagnosed in recent years, and clinicians are now too cautious to the point of misdiagnosing kids, thus, letting very ill children languish and families suffer interminably.  It’s unethical.

We discussed our medication options because Bipolar Disorder is managed through medication.  That’s the crucial difference between an Axis I diagnosis and an Axis II diagnosis.  A mood disorder is not a personality disorder.  You can’t manage and heal a mood disorder with CBT and talk therapy.  This is a disabling condition that needs pharmaceutical help.  Then, you can go on to learn coping strategies, but any therapeutic intervention that you attempt to learn won’t stick if your brain is on fire or fighting itself.  So, the doctor is adding Lamictal to her drug regimen and eliminating her SSRI since SSRIs are known to trigger cycling in bipolar brains.

Why blog about this? Grace is not the only bipolar child out there.  Childhood onset Bipolar Disorder is rare, but it’s not an extinct disorder.  We have been jerked around by experts for almost a year, and it has taken something akin to a psychotic break for Grace to finally get the appropriate help.  I was told by the “experts” at the center–a premier, well-respected facility in our state–that Grace couldn’t possibly be bipolar because children who are bipolar are usually hospitalized.  They are unstable.  Well, she’s unstable now.  I was an observant parent who was catching it before she became unstable.  Before the rapid cycling and switching were out of control.  This is what psychiatrists try to avoid, but it seems that this is what must happen in order for the mental health community to take note and listen.  A child must reach the brink of psychosis before they take a parent seriously.  This is one of myriad flaws in how the mental health system does business.

If our journey towards a diagnosis and towards getting and maintaining stability can help another child and family, then I, as her mother, will feel comforted.  We are just at the beginning of our journey towards empowering Grace to cope, stabilize, and, ultimately, heal, but we will get there.  I have three other daughters one of whom has an autism spectrum disorder.  I’ve been at the beginning of long journeys before.

It all starts with putting one foot in front of the other.

One day at a time.

August 2012

An Update:

Grace has been to the Behavioral Health Emergency Room again.  The last time she was there was due to self-harming; she had stabbed herself.  Strangely, she appeared completely calm when she did this.  Grace is also experiencing visual hallucinations and extreme paranoia.  She sees three men whom she can describe in great detail.  They follow her everywhere.  They carry handguns.  They want to hurt her.  They watch her all the time.  They don’t speak to her or call her to action.  Sometimes she can hear their footsteps.  Naturally, these symptoms have caused some alarm in her psychiatrist.  He is treating her more aggressively with Lamictal.  By next Monday, she will be at 100 mg.  She will also be seen by our local university–again.  There is a program that screens for schizoid personality disorders.  She will be going to the First Psychotic Episode appointment on Halloween.  I think that’s funny.  The question now is: does she have Schizotypal Bipolar Disorder, Bipolar Disorder with psychotic features, or is she in the prodromal phase of schizophrenia?

She is still only attending school 40% of the time if that, but she cannot attend a full day.  Her school still won’t grant us an IEP.

October 11, 2012

Another Update:

Grace has been diagnosed with childhood-onset Schizophrenia (COS).  Actually, it’s more like a “schizophrenia spectrum disorder”.  If I had to be specific, I’d say she has Paranoid Schizophrenia with bipolar features or Schizoaffective Disorder.  1 in 100 adults are diagnosed with schizophrenia.  1 in 100 of those adults are diagnosed by the age of 18.  1 in 100 of those people are diagnosed before the age of 13.  This is rare.  I am fortunate to have some gifted people in my life who can support us.  The father of one of my close friends has spent his career dealing with mood disorders in children among other things, and he has explained it thusly:

“Grace’s progression makes sense.  When she was 7 she was diagnosed with ADHD inattentive type as well as Learning Disability unspecified (That kid couldn’t read a word.  She was on an IEP for two years for reading instruction).  Three years later she was being assessed again for anxiety and depression symptoms.  From there, she was being assessed for symptoms consistent with a bipolar spectrum disorder.  Where have we landed? On the Big S.  She has received a plethora of neurological testing.  She doesn’t have a lesion or tumor.  She isn’t having seizures.  This leaves us with only one conclusion.  Grace lands somewhere on the schizophrenia spectrum.  This is why it takes so long to properly diagnose schizotypal disorders.  No one wants to do it.”

And there you have it.

October 17, 2012

Yet Another Update:

Grace has been released from her second partial hospitalization program in six months.  Her diagnosis has been clarified–Schizoaffective Disorder-bipolar type.  What does this mean? In my words, all the fun of schizophrenia complete with paranoia, delusions, and hallucinations mixed with all the fun of bipolar disorder complete with mania and depression.  The prognosis is apparently a little bit better than just plain ol’ schizophrenia but worse than good ol’ vanilla bipolar disorder.  So, there you have it.  I think this is quite the progression.

In July, Grace was diagnosed as majorly depressed and anxious.  In mid-August, she was mood disordered.  In late-August, she was bipolar.  In late October, she might have been in the prodromal stage of schizophrenia.  Now, we know that she was experiencing prodromal schizophrenia back when she was having her first EEG in October 2011.  Now that we know what’s going on, we are off and running.  I don’t know about you, but I sure like knowing.  So does Grace.

December 9, 2012

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20 thoughts on “About Grace

  1. Here’s hoping this will help you cope and stabilize as well. In my experience, writing is really good for that. Even if nobody reads it. For me, it was like Dumbledore’s pensieve. Getting stuff out of my head and onto my screen was really helpful. Hopefully this will help you in some way, too. I believe it will. But, don’t believe the hype. 🙂

    • Well, there’s not a lot of hype around here for me to believe outside of getting myself worked up, and I make it a habit not to listen too much to the voices in my head. 😉

  2. Writing is a great way to cope and process. I used to teach creative journalling for survivors of sexual asault. There is going to be something powerful in your story, in Grace’s story. ((hugs))

  3. Very well written and captivating. I’m sorry for your Grace to have things happening that are out of her control. How scary that must be for her. You sound like a brave mom who is doing all of the right things for your little girl. You are inspirational and I will draw strength from your obvious courage and tenacity.

    • Thank you for reading. When I was pregnant with my fourth daughter (who has an ASD, SPD, and an anxiety disorder) I was hit by a drunk driver. After she was born I had a lot of PT to do that I couldn’t do during the pregnancy. My auto insurance company didn’t want to pay for anything, and I was faced with the sickening reality of lawyering up. A woman I knew at the time came to me and said, “Be tenacious. Do not give up.” She had been in a horrific car accident years earlier. One of those accidents that eviscerates a body, and she lived in constant pain because of it. She, too, had to go to court to get her insurance to do its job. So, I didn’t give up even though the thought of fighting it gave me panic attacks. I fought it, and I spent a lot of time in front of the smarmiest lawyers on the planet–people that could have walked off the pages of a John Grisham novel. BUT, I won. After depositions, mediations, and even those lawyers sub peona-ing my gynecological records, I won. And, I even got the drunk driver’s auto insurance company to pay for some medical bills, too, which is unheard of since I live in a no-fault state. All this is to say that I have learned through life experience that tenacity is important. Everyone told me to give up, and I really wanted to. Everyone said it was impossible, but there was an injustice. A drunk driver hit a pregnant woman and walked away. He wasn’t even charged. And then my insurance company didn’t feel like fulfilling their contract in paying for injuries sustained in an auto accident as insurance companies so often do.

      I think tenacity is one of those qualities that isn’t talked about much, and it’s not sexy, is it? It’s not one of those character traits that everyone wants. But, if one is going to deal with any large government agency coupled with a longstanding illness or disorder in a child, you won’t get anywhere without it.

      By the way, you probably know this since it sounds like you’ve been doing this for a while, your school district can’t drop the accommodations for your child until you sign off on it. They may not treat you as such, but you are supposed to be the most powerful member of that IEP team. I was recently told that by an administrator, and I laughed out loud. What a concept. Parent as IEP team member. But, apparently, there are districts that do uphold IDEA and follow it. I hope that you are in one of ’em.

      Best to you! Happy Holidays, J

  4. Hi MJ. I’m doing a project for school (college, geared toward future exceptional ed teachers) and I was wondering if you minded if I printed out one of your posts to use (specifically Necessary Conversations, because I love that one). My goal with the project as a whole is basically to raise awareness of childhood mental illnesses. Even though your blog is public, without your permission, I won’t share your blog in print, or any other way. Thank you= )

    • Sure! It’s really important to raise awareness of childhood mental illness so by all means please do so. I would love to hear how it all turns out. Best, MJ

      • It turned out really well. It captivated the class, as my classmates kept leaving other students stations to pick up printed out blogs and fact sheets on childhood mental health – there was no room for me to stand by my own presentation! Some students were brought to tears reading some of the stuff and some kept looking at me and double checking that the statistics were accurate and the blogs were of real children (like I have time to make up stories!). Thank you so much again, I love reaching new people, especially ones that plan on going into the field working with special needs.

  5. Pingback: The State of Grace | Empowered Grace

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