The Beginning

 I was returning from one of my weekly trips to visit him when the thought of doing a blog just hit me. My hope is this will raise awareness of the everyday struggles a family of a bipolar child can have.  I also have the hope that my friends and family who read this can know what Joey is facing a continue to be the support they have been over the last few years.

So Joey has had problems for as long as I can remember. Looking back at the huge binder of information we have kept from all his appointments and evaluations it has become more apparent just how bad it was even before the diagnosis. At the age of 3 Joseph was having extremely violent outburst. It was difficult for anyone on the outside to understand. We just constantly heard it was typical for his age or geez lady parent your kid better, looking back we know it ran so much deeper than that. We had Joseph evaluated and at that time his social emotional functioning was 3 standard deviations below the norm, which is significant for those who might not know. Joseph began having counselling and at home interventions which would increase and continue through the years. I could go on and on for years but that's not why I am here. Ill bring you up to the breaking point.

By 2010 Joseph and the family had services weekly that included; in home respite workers, in home behavioral therapists, sibling counseling, family counseling, and a psychiatrist with medication management and was on special accommodations in the school settings.  Nothing seemed to work. Joseph at this point had been diagnosed with EVERYTHING; PTSD, ADHD, ODD, IED you name it they tried to treat him for it but nothing helped, at least not for an extended period of time. So we tried a "newer" therapy called EMDR with the hopes that this would help. I wont go into the details of this therapy because its rather extensive and a little confusing but it had been shown in studies to greatly improve impulsive and aggressive behaviors. So needless to say we were willing to try anything to help Joey. I drove Joseph every week 45 minutes to therapy and waited to see results, well we got them just not how we had hoped.

4 months into EMDR therapy Joseph started discussing in his sessions about the different people in his head that talk to him and he sometimes sees. He describe "little man" as he called him who was like a baby but protected him and the scary lady who would yell and scream at him and scare him in the night. Joseph began having night terrors again and sleep walking. His behavior became more erratic and violent. Thinking back I can not remember what exactly happened leading to Joseph's first hospitalization but I remember it taking 6 staff members in the ER to restrain Joseph from hurting himself and others. It was the worst day of my life having to admit my son little did I know it would be the first of many.

On his first admission to behavioral Joseph was diagnosed to have bipolar disorder. Something we knew all along but no doctor would diagnose. Joseph was started on depakote and seroqual for mood stabilization and after 1 week was discharged. A huge weight had been lifted from more shoulders. Throughout the week he had been in the hospital and slowly stabilized on medication I saw a huge change in Joseph. I finally felt as though I had my son back. Joseph seemed truly happy for the first time in a long time. This of course would be extremely short lived.Joseph's GAF at discharge 30.

The following day after discharge, Joseph, Christian, Paul and I went to a boy scout outing at a pool and Joseph seemed to be doing great. Everything was going fine and we were there for about 2 hours. We went home and Joseph fell right to sleep on the couch. It was mid afternoon and he was exhausted. Joseph awoke about 2 hours later in what I can only describe as a "sleep walk" state. His eyes were open but he was completely unaware of his surroundings. Than he began screaming at the top of his lungs. Just a blood curdling scream. We rushed to him to try and calm him but he just screamed more. His pupils were the size of saucers and he didnt even appear to know where he was or who we were. He just kept screaming his little body just trembling and than he laid down and was quiet, asleep again. Five minutes of sleep would pass and this cycle would start all over. I called the hospital not knowing what to do. They were not much help over the phone needless to say. I was scared I had no idea what was going on with my son. Somehow Paul and I managed to get Joseph into our car. Paul sat in back with Joey and I drove about 100 miles an hour back to ER. This behavior continued while in the ER. No one could explain to us what was happening. I was worried Joseph was having another psychotic episode. After 4 hours Joseph kinda snapped out of this state and was calm finally falling asleep. He was readmitted for observation. It was determined Joseph had extreme medication sensitivity in combination with heat and sunlight. You can imagine how well this worked in AZ when the doctor explained if it was over 90 degrees Joseph would not be able to have extended time outside. Joseph's GAF at discharge 45.

Joseph returned home but we soon learned this would become a pattern. Joseph had a major meltdown and became dangerously violent one day believing everyone was trying to poison him. Joseph was admitted for the third time in less than 3 months. Medications continued to be adjusted with slow improvements until Joseph had a severe dystonic reaction. What that means is that Joseph woke one day unable to move, he was paralyzed and his arms were contracted and contorted. The hospital had to call a rapid response team and administer IM injects of benadryl. The dystonic reaction was reversed however Joseph will have residual hand tremors for the rest of his life from this. This extreme sensitivity threw a wrench into treatment with Joseph. At that time Joseph was taking the "typical" medications for stabilization and now had to medication regulated in a different manner. Joseph's GAF at time of discharge 38.

For those of you still reading and wonder what a GAF is that I keep referring to let me explain...(Wikipedia)

The Global Assessment of Functioning (GAF) is a numeric scale (0 through 100) used by mental health clinicians and physicians to subjectively rate the social, occupational, and psychological functioning of adults, e.g., how well or adaptively one is meeting various problems-in-living. The scale is presented and described in the DSM-IV-TR on page 34. The score is often given as a range, as outlined below:

91 - 100 No symptoms. Superior functioning in a wide range of activities, life's problems never seem to get out of hand, is sought out by others because of his or her many positive qualities.

81 - 90 Absent or minimal symptoms (e.g., mild anxiety before an exam), good functioning in all areas, interested and involved in a wide range of activities, socially effective, generally satisfied with life, no more than everyday problems or concerns (e.g., an occasional argument with family members).

71 - 80 If symptoms are present, they are transient and expectable reactions to psychosocial stressors (e.g., difficulty concentrating after family argument); no more than slight impairment in social, occupational, or school functioning (e.g., temporarily falling behind in schoolwork).

61 - 70 Some mild symptoms (e.g., depressed mood and mild insomnia) OR some difficulty in social, occupational, or school functioning (e.g., occasional truancy, or theft within the household), but generally functioning pretty well, has some meaningful interpersonal relationships.

51 - 60 Moderate symptoms (e.g., flat affect and circumstantial speech, occasional panic attacks) OR moderate difficulty in social, occupational, or school functioning (e.g., few friends, conflicts with peers or co-workers).

41 - 50 Serious symptoms (e.g., suicidal ideation, severe obsessional rituals, frequent shoplifting) OR any serious impairment in social, occupational, or school functioning (e.g., no friends, unable to keep a job).

31 - 40 Some impairment in reality testing or communication (e.g., speech is at times illogical, obscure, or irrelevant) OR major impairment in several areas, such as work or school, family relations, judgment, thinking, or mood (e.g., depressed man avoids friends, neglects family, and is unable to work; child frequently beats up younger children, is defiant at home, and is failing at school).

21 - 30 Behavior is considerably influenced by delusions or hallucinations OR serious impairment, in communication or judgment (e.g., sometimes incoherent, acts grossly inappropriately, suicidal preoccupation) OR inability to function in almost all areas (e.g., stays in bed all day, no job, home, or friends)

11 - 20 Some danger of hurting self or others (e.g., suicide attempts without clear expectation of death; frequently violent; manic excitement) OR occasionally fails to maintain minimal personal hygiene (e.g., smears feces) OR gross impairment in communication (e.g., largely incoherent or mute).

1 - 10 Persistent danger of severely hurting self or others (e.g., recurrent violence) OR persistent inability to maintain minimal personal hygiene OR serious suicidal act with clear expectation of death.

So as you can see Josephs social and emotional functioning is not very good. So how can they discharge him home might you ask. Two words and in my opinion the two most hated words in the English vocabulary; Medical necessity. What does that mean? Well its your private insurances way of saying we aren't going to continue to pay for a stay. Needless to say in all of Joseph's hospitalizations his discharge GAF was NEVER above 50.  But that's a whole other blog if you get me started. 

Joseph continued to struggle. He was given every accommodation we could avoid him having to be moved to a self contained classroom. Joseph's behavior was just to difficult to control and he was unable to maintain in a regular classroom setting. We moved him to a self contained classroom and placed him on an IEP. After countless hospitalizations and several medication changed Joseph seemed to stabilize for a period of time. Of course he was taking up to 20 pills a day and his monthly medication costs were $250. But he seemed to be better.