How Could my Son Die from Something Diagnosed but Dismissed by the Drs?

Writing this blog is a giant painful step forward.  I've felt compelled since my son died to become an advocate, but usually feel paralyzed by that feeling.  To this point I've spoken to a few people, made a photo wall on Facebook that begins with info about how my son, Ben, died; sent out some info to FB friends to join the American Heart Association, and contacted someone who had a similar incident with his son.  He wrote a book and has been interviewed about it on TV.  I have gotten my life together, but need to move forward with getting this info out. So here is my next step:


I had an older son who was ADD. When he was 18 & away at college & living w/relatives he began to have delusional episodes and he was hospitalized in a secured facility for 6 weeks. All sorts of DSM diagnoses were made, but they also found that he had a cardiac arrhythmia called Wolf Parkinson White (WPW). We were told that the WPW had nothing to do with his behavior & that we needed to focus on his behavioral symptoms. During the next 5 months he appeared to be improving and then he suddenly died in his sleep from sudden cardiac death. Upon further research, I have found that WPW can cause delusional behavior. I recall the torture my son went through at the behavioral hospital under lock down. Oh, if only I could put my arms around him now!   He was admitted to the hospital in July 2006 and died January 2007.


The facility that Ben was in was Maricopa’s Integrated Health System (MIHS) Desert Vista Center.  Maricopa Medical Center has a Residency training Program for Psychiatry.  Andrew Parker, DO, Adult Psychiatrist is a Core Faculty member of the Psychiatric Residency program and who we had been interacting with. He called a family meeting to give us an update on my son's condition.  My immediate family lives in MD.  My son had been living with my brother & SIL in AZ waiting to get his required year residency in the state of AZ to attend ASU and had already enrolled for a couple classes due to start at the end of the following month.  My husband and younger son had stayed in MD for this trip to AZ, yet I was not alone.  My son, Ben, did not want to stay in the room for the family meeting and so my brother left the room with him.  I was there with Dr. Parker, my parents, and my SIL.  Dr. Parker asked if we had been informed about WPW and none of us had.  The doctor passed out some handouts.  My 1st question was could WPW be causing my son's delusional behavior.  The Dr. responded it would not.  He explained that the hospital had booked a follow up appointment with a cardiologist and that my son needed to take heart medicine for the rest of his life.  He added that he should refrain from cardio sports.


That was it.  There  was no more talk about WPW.  Everything else centered on his mental health.  The hospital finally discharged him with a diagnosis of Psychosis Not otherwise Specified, which was later downgraded by a psychiatrist to Post Traumatic Stress Disorder.  When discharged from the hospital Ben had stated that he would not take his medicine.  In AZ, the court can order you to do so and put you in a state run health system that assures you not only are getting your meds, but transports you to and from medical appointments, which seemed good at the time. However, due to the fact that he had reached the age of 18 coupled with HIPAA, it was virtually impossible to get information about his medical care.


During this time period I tried to convince him to move back to MD.  My brother and his wife were newly weds; it was a lot for them to handle and they were purchasing their first home.  Instead, Ben opted to move to CA, which is where we had lived for the 1st 10 years of his life.  My parents had invited him.  My father had been recovering from hip surgery & they seemed happy to be helping each other.  So in the fall of 2006 my father went to AZ and helped Ben to move to his home in CA.


My parents helped Ben find medical practitioners there and were having a bit of a hard time finding a cardiologist for him, as most were interested in seeing geriatric patients and not an 18 year old.  My mother continually asked Ben if he was taking his heart meds & Ben informed her that among the several meds he'd been given there were none for his heart.


OK, now to cut to the chase.  On the evening of Jan. 2, 2007, Ben had not felt well and gone to bed early and he did not awake the next morning.  As I stated before, the medical examiners found the cause of death to be Sudden Cardiac Death from WPW.


Since then I pulled back out the papers on WPW that Dr. Andrew Parker gave us at the hospital.  The 1st page is not in layman's terms.  I recall staring at it several times while Ben had been ill and just not quite grasping it, but since I trusted the Dr. as he was not only my son's Dr. but Core Faculty, I felt that the symptoms he went into the hospital must have had nothing to do with WPW.  There were 2 pages stapled together.  The staple is in the top upper left hand side of the page almost an inch from the edges, making it difficult to read what is on the top of the 2nd page.  Since I had disregarded WPW as anything more than something like watching your salt in take when your blood pressure gets high & had been so focused on my son's mental health, I had never ventured to glance at page 2.


Now that my son had died from WPW, I did look at page 2 wrestling with the staple.  There it states "Patients may present complaining of dyspnea, palpitations, chest pain or altered mental status secondary to decreased cerebral perfusion."  Still not layman's terms so highlighted and looked up "altered mental status" and "cerebral perfusion".


Altered mental status - per Wikipedia  describes induced changes in one's mental state, almost always temporary. A synonymous phrase is "altered states of awareness".  A few clicks later and I found this may include both delusions and hallucinations, which described my son's behavior.  Then looking up cerebral perfusion I found that it has to do with the pressure of blood flow to the brain.  During a stroke, this pressure drops and most of us are aware of the symptoms that strokes can result in.  However, during a cardiac arrhythmia associated with WPW the heart rate increases in excess of 150 beats per minute, which can be noticeable by doing an EKG, but not necessarily by taking one's pulse.  The flow to the brain is increased (the opposite of a stroke), which can cause the altered state of awareness/delusions and hallucinations.


I know that WPW is a rare condition, but the Core Psychiatric Faculty member, Dr. Parker, gave me the literature on it.  On the top of the 2nd page it clearly relates his behavioral incidents to the flow of blood to his brain caused by WPW.  SO WHY WHEN I ASKED IF WPW HAD ANYTHING TO DO WITH HIS MENTAL HEALTH WAS I TOLD "NO"??  


OK, that is enough for now.  I pulled out, the papers given to me at the hospital, the medical examiner's report, in with it all was my eulogy.  I have to stop now, but I think my goal in all of this is to make the psychiatric community of the relationship between cardiac events & mental behavior.  Please leave comments and questions.