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My Nephew and his Brain, Part 4 – Their Life Today

Karen Flummerfelt, MS — Thu, 18 Mar 2010 12:00:54 +0000

Continued from Part 3. After the surgery we were hopeful, that with a few limitations on his left side, my nephew would have a fairly normal life. Unfortunately, this was not to be. The faulty electrical impulses that had caused his seizures had migrated to the left lobe and a few days after surgery the seizures returned. It was true that they were milder than they had been before; he no longer stopped breathing when he had them, so some good had definitely come out of his surgery experience. They weren’t gone, however, so he spent another month in the hospital as the doctors tried a staggering amount of drug cocktails on him trying to figure out the best combination for controlling his seizures. None of them worked perfectly, though, so even today at the age of seven, he still has multiple seizures a day.

Under that kind of duress, his brain hasn’t been able to develop and he is pretty much an infant in a little boy’s body. He can’t walk or talk, and he has myriad medical problems due to his developmental difficulties. He has a problem with coughing, so mucus builds up in his lungs and he has been hospitalized many times for pneumonia. He has had hydrocephalus and now has a shunt that moves cerebral-spinal fluid from his head into his digestive tract. Because he has trouble swallowing, he is fed through a tube with a liquid diet and his digestive troubles have landed him in the hospital at least twice. He also has more doctors and specialists than an HMO, and his daily medication regimen keeps his local pharmacy in business.

But, in spite of everything, he has the most beautiful smile in the whole wide world, and even though he is limited in how much can tell us, that smile tells us when he is having fun and enjoying life. We try to do everything we can to coax out that smile, and we have found that adventures with his family can make it appear faster than anything. So, my nephew has been to Walt Disney World, Canada, the Bahamas, Mexico, the Grand Canyon, and just this last summer, Australia, in addition to his numerous trips all over the country to visit relatives. And, it is our sincere hope that we will be able to have many, many more adventures with him for the rest of his life because this kid is truly one of a kind.

Editor’s note: this is the fourth and last part of a series offered by Flummerfelt. Read parts one, two, and three.

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My Nephew and his Brain, Part 3 – Try to Work Out their Troubles

Karen Flummerfelt, MS — Wed, 17 Mar 2010 12:00:39 +0000

Continued from Part 2. After we had been transferred to the large university hospital, the doctors decided to delve more deeply into the specifics of my nephew’s brain malformation. The MRIs had told us some things, but not everything, so they scheduled him for a Positron Emission Tomograph, commonly known as a PET-scan. A PET-scan uses radioactivity coupled with a biologically-active molecule and after injection, the biological molecule congregates in the area of interest, in our case, my nephew’s brain. The radioactivity attached to the biological molecule then starts letting its extra neutrons go in a process called decay. This decay, through a very complicated process, is read by the PET scanner and brain activity can be assessed. What this very comprehensive scan told the doctors and subsequently us was that the right side of my nephew’s brain couldn’t send electrical signals properly and this aberrant electrical activity was causing the seizures. Unfortunately, the only way to stop the activity was to take out whatever in the right hemisphere was giving the wonky signals, so my nephew, at the age of four months, was scheduled for brain surgery.

The surgery was on a Tuesday, and all the family we could gather waited with us in the hospital waiting room while the twelve-hour surgery progressed. We received periodic updates from the operating room telling us he was doing well, and after a very-long day, the surgeon came out and told us that it had been successful; they had removed the malformed part of his brain. The unexpected part, however, was that the malformation had not been restricted to a discreet part of the right hemisphere, so instead of taking a section, they ultimately decided to take out the entire hemisphere. But, the doctors were hopeful that this would curtail the seizures because the left side of the brain appeared normal, and my nephew was resting comfortably in the pediatric intensive car unit upstairs, so we were thankful.

After the surgery, they thoroughly examined the hemisphere they had taken out, and at last, we knew why the malformation had happened. In my nephew’s case, a non-neuronal cell had not followed the chemical roadmap laid out for it during development and so had ended up in the wrong place, namely the brain, which is supposed to be made up exclusively of neurological tissue. It had started dividing and after a time had developed a cyst in the right hemisphere, which in turn forced the neuronal tissue in the brain to develop around it. This cyst prevented the normal electrical patterns and had caused the seizures. Because this cyst had apparently developed early in my nephew’s brain development, the whole hemisphere had formed around it and had been disrupted. But now, the hemisphere was gone, and we looked to a new future for my nephew.

Editor’s note: this the third of a four-part series offered by Flummerfelt. Tomorrow, we will reveal the part four. Read parts one and two.

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My Nephew and his Brain, Part 2 – Revealed to be Complicated

Karen Flummerfelt, MS — Tue, 16 Mar 2010 12:00:26 +0000

Continued from Part 1. After we had arrived at the new hospital and my nephew had been placed into the Pediatric ICU (PICU), the doctors started running more tests, and in conjunction with what the ER doctor had found out, my nephew was diagnosed with a seizure disorder or, as it is more commonly known, epilepsy. Epilepsy is defined as a “brain disorder characterized predominantly by recurrent and unpredictable interruptions of normal brain function” and in most cases, this interruption is caused by either an over-excitation or under-excitation of the neurons in the brain. After electroencephalography (EEG) was performed and analyzed, this aberrant electrical brain activity was what appeared to be happening to my nephew, so the doctors began to prescribe medications that are typically given to children with seizure disorders. The problem with my nephew, however, was that from the MRI that had been performed on him at this point, it was evident that there was significant brain malformation in his right hemisphere, and these medications would only be treating the symptoms and not the cause. In spite of this, though, the medications met with some success in controlling the seizures, and after a few days to make sure that my four-month old nephew was receiving the proper dose for his small self and was tolerating his medications, he was sent home.

Things went well for a couple of days, but then the seizures returned, and this time, more alarmingly, they intensified and caused my nephew to stop breathing. My sister and her husband rushed him back to the hospital, and after another few days in the hospital, it was decided that due to his seizure activity and the underlying brain malformation that my nephew needed more sophisticated and specialized care than he could receive at the hospital he was currently admitted to. After some calling around to various area hospitals and medical centers, the doctors finally found a place for him at a local university hospital that fortunately for us and my nephew is one of the most-highly ranked hospitals in the nation for the quality of its care and the quality of its doctors. He was transferred to this hospital, and in doing so gained several world-class pediatric neurologists who would now be focused on trying to alleviate his seizure condition caused by his complicated brain. We were very hopeful, and now it was up to these doctors to help my nephew.

Editor’s note: this the second of a four-part series offered by Flummerfelt. For the remainder of this week, each day we will reveal parts three and four. Read part one.

Reference

Fisher RS, van Emde Boas W, Blume W, Elger C, Genton P, Lee P, & Engel J Jr (2005). Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia, 46 (4), 470-2 PMID: 15816939

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My Nephew and his Brain, Part 1 – Introduction

Karen Flummerfelt, MS — Mon, 15 Mar 2010 12:00:34 +0000

As a person who believes in full disclosure, I feel that I should say from the outset that I am not a neurologist. I am a microbiologist, and generally speaking, even though I am a science-type of person, I was never very interested in neurology. All that changed, however, when my nephew was born. Well, it didn’t happen exactly the moment he was born; it took a while for us to learn how unique he really was. I guess it is probably best if I start at the beginning.

My nephew was born in August of 2002, and when he was born, he seemed like a normal, healthy baby boy. He did all of the things that newborns are supposed to do like eat, sleep, dirty diapers and keep his parents up all night, and as a couple of months progressed, he started hitting all of his baby milestones like having a little bit of head control and smiling. By the time he was three months, however, he had started having these quirky little movements every now and then, which to us looked like he was constantly being startled by things. My sister and her husband took him to his pediatrician, but she said they were “normal baby movements” and that we shouldn’t worry. We tried to take her advice, but the strange movements continued, and my sister grew concerned enough to take him to the local emergency room.

It was at this emergency room that we started to discover that my nephew wasn’t quite as healthy as we had supposed him to be. The emergency room doctor was very, very good, and he recognized right away that the supposed “normal baby movements” were in fact not normal, and he further surmised that they were neurologically-based. He ordered a CAT-scan and a spinal tap, and after the results came in, he told us the news, or as much as he could tell us based on the limited tests that he had done. From the CAT-scan, it was clear to him that there was something very wrong with my nephew’s brain, and my nephew needed to be admitted to the hospital. The hospital we were at didn’t have a pediatric ward, so the ER doctor arranged for us to be transferred to a nearby hospital for further testing. And it was after we had been transferred and more tests had been run that we found out we had a one-in-a-million baby and it was going to take a lot of doctors and medical care to keep him alive.

Editor’s note: this the first of a four-part series offered by Flummerfelt. For the remainder of this week, each day we will reveal parts two, three, and four.

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Living with Traumatic Brain Injury

Nirupama Shankar, PT, MHS — Mon, 14 Jul 2008 17:37:13 +0000

A lady (let’s call her Carla) is driving down a street — it’s 10:00 pm on a Friday night. She thinks about her kids in bed, makes a mental note to check in on them before she goes to bed. She wonders what her boss has in store for her at the 8:00 a.m. meeting that was scheduled a week ago. Suddenly there is a blinding flash of light; a deafening crash, and her world goes black. Sound like a scene from a movie? I wish it were. According to the CDC, 1.4 million people in the USA sustain a traumatic brain injury (TBI) annually; 20% of these are caused by motor vehicle accidents (MVA). Fifty thousand of these traumatic brain injuries result in death each year. Carla might never be able to communicate with her children meaningfully. She certainly will not be able to get back to her work any time soon (if ever). Her social network will be disrupted; her schedule will be a series of medical appointments and consultations.

Unlike a fracture or an elective surgery, the ordeal does not end after the medical procedures are through. When a person sustains a TBI — in most cases families face some of their toughest challenges after the immediate palliative procedures are complete. The patient goes through acute care, an inpatient rehabilitation program, and then may be discharged to their home. In some cases, if they are medically unstable they are required to stay at post-acute settings and also receive outpatient rehabilitation. Some states in the USA also offer long-term care centers for those patients who might never be able to function safely and independently in their homes. These centers usually become permanent “homes” for these patients. Caregivers are often torn between running their homes and visiting their loved one; living their own life and accompanying their loved one to various medical appointments.

The residual physical impairments are only one aspect of the injury. Patients with TBI are prone to emotional disturbances, outbursts and attacks of a myriad of emotions ranging from depression to frustration to extreme rage. Anson and Ponsford studied 33 individuals with brain injury, and found that 51% of them had clinical levels of depression and anxiety (based on their scores on various scales that were administered. They also elaborated upon two styles of coping — non-productive coping (avoidance, self-blame, resorting to drug and alcohol use, etc) and adaptive coping (accepting the problem, and taking proactive steps, incorporating humor and enjoyable activities, etc). The results of their research study suggested that there was a statistically significant correlation between the type of coping mechanism used and ability to overcome the emotional problems.

As a physical therapist, I have spent more than 10 hours a week with one patient and their families. This intense, one-on-one time gave me a glimpse into their current lives and a hint of how things were before this terrible episode dictated every aspect of their lives. I worked with moms who did not recognize their children, with professors who had completely lost the function of speech and teenage boys who would spend all of their adult lives confined to a wheelchair. I saw families attend session after session, hoping to find a fragment of the person they once knew and loved.

For families, living with someone they don’t recognize any more, being pushed suddenly into the role of a caregiver, and dealing with all the emotional ups and downs of the patient takes a physical and emotional toll. A recent literature review study that was published in the Journal of Clinical Nursing indicated that a family member’s cognitive, behavioral and psychological impairments of are greater stressors to the family than their physical disabilities after a TBI. The same study also suggested that partners of people with a TBI scored higher on stress indicator scales than parents; for the most part, women appeared to be more stressed than men.

For most people who have not been through these experiences, this information may be unfamiliar, and difficult to relate to. But the only way that people with TBI may be reintegrated into the community is increasing awareness about this complex disease. Understanding the intricate complexities in the lives of people living with brain injury will hopefully will make us more accepting of people. We can then do our part to assist patients reintegrate smoothly into the community. TBI is a disease that can be prevented by increasing awareness in the community and education with safety tips. The National Institute of Health and the Brain Injury Association are excellent resources for the entire spectrum of Brain Injury.

References

Verhaeghe, S., Defloor, T., Grypdonck, M. (2005). Stress and coping among families of patients with traumatic brain injury: a review of the literature. Journal of Clinical Nursing, 14(8), 1004-1012. DOI: 10.1111/j.1365-2702.2005.01126.x

Godfrey, H.P., Knight, R.G., Partridge, F.M. (1996). Emotional Adjustment Following Traumatic Brain Injury: A Stress- Appraisal-Coping Formulation. Journal of Head Trauma Rehabilitation, 11(6), 29-40. DOI: 10.1097/00001199-199612000-00006

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Brian Thompson’s Struggle with ADHD

Shaheen E Lakhan, MD, PhD, MEd, MS — Fri, 15 Dec 2006 21:09:47 +0000

I am 48 years old and one of eight children, and born and raised in Baltimore, MD. I have been divorced once and have four children from three marriages. My story is kind of difficult to explain, but I think worth the time. My first marriage was to a woman who had a five-year-old daughter who I adopted. We had two boys during that time and were divorced in 1989. In 1992, I met my current wife Suzanne who was widowed at 29. She was pregnant at the time of her husbandâ€™s death and we now have our youngest son who is 15. We have a great family, and frankly, the highlight of my crazy life.

My earliest recollections of being a child and feeling a little different go all the way back to kindergarten. I remember always needing a lot of attention and being very disruptive. School was like a huge punishment for me that I now know was due to my learning disabilities. Unfortunately, not having the disability diagnosed for so long caused many problems in school and my professional life. I have always been an interrupter and very poor listener. I attended approximately 10 schools before going to high school, which I entered in the 10th grade. Although I graduated, it was at or near the bottom of my class of about 550 kids (all boys). I was an above average athlete and perhaps where I gained my most success as an adolescent. But even playing sports, I always seemed to be in the middle of everything that brought negative attention. I suffer from poor hearing in my left ear, about 90 percent loss, which only made the situation worse. I have always had health related issues; mostly injuries do to sports or just problems in general. I have had between 15 and 20 surgeries over the years for many different things.

In my professional career, the pattern continued. Although I have been somewhat successful, I have had as many as 17 or 18 jobs. There is always a problem with something. I think it has been my desire and need for success and fear of failure that has motivated me all these years. I currently work for myself as a business broker.

Ironically, the turning point in my life, and especially in my professional career, occurred when my son was diagnosed with ADHD at a young age. Part of the evaluation process involved me discussing my sonâ€™s behavior with his teachers and with his doctors, and during these conversations I always felt that we were also describing my behavior. I think people have only started to realize in the last few years that ADHD is not simply a childhood disorder, but that it often continues throughout adulthood. From what Iâ€™ve seen, most adults who have been diagnosed with ADHD later in life, like myself, realized they had the disorder after one of their children was diagnosed, and then they recognized that the same symptoms that had been negatively affecting their child had been negatively affecting them as well for their entire lives.

It can be a little sad to think about how certain things in my life could have been different if I had been diagnosed and treated for ADHD earlier, but I am determined to look forwards and not backwards. I have had excellent help from my doctor, David Goodman, and I see him on a pretty regular basis.

Certainly the biggest difference in my career occurred when I was prescribed Adderall XR for my ADHD symptoms, as the medication has helped me tremendously. Being successful in the consulting business requires a lot of due diligence, strong communication and attention to detail, and medication basically enables me to be more proficient and efficient at getting things done. People with ADHD can become somewhat overwhelmed with tasks, and then get easily sidetracked into distractions. Before I knew I had ADHD, I was constantly making lists and trying to break larger projects into small pieces so that I wouldnâ€™t be jumping all over the place and not actually getting anything done. I was always getting distracted, whether it was from a noise, a new idea, or the phone ringing.

For me, Adderall XR eliminated the distractions, or at least made me less aware of them, and allowed me to focus and concentrate. I have become very proficient at getting tasks accomplished, and now when I start something, I can complete it. I return calls on time, I meet my deadlines, I can work on a project and not stop until it is done. I set out daily, weekly and monthly agendas and am actually able to stick to them.

For the first time in my life, I feel confident that I have a very bright future with my family and business, and it feels good.

– Collected by Janice Miller of RMJ Group, LLC.

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Staying the Course Prescribed for Major Depressive and Bipolar Disorders: A Family’s Journey Thus Far

Patti Wilson-Herndon — Fri, 17 Nov 2006 19:46:42 +0000

I don’t believe there is any road of human experience wrought with more winding, blind-curve, uphill challenge, where chronic illness is concerned, than in traveling the path forced by that of mental health issues relating to a close family member. Perhaps debatable, but certainly not by me — it’s the hardest road. There. I said it.

I am the mother of 24 year old son. A son, who was diagnosed at age 14 with major depressive disorder. And, to add to the ragged, mysterious 10 year tour; the looming, possible diagnosis of bipolar disorder. A diagnosis suspected by a host of mental health care professionals through his subsequent, abnormally turbulent, (understatement) teen years; from in and outpatient addiction counselors, to attending psychologists and psychiatrists. The doctors were hesitant to diagnose him with bipolar unequivocally, due to his young-adult age. But, given his behavioral symptomatology and genetic family history, I think bipolar disorder has likely been a decided, pre-mapped route we are destined to travel as a family.

What does this all mean to a patient, a mother, a family, after ten years of worry and treatment, and more worry and more treatment? Well, we only know for sure what we don’t know. Which is: We don’t know if there will EVER be a “cure”. This known “unknown” is especially prevalent within the parameters of chronic depressive illness. And, for a mother, that’s a particularly bitter pill to swallow. And, is reason in part, for my contention that dealing with this particular mental illness is, in so many ways, more difficult and heart-wrenching than dealing with other chronic illnesses presenting with predominantly physiological symptoms.

As a family that struggles with the resource drain of the “off” briefly, then unpredictably back “on” with a vengeance aftermath of major depressive disorder; we have, out of necessity, come to expect less and less in terms of the support and compassion from some of those in our sphere of influence. This is due to the misguided perspectives pertaining to the behavioral symptomatology that our son’s illness presents. But I report, to a positive effect, we have come to realize a more centered focus of strength and connection within our immediate family as a result of “huddling” together through the years.

Given the vast, varied scope of expansive anatomy concerning neural pathways relating to brain chemistry, biological inheritance factors, brain injury related exigence, synapses wiring, etc., etc., etc; I think it’s not terribly unlike searching the infinite heavens for a pinpoint cluster of stars or galaxy suspected, but undiscovered. The search for the answers as they relate to serving the goal of restored mental health is a, decidedly, daunting journey at times. Yet, the collective neuroscientific community, in many cases under funded with regard to research, AND scores of devoted, often underinsured families, forge on tirelessly. All compelled by primal instinct: That of compassion and concern for another soul. A search for answers driven by the desire that all people deserve to be “who” they were meant to be, unfettered by would be personality “disrupters” altering the very core of what we, as humans, innately recognize as: “who one is”.

Related to that subject, and because I feel especially entitled in this forum with regard to my particular experiences as a mom in support of a son; I will unceasingly continue to bellow this fact: “Depressive disorders can contain symptomatology or “episodes” of absent “life management drive” as well as, seriously “self-destructive” behavioral choices, by the patient. That combined, in some patients, with the propensity to exhibit self-medicating, addictive tendencies — even more so, with lack of the help provided by consistent professional treatment. These repercussions are symptoms of the chronic depressive illness present. Depressive illness symptoms are typically behavioral — BUT ARE NOT CHARACTER ISSUES! There. I said that too.

And so… “What” in the absence of physiological cure to date? As in any other chronic illness where family support is concerned, that’s easily stated: “Love… Love… Love”, of the “unconditional” variety. And, consistent support born of the, “get yourself educated in the facts relating to the “chronic depressive illness” variety”, should you desire to effectively help a family affected. Both varieties, crucial components needed to bridge the sometimes, seemingly black, chasm-like gap that can emotionally, and physically, separate patients with mental illness from family members and other loved ones; as well as, create social disconnect regarding affected families from extended family members, friends and others.

I can manage the misunderstood response to my son’s illness by some family members and friends in a logical frame; easier now for me than it was several years ago. That helps me cope and live in better peace. Still sometimes, but to a lesser degree, that disconnect has been especially painful. Peoples’ ambivalence, and then to the opposite intensity, their rush to character judgment is, quite literally, emotional “assault” rubbed into an already serious wound. I’m convinced the response offered by some friends and family members would be much different if the chronic illness my son suffers were to be say, cancer or multiple sclerosis.

I will continue to do my homework in staying informed on scientific and cognitive therapeutic advances regarding treating chronic depressive illness on behalf of my son’s life, and my family’s health. As a result, I’ve come to understand so much more about the nature of this chronic illness. As far as others are concerned, it’s pretty simple. When people are uneducated with regard to the behavioral symptoms presented by major depressive disorder or bipolar disorder, they tend to “shrink back” in awkward attempt to protect themselves from the discomfort of not knowing what to do in support of the effected patient and family. The behavioral symptomatology result can be, after all, quite unsettling. I get that. But unfortunately, as a family, we continue to experience the disconnect to a larger degree than, I believe, should exist.

So where are we on the map now? Well… constantly moving in the direction of encouraging others in the understanding of the realities of this chronic illness. In this case that happens to be my son’s constant, courageous battle with major depressive disorder.

Until the final destination of “cure” is arrived at, restoring the “hay wiring” effects of the illness, I will look to the advances available that assist with healthy, peaceful travel along the way: Effective medical treatments, in combination with constructive, compassionate, non-judgmental support. This “vehicle” provides, from time to time, a reflective stop along the way that reaffirms the journey’s purpose. We’ve come such a long, long way in support of our son and our family. Are we there yet? We’re as close as we can be…

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Danielle Fisher Comes Out on Top of ADHD

Shaheen E Lakhan, MD, PhD, MEd, MS — Fri, 13 Oct 2006 18:43:05 +0000

Danielle Fisher, a petite, 21-year-old college student from Bow, Washington, made headlines last year when she became the youngest person to conquer “The Seven Summits” – the highest mountain on each of the seven continents. While her drive and passion helped her become one of the best alpine climbers in her age group, Danielle also trounces tradition in another way. Danielle, along with millions of adults in the United States, struggles daily with the symptoms of Attention Deficit Hyperactivity Disorder (ADHD).

Danielle Fisher: In my case, I was never really great at school. I would often daydream during class, and would jump from one activity to another without actually finishing any of them. The teachers told my parents that I was intelligent, but too easily distracted, and of course this had a negative impact on my grades. I actually felt relieved when I was diagnosed with ADHD in the sixth grade. Finally, I knew there was a reason I was having difficulty with activities that my friends could easily complete.

Fortunately, my friends and family were very supportive after I was diagnosed. In fact, my mother had also been diagnosed with ADHD just a few months prior, so she already knew that it is a relatively common disorder, and that it can be treated. Even so, when you have a disorder like ADHD, in my opinion the most important thing is to find a balance between knowing that you need help and making an effort to push through by yourself. In my case, I take Adderall XR daily, which is a medication to help manage ADHD symptoms. I also meet with a professional counselor who helps me organize my schedule and keeps me on track and focused on my goals. But, at the end of the day, I have to take responsibility and make a serious personal effort to focus on my objectives, follow through on tasks I’ve laid out for myself, and basically push through distractions or difficulties that other people without ADHD would not even notice.

I first started climbing with my dad and my climbing mentor Mike Woodmansee. My first climb was in the North Cascades in Washington State, and it was the summer before my sophomore year of high school. That same summer, we also climbed Mount Rainier in Washington and I just basically fell in love with the excitement and challenge of reaching the mountaintop.

When I’m climbing, I feel like I am a totally different person. I become very focused and determined. I forget about the pains of blisters, scrapes and bruises and the fact that I have ADHD. I just keep on going. Since I started climbing, the person I am on the mountain has increasingly become who I am in all aspects of my life, including school and work.

After I succeeded in climbing the seven summits in June of last year, I have been fortunate enough to be able to help raise awareness about ADHD and to emphasize that being diagnosed with this disorder does not mean you have to give up or compromise your goals. I think it is very important to discover what your passions are because when you are enjoying what you are doing or working towards something you are excited about, you will be able to focus on that goal. In fact, in a way, I think I have tackled ADHD as if it were a mountain. Both are always going to be there, but with resolve, determination and a good support network, I can come out on top.

For more information about Danielle, please visit her Web site at www.DanielleFisher.com.

For more information about ADHD, please visit www.ADHDSupport.com.

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A Mother’s Plea – Pediatric Bipolar Disorder

Shaheen E Lakhan, MD, PhD, MEd, MS — Fri, 25 Aug 2006 12:00:34 +0000

I am a mother of a biological son (grown 33 years old) and adopted boy/girl twins (10 years old). I am an R.N. of 30 years still working full time and exhausted human being. My dilemma is as follows:

My adopted 10 year old son has most recently been diagnosed with pediatric bipolar disorder. This of course is after 10 years of a page long full diagnoses on this child. He has been on more medications than a CAD/COPD Renal patient!! I get conflicting statement after statement, article after article and I am exhausted! Have I done worse to this child by trying to believe all the “expert” advice to the point that it is tearing our family unit apart. It is mind boggling that SO MANY diagnoses are intertwined with so many others. No one can seem to draw lines in the sand. I know we call it “practicing medicine” but what if all that practicing causes a young life to go amuck? Currently he is having much trouble in school following directions, staying on task, easily distracted, very smart, sweet soul, exacerbating behavior vs. family/teachers exhausted from diligently working with him to complete tasks from the simple of brushing teeth, reminding him of body cues, ie need to urinate vs. dehydration.. go get something to drink vs. matching colors correctly. He is 10 years old going on 11. He doesn’t act or “feel” like a 10 year old, he is more like a 3 year old in care.

Fact: He was born to a teenage mother (3rd pregnancy, 17 yrs. old at birth) who tested positive for methamphetamines/alcohol/smoking. Term infant, ROM greater than 30 hrs. He was Twin B, respiratory difficulties, NICU x 24 hrs. antibiotic therapy, rallied well placed into temporary foster care along with his twin sister (no complications with her). In and out of foster care first 1 year of life, parents rights terminated. They have been in my heart and life since 1 year of age. Came to me with “attachment disorder, anxiety disorder, ongoing ear infections, staph infection on skin from scratching of lice and fleas in the first year of life. Lived in a “crack house” with a diagnosed narcissistic grandmother, teen mother and unknown adults for first year of life. Adults did not meet male childs needs consistently, nurtured twin girl though. These are the beginning facts:

They both had PE tubes at age 3 after I adopted them and they were taken out of “the system” and placed on my insurance after repeated ear infections. Bottle drinking was discontinued at appx. 16 mo. a very strong self soothing habit on their part. We just did water for months just to self calm them. They were very leary of strangers, especially my boy twin. I have video of him falling to the ground at 15 mo. of age when the DCF driver came to the house to take them to weekly supervised visits with biological parents. I took him to occupational specialists, I did “brushing techniques, proprioceptive exercises, balance theory, audio theory, drug therapy started around 4-5 yrs of age. We have experienced sleep deprivation to audio vs. visual hallucinations vs. emotional meltdowns vs. rage to being able to hug us as parents finally. A total gambut of emotional, physical, mental stress that is totally incomprehensible by most. There has been few normal peaceful days in our lives in the past 10 years. I love my children with all my heart and soul and at this point I am no more encouraged over what is going on physically vs. mentally with my young son.

Fact: He has some kind of “odd temporal lobe misfiring noted time” and again on EEG’s from the age of 6 1/2 to today. My psychiatrist is wondering with the neurologist along with the pediatrician if we have him on the correct recourse of drugs, presently Risperdal and Lamictal. I on the other hand would like to run down the road screaming at this point as they don’t always remember his correct name after treating him for a year and a half. My gut feelings are telling me to taper off everything and try absolutely nothing.

Would 4 months be long enough to detoxify his system of all the drugs?? What about the rebound effects??? What if it’s something as simple as a “milk allergy”?? He loves milk. Insurance groups don’t do testing anymore for allergies. Everyone is just into prescribing drugs. Okay all you physicians, mothers, fathers, grandmothers, grandfathers…..take this to the blog.

Dr. Seus, “What would you do?” Thank you for listening, thank you for your time, thank you for letting me ventilate.

Sincerely,
Ryan’s Mom

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Journal Entry: A Child’s Bipolar Story – “Hopeless”

Shaheen E Lakhan, MD, PhD, MEd, MS — Fri, 28 Jul 2006 12:00:38 +0000

Last night I heard my mom say she wishes maybe, I had cancer or something, instead of what I got is my bipolar. That really made me sad and made me mad! When I finally asked my mom, “why,” she said, “If only you had cancer or lymphoma or something like that. Everyone would understand, everyone would feel sorry… That would be so much easier than bipolar!” She told me I would have a greater chance of being cured and of living, of not dying. She said I’d have fun with all the flowers, balloons, toys, and special snacks! She said important people like rappers and athletes might even help me, might even do fun things for me! And if I shaved my head bald, no one would make fun, they would even say, “that’s cool.” Mom says then, insurance would cover more, and people would maybe even help me with money, if we needed it… Instead, nobody wants to give anything nice or pay any attention to a “bad” kid like me.

I’m just a waste. Is it my fault? My mom’s? My dad’s? But my doctor says I can help myself some. And my family. There are things I can do, to help my BP. So, I don’t feel all that bad. I just need people to care, too. Not just to be “sick” of my “sickness.” I want to be “normal”! I want to be well! I want to be good! I want to try! I will! But, please, please, help me and care for me, too, even if I don’t have cancer!

Author: Anonymous (2002; from the journal of a high school student who functions at the second grade)

Collected By: Ann Hull (former teacher and friend)

Editor: Shaheen Lakhan

Editor’s Note: The following journal entry portrays a child not only suffering from the disabling symptoms of psychopathology, namely bipolar disorder, the child is also facing the harsh and real impact of societal mental health stigmatization (bias, distrust, stereotyping, fear, embarrassment, anger, and/or avoidance). Stigmatization of those inflicted with mental disorders has persisted throughout history. Such ideology has built barriers that discourage people from seeking mental health treatment and, often forgotten though significant, thwart treatment plans for those who courageously seek management. It is especially troubling in children, for they are seen in context to a larger unit (family, peer group, and their larger physical and cultural surroundings). In their age groups, human contact is essential for proper development and stigmas may deprive children of their dignity and full participation in society.

The Surgeon General, Dr. Carmona, addressed mental health in a famed and long-due report that recognizes mental illness and stigmatization as a public health dilemma. He states that that in the past 40 years, stigmas in certain context have intensified despite our improved knowledge of mental illness. He found that programs of advocacy, public education, and contact with persons with mental illness through schools and other societal institutions may reduce stigmas, in addition to active research into psychopathology. Dr. Carmona puts it best, “most importantly, [people] should become far more receptive [that] mental health and mental illness are part of the mainstream of health, and they are a concern for all people”.

Ann Hull is an educator, writer, and researcher with over 25 years of experience. She has encountered bipolar disorder in her personal family setting. Moreover, for more than eight years, Ms. Hull taught children in a special education environment, who had been diagnosed with a number of psychiatric disorders, including bipolar, schizophrenia, autism, and Tourette syndrome.

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Prisoner of the Mind: Living with Depression

Colleen Bridget Farrell — Tue, 25 Jul 2006 12:00:08 +0000

When I was ten, I loved a science-fiction TV show called “The Prisoner.” I was too young to fully understand it, but one chilling part of the story involved a huge black sphere that rolled out of nowhere to pursue the escaping prisoner. It was relentless and horrifying. There was no getting away from it; the prisoner was always consumed. That’s what depression feels like to me, and this summer was the worst episode yet.

For many weeks, I didn’t even realize what was happening. I felt totally drained of energy, but I was used to fatigue; I’ve had AIDS for nearly nine years. But there were other symptoms, too. I ruminated endlessly on my failures-trivial encounters that were painfully embarrassing, pain and weakness that made activities difficult-nearly everything that was wrong in my life I automatically labeled “a failure.” It’s a life-long habit. As the episode wore on-it seemed to swell like a blister-I could barely get out of bed in the morning. But I had to force myself in order to take AIDS medications on time. Otherwise, I might have stayed in bed late into the day.

Clinging to Normality

The diagnosis of AIDS didn’t precipitate a depressive episode. I’ve suffered (and I don’t use the word lightly) with depression or dysthymia since childhood.

Mood disorders ran in my family. My paternal grandfather and uncle were both alcoholics (often a way to self-medicate depression). My paternal grandmother had some kind of breakdown in her sixties. My mother apparently spent most of my 4th year in bed, getting up only in the evenings when my father came home. And the disease spread to the next generation: my older brother has been variously diagnosed with depression and bipolar disorder, and both of my brothers are alcoholics.

I too coped with depression by drinking, beginning at the age of 12. I was a painfully shy and lonely little girl who was full of anger and self-hatred. Alcohol was a wonderful drug for its ability to soothe my over-active nervous system while giving me the energy that depression stole. And for the next 25 years, I “passed” as (relatively) mentally healthy. I still had a terrible temper, but I was mostly enthusiastic, active and productive. I earned excellent grades in school and graduated college with honors. I moved up easily in the corporate world. And yet inside, I always lived in hell.

Strangely, when I found out I had AIDS, it was such a shock that it somehow pushed the depression to a corner of my mind. I’d always been physically healthy-that much I counted on. I’d rarely even been sick with the flu. I’d never injected drugs, and had been married monogamously for 13 years. But suddenly in 1995 I developed an AIDS-related pneumonia-and not just HIV, but AIDS. (I quickly realized I’d contracted the virus from a boyfriend in 1982; my husband remains HIV-negative to this day.)

The diagnosis was such a shock that I thought: “If I’ve been wrong for 13 years about being so healthy, maybe I’ve also been wrong about being a “rotten person.” I felt I was being given a message, that my whole life was somehow a spiritual challenge. And so, like all those death-row inmates who find God, I “became spiritual.”

When Faith Fades

In 1999, I went on permanent disability from my job. Since then, I’ve tried to “make myself useful” by doing volunteer work or selling crafts I make. But over time, activities have become more and more stressful, even overwhelming. This summer I began to think that my health had deteriorated to the point where I really couldn’t do much more than water my garden, put a load of laundry in, or wash the dishes-and by now, even those chores were often beyond my ability. I had constant digestive problems, shakiness, sensitivity to light and sound, obsessive thoughts and ruminations.

My options in life seemed horribly limited, and all I could see was impermanence and futility-not just in my life, but everyone’s. It wasn’t just a “lack of interest” in activities; it was all meaning sucked out of life. I couldn’t think clearly, couldn’t focus. Everything ran together, without definition or order. It was mental chaos, when seeing dust bunnies in a corner could make me heartsick and filled with dread.

Dealing with people was frightening, because I’d become acutely self-conscious. Every time I stuttered or mis-spoke I felt humiliated, and it became a vicious circle: in my discomfort I became more ill at ease, which caused more communication problems, and so on.

I began to avoid going out in the yard, for fear of having to chat with neighbors. Even the idea of calling a plumber filled me with anxiety. And since I was too tired to put on “real” clothes, I wore the same sweatpants and flannel shirt day after day, avoiding go anywhere at all. I became almost completely isolated. Fortunately, my husband and I had developed a habit of going to a movie every Friday night. I could manage that; it was not too frightening, and it was an escape from the blackness that ruled my mind.

Although long-prescribed sleeping medication allowed me to sleep through the night, I was always tired, and suffered from constant lower back pain due to sciatica and muscle wasting. I could have easily slept during the day, but avoided naps because an even deeper malaise would seep into my brain as I slept, and I’d awaken feeling worse than before. What baffled me to no end was how much better I would feel as evening approached: more energy, better mood, less pain.

I thought of death and suicide nearly every day. Frequently on the verge of tears, I often broke down altogether, sobbing uncontrollably. Each morning I woke with intense guilt, despair and fear. My first thoughts of the morning were fearful-and yet almost hopeful-imaginings of when and how I might die. There were times when my spiritual faith faded so far into the background that only my elderly cats kept me from killing myself. I didn’t feel that my husband needed me, and in fact would be relieved of a lot of pain and stress if I were gone for good.

It was an odd emotional roller-coaster that seemed always to point downward. I worried constantly about neglected home repairs and the lack of money we had to fix them. I had little appetite (partly due to the AIDS drugs and the anti-depressant I was taking), and I only ate enough to wash down my many AIDS medications.

For the first few weeks, I was particularly angry. It’s a “character trait” I’ve had all my life-a bad temper, an irritable personality. (I now know that irritable, angry children are often depressed.) And this summer, nothing that came out of my mouth was positive. I hated everything- from TV commercials, to our status-conscious neighbors, to the doctors who couldn’t get to the bottom of all my pain.

Shame and Denial

Not surprisingly, my own denial and lack of information kept me from really understanding I had a mental disease. I’d been told I was depressed (and of course, by the time I was infected with HIV, I had “a good reason” to be). Doctors had prescribed anti-depressants for me since 1996, but none ever explained the disease. It was only this year that I tried to discern when I’ve had “episodes” of depression-to tease out the disease from what I always thought was just my “rotten” personality.

In fact, shame is the real reason it’s taken me nearly 35 years to face this thing. I’ve learned that shame is one of its symptoms, but I still believe depressed people feel shame for more reasons than “distorted thinking.” Maybe “embarrassment” is a better word for it, but mental illness in America is still often ridiculed, if not scorned outright.

Of course, my slowness to come to terms with depression parallels the painfully slow learning curve of the medical system itself. Thirty-five years ago, even the psychiatric profession didn’t know much about it. My father was a psychoanalyst, yet even he did not see (or want to see) the symptoms of depression in his own daughter.

And even my current doctor doesn’t seem to “get” it, although she’s been prescribing antidepressants to me for years (since 50-80% of people with AIDS have depression). Recently she told me of a new study that showed depressed HIV-positive women had higher mortality rates than those who weren’t depressed. To my mind, this conclusion merited “a big ‘duh.’” Yet my doctor said, “But this shows depression is real!”

Understanding Depression

There has been a sea change in America since the sixties, when depression was never discussed in casual conversation. Celebrities have confessed they have the disease. The media has picked up on it, and psychoactive drugs have flooded the market. Now it seems family physicians are prescribing antidepressants for almost every kind of upset.

Much progress has been made, and many lives saved. Depression went from being mysterious and unknown to ubiquitous and almost fashionable. But there’s the rub. Movies like “As Good as it Gets” and TV shows like “Monk” make mental disorders look cute and endearing. Such shows sanitize the problem, smooth out the unpleasant edges, and leave out details so that painful diseases become palatable and even humorous. The reason, I believe, is because the real thing is still somewhat unsavory in our society, which values productivity and conformity above all else.

The problem is that the incidence of depression is growing rapidly-up to 20% of Americans experience it at any one time. And to stop its spread, we have to examine it more closely-and I think the stigma of mental illness prevents us from doing so. Instead, we hold it at arm’s length, as if gazing at it through the wrong end of a telescope.

Recently I read that “everyone knows what it’s like to be depressed.” In other words, depression is something like a long-lasting sad feeling. But sad feelings and a major depressive episode are as similar as a drop of water and the ocean. You simply can’t know the ocean by observing the drop.

The Turning Point

When in July of this year the episode had gotten so bad I was speaking in a monotone and my husband looked like a whipped puppy, I got scared enough to face the shame and admit I had a serious mental disease. I swore to myself that if there were anything I could do to prevent it, I would never go through that again.

Of course, it was very difficult to do anything at first. But slowly, I read a half-dozen self-help books that were, to my astonishment, helpful. I switched anti-depressants. And even though I’d sworn off psychotherapy after a half-dozen ineffective attempts, I tried yet one more therapist (who will, I hope, be my last).

I began to walk in the park, having learned that light and exercise are helpful. I improved my diet. I wrote my thoughts in a journal and renewed my spiritual practice. I’m still not out of the woods, but I have regained a shaky hope.

For me, the sobering reality is that after a lifetime of dysthymia, it appears I’ve begun experiencing major depressive episodes that are worse each time. Statistics show each episode increases the likelihood of a recurrence. I’m working hard on staying well.

By: Colleen Bridget Farrell
Editor: Shaheen Lakhan

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Living with a Brain Disorder: Joy, 31-35, Cancer and Anxiety

Shaheen E Lakhan, MD, PhD, MEd, MS — Mon, 10 Jul 2006 09:00:25 +0000

Interviewee: Joy, age 31-35, from Washington with anxiety and cancer.

I was happily married, life was good wonderful even. My husband left when I found out I had cancer, stating he is gay. I am cancer free now. I have never been diagnosed. Have been treated for anxiety in 2003 used effexor, no therapy

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walking into my house is like walking into a huge trash can that has never been emptied. I tell myself it is ok to clean it .. it will be alright … but can never manage to do it.

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I just cant see beyond today and am scared of tomorrow.

For the full interview, please visit the project page.

The GNIF Brain Blogger Living with a Brain Disorder series of excerpted interviews aims to provide unedited insight into the often mysterious minds of brain disorder patients by publishing interviews and professional commentary with afflicted individuals of mental health and neurological or “brain” disorders (e.g. Alzheimer’s, autism, bipolar disorder, depression, developmental disabilities, Parkinson’s, and schizophrenia). The project will encompass the world spectrum of afflicted individuals to identify socio-geographical etiologies, impact of stigmatization, access of medical and mental health information and treatment options, and other features of health promotion.

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Living with a Brain Disorder: Hua, 16-20, Obsessive-Compulsive Disorder

Shaheen E Lakhan, MD, PhD, MEd, MS — Sun, 18 Jun 2006 12:51:29 +0000

Interviewee: Hua, age 16-20, from China was diagnosed with “Obsessive-Compulsive Disorder. I was diagnosed in May 2004 in China but suffered from it for four years.”

Well, I can write a book to describe everything. I’m an OCD expert. Internet is where i obtained all those infos. Reading Self-help books, joining online OCD communities, read online-articles regarding OCD. I never engage in any therapy.

…
For the full interview, please visit the project page.

The GNIF Brain Blogger Living with a Brain Disorder series of excerpted interviews aims to provide unedited insight into the often mysterious minds of brain disorder patients by publishing interviews and professional commentary with afflicted individuals of mental health and neurological or “brain” disorders (e.g. Alzheimer’s, autism, bipolar disorder, depression, developmental disabilities, Parkinson’s, and schizophrenia). The project will encompass the world spectrum of afflicted individuals to identify socio-geographical etiologies, impact of stigmatization, access of medical and mental health information and treatment options, and other features of health promotion.

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Living with a Brain Disorder: Sophie, 11-15, Generalized Anxiety Disorder & Depression

Shaheen E Lakhan, MD, PhD, MEd, MS — Mon, 05 Jun 2006 17:41:00 +0000

Interviewee: Sophie, age 11-15, from illinois was diagnosed with “Last year in April, I was diagnosed with generalized anxiety disorder and clinical depression at the North Shore Wellness Center”.

Before I was depressed/had anxiety, I was living a full, happy life. I had lots of friends, took dance classes and studied the piano, and was generally a very normal, very happy person.

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Starting in November 2004, I started feeling increasingly depressed and began worrying about absolutely everything. I had trouble sleeping and my schoolwork began to fall behind drastically. I would lock myself in the bathroom and cry for hours, often for no reason. I began scratching and cutting myself to try to ease the mental pain, but it often just made things worse. Finally, my parents sent me to my pediatrician to see what I should do, and she prescribed me Ambien. The sleeping pills helped me sleep, but they also provided me with the temptation to take my own life by overdosing on them. I also saw my school social worker, who reccomended I talk to a therapist outside of school. I went to two therapists, the second of which I am currently seeing every week for talk therapy. I was then referred to a psychiatrist, who I still see bi-monthly (I saw him weekly at first) who diagnosed me with clinical depression and anxiety disorder, along with some panic issues (I had suffered from a few panic attacks). Slowly, I began feeling better with the help of Zoloft, an antidepressant that has helped me greatly, and therapy.

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What I know about clinical depression: Symptoms include insomnia, sleeping too much, changes in appetite, irritability, loss of interest in things that used to be fun, deep sadness. These must occur for over a two week period to be considered depression. I learned about depression from my therapists and from furthur research of my own. Anxiety disorder: Symptoms include constant worrying, irritability, inability to concentrate. I learned about anxiety disorder from my own research on the Internet and from my psychiatrist.

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I cope by surrounding myself with friends and family that I care about, which is very effective, taking Zoloft, and going to therapy sessions with my psychologist. I sometimes still feel depressed or anxious, but I am slowly getting better. I also take dance six times a week and play the piano and do lots of artsy things, which is a good outlet for me.

For the full interview, please visit the project page.

The GNIF Brain Blogger Living with a Brain Disorder series of excerpted interviews aims to provide unedited insight into the often mysterious minds of brain disorder patients by publishing interviews and professional commentary with afflicted individuals of mental health and neurological or “brain” disorders (e.g. Alzheimer’s, autism, bipolar disorder, depression, developmental disabilities, Parkinson’s, and schizophrenia). The project will encompass the world spectrum of afflicted individuals to identify socio-geographical etiologies, impact of stigmatization, access of medical and mental health information and treatment options, and other features of health promotion.

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Living with a Brain Disorder: Richard, 46-50, Depression, Anxiety, Schizoaffective Disorder

Shaheen E Lakhan, MD, PhD, MEd, MS — Sun, 14 May 2006 13:50:00 +0000

Interviewee: Richard, age 46-50, from Maryland was diagnosed with “major depression, anxiety disorder, schizoaffective disorder. 1997. Portland, Oregon”.

I was diagnosed with major depression for engaging in self-mutiliation and having suicidal ideation. I was diagnosed with anxiety disorder because I have great difficulty using public restrooms. I have panic attacks occasionally. I was diagnosed with schizoaffective disorder because I continued to complain about feeling cold even after medical tests indicated everything was okay with my thyroid and other organs. I sometimes have delusions of grandeur. I once thought I was a woman.

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I went undiagnosed for a long period of time. My first suicidal thoughts were in grade school, proabably about age eight. I suffered from severe depression as a teenager, probably starting from the age of 15 and continuing into my early twenties. I first engaged in self-mutilation at the age of 22. Life from 22 to 37 was basically okay. I was first hospitalized with suicidal ideation in 1993. It would be four more years before I had health insurance and would be diagnosed with depression, anxiety disorder and schizoaffective disorder. Psychotherapy, antidepressants, antianxiety medicine and antipsychotic medicine kept me going good until about 2001. then I started to fall apart. Prozac quit working. The antipsychotics had bad side effects and the antianxiety medicine quit working. I was hospitalized twice for self-mutilation and suicidal ideation in the space of about a year. I filed an application for disability after losing a job I worked for ten years. I lost another job in short order. I was heading for homelessness. Fortunately, my application for disability was approved by an administrative law judge in November of 2004. I am back on antidepressants and antianxiety medications that work and I have reduced my antipsychotic medication from ten mg of Zyprexa to one mg of Risperdal. I still have suicidal thoughts, however. I am doing okay right now. I am seeing a doctor more regularly than I have been for the last few years as I qualified for Medicare in June, 2005.

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Not having to work is agreeing with me. Having been released from the stress of having to work to support myself has reduced my stress level and the frequency of my suicidal ideation. It hasn’t eliminated it, altogether. I still get stressed out because I am trying to take care of my wife who is in very poor health. I cope by trying to eat nutritious food and exercising when i can. I have to be careful when i exercise because sometimes it backfires and it makes me worse instead of better. I pray to get better, but I can’t say that is an effective strategy by itself. I need to take my medications daily and eat healthy food. My diet seems to affect my energy level a lot. I sleep more than i would like to. However, I notice when i sleep a lot, i don’t tend to feel nervous during the day.

For the full interview, please visit the project page.

The GNIF Brain Blogger Living with a Brain Disorder series of excerpted interviews aims to provide unedited insight into the often mysterious minds of brain disorder patients by publishing interviews and professional commentary with afflicted individuals of mental health and neurological or “brain” disorders (e.g. Alzheimer’s, autism, bipolar disorder, depression, developmental disabilities, Parkinson’s, and schizophrenia). The project will encompass the world spectrum of afflicted individuals to identify socio-geographical etiologies, impact of stigmatization, access of medical and mental health information and treatment options, and other features of health promotion.

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