Raging fires

Pouring shattering glass

Chaos at every corner

And every eye's blink

This Hell is no more

Smiling faces

Repetitive laughter

Happiness is shown on their cheeks

There is no more anger or sadness in this house

The only thing missing is A. herself

She no longer knows who she is

She no longer knows what to do

She has never been a teenager before

She again is on a journey

 Not alone this time

But yet again it has come to be the time of finding

A.

Update: Changes

Now that I have been taking ketamine for a while, I have had many changes in my life, emotions and myself. I no longer am afraid of being alone; I'm not constantly having my head tell me that death is better than life; I can finally be a teenager a "normal" teenager. Being a normal teenager was something I had pretty much given up on till recently. But now hallelujah!  I , Me, A. B., has a boy friend, I have friends, school isn't a death sentence anymore I can learn things because my head isn't  clouded with images of the teacher turning and stabbing me or other lovely images like that. Anyways I can to the movies with my friends, I can be dropped off at the mall ALONE! Without my worrying her heart to pieces that I'm going to need her in five minutes. Here's a great one I can hold my tongue and not hit or scratch or fight with my sister and with that I calmly let her blow up at me and SHE gets in trouble NOT me! My life has been turned around and given new life. The only thing I have to deal with is learning how to be a teenager and finding out who I really am, which is so much easier than battling something you can't touch ,smell , or well seeing it and hearing it is when it's really bad bud you get the point, it sucks.  SO basically I'm a whole new me or what is really meant to be if I was given the genes for bipolar. Yup, Ketamine brings the best kinds of change it gives you the choice and the weapons to fight to be well...you.

A new year; A new A..

I am still amazed by how much she is learning. Yesterday A. experienced the death of a horse that she loves. She was there when he died. When I picked her up I was expecting that monster with-in her; rage. Years of experience have programmed me for outburst that did not come. She hugged me, began to cry, and described how awful she felt, how horrible it was, and how sorry she felt for the owner. At one point she exclaimed "I do not know what is wrong with me, all I can do is cry." So  she cried, and we held hands in the car. A. usually does not want to be touched when she is upset, so I felt holding hands was very new. When we stopped in the driveway, she leaned into me and I hugged her. When she got out of the car, her sister hugged her. After a hot shower and lunch she again asked "Why am I so..crying...I don't know...?" I told her this feeling is sad. When we are sad, we cry. She smirked and said "Really? Yuck, I'm not used to sad, this sucks." Then she laughed and hugged me again. Even her sister. K., remarked at how different it was to see A. sad, crying without anger or resentment or blame. Today she woke up feeling better, acknowledged that yesterday was a hard day, but that K. had helped her feel a lot better. Amazing.

Another first in our new life is being a teen. A. is 15 years old now and goes out with friends, and her boyfriend. We talk openly about what is appropriate and what is not. She is wondering about her someday career, college, thinking about the summer, volunteering...this is all new to her. Her life is no longer ruled by her extreme emotions.

 Along with this new outlook came a painful revelation. A. was talking about her past. She was describing herself when she was 10 and 11 at the barn she rode at. She was quite sure she was a great rider, and the "one the owner looked to" to care for the horses. Her recall of her abilities and her impact at the barn were completely skewed. Part of her frustration was that she did not know why she could not have that same confidence again. I had to explain to her that she was manic a large part of those years, and her grandiose image of herself was simply untrue. How she recalled things was not the way things happened.  I expected her to be upset, or angry, but instead she laughed, and thanked me for telling her. She said it made her feel better because she felt like she was trying to live up to something that she could no longer achieve. Now she knew her memories were not accurate and she was relieved.

And so we continue or journey of gratitude having ketamine allow A. to grow and mature, and find out who she really is. The fall into the winter is usually a time of depression and aggression for A.. It turns our home upside down. My husband and I usually take turns staying home from work with her. There were days she could not get out of bed, and others she raged, incapable of school. We schedule time with family for K. so she gets a break from the chaos. But this fall it was different. October, November, December and now January are passing, the monsters are gone. Our family is happy.

C. B.

His response to this medication has been nothing short of a miracle.  After 12 years of living with anger and violence on a daily basis along with periods of frightening mania, we have finally found some peace in our lives.

Our son was diagnosed with bipolar disorder when he was 4 years old.  From the time he was 2 years old, he experienced rigid and oppositional behaviors, long raging tantrums when he could not get what he wanted, night terrors, flight or fight behaviors, difficulties waking in the morning, attention and learning difficulties, and problems relating to peers.  Over the course of 12 years we consulted professionals all over the country, attended many therapy sessions, and tried dozens of medications.  Most of the medications had little to no effect on his behaviors; some contributed to mania and eventually to a hospitalization.

Our son and our family have experienced a lot of very difficult and painful years which took their toll on all of us.  We had all but given up hope that there would ever be peace in our home and in our lives or that our son could feel hopeful about his own future.

Since he started taking ketamine, he has been able to remain in school, form peer relationships for the first time in his life, and remain relatively calm when he becomes anxious or upset.

Due to the many years of trauma I experienced living around violence and always walking on egg shells, I still worry about how he will respond if we say no to something he wants.   I still freeze when the phone rings and it is the school calling or feel frightened to wake him up in the morning.  On each occasion that he becomes upset about something, I am waiting for the storm.  What I have found is that he is able to self regulate, get over his anger much more quickly, talk about how he is feeling, and offer tremendous insight into himself and his life.  He has said to me on more than one occasion, “Mom, don’t do this for me or buy this for me because you are afraid I’ll lose control.  I’ll be okay.”

I am immensely grateful for the way ketamine has changed our lives; for the peace in our home and the chance to rebuild our lives and our relationships.  I now have hope for my son’s future.

L.S.

I'm writing with an update on Josh.  Pre-ketamine, January would usually begin his steady downward spiral, which would sometimes end up in hospitalization by spring.  Last January, Josh was barely able to go to school, melted down many times a day and could not tolerate any group activity.  He would frustrate by imagined competition and perceived a power struggle with almost anyone that he interacted with.  Anything said to him was at risk of misinterpretation.  Even the simplest statement could be interpreted as “yelling”, when he was simply being asked to do something (i.e. put something away or move on to a new activity).  To avoid conflict, it was necessary for those interacting with him to act as if it was them that made the mistake and not him that did something incorrectly.  Additionally, he was suffering from severe speech and language deficits and slow processing of information.  He required very extended amounts of time to gather his thoughts and express himself.  The hardest part of all this was that Josh was very aware of his disability, since he is a very intelligent and perceptive boy.  Still by last January, and  11 years old at the time, Josh was still not able to read or write.  He would sabotage his work when he thought he was going to be wrong - ripping up his paper, drawing on tables, scratching himself when angered, causing his nose to bleed, and, on occasion, attempting to push down furniture.  Home life, as you can imagine, was no better.

This January, now on ketamine since July, the old Josh is unrecognizable.  He is on home-based, one-to-one school instruction in order to start to catch up on academics.  He trusts his tutor enough to read out loud for the first time.  He appears to be up to the second grade level.  Josh is off risperdone and half way off Geodon, leaving only lithium and propanolol.  As a result, his processing is quickening, and he's able to communicate more easily and fluidly.  Most telling of his progress is that Josh has not melted down in months.

We are able to speak freely and comfortably with him without him feeling criticized.  He can manage delays, smiles easily and is a delight to be around.  Our conversations are comfortable and he is able to share how he feels.  Just Friday, we heard from his tutor that they had the first conflict in a while.  Rather than go into a rage, Jesse listened to feedback from his tutor and apologized.  This is the first apology we have ever heard of him making on his own.

Jesse still has a long way to go, but we are now confident for the first time in his life that his future holds promise and we are excited about where this new path will lead. 

Nathan began the ketamine treatment in September of 2011.  It has been 4 months and although we know we still have tweaking to do, we have seen changes in our son that we had given up hope of ever seeing.  Nathan’s fears were debilitating.  He would not move within our home without someone with him.  He would not use a bathroom without someone standing in the doorway to watch his back.  He began sleeping on our bedroom floor at the age of 3 due to extreme fear of being alone.  It has been 7 years that he has slept on our bedroom floor.  Nathan has never been able to enjoy a family gathering as any large number of people made him anxious.  He has never had friends as he fears that they would touch his things or disrupt the order he has created for himself.  Nathan couldn’t look people in the eye.

After starting the ketamine regime we saw small changes on and off in the beginning.  For us, the ketamine was not something that produced night and day results immediately, which was discouraging at times.  But after about 3 months we began to see the real effects.  Nathan began using the bathroom alone without requesting help.  He would go from one room to another to get a toy and did not ask for us to accompany him.  These were things that he could have never done before.  He began completing his shower on his own without help from us (this is something he was always nervous about because of water getting on in his face).  This past Christmas, Nathan was able to enjoy 25 family members at our home.  He played a video game with his cousin.  He shared his toys.  For the first time in his life he was able to relax and enjoy Christmas.

On January 13, 2012, one day before his 10^th birthday, Nathan moved from our bedroom downstairs into his own room upstairs by his own request.  It has been one full week today that he has slept in his own room and he is so proud of himself.   While we know we are not quite “there” yet with his dose of ketamine, we know we are close and we have seen a light at the end of a tunnel that we thought would forever be dark.

Notice I said “Was.” I now take ketamine and am no longer frightened by such simple tasks as getting on a subway. I now can go into New York City by myself and walk around, enjoy a beautiful day, see a movie only playing in Greenwich Village.  I go to work and I am not second guessing myself.  “Oh did I cut that right?” NO!  NO MORE!  NO MORE WORRYING!   I feel like an everyday person in the sense that I’m not always afraid.   I have what I believe the everyday person would deal with, as far as nerves go.  I don’t worry about my family dying.  At some point, everyone dies.  It is time to enjoy the time I have NOW.  Now, I know this might sound like it’s too good to be true, but the fact of the matter is ketamine is real.  It is here and it has drastically changed what was a miserable life, into a happy one.  Do I still get mad?  Yeah, but don’t we all?  I get mad, but I don’t throw things.  I don’t get into fights.   I get “normal” person angry… whatever “normal” is.  I hope people take the time to sit and read this because Kktamine can save your life.

All My Best!

And may the suffering from this illness end.

-George McNulty,  age 21

When Johnny was born the nurses in the hospital appropriately nicknamed him “The Screamer”. Johnny continued to scream all day and night until the end of his second year; when he finally slept six hours without a tantrum or a night terror for the first time. Johnny would fight to get dressed, fight to stay dressed, fight to be held and fight to be left alone. We would spend hours trying to console him and took daily car rides in hope of a small nap to offer us all a moment’s relief. Naptime was when he practiced rocking his crib clear across his room, in a fit of rage. He was afraid to be alone even in the daylight and terrified of the night.  It was impossible to leave him with a babysitter and almost impossible for his parents to maintain composure alone with him. As time progressed, his newer nickname became “Johnny Rotten”; it was our sleep-deprived way of using humor to maintain our sanity. That same year we found ourselves at Yale begging for help from the most sought after physicians. How could a child this young be so difficult, act so threatened? As the night terrors continued so did the violent episodes. His tantrums lasted for hours and were accompanied with biting, scratching and throwing of objects.  He would attack his family members regularly and fight to be restrained. He was able to maneuver himself out of a car seat, climb twenty-foot trees, escape out of second story windows and even try to jump out of moving vehicles to obtain safety from imagined threats. At age five he was making small weapons with coat hangers in an effort to protect himself from the intruders that haunted him in the night. He would walk the hallways of our home with his back against the wall, afraid to step forward or turn a corner.  He padded his body with pillows and covered his head with a hood; to him even his family was a threat. He was crippled with fear, separation anxiety and had few friends. He missed social clues and inappropriately confused friendly glances his way as suspicious glares. Attending school was a battle that complicated his condition. After many attempts to dart from the vehicle and hide in the school parking lot, we were forced to hire an occupational therapists that would drive him and coax him into the classroom building. With a diagnosed executive function deficit, processing delay, dyslexia and ADHD, we immersed ourselves with all the best educational resources.  We found ourselves traveling quite frequently, visiting neuropsychologists, educational consultants and learning specialists. Although Johnny was the most beautiful child in the neighborhood, his face was always flushed, his hands and feet hot and swollen and an agitated disposition surrounded him.

 At the age of nine he was admitted to a psychiatric hospital for a three-day assessment, where he regretfully stayed for three weeks; only to witness more violence and was discharged without a diagnosis. On the new medications he was overweight, over medicated, overtly agitated and miserable.  During the next few years we continued to hurdle hospitals, dozens of specialized physicians, therapies and unconventional modalities through numerous diagnoses’ that cannot be pronounced.  My memories are stored in the books on a shelf written on just about every childhood illness and learning difference. Although he was born to an average family he was in no way average, he confounded even the best of doctors.  The rages and physical attacks escalated.  And the master bathroom with two locked doors became a safety zone for his brothers. Without hope and desperate for a respite we looked to place him outside of the home. After researching residential treatment facilities over many tears and much anxiety, the first unforgettable phone call came in.

A pediatric psychiatrist two states away had heard of Johnny’s condition through a mutual friend; she wanted to help. She introduced us to the last book we would ever have to read “The Bipolar Child” by Demitri and Janice Papolos and connected us with a specialist in Boston.  We released the consultant for residential placement and with an almost immediate diagnosis of Early Onset Bipolar Disorder; Johnny began a trial of Lithium, Zyprexa, Klonopin and mega amounts of fish oil. In ten days I remember him asking, “Is this what it feels like to be normal”? Johnny now age eleven, finally had the right diagnosis and was on his way with the appropriate drug classifications. That fall with a good IEP and an aid at his side, he was able to attend school in a self-contained classroom for almost a full day. However, there were still days when his occupational therapist reported that his frequent anxiety related trips to the boy’s room to splash cold water on his reddened face and hands, had not subsided.  Life was not perfect the monsters would occasionally find their way back to haunt his brain, harness his anger and fuel of fire of fear. But we remained grateful for the down times. Johnny astonished us with his perseverance to accept the good with the bad. Of course raising three teenage boys in the same household is a challenge for even the sanest of families, but ours was unique: filled with love, God’s grace and Johnny’s demons.  The meds were tweaked along the way and he graduated to a one-on-one boarding school where he spent most of his high school years. He managed to hide his fears there and cool himself with portable fans that surrounded his bed. With the stellar support of the schools staff, he turned his learning differences into an honor role record. We attended counseling and dealt with Johnny’s bouts of anger only on family weekends. We began mending our broken relationships at home and literally repairing the many holes in our doors and walls.

With an array of academic scaffolding put in place and a good out of state psychiatrist, remarkably, he attended a University.  Unfortunately, not long after, with his newfound independence he had discontinued his meds and began abusing drugs and alcohol. Life as we knew it came to a screeching halt.  Our home was once again an arena of rage but this time with a grown man and his more progressive three-dimensional intruders. His psychosis was running his life and ours. He begged for help and warned us of his danger. Johnny was no longer able to suppress his intense fearful and violent thoughts. For the first time he began to describe their proportion and frequency, they were beyond comprehension. I will never forget the hair-raising read of his journal, it was followed up by a closed-door visit to my bathroom where I purged the images from my gutt. That is where I saw his demons firsthand; they followed him throughout his life. They were demonic, graphic in nature and drew real blood; Johnny’s blood that was dripped onto the pages of his journal.  He had come up with patterns and plans on how to escape a room or building even before entering it, the enemy was everywhere. His elaborate preoccupations had been unrecognizable to us and even to his closest friends. We had only been witnessing the symptoms, not the cause and that cause was certainly grounds for paranoia. The False Evidence Appeared Real, even to me!

We frequently found baseball bats in corners of our house and he was now strapping a nightstick to his leg in the event of an attack.  His room was stocked with pocketknives; I would even find them between his sheets. This is when the cutting and self-inflicting of pain began.  His arms are permanently scared with a dozen burn marks and knife slashes. Johnny was attempting to build up a tolerance to pain in the event he would meet his worst, most threatening perpetrator. He was on high alert!  Physical fights in our home were the norm and delusional outbreaks crippled him.  Even a misinterpreted gesture could send him into a fit of rage smashing things in his wake.  If he was reprimanded for inappropriate behavior he took it as a full out attack and would retaliate threatening his family members with weapons. He would frequently take off in search of a place he could feel safe. We even found him attempting to pitch a tent on the beach in the dead of winter.  Fear stole Johnny’s security and caused us to question ours in his presence. As the heat continued to rise our beautiful boy attempted to end his life. The intrusive thoughts could not be suppressed, so he would end them his own way. Beyond desperate, we found ourselves at a clinic in Washington D.C. where Johnny became a pincushion and a fixture in the scanning room. That is where the second unforgettable phone call came in.

A supportive friend back home had secured us an consultation with Demitri Papolos. After a brief conversation, Dr. Papolos agreed to see Johnny that following week. “Fear of Harm”, a newly identified subtype of pediatric-onset bipolar diorder was now his new and last diagnosis. Intranasal ketamine replaced conventional pharmacology and hope replaced despair and suffering. With only twelve children onboard Johnny became lucky number thirteen. The abuse of drugs and alcohol slowly diminished and the frequent violent episodes became fewer and far between. His rather large physique, built up and maintained with heavy weight lifting, was no longer necessary for protection. He decided to put it to good use and focused his energies and enrolled in a program to become a personal fitness trainer. Despite his extensive learning differences, he miraculously managed to pass the exam the first time with an A.  In twelve short months Johnny is now a professional fitness trainer with all incriminating records of his past dismissed. With a few added meds and ketamine he is sleeping under a warm blanket; his temperature is at last regulated.  He is learning to get to know himself, the new man that no longer wrestles confusion and paranoia. We now are working through unresolved dilemmas that have been engraved in our minds, but most of the demons we are fighting are from the past and only show their faces on mere occasion. It seems as time continues the ketamine continues to offer more relief and Johnny’s misunderstood mind is becoming more well defined. We now have the meaning of his over aroused and overheated nature. When we witness the darkening of his eyes and the reddening of his face we know it is time for Johnny to cool off, literally. He is taking back his life and trusting his new clearer perceptions of reality. He is no longer convinced or insistent that his view of the world is the only angle in which to survive. Happily the days of cold running water and ice packs to offer physical relief are over. There have been times when our household was almost torn apart, finding the fellowship of his pain intolerable. It has taken us many dark places but my family has won hard earned wisdom and now, with optimism, we await Johnny’s future.

With the deepest of gratitude, we thank Dr Papolos and his team for their quest to continue to fight for kids with early onset BPD and our shared commonality and phenotype, Fear of Harm.

Donna C.