Finding A.

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.

January 29, 2012 ( 8 months with ketamine) - Blog - C.B.

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.

Our 16 year old son has been taking ketamine in the intranasal form for over a year.

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.

Dear Dr. Papolos,

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. 

Our son, Nathan was diagnosed with bipolar disorder at the age of two.  For 7 years we played the med, therapy, new Doctor game.  There were times we found stability, but more often than not we were searching for stability.  After seeing several specialists in the field, we came upon Dr. Papolos in August of 2011.  After talking with him, it was clear to all of us that Nathan fell into the Fear of Harm phenotype, a new subtype of childhood-onset bipolar disorder recently identified by research studies. As silly as this sounds, what a blessing that he was in that category!!  Without having the FOH aspect to his disorder, we would still be searching for relief.

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.

This was a lovely New Year's gift to me from C. who I had seen since age 8 now age 18.

Several weeks into the ketamine treatment the fear sensitization and anger tempered, and she was able to reflect without negative bias about herself and appreciate the world outside of the bubble of anger, self-blame and fear that these children are surrounded and emotionally entombed by. What a gift.

On Jan 04, 2012, at 05:40 AM, C. <nosy@yahoo.com> wrote:

Hi Dr. Papolos,

The most incredible thing just happened to me.. for the first time ever I was able to cry about this past year and feel good at the same time. I started to cry because my mom and I were talking about everything that has happened this year and usually when this past year is brought up I would smile and laugh about it. But then I was able to really talk about it. I talked about how awful this year was but it didn't make me feel angry or anxious. I actually felt really relieved and content. Like I'm ready to move on and begin fresh with the new year.

I can't begin to describe how happy I am. I did it! I pushed through all of it. There were so many times when I was in a mixed state and I thought I was going to kill myself. I did so many things this year that should have killed me. Thank you for helping me through this. I'm in such a good place now. And none of this was my fault and I'm really realizing that now. I can't blame myself for this. This is seriously a miracle. I thought I was going to be stuck the way I was and end up killing myself. But thanks to your help and the support of my parents, I am feeling the best I've ever felt. Thank you for everything.

C.

I also have to report on John. He  is doing great. This is the best Christmas he has ever had.  He is enjoying our overwhelming large family and happy as can be. Usually his stability goes downhill from around thanksgiving right through the new year. Not this year!   Even with another slight reduction in risperdone he is still doing great.

It's amazing.

Thank you

Mary  S,

C.B. 12/25/11

Today was a very special day. Today was Christmas, a wonderful, joyful time of year, that usually stresses and upsets A. The waiting, wondering and planning is all too much for her. This year was totally different. I do not recall- ever- a Christmas that A. did not melt down. We had actually learned to build "quiet time" into the day to minimize the stress/meltdowns.

This year, she was happy, relaxed, played, laughed and took a nap! There was a balance to the day, we have never experienced. Tomorrow we are visiting family, and she is looking forward to it! I can not thank you enough, for our Christmas miracle, the gift of the real A., compliments of ketamine.

Looking forward to a happy 2012...thank you. I used to wish, then I dared to hope, now I am simply grateful.

Before you look away and say, “Mom, I don’t wanna read this crap!  There is no way anyone without bipolar disorder can tell you what it’s like!”  I have bipolar disorder.  My name is George McNulty and I was diagnosed after twelve horrifying years, much of which I don’t remember because I was so ill.  Here is what I do remember.  I was terrified all of the time!  New experiences frightened me to the point of being incapacitated.  I couldn’t go places because I was afraid I was going to die or someone was going to hurt my family.   When I was very small, one of my few memories is getting into our car from the babysitter’s and pinching my Mom’s cheek saying, “Are you my real Mom?”  I was awkward in social situations and never could really make friends.  I was always afraid I was going to screw it up… and I did.  But I didn’t mean to.

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