The benefits of ketamine have been numerous and profound despite the fact that our son, Sam, has been in treatment with a combination of partially effective medications for bipolar disorder for over ten years.  It would actually be quicker for me to list the ways in which ketamine HASN'T improved the quality of life around our household and for Sam personally, than the reverse.  Sam, now 13, was highly symptomatic from his earliest years.  Prior to treatment, he had the usual litany of unbearable symptoms that plague most young children suffering from pediatric bipolar disorder including severe separation anxiety, night terrors, rages, sensory integration dysfunction, hyperactivity, aggressive behavior, giddiness, sleep dysregulation and fear with a capital "F".  Our adorable blonde-haired, blue-eyed boy was living a nightmare and we couldn't rescue him or ourselves.

After being told that we were just overly anxious first-time parents by our pediatrician on more than one occasion, it became apparent that without more data and a different doctor, nothing was going to get better.  At 12 months I started charting Sam's reactions to life each day, describing situations in detail related to sleep, the weather, outings, our dog, night terrors, interactions with other children, his relationship with us, etc.  I didn't know when this information would become relevant but I felt that someday it would be the key that would hopefully help someone figure out what was so terribly wrong.  Eighteen months later we learned that there was such a thing as pediatric bipolar disorder and that Sam's symptoms mirrored many described in the literature.  I typed up all of my paperwork and sent it to Dr. Papolos, asking if he would review the information and assess Sam in person.  Sam was evaluated, diagnosed  and started on medication.  He has worked with Dr. Papolos for ten years for which we are eternally grateful.

(more...)

During the first 20 months that D used Ketamine, she continued to rage periodically.  These rages typically occurred close to the end of the dosing cycle or due to the effects of antibiotics which have a profound destabilizing effect on D.  In order to avoid destabilization as a result of decline in efficacy,  the dosing interval was changed from two weeks to 8 days. An e-mail from D’s mother is reprinted below:

At some point we should somehow video the before and after for you.  It literally turns things around within minutes, like night and day. I would be happy to communicate with any parents about our experience with ketamine. It has been such a miracle treatment for us, and I hope it will be for other families, as well.

Since  January of 2009 we began using the ketamine nose spray therapeutically with D. our lives have changed and improved dramatically;  Rages became less intense, less aggressive, and FAR less common!  In fact, today they are practically non-existent!  We were used to one to three rages a day during difficult times, and one to three a week during good times. Immediately after starting the ketamine this changed to one to three times a month.  During those rages, D. rarely self-harmed the way she used to, banging her head or self-biting, etc. She rarely lashed out directly at me, as she used to hit, kick, punch, spit, etc., at me.  Even her verbal threats became few to none -- no more "I'm going to kill you with a gun" or any of those.  The rages were still there, but they became few and far between, almost always manageable, shorter lived, and less intense.  They became the exception, no longer the norm.  As I write this today, it has been three months since D. has had a rage!

D's frustration-tolerance increased tremendously on the ketamine.  After six years of speech therapy we were able to discontinue it as it was no longer needed.  Cognitively, D. made a huge leap forward.  Emotionally, she was no longer as fragile.  We were able to take her out of the therapeutic day school she was attending and place her in the less restrictive environment of a small school for children with learning disabilities.  She is reading now, doing math, writes neatly, plays soccer and softball.  She has friends!  Her first real group of girlfriends!  She conquered her fear of the water and learned to swim. This fall she will join the swim team!  And instead of galloping around with a stick horse as she always used to insist on doing everywhere, she now rides real horses, confidently and joyously.

(more...)

Our 11-year-old son began ketamine treatment this summer and it has changed his life.  We had exhausted all options (hospitalizations, medication changes, therapists, five school switches) and nothing worked.  Constant rages, deep feelings of inadequacy, and inflexibility, were the norm for Daniel.  We were desperate to find him help.  Then miraculously, we stumbled upon Dr. Papolos's Fear of Harm criteria online.  The good news (and the bad news) was that he was a match, and it was treatable with ketamine.  He started treatment in July and it took about two months to get the dose correct.  Once we did, his behavior quickly changed.  Daniel says that he feels calm for the first time in his life.  He is markedly more cooperative, flexible, pleasant and positive.  Rather than trying to describe the changes, I decided to interview Daniel to share with all of you:

What are your feelings about Ketamine?
"It has worked wonders.  It is the best thing you could ever do. It has made me energetic, It has made me less angry, It took away my frustration, It will be the best choice you ever make."

How did you feel before ketamine?
"I used to feel really tired, I used to feel really mad and frustrated, I used to have tantrums, I used to be sad."

How do you feel since starting ketamine?
"Now I don't feel sad, I just feel normal.  I also feel less heavy and sluggish.  I used to be really shy but now I feel comfortable and good about myself and talkative.  I feel like being with my family more."

Final words about Ketamine:
"And now you see that all this worked out for the best.  My future will be the best ever because of this medication."

JOSH

My son, Josh, is now 10 years old and is one of five children. Josh joined our family when he was five weeks old.  He is a bi-racial child and we really have no medical history on his birth family.

From day one Josh was a very difficult child.  He was colicky, liked to be held all the time, did not like to get dressed or undressed, was terrified of the bath or water in general, was capable of crying for hours on end no matter what I did to comfort him, did not like to go on swings and was delayed in all areas.

I would ask the pediatrician about what I noticed every time we went there but was always told to relax, that all children were different and developed at different ages and everything would be fine.  Not So.

When Josh was 18 months I left him in the living room with his 8 month old sister while I went to the kitchen to get juice for them.  When I came back Josh had his hands around his sister’s neck. At this point I stopped listening to the pediatrician, and knew I had to get help form someone else, and so began our doctor journey.  (more...)

One of the hardest decisions you have to make as a parent of a child with any mental illness is whether or not to medicate, at least it was and still is for me.    Although John wasn't properly diagnosed until he was 8yrs old, I believe he has suffered from mental illness since he was brought into this world.  He suffered from night terrors, night sweats, extreme rages, and dangerous behaviors. To protect him as a young boy from the horrific vivid images he tried to bang out of his own head, we padded the walls of his room to prevent injury.  He missed one full year of school which he is still trying to make up for. He never learned how to have relationships with other children and until we found Dr. Papolos our home was our own private prison.

Dr. Papolos has spent his career dedicated to making a difference in the lives of children suffering with mental illness so when he told me about several other kids he was treating with ketamine I thought this might be the opportunity for John to have true stability with a lot less daily medications. I researched everything I could, but reading about the affect on the brains of infant rats didn't ease my mind. It is very challenging when there is little to no research out there about how any of the medications we use with our children will affect them in the long term. Dr. Papolos spent a considerable amount of time answering any questions and concerns I had. (more...)

C. B. - 8/27/11

I am following up with further comments about the progress we have seen since my previous post. Awe, amazing, a miracle...these words come to mind when I think of our daughter Aly. She is 15, and is in a metamorphosis of sorts. We have always known that inside Aly was a kind hearted person. We've known that under the skull t-shirts, black clothing, "I dare you to comment" exterior- there was a sweet girl lurking. We allowed a certain amount of self expression, partly because when you are dealing with bipolar you need to pick your battles! As long as it was not obscene or offensive, it was ok. Imagine our surprise when just 3 months after Ketamine entered our lives, we watch in AWE as Aly came down stairs in a navy and white striped top, with a white shirt on top! Her make-up was no longer dark purple and black, but light and fun. We honestly were unsure whether to comment for fear she would run back up stairs and change! This trend continues...color, neon, stripes...the only skulls to be found now have bright bows on their heads! Her nails- formerly black are now lime green! Who is this child? She is the one we knew was lurking, and now she can shine due to Ketamine.

Other changes, you ask? Well we had accepted that swearing was a better option than violence. So although we tried to dilute it, there were often one sided swearing, screaming matches in our home. Now suddenly the strongest language Aly seems to use, is "doorknob" and affectionate tem she uses when she feels someone is doing something stupid! She also now has a sense of humor...not the mean laugh at you because she has hurt your feeling humor...but the "Laugh 'til it hurts" kind of humor! She makes witty remarks, is learning the joy of funny sarcasm, and just laughs, smiles and participates in life in a way that calls people to her. She no longer wears an invisible sign that shouted "Stay away!" She now returns calls, makes arrangements to see friends, reaches out when people around her are sad...the list goes on...

I am happy to share our experience with the ketamine Therapy, and I hope it will be helpful to those of you considering it for your child.

When my daughter Suzie (now 9) was in preschool she had oral surgery and, after much discussion with Dr. Papolos and an anesthesiologist, the oral surgeon decided to use ketamine to sedate Suzie.  Two previous sedations for ear tube surgeries and one tooth extraction had shown us that Suzie experiences paradoxical reactions to many of these meds, often derailing her mental stability, taking months to get back on track.

Well, God Bless this oral surgeon -- and Dr. Papolos for deciding to try the ketamine!  Not only did it work effectively for the surgery and NOT derail her stability -- it actually gave us back our daughter for a few days!  It was an accidental discovery.  Suzie woke up from that surgery and it was as if someone had taken away her bipolar disorder.  No separation anxiety, no sensory issues, increased clarity of thought and speech, affectionate, and more mature than we had ever seen.  It was truly amazing.  Unfortunately, it wore off after a day or too, but we made note of it for any future oral surgery, etc.

A few years later Suzie went for a sedated MRI.  With a great deal of coaxing, the anesthesiologist agreed to use ketamine to sedate her.  He was convinced that she might hallucinate, and experience other negative psychiatric side effects.  But, once again, Suzie woke up seemingly bipolar-free -- with clarity of speech and thought, affectionate, and calm-bodied.

(more...)

I certainly hope that I am able to portray in this blog what a difference ketamine has made in George’s life. I believe it would be hard to accurately convey how profound this change has been, without providing some history about my son’s life. So, I hope you can forgive the length of this writing, but I also hope that it will be informative and helpful to anyone who reads it.

Today is George’s 21^st birthday. Now, 21 is certainly a milestone for any child, but I can honestly say that in George’s case, I was really terrified for most of his life that he would not be around for his 21^st birthday.

Of course I didn’t realize it at the time, but looking back now, I believe the earliest symptoms of George’s bipolar disorder were actually felt in the womb. When I was pregnant with George, he moved constantly. Elbows and feet would come bulging out of my stomach. You would actually see my stomach roll. My husband used to ask if I was carrying a baby or an alien. As a baby, George had a terrible time settling to sleep. He would cry and cry and no matter what I did, I could not get him settled. He nursed ravenously and was startled by the slightest sound. He ultimately had to cry himself to sleep every night.

As a toddler, George was extremely curious. He was speaking in full sentences by age two and could have conversations way beyond his years. However, by the time George was 3 years old, I knew in my heart that there was something terribly wrong; but no one, not even my husband, really believed me. I would speak to relatives about how I could not control George. I would explain that he would fly into these temper tantrums just by my telling him no to a request. I would get advice about time-outs and effective parenting and everyone told me it would be fine. I tried working on my parenting skills but nothing helped; things only got worse.

George was drawn to things that were not typical for a small boy. He was very interested in movies but not Disney stories. He would be drawn to violent images and would want to watch movies that were not appropriate for a small boy. When George was told he could not do something, he would fly into a temper tantrum. The scariest times were when he would get what I referred to as “the look” on his face. His eyes would glaze over and I knew my child was no longer there. He would smash things, hit, kick and curse and there was no controlling him. This would go on for hours at times. You would walk on eggshells all day long because you never knew what would set him off. When my husband would come home at night, George would be waiting by the window for him. He would be ready to play and spend time with his Dad and my husband did not really believe me when I told him what went on during the day.

(more...)

Before the Miracle (Ketamine)

Before starting this miracle medicine, I had no idea what I was missing. I was afraid of everything that my mind could make seem like it was a threat. I had uncontrollable heat flashes, trust issues, sleep issues. My family actually thought I was at the top of the climb, doing the best I had ever done, boy were they wrong. Even with four doses of medicine each day, I would have rages, meltdowns and just horrible days. Still, this was the most stable I had ever been.

After Ketamine

After starting Ketamine.... let's just put it this way, my mom asked me
"What's it feels like?" and I answered "Before it was like my eyes could watch as my words and touch destroyed everything I love, I could hear the protests but I could not do anything about it. Now my eyes are open in joy, I can see the happiness in my life. My voice is either song or laughter, not harsh words, my touch is filled with care and warmth not hurt and ice cold gestures." This is the first time I've seen life through MY eyes, not the eyes of Bipolar. This miracle called Ketamine has definitely changed my life, if not saved it.

Pre-Ketamine and Post-Ketamine are almost the difference between living and being dead. As I look back at a mere 6 weeks ago, thinking that our daughter was “at the top of her game” I am utterly in shock. We were so thrilled that she was going to school and coping. We were thrilled that she could manage to go to the mall for an hour, or to the movies as long as it was planned in advance. We had learned how to head off a meltdown, and to give Aly frequent breaks in social situations. Most of all, we had learned to walk on eggs, because Aly’s rage was not only upsetting to us her parents, but also to her sister Kelsey. But the worst impact by far was to Aly’s self esteem. Even when she was “doing well” she viewed her self as a monster. This feeling had been reinforced many times because although she may use her tools and self control and have a great day dealing with visitors, or going to a park, inevitably things would fall apart that day or the next. It was a cycle that we seemed not to be able to break. Her stress level was just too high. Winter meant depression and summer meant mania. In between was just a wild ride of emotions, trial and error and accomplishments marred by out bursts. During this time Alyssa also suffered from terrible nightmares, horrific imagery through out the day, and urges to hurt herself. She made friends but did not know how to keep them. She kept everyone at an arms length, literally she did not enjoy being hugged or touched.

In the last 6 weeks things changed dramatically. It began slowly; to our amazement the time Ketamine helped Aly could actually be counted in hours. At one point we consistently had 57 hours symptom free, for three sets of Ketamine in a row. As the medicine wore off, her "heat" would return, then the imagery. Then we added a spray and the duration of being symptom free became longer! After a month we were giving Aly Ketamine every third day, and she was symptom free for 72 hours at a time. For Aly, and her family this was nothing short of a miracle.

During this trial and error period many things in our lives began to change. Some are hard to explain, it is more of a feeling; there is happiness in our house. The tension has lifted. There is laughter, and it has replaced the out bursts and tears. There is communication, companionship and love. Aly will hug us, for no reason at all. She smiles so often she looks completely different to me. Aly makes plans with friends, discusses ideas with her family, sings, and swims! She goes out with friends; she went to the fireworks for the first time in her life because she was not afraid of the crowds. She is learning to be more independent; executive functioning tasks used to be arduous for her, now she simply gets her chores done, and then asks to help out! She has empathy, she hugged her sister as she cried, comforted a friend who was sad, and asks how we are. She can now show appreciation, at her birthday she was genuinely thrilled and interested in what her friends had written in cards. She replied with awe as they told how special she is to them. Aly can now love. She can freely give and receive love; she talks about her feelings, shares them willingly, and listens to others in return. It is in her eyes, her attitude and her voice, and we are forever grateful because Aly is learning to love herself.