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 21st 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 21st 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.
As George grew older, even my husband could no longer ignore that there were serious problems. He had tremendous anxiety and was always fearful that something was going to happen to one of us. He could not get these fearful thoughts out of his head. When George entered kindergarten, his anxiety was unbearable. He could not ride the school bus because he was afraid of the driver. He was not able to make friends at school because he would get very angry and misinterpret the other children’s intentions. He always felt that people were being mean to him and did not like him. He became overwhelmed very easily and could not transition from one activity to another. He had terrible night mares that were very gruesome. He would see his father stabbed and see blood gushing everywhere. In the part of the dream where one might normally awake, right before the scariest thing was about to happen, he would remain asleep and see it in vivid detail. He was always irritable and was always in danger of going into a rage at any time. At the end of kindergarten, I found George in his bedroom with a scarf around his neck tied to the curtain rod, trying to hang himself. He would often tell me he wished he was dead. It was at this point, he began seeing a therapist. He was 6.
For the next two years, George was in therapy and we tried to work on helping him reduce his anxiety and control his anger. Nothing worked. In fact things only got worse. George has two younger siblings who were terrified of his outbursts. They would cry and huddle together. Often times I had to secure them in a separate room while I dealt with George. Not only did George’s rages worsen, he also was having manic episodes as well. However, I did not realize this was the case. He did not sleep. First of all, he was afraid to go to sleep. I think his nightmares were so horrific that he was scared to close his eyes. He often slept on the floor of our room. If he was able to fall asleep, he would also awaken in the middle of the night. I would often wake up and find him sitting on the floor watching TV in the middle of the night surrounded by bowls of cereal and cookies strewn all over the floor.
His relationships with children his own age were getting worse as well, not that they were good to begin with. Children would keep their distance from him and some children really did start to make fun of him. Now, his perception of people not liking him and being mean to him did in fact have some truth to it and his response to them only furthered their behavior. It was a vicious cycle and it was heart breaking to watch. He was also having more difficulty in school academically, especially as the academic demands increased. The anxiety that was so pervasive continued to worsen as well. George would continuously ask the same question over and over and over again to get reassurance that all would be ok. But, no matter how many times we reassured him, he never would feel secure. He was always afraid.
When George entered second grade, his therapist felt that it was time to see a child psychiatrist. She thought George may have ADHD, as did the school. We brought him to a child psychiatrist and to our surprise, she diagnosed him with OCD. She put him on Zoloft (which ultimately caused mania) and a cycle of misdiagnoses had begun. For years, life went on with this child suffering and his family suffering around him. George was placed in special school programs and was shifted from school to school year after year. Life at home was constant chaos. His brother and sister were constantly afraid and lived in turmoil. George was constantly angry and afraid and lived in turmoil. After every rage, he broke down and cried and cried with such guilt for his behavior. He knew right from wrong, he simply could not control it. He always thought he was a terrible person.
We could not figure out how to help George and the entire family was being destroyed. George did not have any friends. Home life, where you are supposed to feel safe and secure, was a war zone. George’s siblings were always terrified. No one came to our home. My husband and I were almost always at odds. He found it particularly difficult to come to terms with the fact that George was ill so he would respond to George’s behavior with his own anger and frustration. This only made things much worse. Our marriage was under constant strain.
School was an absolute nightmare. I received phone calls every day, sometimes multiple times, about George losing control in class, on the playground, with a teacher. It got to the point that I was afraid for the phone to ring. The only saving grace was that I had a very understanding boss who often gave me the leeway I needed to deal with whatever was going on at home. I truly do not know how we would have survived without this flexibility.
When George was 11 years old, I saw The Bipolar Child in a book store. After reading the book, I made an appointment to see Dr. Papolos because the children in the book sounded so much like George. It was both frightening and a relief at the same time. However, I also remember thinking, if I go see this doctor and he tells me George is not bipolar, I will know that we are getting him the right care. That was really what I was hoping for. When I had my meeting, exactly the opposite occurred. Dr. Papolos was sure that George was bipolar and now I was once again confused because at the time he was not doing too badly. So, what did I do? Nothing… which is one of my biggest regrets because less than 2 years later, things got much, much worse and George was hospitalized for the first time. He went through a very traumatizing, unsuccessful and even dangerous hospital stay, even though he was supposedly in a very good hospital. This experience still has left its mark to this day.
After George was discharged from the hospital, we finally brought him to see Dr. Papolos. From this point forward, we worked on correcting George’s medications –removing him from the antidepressants and stimulants and getting him on mood stabilizers and antipsychotics. This was a difficult process and as it turned out we were not able to do this safely at home. George attacked his younger brother, attempting to strangle him and also tried to jump out of our moving car along the Merritt Parkway.
He was hospitalized again in order to safely make the medication switch. Over time, Dr. Papolos was able to formulate a combination of medications which controlled George’s rages and made it possible for him to function. George said he was the first doctor he ever went to who actually understood what he was going through. We were also extremely fortunate to find a wonderful Therapeutic Day School which also helped him manage throughout the day and dealt with his learning issues. George’s mood swings from depression to mania were more under control. He would need tweaking of his meds in the fall and spring but we were learning to catch these changes earlier so Dr. Papolos could address it. His school had a twelve month program so he had support throughout the year.
Home life, however, was still an incredible challenge. Even though his mood swings were more under control, George still needed constant time and attention. He could get through his days at school but he still needed a tremendous amount of emotional support. He was extremely dependent. He did not have constant violent rages any more but there was still a difficulty with constant agitation. George misinterpreted tones of voice and intent from people. He always felt under attack. He could not spend any time alone and could not occupy himself. His anxiety was still incredibly pervasive.
The family as a whole was still in very bad shape. George’s sister and brother, now much older, were not so afraid any more but were now very resentful. They were resentful of the time George absorbed with me and my husband. They were resentful of the way they were treated by him and could not really comprehend that he was not well. They were angry at us for not protecting them better and then they felt guilty about being angry. They were resentful about our parenting and felt that we treated George differently than they were treated, and that they could not bring friends home because
they still did know what was going to happen from day to day. Everyone needed therapy to try to make some sense of our lives.
My husband’s and my relationship was also under constant strain. Even after all the years of dealing with George’s illness, my husband still reacted with frustration and anger which always made whatever was going on with George much, much worse. This not only affected his relationship with George but also greatly affected our relationship as well because for me it was as if I was all alone. What I wanted was support so we could make decisions together but what I felt was as if I had four children instead of three. I felt as if I was the only one learning about George’s illness and my husband was not coming to terms with it. It caused a lot of challenges in our relationship.
As George grew older, even though he was more stable, there were so many areas that were problematic and prevented him from moving on with his life. His anxiety was pervasive. His levels of anxiety were so high that he was prevented from doing things. He would get so paralyzed with fear that he could not move forward even to ask for assistance. His fear would trigger his anger response so, often, people didn’t even realize that anxiety was at the root of his problem. He also continued to misinterpret people’s intentions. He always felt under attack and could never take a joke. His ability to foster relationships with people remained greatly impaired. The slightest comment was always responded to with an extreme reaction. It was difficult for him to think through a response or well… even think at all during these times. He relied so heavily on me to help him navigate through his world, and although he made so much progress in so many areas, these issues were so pervasive that I did not see how he was going to be able to move into adulthood to become a self sufficient person. This frightened me greatly. It was as if certain areas of his brain simply did not function
Several years ago, I was thinking about George’s life and wondering how he was going to survive. I knew that although he had made so much progress, ultimately, it was hard for me to picture how he was going to live an independent, happy, stable life
When Dr. Papolos first told us about ketamine, I was praying that this may be the answer. I was nervous but hopeful. George, not surprisingly, did not want to try it. He was afraid. He was afraid it would not help. He was afraid that it would throw off the level of stability that he now had. He was afraid he would have some terrible side effects or turn into a different person. I read all the information that Dr. Papolos gave me and of course I was concerned but quite honestly it was not a difficult decision for me to make. Most of the medications George already takes are in fact “experimental” so to speak, given that most were not created to treat bipolar disorder (but were found to be helpful) and/or did not have a long term history to track when treating children. The reality is that when your child is so ill that he cannot function, you do whatever you can to try to make them better. There really isn’t a choice when you have a non-functioning person who is in such terrible pain. Now, although George was much better than he had been years earlier, the issues he still faced were so impactful on his life that if there was something that could really make a difference, it had to be tried. I felt that without taking this chance, there would never be the possibility of him having a real future. I needed to be sure George had every chance to have a life. Convincing George was not as easy, but ultimately, he agreed.
The first time George took the ketamine, he responded with goofy laughter. He felt a bit swimmy and had heavy arms and legs. He felt a little spacey and had a little bit of a “high” feeling. These side effects lastly briefly and dissipated within about 45 minutes. The most amazing thing was he experienced an overall feeling of internal calm that he had never felt before. The other thing that was dramatic was the sense of cooling he felt in his ears. George has major heat issues with his ears. He has difficulty with the heat in general but whenever he gets upset, and often when he doesn’t even realize he is upset, his ears get very red and very hot. His ears would often be a sign of impending trouble, because they would usually be very red before he would have an explosion. After administering the ketamine, his ears felt cold and very shortly thereafter their color returned to normal flesh tone which was quite amazing to see. George has never experienced significant side effects from the ketamine.. Sometimes, he feels a bit spacey for a few minutes or has a very brief “high” feeling. Once in a while he may have heavy arms or legs. These side effects disappear within 15 minutes of administration at the most and at this point, most of the time, he does not experience any side effects at all.
The affects the ketamine has had for George have been nothing short of miraculous. One of the first things I noticed about George after the administration of the ketamine was that he was a lot lighter. For the first time, we were able to have dinner as a family without either George or one of his siblings leaving the table. Dinner has always been a nightmare in our home. After the ketamine, we were actually able to have conversation at the table. This may not sound like a big deal but when every night you cannot get through a meal without an explosive situation occurring, a conversation amongst all of your children, where people are laughing together is a huge transformation. Pre-ketamine, every comment was perceived as a personal attack and was misinterpreted. Post-ketamine, comments were taken in stride and there was some normal back and forth. There was some laughter. George was even able to laugh at himself a bit which was quite astonishing.
The next thing I noticed which was beyond dramatic was the reduction in George’s anxiety. George’s anxiety was pervasive in every aspect of his life. Last summer, George had take the subway to go into the city for a job opportunity. He did a trial run with my husband before attempting this on his own. He was beyond terrified to the point that he almost refused to go. Because the event he was going on was very important to him, he forced himself to push through his fear. However, this took every ounce of energy he had,and he was a complete wreck. First, we waited on the train platform and I had to walk him through every step, which side was the NY side, where did he go when he got off the train, what if the train was late, what if he couldn’t find the subway. He called me multiple times and when he got confused, of course he got angry and upset and could not even think of asking someone where to go. When he finally did ask for help, he still had a terrible time finding his way, and said it was very confusing. He finally did find where he had to go but the anxiety he felt was so overwhelming that he could barely stand it. Post-ketamine, George was going into the city to see a show and had to take the subway again. He called me to tell me that he wasn’t sure where he was going and had just asked someone who directed him and he could not believe how easy it was to find his way. It was as if he was seeing the subway station for the first time. What he had found so confusing first time, even with asking for help, this time was so obvious and even simple. In the past, his fears and anxiety crushed him to the point of not being able to think or see what was around him so he could not function. Post-ketamine, there was a new clarity and visibility into the world. Life was not so frightening. It was in fact enjoyable for the first time. What an amazing gift.
Another big change was in George’s response to temperature. George used to sleep with just a sheet and a fan blowing right on him every night. He was always hot. He never wanted to wear a coat. Now he no longer needs a fan at night. He sleeps with blankets. He actually gets cold if it is cold outside. One day he asked me if we could get some long sleeve shirts. I told him just to put one on. He said, “I can’t Mom. I don’t have any”. It wasn’t until that moment that I realized that he only owned short sleeved shirts because even in the dead of winter, he was always hot. Needless to say, we went shopping. I truly believe that the heat in his brain used to sort of short circuit it, and now it has cooled down and he is working on more cylinders… so to speak.
Another amazing post-ketamine change is George’s ability to recognize his own feelings. Pre-ketamine he could never recognize when he was agitated. If he did feel any agitation, he did not see it as an inward problem but was always somebody else’s fault. He would not be able to gauge for example if he needed a change in his daily meds because he was becoming manicky or depressed. He would ultimately realize when he didn’t feel well, but not until he was in the throws of a big change where he was already making poor decisions because he could not recognize on his own that he needed assistance. Post-ketamine, he knows when he needs to administer the ketamine. Even though he does have a schedule with it, he can tell when he is starting to feel off, EVEN BEFORE I DO!!! This is a wonderful and amazing thing because this means that HE will start to have control over his own condition. HE will be able to manage his own health. This has been a huge relief for him and for me. What a miracle!
Another, HUGE change post-ketamine, is George’s ability to be reflective. He can now look at a situation where he may have gotten upset over something and reflect on it and have an understanding of why he has responded the way that he did. He is able to access his feelings for the first time in his life. Pre-ketamine, he just reacted to the fear, hurt or rejection and more often than not his defense was anger. Post-ketamine, he can actually think about what he is feeling and why he is feeling it, and he can analyze what is going on. Even if he does have an initial reaction that he isn’t totally happy with, he can learn from it and apply it. His brain has become un-stuck.
George is learning that people can be annoyed or even angry without losing control. This was never possible before. I remember the first night that he felt annoyed with his sister after he had taken the ketamine and he was afraid that it was not working any more. He was a wreck and terrified until I pointed out to him that anger is a normal emotion. It is not having the ability to control that is abnormal. I had to point out to him that he was in full control of himself and did not respond inappropriately. He was just annoyed. This was a totally new experience for George. It is as if the whole world is opening up for him and he can see that he now has a place in it.
Socially, everything is changing. George has never had any friends. He had so many issues when he was young that it was impossible to foster friendships. Even as he became more stable, he could not manage social situations. He could not read social cues. He always felt under attack and could never take a joke. He had so much social anxiety that he was always afraid of saying or doing the wrong thing, which inevitably led to him saying or doing the wrong thing. He was desperate to have friends and be around people his own age but was always so uncomfortable and anxious, it never worked out. Every bad situation only created more self doubt and anxiety in George for any future situation. Of course as he grew older and people had already developed these relationships, he was left alone without the skills to possibly foster friendships even if he could find the opportunity to be with people his own age. Post-ketamine things are changing dramatically. He is not afraid of constantly saying or doing the wrong thing. He is not struggling with constant anxiety. He can relax and have some fun. He has had some opportunities to be with one of his cousins and his cousin’s friends and he has enjoyed himself. His feelings of constant loneliness are not quite as nagging. He does not take himself and everyone around him so seriously. He has some light. I can envision him being able to make and keep friendships as he strikes out into the world as an adult. I can see him having the ability to navigate interpersonal relationships in the working and social world. This was not something that seemed even remotely possible before and really how can one function in life without this ability?
I believe the ketamine has literally opened up blocked areas of George’s brain. Every day I see more and more positive changes in him and he also sees them in himself. He is completely off of one of his medications and down to a miniscule dose on another. Dr. P. is continuing to work to reduce his medications and so far all has been going extremely well. George’s brain now seems open to learning skills that most children learned many, many years ago. He is working in therapy to come to terms with what has happened in his life and how to move forward from here. He will always have bipolar disorder but where before ketamine he was able to manage through the days with great assistance from me helping to be his emotional brain, now, he has a future and I see him being able to move into self sufficiency. Even his relationships with his brother and sister, where there has been so much damage, are improving. They see the changes in their brother and although it is hard for them to have confidence that these changes are permanent, they are slowly moving forward.
I cannot say enough about the difference the ketamine is making for George. I see a future for him with the opportunity to have a happy life with all the ups and downs that entails. He still faces many challenges every day and our family still has many difficulties but his life looks so much brighter now.
Birthdays have never been good in our house. Special occasions always provoked anxiety which meant the day would end badly…more often than not, very badly. Today is my son’s 21st birthday and I feel blessed. Blessed because he is here with us and blessed because his future is looking so much brighter. There have been so few smiles on his face over the years, but today I see a smile on his beautiful face. This birthday will be a good day in our house!