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.
I took him to a neurologist at a major academic hospital who told me he believed my son had bipolar disorder and he put him on Ritalin. I also at this time had him evaluated by an early intervention team who said he qualified for all services because of his delays. Meanwhile our life at home was fast becoming a living hell. At that time we had 4 children and Josh was becoming very aggressive towards all of his sibs. He needed one to one supervision at all times in order to keep him and his siblings safe. At this point he was up for at least four hours a night “howling and banging his crib off the wall”. We were exhausted and extremely worried and frustrated that no therapy seemed to be working.
Josh continued taking Ritalin, and continued to get more and more impulsive and aggressive. By the age of 2.5 years he was getting out the windows of our home, and then one day he picked up a scissors and went to attack his younger sister. At that point he was started on risperdone. We began to get some sleep at night, but the days remained extremely difficult. There were no limits for Josh. Even the simplest limit setting would send him into rages that could last for hours. His moods were totally unpredictable, and he could go through all rapid cycle of emotions in a period of minutes. We put him on lithium and things improved slightly, but only for a while.
At 4 years, Josh was placed in a psychiatric hospital for the first time. As a parent it was the hardest thing I had ever done. At 5 years Josh was placed in a major New York teaching hospital for evaluation.
Let me say at this point that we never placed Josh in hospital easily. It was always a very difficult decision for us, and truthfully, because of his aggressive behaviors, he should have been placed in hospital more frequently, but we just could not bring ourselves to do it. Each time he was admitted his medications were increased. At this point, his list of daily medications included:
- Lithium
- Risperdal
- Abilify
- Namenda
Residential treatment was suggested to us over and over again. Our doctor list grew. Every time we heard of a new doctor or specialist we sought consultation, and still nothing was working.
We tried new drugs and new combinations of drugs and still nothing worked. Josh was placed in special programs. NOTHING WORKED. Doctors began to tell us that Josh’s problems were outside their level of expertise and it was suggested to us that we see if Dr. Demitri Papolos could help Josh.
Again we tried every combination of drug that was available to us and again Josh ended up at another hospital with the final recommendation being Residential Treatment.
Our lives and the lives of our other 4 children were suffering greatly. Professionals were shocked at how we had to live when they would come into our home to counsel and help, and most were totally unsure and seemed almost nervous when trying to deal with Josh. As a family we had developed a system of response where all of us would go into action when Josh would go into crisis. I would stay with Josh and try to bring him “down” while my older children would run and get the younger children out of the room until it was safe to return. The professionals would ask me if I thought this was “normal’? and I would just look at them and let them know that they were invited into my home because I knew it was not “normal” but it had become “our normal”. Something had to be done. Josh now was getting bigger and stronger and was very aggressive and was hurting more.
Our biggest fear was coming to pass. We had spent almost eight years trying to keep Josh home with us and now we were faced with the reality of having to place him in a residential facility.
Then we heard about ketamine. We needed to try this drug. Please understand this was not a drug we wanted to try but a drug that we needed to try in order to try and save our family. I know some people who are reading this may think I am being dramatic but until you have lived with a child with bipolar disorder you can honestly have no idea how bad it gets.
We started Josh off with the nasal spray. We started at a very low dose and saw a little difference but not enough to justify keeping using. And then we hit the right dosage and it seemed like all our prayers had been answered. It was six o’clock in the evening, and we gave Josh his dose of ketamine, he had been having a very difficult day. Immediately he said he was dizzy. Within 20 minutes Josh became a typical child. He seemed happy and was able to express his thoughts in a way he had never been able to before. I forgot to mention that Josh was still delayed in all areas, and at this point was still unable to read and was “ungraded” at school. We went out for ice-cream that night with all our kids , for the first time, with no incident.
Teachers reported that Josh was doing unbelievably well at school. He could focus better, was working independently, and began to read, and to do math. One of the most gratifying things to for us was that they said he was very happy and was singing all the time. He stopped being aggressive towards us, was shouting a lot less, was able to compromise with us, was beginning to understand and grasp the concept of time. We had even started to set limits for Josh. Something that would have been impossible before.
His anxiety level decreased dramatically. The fears he had before were dramatically reduced. He began to try things he would never attempt before. Josh is also a bed wetter but we had many dry nights once the ketamine was started.
We did notice that for the first time in his life he was less tolerant of “cold” . He had always been able to go outside in the winter in T-shirts without blinking. Also, the only indication we had that we got the dosage right was when he would complain of “dizziness’ directly after receiving the drug. The dizziness would last for about 15 minutes and then would be gone. In other words if he did not say he was dizzy we would know he did not get the right amount to help his behaviors.
So what happened?
Josh has a lot of sensory issues and so administrating the drug was very difficult. He tolerated us giving it to him but sometimes he would pull away and we were never sure exactly how much he was getting.
It also went down his throat and burned his nose.
This drug when the right dose was achieved was truly like a miracle. The decision for us to continue to try ketamine is totally based on Josh’s quality of life, his ability to learn while taking ketamine, and the ability for us as his parents and his caretakers at school to keep him and everyone who comes in contact with him safe.