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.
D. used to overheat quickly, sweating profusely at times, especially in her sleep. Fans helped, but did not eliminate the problem. Ketamine did. D. just attended horse camp for a week in the summer heat, no problem. We keep her well-hydrated, of course. But the heat doesn’t bother her like it used to. And she no longer needs the fans or any other special conditions when she sleeps. She sleeps through the night now, uninterrupted. That in and of itself is a miracle!!
How much of this can we attribute to the ketamine? A lot, I am convinced. I’m sure her own natural development and the elimination of other meds has contributed to these leaps forward. But there is an unmistakable “resetting” of her brain that occurs with each administration of the nose spray. She repeatedly thanks me after getting it, telling me how much better she feels. She is quite aware of the difference! And now that she has been on it for quite some time and we have “tweaked the dosing”, there is virtually no lag in her mood state or stability level when she is due for her dose. She is keenly aware of the benefit of this medicine and the benefits it has brought to our lives.
There are still times when I wonder and worry about the physical ramifications of this long-term therapy with a medicine with such little (or no) research, especially in this population. But the reality is my daughter is healthier physically than she has ever been. Since the elimination of Seroquel (made possible by the ketamine) she has thinned out and is far more active than before. It is still possible, of course, that there will be long-term side effects we are unable to foresee right now. But the bottom line is that she has a childhood to live and enjoy right now, and that outweighs the risks for me.
I used to wonder if D. would be able to live independently some day. Now I wonder where she will attend college. We used to have trouble getting one block to the grocery store and back without a rage, a scene, a struggle. Now we can ride six hours in the car with her new step brother and sister without a problem. We used to have to plan and limit every social interaction, every playdate in anticipation of what buttons might be pushed, what triggers might cause an unpleasant, unsafe situation. Now D. enjoys play dates gallore with her friends, constantly surprising me with her ability to handle and negotiate conflict, excitement, stimulation, and life in general. My daughter and I led a very lonely, isolated existence before due to D’s bipolar disorder. Today, we have a whole new life. D. has a new stepfather, siblings, and a new addition on the way. Years ago, all of this would have been too much for her — and for the rest of the family. Today, it is possible, and it is a joy, thanks to ketamine therapy!
Every now and then we still see some aspects of D.’s bipolar peeking through. Though markedly improved, she still experiences some moments of separation anxiety. She is still prone to “magical thinking”. Every now and then she has a tantrum (more pronounced than other children her age), though I’m not sure we can even call it a rage anymore. All of this, though, is manageable and nothing compared to the challenges she used to face every single day because of her illness. In fact, all of this seems to be part of who she is, engrained in her personality, and that is OK. We love her and are so very proud of her!!
We are in the process of making this decision now for our 16 year old son. I have been struggling with weighing the current possible benefits with the potential long term risk. Bottom line, without some major change, I cannot see our son living a very safe or happy life. Thanks for sharing your story. I hope that soon we will be able to share ours and be a source of encouragement to others.
We are in south Georgia with a 13 year old son with bi polar disorder. We seem to be having trouble finding a doctor that has an open mind to the use of ketamine. We need some help.