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.
Later that day we walked to an eye appointment together. We passed a dog in close proximity to Suzie and I could feel myself tense up, anticipating her response. She was usually terrified of dogs, to the extent that she would not walk down a street if she saw one all the way down it. This time, though, she walked right by the dog, noticing it but not at all frightened. We then stopped in a convenience store and, where she would usually go into “Mission Mode” wanting everything in the store and digging in when told “no”, this time she remained relaxed and cheerful. The blessings of that day continued, and faded over the next two-to-three days, eventually leaving her right back where we had started.
Dr. Papolos and I talked about this experience and the way the ketamine seemed to “re-set” Suzie’s brain, lifting the symptoms of bipolar to reveal what I consider to be her “true self”.
Shortly after the MRI experience, a friend of mine out in Oregon began using Ketamine nose spray as a PRN for her daughter who had rages very similar to my daughter in nature and reactions to meds. She described to me the miraculous results, and again the surprising discovery that the benefits of one spray of ketamine seems to last for days following, allowing her daughter to do and experience things she was not usually capable of, like sitting down to dinner at night with her family.
My friend’s daughter later began using the nose-spray therapeutically with amazing results. Finally, after very close examinations of the possible risks (primarily the lack of documented research and all the unknowns of regular use of this med) with Dr. Papolos, Suzie’s Dad and I agreed that the benefits may very well outweigh those risks.
In January of 2009 we began using the ketamine nose spray therapeutically with Suzie. Since that time, 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, Daisy 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 Suzie has had a rage!
Suzie’s frustration-tolerance increased tremendously on the ketamine. After six years we were able to discontinue speech — no longer needed. Cognitively Suzie 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 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.
Suzie used to overheat quickly, sweating profusely at times, especially in her sleep. Fans helped, but did not eliminate the problem. ketamine did. Suzie 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.
I feel so incredibly grateful to Dr. Papolos and to this medicine, as I feel it is giving my daughter — and all of our family — a life she/we just could not have lived prior to the ketamine. I am happy to share this experience, hoping and praying it will help other children as it has Suzie.
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 Suzie 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 Suzie enjoys playdates 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 existance before due to Suzie’s bipolar disorder. Today, we have a whole new life. Daisy 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 Dr. Papolos and to ketamine therapy!
Every now and then we still see some aspects of Suzie’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!!
I hope this helps in your decision, and I hope and pray for stability for your children and joy for you and your family.
All the best,