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 8 yrs 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.
Ultimately it was the hope of a better more fulfilling life for my son that drove my decision. Unlike some children who are trying ketamine, my son was considered relatively, clinically stable going into it, so we don’t see the drastic changes that other kids might have. However there are considerable improvements. One of them we can’t necessarily see but it’s there. As if bipolar disorder weren’t enough for my son to deal with he has also had periods of alopecia (hair loss) since he was 2 yrs old. This dermatologist we took him to said that it was caused by stress. He had lost almost all the hair on his head at one point but most recently he has had the loss of hair on his entire body including his eyelashes and eyebrows. After a few weeks on ketamine we were sitting outside in just the right amount of sunlight when I noticed his eyelashes were starting to grow back. After further inspection of his body we are seeing patches of hair all over. He hasn’t had eye lashes for almost 2 yrs. I believe the ketamine is giving him the ability to have an internal calmness. He once said after taking the ketamine, “I always wished I could feel this calm.” This still brings tears to my eyes. He is also living a fuller life. He loves to fish but has been limited by the fear of a shark jumping out to eat him like in his nightmares. Now he can wade in the water and access further fishing holes without the fear. He can get another pole when the fishing line tangles without melting down. He can go upstairs in our house which has been a no John zone for the last 5 years due to previous hallucinations of monsters. He can take a shower without calling me in to check on him every minute. He can go to the bathroom without looking behind him and running down the hall to escape the presence he feels lurking behind him. He can sleep through the night without needing the room to be cold and fans blowing to minimize night sweats. Even his handwriting has improved. He attended a tutoring camp without a phone call home or a negative remark about his behavior upon pickup daily.
The frustration surrounding academics is a trigger for John, so it was to my surprise when I picked him up on the last day of camp that the teacher actually came out to tell me what a pleasure it was to have him in her class. “He is the most polite, sweet, helpful kid,” she said. I can’t explain the joy I felt in my heart. For once someone else could see the good in him. It has always been there, it has just been overshadowed by the darker side of his disease. Just as I was working on this post, John was invited to go with his grandparents to visit his cousins in another state for a long weekend. This was the first time they have ever volunteered to have him stay with them more than just one night. In addition to the fact that they would be more than 5 miles away from me. These little things are adding up to a significant change. We are still in the ketamine trial phase and it will be sometime before we will know if he will be able to replace all his other medications with ketamine alone. So far the results have been positive, and I look forward to a new chapter in John’s life. Thank you, Dr. Papolos for your commitment into research and courage to challenge the way we diagnosis mental illness in children and the way we treat this disease. Thank you, for giving my son the gift of a future.
Carpe Diem,
Mary S.