The use of medication for behavior management of special needs children and adults has grown substantially over the years. Some parents swear by it and some hate it. I can see that it has given Billy Ray some years but that his life has been changed negatively because of medications too.
Billy Ray has multiple diagnoses including but not limited to Down Syndrome, Autism, Bipolar, and ADHD. Temple Grandin told me that if a child is not diagnosed with Autism by 3 it isn't usually considered Autism. I know realize that Billy Ray had more mild Autism by then. I never reported things like intolerance for noise especialy fireworks, because I didn't understand they weren't a part of his Down Syndrome. Had I given the developmental pediatrician the right information the diagnosis may have come sooner.
At 5 Billy Ray began being treated for ADHD and at 7 Bipolar. The balancing act of that treatment has been a nightmere of the worse kind. He quickly builds up a tolerance for medications so doseages have to be adjusted regularly.
Just before his 14th birthday the medication for ADHD was changed because the school teacher complained of hyperactivity at school though we were not experiencing problems at home at that time. Two months later the mood stabilizer he used for bipolar (an anti seizure med) began negatively impacting his blood count and had to be weaned. The psychiatrist weaned it very carefully and slowly. The day following his last partial dose Billy Ray experienced a series of severe seizures believed to have been caused by the medication he was using for ADHD.
The first two months following seizures he was alternating between zombie and wild man. Our quiet, albeit active, little boy who was high functioning could now become aggressive and destructive. The pediatrician told me that most kids who experience seizures like this will return to what was normal for them before the seizures within six months. It is clear now that the little boy I put on the school bus that February 1997 morning (he had the seizures at school) is never coming back to us.
The same medication believed to have caused the seizures in Billy Ray has been credited by a highly successful Autistic lady has helping her substantially. For that reason I don't name the medication here or in my book. The reality is it changed lives some for the better and in Billy Ray's case for worse. The risk is there and sometimes the child loses the gamble.
Following the seizures that day he was put on another anti seizure. He does not have an ongoing seizure problem but he uses it for mood stabilization. It has worked when nothing else did. We have tried to change it a few times but nothing works better. However, side effects of that can be pancreatitius and diabetes. As I have been sharing we are now dealing with diabetes. Next week he will have a catscan to determine the pancreatitius next week. We know that his pancreas has fluid and is enlarged but that could have happened when he experienced Appenditius this summer. It seems to me that the same drug that has given him more quality in his life has now turned on him.
To medicate or not to medicate... that is the question that haunts parents. Would I do it again knowing what I know now. Probably not.
I didn't learn about Autism Research Institute and Dr. Bernard Rimland until after Billy Ray experienced the seizures and had symptoms of severe Autism. If I had known earlier I would have tried diet and nutritional supplements first. When I learned of the nutritional problems many people with Autism and other disabilities experience, we studied constantly, worked with our pediatrician, physchiatist and a naturopath to try various things spending thousands of dollars we couldn't afford. I believe that the chances of those interventions working was substantially reduced by years of damaging effects on medications.
In addition to the mood stablizer Billy Ray has been on numerous psychiatric medications to control his aggression. When he seemed to be sick constantly I worked with his pediatrician to withdraw most of the medication except the mood stabilizer, a mild ADHD med and medication for severe agression that we use only as needed .
Many of the observation, adapting and advocating methods I share in Parenting Your Complex Child came out of my attempt to maintain him on the least amount of medication while having the highest quality of life. I really believe that his life would have been better I had understood those methods when he was younger.
It is a difficult decision for parents to make faced with the difficulty of controlling behavior that could be dangerous to the child or others. Some medication may be unavoidable. However, consider your options carefully and look at other possible interventions too.
For those of you asking, Billy Ray's blood sugar continues to improve. It was in the normal range again this morning. Yes!!