Our trip into the world of medical intervention has been a bit of a roller coaster ride. It was one month ago today that we started our youngest son on the recommended Attention Deficit Disorder (ADD) medicine. Because of my strong reservations regarding medications, they started him at the lowest possible dose for his age and size. There have been two small increases since then, the last being this morning's dose. I will not give him another dose until I talk to his neurology team in the morning.
The very first time I gave our son his new medicine, I did so with equal parts hope and trepidation. He and I were spending a quiet day alone at home. I was planning on doing some housework and grading some papers. About mid-morning, I thought I should try a small experiment to see if I noticed any difference in his behavior. Typically, asking him to clean his play area in the basement results in whining, tears, and a long drawn out process that usually results in me "helping" him do most of the picking up and putting away. Usually, I have to identify one type of toy, for example blocks, and ask him to concentrate on picking up just those items. This process has helped me gain the most success when it comes to getting him to pick up after himself. It still takes hours. I'm not exaggerating! It is stressful and exhausting for both of us. On this "experimental morning", it took my son ONE HOUR to clean the basement. He was enthusiastic about going to clean it up. A couple times through the process he called me down to show me his organization techniques or to ask me to take some dirty clothes upstairs. AN HOUR! When he was finished, he came up and asked for lunch. After lunch he proceeded to voluntarily go clean his bedroom. I felt a mixture of relief, joy, and guilt. If this medicine was all it took to help him find his focus, why had I waited so long to give it to him? I wondered if I had been holding him back from his true potential. I was so relieved that it might be this simple.
By mid afternoon, the medicine had worn off. His brother and father came home. Life returned to our version of "normal". We went to our fire hall for our annual family dinner and hay ride. Our son vibrated! They warned us he may experience "rebound" energy when the medication wore off. I'm not sure if this was rebound energy or just plain old excitement and over stimulation from one of his favorite activities of the year. He was okay. His behavior was appropriate. He just bounced.
After a week and a half, I needed to check in with his neurology team regarding our progress. We had not seen any significant change in behavior or impulsivity after the first day. His team at school was reporting no change in behavior. Unfortunately, if anything, they reported that he seemed to need more non-verbal and verbal prompts than usual to help him stay on task. His neurology team doubled his initial dose upon hearing our report.
Family and friends soon began to comment on how much more focused our little guy seemed to be. He seemed more content with himself and proud of his accomplishments. The desire to clean up and keep things cleaned up continued after doubling the dosage. A new trend that concerned us a little began to emerge. He seemed much more intense in his need to complete tasks. If a job needed to be abandoned or postponed for a meal or another activity, he would prefer to skip the meal or activity rather than abandon or postpone his current task. He seemed to be displaying less impulsive behavior but seemed to be showing more obsessive behavior. We questioned if that was just personality traits emerging or if it could be a related side effect from the medicine.
School continued to report that they were seeing no improvement. They were continuing to need to provide a higher than usual number of verbal and non-verbal prompts to keep him on task. A team member that has been with him from the beginning also commented that he appears to be more disheveled and relayed an incident in which he became upset trying to remove his coat before it was even completely un-zippered. She also had concerns with his increase in "mouthing" objects like his clothing, papers, books, etc. These comments upset me. We were seeing definite improvement in some areas. Sure we had some concerns but I felt we have to be realistic. His issues are neurologically based. Medicine isn't going to be a panacea, a cure-all. Some of his "quirks" won't be cured by medicine. We have to be realistic in our expectations.
In light of the feedback from school, his neurology team decided to slightly elevate his dosage for a third time. I need to clarify that it is still a VERY low dose. Today was his first day on this new dosage. We had a breakfast fundraiser at our fire hall this morning so it was an ideal situation to test his response to the new dosage. For the most part, his response was very favorable. He did a series of small jobs with his "old ladies" including putting silverware in paper sleeves; helping set up tables; putting out creamers and sugars; and cleaning up afterwards. The only fly in the ointment was one of his "blow up" episodes towards the end of the breakfast. I was tied up cooking eggs and not paying attention because he had been kept busy all morning by the older ladies at the fire hall. I became aware that he was becoming over stimulated when I realized he was running around using a "fart book" behind people. When it escalated to doing it behind people his didn't know, I asked him to please return the book or give it to me to put away. He escalated very quickly. The old "rain man" repetitive phrase behaviors emerged. The glazed "I'm not really hearing you" look came into his eyes. At that point, I scooped him up and went out the back door. It took several minutes of quiet out back for him to regain his composure. He kept taking deep breaths and saying "I'm calm now." but continued crying and repeating the same phrases like a broken record. I said "Do you even know why you are this upset?" He told me no; threw his arms around my neck; and started to cry in earnest. It absolutely broke my heart because I genuinely think he had no idea why he was that worked up. Fortunately, he was able to regain control. He went back in and helped one of the older ladies begin to clean up her cart and table area without further incident but continued to look weepy for at least another ten to fifteen minutes. Where was this intensity coming from?
I very much blamed myself for the incident. It felt as if I had become too complacent with the medicine and took for granted that those who knew him would help keep an eye on him. I know that once he becomes over stimulated, he can't pull himself back without an explosion. Missing the signs that lead up to that, meant I missed my opportunity to prevent the explosion. I felt rotten. It was my fault, not his.
The rest of the day progressed pretty quietly. His dad was out hunting on the last day of archery season. His grandfather took his older brother out turkey hunting. He hung out with his grandmother and I at our house. There was an intensity to his interactions, an edge at times, but nothing that wasn't manageable. His grandparents stayed for dinner after everyone finally made it home. As a result, they got to bed about a half hour later than usual. An hour after that, he was still wide awake and buzzing. He came down to write a list of things he needed to do tomorrow. When I went to collect him to see if he would come cuddle with me to get him settled in for the night, he replied "I have to write this down to get these words out of my head." I was concerned. This is a guy who falls asleep literally within minutes of being put in bed. It was two hours past his bedtime and he had "words in his head?" After another half hour of cuddling and still no sleepiness, I asked his dad to get him a dose of children's Benadryl. Our neurologist had told us that some parents have had to resort to this after an adverse reaction to a medicine. Was that the case this time? As it kicked in, he finally asked me to tuck him in upstairs.
The ADD medicine should have been out of his system by mid afternoon. Was this a medicine side effect? Was it a neurological side effect from introducing the medicines into his system? Was it just a restless night? I don't know the answers to the many questions that the last month has given us. Why are we seeing progress but the school isn't? Why the increase in obsessive behaviors? Are the small gains we've seen worth the obsessive behaviors we've seen? Can this medicine have a long lasting boomerang effect that lasts for hours? Is this the wrong family of medicines for our child and his condition? Are we treating the correct neurologically rooted behavior? Most importantly, will this ever get easier? Will we ever experience "normal"? What will "normal" look like for us?
I will not be giving him any more doses of any medications until I personally talk to his neurological team. We need to have some hard questions answered. I know this is a process. I'm committed to seeing this through. I just pray we have made the right decision by going this route. If it isn't the right direction, I pray for clarity and insight. I most strongly pray for answers. In His time and in His way... I just pray it's sooner rather than later. Please Lord, let it be sooner.
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