Ever since I found the chocolate stash on Friday, I have been thinking about its implications for the oxytocin experiment and for his overall metabolic health.
My first reaction was one of betrayal and disappointment- how could he lie about eating chocolate behind my back when I had asked him and given him MANY chances to be truthful with me (without risk of punishment) about any extra food consumed? How many times had I explained to him that any and all incidents of extra food eaten or not eaten, weight gained or lost, changes in mood, behavior, etc. would simply be treated as data for the experiment (and not as a means to judge his character or goodness/badness as my son)? How many times had I tried to impress upon him that having incorrect information (falsified or omitted) could be medically unsafe for him since some of his medications are adjusted based on his observed and self-reported symptoms/behaviors? In fact, I expressed these things to him every day, several times a day, and received his nods of understanding and agreement to be transparent in communicating these important things with me. Discovering the chocolate frustrated me as the "P.I." of the experiment but also, admittedly, angered me as his mother- after all, I have worked very hard to find a way to provide this off-label hormone to him in order to help him and his secretive chocolate eating has felt like a disrespectful insult to my efforts to help him with the most painful problem in his life.
After talking and writing out my feelings and receiving feedback from others, my second reaction was an "AHA!" to the nature of his problem and of this experiment. I can see now that my expectations of him and this experiment were unrealistic for a couple of reasons:
1) Even without actual risk of punishment and even if he believed my sincerity, he still has little to no motivation to be truthful because it would risk his having to reveal to me that he had a secret cache of chocolate. If he wanted to keep that chocolate, then why would he tell me that he had eaten it? He knew that it would be at the risk of my asking him if he still had it and that perhaps I would ask him to give it up.
2) Just like I wouldn't expect a wolf to behave like anything other than a wolf, why should I expect Sasha to behave any differently? Having an intense appetite, seeking food (especially carbohydrates) and lying about food are all part of the syndrome of HO. I can't study HO or do an experiment on a subject with HO if I don't take these factors (symptoms) into account. To treat Sasha like a person who is capable of revealing the truth about his appetite or food intake is like expecting an alcoholic to be able to monitor his alcohol intake and make accurate reports on his daily alcohol consumption while working as a bartender! Crazy, right?
If I had properly anticipated the two insights listed above, I would have never even relied upon Sasha's self-reports as factors in the experiment! His reports, feelings, and thoughts should never have been even taken into consideration and in fact, I now see that his reports are completely unreliable! The ONLY meaningful data are objectively observable data (which I will document in another posting). Without intending to be judgmental on any moral grounds, I know that my son's syndrome of HO makes him a liar when it comes down to issues pertaining to food and that he is incapable of reporting accurately about what he eats, how much he eats, etc. Furthermore, his relationship to the experimenter (me) confounds the accuracy of the reports even more since I am his mother and since he very likely does not want to disappoint me by having to present to me any unfavorable data (e.g. eating chocolate on the side).
The other important factor concerns experimental controls: securing his environment to keep it safe and secure from all food may not be possible to do. Sure, we can try to search his room and pockets and backpack on a daily basis and we can even put an alarm on our house... but we aren't' with him 24/7 and we can't guarantee that he hasn't found another source of candy outside of the house. When he is at school or camp, it doesn't take much for someone to look the other way and for Sasha to find a way into someone's backpack or lunch bag... we are not in the business of operating a maximum security prison. We are just a regular family living in a home, going to work, and sending our kids to public school.
Another big question I have is about the timing of this candy collection...how long has he been doing it? When did it start, before or after oxytocin? If it started before oxytocin, has it been better or worse since starting oxytocin? If it started after oxytocin, is this what explains what appeared to be his lowered appetite (filling up on chocolate before meals)?
My original goals in starting this oxytocin experiment were as follows:
1. To see if oxytocin would help reduce Sasha's intense hunger and food obsession
2. To see if oxytocin would help to reduce incidences of food seeking/stealing
3. To see if oxytocin would improve his social motivation (and increase his interest in having social interactions/friendships with peers)
I am tempted to say that oxytocin is failing to help my son with his appetite and food seeking so far but I can't quite say that yet... one mom remarked to me that the oxytocin must be working because we found signs of his ability to pace himself. In other words, he didn't gorge on the entire supply of chocolate in one sitting! Her child who has the same condition would have eaten the entire supply of chocolate at once so surely this was a sign of improvement? Another mom remarked that even "normal people" (people without HO) have their secret stashes of treats and why should Sasha be any different especially if he was prohibited from enjoying these treats in a legitimate way? After all, can't the prohibition of chocolate intensify the psychological drive to eat it even more? Could we regard his chocolate eating as a separate (but not entirely unrelated) issue, one of Chocoholism (that he truly inherited from his father?!)
Again, I am left with more questions than answers but as I move forward, I know that I will need to manage the lack of controls (food security) and rethink the dependent variables of this experiment... what am I exactly measuring that will give me reliable data to answer my research questions (numbers 1-3) listed above??? I will think about this and write about this in my next posting. Stay tuned.
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