It's funny how quickly things change in our world... just a few weeks ago, I felt devastated and so lost when Sasha was caught stealing candy bars from the supermarket and we detected more intense food obsession. Luckily, things calmed down a bit after we lowered him from the 10-day trial on the 9 iu dose, resumed the 6 iu OT dose, and added back his melatonin (this time at a recommended, lower .3 mg dose).
Don't get me wrong, I'm not implying that our hyperphagia woes are fixed...! However, I will say that Sasha is at his all time lowest BMI (23.1 last weekend), his metabolic health is good (he no longer hypersecretes insulin and his cholesterol panel is WNL as are all other general markers for his metabolic health.) Our original intent for this oxytocin experiment has always been (and still remains) focused on helping Sasha develop a normal and healthy relationship with food. As you have read in this blog, Sasha's HO has caused him to have an intense preoccupation with food which has caused him to overeat, hoard food, steal food, and be driven to the point of distraction by food. From the time he got out of surgery until recently, in order to prevent the negative consequences of his behaviors, we have relied upon locking up food and strict food policing . Of course, we would have continued this restrictive and torturous lifestyle out of necessity if we had to because it was the only way we knew to keep Sasha safe from eating without discretion and engaging in other forms of food seeking.
As best as we can tell from living with Sasha and observing him closely during these past 8 months on OT, he has decreased his intense drive for food and appears to have an easier time with satiety and with his ability to focus on other things in life besides food. Up until now, our food exposure has been limited to keeping the fridge open during the day (still locked up at night to prevent food foraging at night) and to giving him light supervision while he makes his own lunch. We have tried other forms of exposure (unlocking the cabinet for short periods of time) but it was never very successful because it always felt too scary for us and too tempting for him. Well, now we believe that we are ready for a new exposure idea...
In this exposure, we will allow Sasha to have free access (24 hours a day) to his OWN snack cabinet. The fridge will remain unlocked during the day. We will estimate the amount of snack foods he eats in a given week (to include all foods he ingests; breakfast, lunch, dinner and snacks) from the snack cabinet. The cabinet will contain a (generous side of a) week's supply of these foods and will remain unlocked for Sasha's use ONLY. The rest of the family will keep snacks locked up in a separate cabinet for our consumption. We will discreetly check the "inventory" of his snack cabinet during the week to see how Sasha is pacing himself but we will not police him so that he can make his own decisions about how he eats the foods. If he eats 7 days worth of snack foods in two days, we will note it and try to coach Sasha to see if he can learn how to better pace himself. We will expect there to be a learning curve as Sasha gets accustomed to pacing himself and to controlling himself around the accessible food. We will expect some weight gain as well while he is in this learning phase. If Sasha reports that he is anxious or feels driven to distraction by the available food, we will do what we can to support him and to make adjustments to the exposure, as needed.
This exposure will require some valuable learning and will hopefully accomplish the following:
1. Having access to his own stash of snack food will give him more security in knowing that food is something that he has the right and ability to control.
2. Having access to snack food 24 hours a day will make it unnecessary to hoard and stash food in his room since it will be accessible whenever he wants it.
3. Having access to his own snacks will give him the motivation to ration his own food- we will encourage him to bundle his rations up in single-portion sizes so he has a better idea of how much to eat.
4. He will be less likely to "steal" food since he will only be stealing from himself!
5. If Sasha ends up having a hard time managing the ability to self-control his food, he has the motivation to tell us and to ask for support since he does not want to put on extra weight or be unhealthy.
6. As Sasha becomes accustomed to the free access to food, it will decrease the allure of the food and cause Sasha to have a more mundane relationship to food (rather than seeing it as a "forbidden fruit", something to crave and covet).
We definitely anticipate that there will be some challenges especially in the beginning- he may overeat, he may not be skillful at rationing his food, he may demand more food after he runs out of his ration (and we will feel conflicted about how to handle it), he may gain weight, he may be driven to distraction by the availability of the food, he may even wake up in the middle of the night to eat, and Kitchen Bitch may just rear her ugly head and be unable to contain herself at times. I predict that all of these things (and more) may happen as we adjust to this exposure. In theory, over time, Sasha will learn how to have a more normal relationship with food- eating when he is hungry, not eating when he is not, knowing how to practice portion control and how to ration his food in a reasonable way. It sounds good in theory but the reality may be a very different story! Am I nervous? Hell, yes. I'm sure he is too. However, this is why we did the oxytocin experiment in the first place and we must now put on a brave face to put Sasha and oxytocin to the next test...all we can do is try.
Wish us luck!
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