It has become apparent to me that the naltrexone has not been doing what I hoped it would do- that is, to help deter his impulsive/compulsive behavior re: hedonic food and non-food seeking (there has been regression with his taking of non-food items as well). As I have already mentioned, I believe that OT/NAL has been beneficial for his overall metabolic health- better satiety, weight loss, decreased obsession/anxiety re: eating. He had even been handling the unlocked food cabinet just fine. But then the sugar overload happened which may have triggered a vicious cycle of wanting more carbs, eating more carbs, wanting more carbs, etc. I don't know for sure why the OT/NAL treatment has been working for non-high carb foods but has not been working for hedonic (carb) food/non-food seeking. Of course, there are many (overweight) people (regular folks who do not have PWS, panhypopituitarism, or brain tumors affecting their HPA-axis system) who have problems controlling themselves around sugar and carbs so perhaps his behavior is not out of the norm?
What would happen if we discontinued naltrexone? Would his appetite/food seeking get worse, stay the same? What is the optimal outcome I can expect from OT? I have more questions than answers and I will continue to plug away at the experiment to try to understand what is happening on a scientific level. I may end up discontinuing naltrexone after a few weeks when he is back on his baseline diet (currently on a sugar/carb detox which ends tomorrow) to see if there is any effect but that is a topic for another post. My many questions remain unanswered at this point and despite my best efforts to understand, I do not have the answers. For these reasons, I know that I cannot rely on chemicals or scientific journals alone to manage them.
Once again, I turn to the Serenity Prayer: "God, grant me the serenity to accept the things I cannot change; the courage to change the things that I can; and the wisdom to know the difference."
What is changeable? I believe that I have been working hard on changing what I can- providing a healthy diet, education about nutrition, emotional support, cutting-edge experimental medicines informed by my research efforts, psychotherapy, coping tools, and a secure and well-supervised home and school environment. When he had his recent relapse, I made a plan to detox him from sugar and carbs and we are now nearing the end of the 10-days. After tomorrow when the 10 days are over, we will begin to gradually add back complex carbs (whole fruit, then modest servings of other complex carbs like steel cut oats, sweet potatoes, legumes) and hope to get him back on track with his previous regimen including stocking the house with these complex carb food items again and keeping cabinets and fridge fully unlocked. These are the things I can control and that I intend to continue for Sasha.
What is unchangeable? A lot! I cannot control Sasha's feelings, urges, choices and behaviors. I cannot control the environment in which he finds himself outside of home (school, friend's houses, camps, etc.). I cannot control his exposure to tempting items in these various environments. It is sometimes hard and humbling to admit these things but it is necessary to do so in order to have a degree of sanity- I tell my patients that a sure fire way to keep feeling frustrated is to continually try to change feelings/things/situations/people that are not within one's control to change. Acceptance does not require one to like or condone the situation. Acceptance only requires that one see reality for what it is in the moment... "it is what it is."
Even as I write this, I am struggling with this very act of acceptance. I guess I have been trying to practice the opposite of the serenity prayer- by "changing the things I cannot accept" rather than accepting the things I cannot change. For now, I intend to continue to do everything in my power to "change the unacceptable" but I also know that I need to learn about accepting things I cannot change. If only I had the "wisdom to know the difference."
Thursday, June 22, 2017
Saturday, June 17, 2017
93) Regression and relapse- lessons learned and questions begged
I'll get right to the point. Sasha had a relapse that we noticed last week. We think it started three weeks ago during the weekend he had some extra sweets-remember, the cake, ice cream and pie? Hindsight is always 20/20, of course, so in retrospect, I believe that it was the exposure to the extra sweets that probably set him off to start craving carbs again. Sure enough, in the last couple of weeks, we noticed that he was regressing to some of his old behaviors. One morning I found extra bread and crackers tucked away in his backpack. Another day, his after school teacher informed me that he needed some more intense monitoring around a track team end-of-the-year party (to which he was not invited), another teacher reported he had taken some potato chips from another child's backpack, and on a third occasion, I witnessed him sneaking some cookies into his pocket at a potluck function we attended.
When all of these things started to add up, I finally saw this as a regression to a version of his old behaviors. Interestingly enough, he was not displaying exactly the same behaviors from his pre-OT/naltrexone days. One reason it took us a few weeks to catch on was because he was continuing to appear sated- he did not finish all of his food on his plate, he would bring home unfinished lunch, and he appeared to be pacing himself with his (non-"carbolicious"- his dad's term) snacks. In his pre-OT/naltrexone days, his food seeking was less discriminating and he appeared to be much more anxious to eat anything (not just foods high in carbs).
I'm not naive to the idea that people eat for reasons other than to satisfy hunger- that is why I added the naltrexone. But it didn't work to deter his hedonic eating of carbs. Why not? That is a question that I do not know how to answer. After reading through some papers, I suspect that it may have to do with his broken hypothalamic-pituitary-adrenal axis (HPA) system (including but not limited to his adrenal insufficiency) and his brain's inability to engage the negative feedback loop that informs ACTH to stop producing cortisol when there is enough of it in the system. This is just my guess based on my layperson reading of the literature. The hedonic feeding system (mesocorticolimbic) is also involved in a complex manner with the HPA but I am, unfortunately, not educated in this area or smart enough to fully understand the complex workings of these systems.
I hope that someone else can help me understand these questions that have been raised in my mind as a result of his recent relapse:
1. What is the neurobiological difference between those with HO who have hyperphagia and those who do not?
2. Is Sasha's recent carb-seeking behavior related to a factor explained by his HO typology (as a person who engages in hyperphagia) OR is his recent carb seeking behavior better explained by a separate phenomenon of addiction (reward-pathway) behavior?
3. What is the neurobiological difference between someone with hyperphagia (Sasha's type) and an (drug) addict?
4. Why did naltrexone fail to deter him from carb-seeking and does his defective HPA-axis system have anything to do with it?
While I await some possible answers from the experts, I will focus my energy on helping Sasha get back on track with his eating habits.
As for how we are treating Sasha's regression: just like with an alcoholic/addict, we are considering it a relapse. In order to get the addiction cycle under control, we've decided to do a 10-day sugar/carb detox. For 10 days, we will attempt to clear the addictive cycle out of his system by "detoxing" him from foods that contain sugars and carbs. He is permitted to eat unprocessed foods including meat, non-starchy vegetables, nuts, cheese, eggs, and other fats (butter, olive oil, coconut oil). He is not permitted to eat anything made from flour, other grains (rice, oats, corn, etc.) all fruit, legumes, starchy vegetables, non-sugar sweeteners, and of course all types of sugar. We decided to optimize his willingness to participate by showing him some short educational videos on sugar addiction and the way to break the cycle. To our delight, Sasha was totally on board with it. He identified strongly with being a sugar/carb addict and said that he did not like the feeling and wanted to stop the addiction cycle. We are very glad that he is so willing to participate. Today, we are on day 4 (out of 10 days) and he is doing very well so far! His weight was creeping up little by little over the last few weeks (now we know why!) but in the last week, he lost .7 kg (1.5 pounds) thanks to this sugar/carb detox. After 10 days are up, our plan is to slowly reintroduce a modest amount of complex carbs (fruit, whole grains, etc.) but we will definitely be wary about those sugary foods! First things first- we need to get through these 10 days and they will be tricky because he will be attending summer camps and will not have the assistance of his para-educator aides as he did in school. Even on day 4 (today), he is already reporting that he is liking the way he feels and is relieved to be free of his carb cravings. We can only hope that he is motivated enough to keep up this regimen while being tempted by carby snack foods that will be served at camp.
Keep your fingers crossed for us, please!
When all of these things started to add up, I finally saw this as a regression to a version of his old behaviors. Interestingly enough, he was not displaying exactly the same behaviors from his pre-OT/naltrexone days. One reason it took us a few weeks to catch on was because he was continuing to appear sated- he did not finish all of his food on his plate, he would bring home unfinished lunch, and he appeared to be pacing himself with his (non-"carbolicious"- his dad's term) snacks. In his pre-OT/naltrexone days, his food seeking was less discriminating and he appeared to be much more anxious to eat anything (not just foods high in carbs).
I'm not naive to the idea that people eat for reasons other than to satisfy hunger- that is why I added the naltrexone. But it didn't work to deter his hedonic eating of carbs. Why not? That is a question that I do not know how to answer. After reading through some papers, I suspect that it may have to do with his broken hypothalamic-pituitary-adrenal axis (HPA) system (including but not limited to his adrenal insufficiency) and his brain's inability to engage the negative feedback loop that informs ACTH to stop producing cortisol when there is enough of it in the system. This is just my guess based on my layperson reading of the literature. The hedonic feeding system (mesocorticolimbic) is also involved in a complex manner with the HPA but I am, unfortunately, not educated in this area or smart enough to fully understand the complex workings of these systems.
I hope that someone else can help me understand these questions that have been raised in my mind as a result of his recent relapse:
1. What is the neurobiological difference between those with HO who have hyperphagia and those who do not?
2. Is Sasha's recent carb-seeking behavior related to a factor explained by his HO typology (as a person who engages in hyperphagia) OR is his recent carb seeking behavior better explained by a separate phenomenon of addiction (reward-pathway) behavior?
3. What is the neurobiological difference between someone with hyperphagia (Sasha's type) and an (drug) addict?
4. Why did naltrexone fail to deter him from carb-seeking and does his defective HPA-axis system have anything to do with it?
While I await some possible answers from the experts, I will focus my energy on helping Sasha get back on track with his eating habits.
As for how we are treating Sasha's regression: just like with an alcoholic/addict, we are considering it a relapse. In order to get the addiction cycle under control, we've decided to do a 10-day sugar/carb detox. For 10 days, we will attempt to clear the addictive cycle out of his system by "detoxing" him from foods that contain sugars and carbs. He is permitted to eat unprocessed foods including meat, non-starchy vegetables, nuts, cheese, eggs, and other fats (butter, olive oil, coconut oil). He is not permitted to eat anything made from flour, other grains (rice, oats, corn, etc.) all fruit, legumes, starchy vegetables, non-sugar sweeteners, and of course all types of sugar. We decided to optimize his willingness to participate by showing him some short educational videos on sugar addiction and the way to break the cycle. To our delight, Sasha was totally on board with it. He identified strongly with being a sugar/carb addict and said that he did not like the feeling and wanted to stop the addiction cycle. We are very glad that he is so willing to participate. Today, we are on day 4 (out of 10 days) and he is doing very well so far! His weight was creeping up little by little over the last few weeks (now we know why!) but in the last week, he lost .7 kg (1.5 pounds) thanks to this sugar/carb detox. After 10 days are up, our plan is to slowly reintroduce a modest amount of complex carbs (fruit, whole grains, etc.) but we will definitely be wary about those sugary foods! First things first- we need to get through these 10 days and they will be tricky because he will be attending summer camps and will not have the assistance of his para-educator aides as he did in school. Even on day 4 (today), he is already reporting that he is liking the way he feels and is relieved to be free of his carb cravings. We can only hope that he is motivated enough to keep up this regimen while being tempted by carby snack foods that will be served at camp.
Keep your fingers crossed for us, please!
Wednesday, June 7, 2017
92) Challenges of our dual roles: mother/experimenter, son/subject
Life with Sasha in an unlocked kitchen is chugging along but is not without its challenges. One particular challenge relates to the dual roles that we each play.
We started with a partially unlocked kitchen (6 weeks) and then transitioned to a fully unlocked kitchen (1 month). He's gained a little bit of weight (BMI increased from 87% to 88%) but so far, things have been pretty smooth, considering the enormity of the lifestyle change from just two months ago and the fact that he had been living with the "food police/lockdown system" for over five years. I have been trying to keep his diet consistent with how we've been eating for the last 2 years (lower carb) although I am pretty sure we are a little looser now in the last 6 months than we used to be (now going to more social gatherings which come with more access to higher carb foods).
Now that everything is unlocked, you'd think the sneaking would stop, right? Technically, helping himself to food isn't really sneaking, it's just taking food since all food is accessible now. However, I noticed that he had put some extra bread and crackers into his backpack yesterday. With my "mom hat", I was concerned about his eating the extra food and noticed that he was choosing higher carb foods (we do eat whole wheat sliced bread in moderation and the crackers were purchased for his sister). In my mom role, I wanted to take away the extra food and confront him about why he was packing extra food surreptitiously (the food was not in his lunch bag, but rather in another compartment of his backpack and yes, I was being a spy and checking his backpack). With my "experimenter hat" I wanted to just let it go and allow the extra food and to consider the food he packed as part of the experiment since we are now in the phase of testing his satiety and ability to keep his weight stable with open access to food.
After much consideration, I decided to have a talk with him about the extra food he put in his backpack. I told him that I saw it and that although he was certainly allowed to take the food, it was important that he do it openly so that we understand how much he is eating and what he is eating. I told him that there was no need to be sneaky and asked him why he didn't just pack the food in his lunch. He had a difficult time answering my questions so I provided options:
1) was it that he thought I wouldn't allow him to take the bread and crackers?
2) was it that he didn't want to disappoint me by wanting to eat more "carby" foods?
3) was it because he thought the foods wouldn't be a good idea but he wanted them anyway so he decided to take them secretly?
4) was he feeling more "head hunger" again and returning to his former self with feeling the need to eat more and resorted to sneaking it, out of habit?
I was calm when I spoke with him so he didn't melt down. He said that he had done it a few times before and wasn't sure of why exactly. He said that he didn't think he was regressing back to his former self because he denied feeling obsessed with food as he did in the old days. He did say that he desires to eat certain foods that have typically been forbidden (foods higher in carbohydrates) which might explain why did took them surreptitiously. I told him (with my experimenter hat) that it was really ok for him to want to eat those foods and to eat those foods because he was now given the free will to choose and to manage his own eating. I know he heard my words but I also know that he knows how much I (with my mom hat) want him to be successful with the experiment (to eat moderately, keep his weight stable). I have a feeling that he (with his son hat) wants to please me and that he must be feeling so much pressure to "do well" because he knows that I am writing a paper for publication on this experiment. I can only imagine how challenging it is for him to straddle his roles between being my son and being the subject in this experiment. Similarly, I know that I also need to keep myself grounded with objectivity and matter-of-factness in conducting this experiment to ensure that I am observing accurately, behaving in a consistent manner, and not being biased in accordance to my (mom) wishes. Discovering the hidden food and noticing my reaction and ambivalence in how to handle the discovery was a good example of how difficult it is to manage the dual roles we play in this experiment. Although wearing my mom hat makes me want to control his food intake ("no, don't eat that extra bread!"), my experimenter role tells me to step away and let things happen naturally.
Only time will tell how Sasha does with his food freedom. All I really want from him at this point is to be honest and forthcoming with his eating and to make good choices. I feel that I've already done all that I can to provide him the opportunity to help: a good diet, emotional support, education about nutrition and a cutting edge medication treatment. Now, my job is to stay out of the way as much as possible and hope that he can make good choices. As I write this I realize that this parallels the experience of parenting in general- we do our part to provide support and resources, we model and we teach, and then we do what is often the hardest thing of all- we step out of the way... isn't this all we can ever do as parents as we watch our kids grow up?
We started with a partially unlocked kitchen (6 weeks) and then transitioned to a fully unlocked kitchen (1 month). He's gained a little bit of weight (BMI increased from 87% to 88%) but so far, things have been pretty smooth, considering the enormity of the lifestyle change from just two months ago and the fact that he had been living with the "food police/lockdown system" for over five years. I have been trying to keep his diet consistent with how we've been eating for the last 2 years (lower carb) although I am pretty sure we are a little looser now in the last 6 months than we used to be (now going to more social gatherings which come with more access to higher carb foods).
Now that everything is unlocked, you'd think the sneaking would stop, right? Technically, helping himself to food isn't really sneaking, it's just taking food since all food is accessible now. However, I noticed that he had put some extra bread and crackers into his backpack yesterday. With my "mom hat", I was concerned about his eating the extra food and noticed that he was choosing higher carb foods (we do eat whole wheat sliced bread in moderation and the crackers were purchased for his sister). In my mom role, I wanted to take away the extra food and confront him about why he was packing extra food surreptitiously (the food was not in his lunch bag, but rather in another compartment of his backpack and yes, I was being a spy and checking his backpack). With my "experimenter hat" I wanted to just let it go and allow the extra food and to consider the food he packed as part of the experiment since we are now in the phase of testing his satiety and ability to keep his weight stable with open access to food.
After much consideration, I decided to have a talk with him about the extra food he put in his backpack. I told him that I saw it and that although he was certainly allowed to take the food, it was important that he do it openly so that we understand how much he is eating and what he is eating. I told him that there was no need to be sneaky and asked him why he didn't just pack the food in his lunch. He had a difficult time answering my questions so I provided options:
1) was it that he thought I wouldn't allow him to take the bread and crackers?
2) was it that he didn't want to disappoint me by wanting to eat more "carby" foods?
3) was it because he thought the foods wouldn't be a good idea but he wanted them anyway so he decided to take them secretly?
4) was he feeling more "head hunger" again and returning to his former self with feeling the need to eat more and resorted to sneaking it, out of habit?
I was calm when I spoke with him so he didn't melt down. He said that he had done it a few times before and wasn't sure of why exactly. He said that he didn't think he was regressing back to his former self because he denied feeling obsessed with food as he did in the old days. He did say that he desires to eat certain foods that have typically been forbidden (foods higher in carbohydrates) which might explain why did took them surreptitiously. I told him (with my experimenter hat) that it was really ok for him to want to eat those foods and to eat those foods because he was now given the free will to choose and to manage his own eating. I know he heard my words but I also know that he knows how much I (with my mom hat) want him to be successful with the experiment (to eat moderately, keep his weight stable). I have a feeling that he (with his son hat) wants to please me and that he must be feeling so much pressure to "do well" because he knows that I am writing a paper for publication on this experiment. I can only imagine how challenging it is for him to straddle his roles between being my son and being the subject in this experiment. Similarly, I know that I also need to keep myself grounded with objectivity and matter-of-factness in conducting this experiment to ensure that I am observing accurately, behaving in a consistent manner, and not being biased in accordance to my (mom) wishes. Discovering the hidden food and noticing my reaction and ambivalence in how to handle the discovery was a good example of how difficult it is to manage the dual roles we play in this experiment. Although wearing my mom hat makes me want to control his food intake ("no, don't eat that extra bread!"), my experimenter role tells me to step away and let things happen naturally.
Only time will tell how Sasha does with his food freedom. All I really want from him at this point is to be honest and forthcoming with his eating and to make good choices. I feel that I've already done all that I can to provide him the opportunity to help: a good diet, emotional support, education about nutrition and a cutting edge medication treatment. Now, my job is to stay out of the way as much as possible and hope that he can make good choices. As I write this I realize that this parallels the experience of parenting in general- we do our part to provide support and resources, we model and we teach, and then we do what is often the hardest thing of all- we step out of the way... isn't this all we can ever do as parents as we watch our kids grow up?
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