Well, this is funny. Never in my life would I have predicted that I would ever be concerned that my kid with hypothalamic obesity and hyperphagia would lose so much weight that I would start to become worried he was "wasting away." No, he is not really wasting away but he has continued to lose weight steadily, 4 kilos or 9 pounds in 6 weeks. We even went to the Southern California Craniopharyngioma Picnic last weekend and purposely gave him more freedom to eat at his own discretion and he definitely took advantage of the picnic potluck to enjoy the higher carb goodies like eggrolls, crackers, and cookies there. Still, he lost two pounds (one kilo) in the last week!
For the sole purpose of breaking the sugar addiction cycle, we implemented the very strict ketogenic low carb diet for 10 days, after which we re-introduced fruit, legumes, and modest grains (oatmeal) back into his diet. We don't count calories and we leave the kitchen unlocked. We haven't been trying at all to reduce his weight so to my surprise, he has continued to lose weight even after we added back the complex carbs. Because we don't want him to keep losing weight, we will be adding even more carbs back into his diet. We don't want to start any extreme carb cravings (which could cause more intense food seeking/carb addiction) by doing this but we would like to ease up on our rigidity and give him a sense of normalcy. Heck, I badly need a sense of normalcy in the midst of our lives so limited by the constraints of his many medical conditions and treatments. Even if he does gain some weight from these extra carbs, his leaner body can now afford the extra pounds. We really, REALLY want to find the "happy medium" (if it exists) to keep him at a healthy weight, keep carb cravings at bay, AND allow him the enjoyment of a moderate amount of higher carb treats to decrease his sense of deprivation and increase his sense of normalcy.
I am certain that the lower carb diet alone is not responsible for Sasha's weight loss. Starting in February of 2015, Sasha began and was maintained on a rather strict lower carb diet (Under 80 grams of carbs per day). During these 18 months, he managed to lower his BMI from the 96th down to (the lowest ever since brain surgery) the 93rd percentile. By the time we found a therapeutic dose of OT, his BMI had crept back up to the 96th percentile. In the last 12 months on OT (9 months on OT and naltrexone), his BMI has fallen 17 percentile points and today his BMI is only 22.1 and in the 79th percentile. Testosterone was added in December of 2016 (right before his 14th birthday) and it may also be an additional boost to a leaner build with improved muscle tone.
Because I have been disappointed in naltrexone's failure to curb his hedonic food and non-food seeking, I am discontinuing the naltrexone to see if it makes any difference at all in Sasha's appetite, eating habits, food seeking, non-food seeking, weight, etc. This is the first week he has gone without naltrexone and we've not noticed any difference. It will be a matter of time before we know whether OT alone is the primary agent responsible for Sasha's improvements. Stay tuned.
Thursday, July 27, 2017
Saturday, July 15, 2017
97) The perils of special needs parenting
This is a post about me. And if you are also a special needs parent, this is about you, too.
I started this experiment out of pure desperation to find relief from our suffering. I knew that others in our position were also suffering and I wanted nothing more than to try to end the suffering for my son, myself and others who have been tortured by the beast we call HO Monster. Due to my desperation and drive to find treatment for my son's hypothalamic obesity and hyperphagia, I started this Oxytocin experiment and have found some relief with our experiment so far.
We've made progress and I can celebrate our successes... but it has come at a large cost. Some parents and blog readers have called me "tireless" in my efforts. To the contrary, it is extremely tiring (understatement of the year) but I feel that I am a machine and I CANNOT stop trying to "change the things I cannot accept." I work full time as a clinical psychologist and I have a marriage and another child (Sasha's younger sister). I used to say that I "go to work to relax" when the kids were very young but the statement has never been more true than after my son was diagnosed with the brain tumor and I truly had a much easier job when I went to work to treat patients with acute and chronic mental illnesses, personality disorders, suicidal crises, etc. It strikes me as ironic that I find myself in the role of counseling others when I am certain that my stress is often as severe or worse than that of my patients.
I was recently hit with the stark realization that my best efforts may not result in my desired outcome. Although we have found freedom from many of the horrors of HO (constant hunger and food obsession, health problems related to obesity), we have not yet been able to free him from having to live within the confines of the extremely limited and restrictive lifestyle (with a low carb regimen in a high carb world) where HO Monster still looms. This realization has hit me hard, so hard, it has stopped me in my tracks. In the space of this stillness, I have sunk into a deep sadness and grief for the loss of his pre-brain tumor past, and great anguish and worry for his post-brain tumor future. Although my feelings are totally legitimate, I cannot afford to wallow in the grief and worry. I have too many f-ing things to do to keep my son alive and optimally well. So I put on my hat of strength, competence, and stoicism and I carry on. And while I often feel that I cannot keep up with this frantic pace of life, I also cannot afford not to keep up this frantic pace of life. Sometimes I marvel at the fact that I have not (yet) become debilitated by a severe anxiety disorder or clinical depression given the amount of stress we have endured in the last 6 years- I honestly believe it is simply because I don't have time to become depressed. If I had to diagnose myself with a psychological condition, I'd have to say that Post Traumatic Stress Disorder may be most fitting ( and it happens to be my professional specialty). However, I feel that the trauma that I experience is not merely from the past; it is an enduring daily experience of dealing with anticipated "disasters" (health and behavioral) that are intimately related with his brain tumor. The DSM-V needs to come up with a more fitting diagnosis for those of us who are special-needs parents and I propose that it be called ETSD or "Enduring Traumatic Stress Disorder."
Sometimes exhaustion, bedtime, and sleep are my only friends. It is the only time I can escape my sorrow, gnawing uneasiness, and responsibilities of special needs parenting. Too tired to stay up late reading PubMed endocrine papers I can barely understand, I collapse into my temporary escape of slumber, only to wake up to start the tiresome process all over again the next day.
If you relate to what I've written, feel free to share your comments. It will surely help us all feel less isolated in this lonely and weary world we call special needs parenting.
I started this experiment out of pure desperation to find relief from our suffering. I knew that others in our position were also suffering and I wanted nothing more than to try to end the suffering for my son, myself and others who have been tortured by the beast we call HO Monster. Due to my desperation and drive to find treatment for my son's hypothalamic obesity and hyperphagia, I started this Oxytocin experiment and have found some relief with our experiment so far.
We've made progress and I can celebrate our successes... but it has come at a large cost. Some parents and blog readers have called me "tireless" in my efforts. To the contrary, it is extremely tiring (understatement of the year) but I feel that I am a machine and I CANNOT stop trying to "change the things I cannot accept." I work full time as a clinical psychologist and I have a marriage and another child (Sasha's younger sister). I used to say that I "go to work to relax" when the kids were very young but the statement has never been more true than after my son was diagnosed with the brain tumor and I truly had a much easier job when I went to work to treat patients with acute and chronic mental illnesses, personality disorders, suicidal crises, etc. It strikes me as ironic that I find myself in the role of counseling others when I am certain that my stress is often as severe or worse than that of my patients.
I was recently hit with the stark realization that my best efforts may not result in my desired outcome. Although we have found freedom from many of the horrors of HO (constant hunger and food obsession, health problems related to obesity), we have not yet been able to free him from having to live within the confines of the extremely limited and restrictive lifestyle (with a low carb regimen in a high carb world) where HO Monster still looms. This realization has hit me hard, so hard, it has stopped me in my tracks. In the space of this stillness, I have sunk into a deep sadness and grief for the loss of his pre-brain tumor past, and great anguish and worry for his post-brain tumor future. Although my feelings are totally legitimate, I cannot afford to wallow in the grief and worry. I have too many f-ing things to do to keep my son alive and optimally well. So I put on my hat of strength, competence, and stoicism and I carry on. And while I often feel that I cannot keep up with this frantic pace of life, I also cannot afford not to keep up this frantic pace of life. Sometimes I marvel at the fact that I have not (yet) become debilitated by a severe anxiety disorder or clinical depression given the amount of stress we have endured in the last 6 years- I honestly believe it is simply because I don't have time to become depressed. If I had to diagnose myself with a psychological condition, I'd have to say that Post Traumatic Stress Disorder may be most fitting ( and it happens to be my professional specialty). However, I feel that the trauma that I experience is not merely from the past; it is an enduring daily experience of dealing with anticipated "disasters" (health and behavioral) that are intimately related with his brain tumor. The DSM-V needs to come up with a more fitting diagnosis for those of us who are special-needs parents and I propose that it be called ETSD or "Enduring Traumatic Stress Disorder."
Sometimes exhaustion, bedtime, and sleep are my only friends. It is the only time I can escape my sorrow, gnawing uneasiness, and responsibilities of special needs parenting. Too tired to stay up late reading PubMed endocrine papers I can barely understand, I collapse into my temporary escape of slumber, only to wake up to start the tiresome process all over again the next day.
If you relate to what I've written, feel free to share your comments. It will surely help us all feel less isolated in this lonely and weary world we call special needs parenting.
Friday, July 14, 2017
96) The ups and downs of the Oxytocin Experiment
There are always ups and downs in life. Of course, we were hit hard with the downs of life after being violently struck with the diagnosis of craniopharyngioma and its insidious sequelae of diabetes insipidus, adrenal insufficiency, visual impairment, hypothalamic obesity, etc. We have tried to beat back hypothalamic obesity with oxytocin and naltrexone and yet the ups and downs persist like a seesaw.
The "down" (bad news) is that Sasha still has a hard time resisting his urges to find and take highly palatable foods (read: high carb/sugary treats). I mentioned this opportunistic hedonic food seeking already in post #94. I maintain that he seeks these types of treats in the absence of hunger because he has no problems eating "non-carbolicious" foods in a moderate way. All foods in our home are easily treated by Sasha in a totally normal way; he enjoys food and yet he can leave meals unfinished when he is full, he can eat moderate snacks at appropriate times, he can have a mellow attitude around food in general. In case you might be thinking that the only food we keep in our home is broccoli and kale, think again- although we eat a healthy lower carb lifestyle, we do keep lots of palatable foods around that Sasha likes: peanut butter, almond butter, fresh fruit (peaches hanging on trees and berries dangling on bushes in our backyard!), cheese, nuts, bacon, and homemade treats he makes with coconut flour, almond flour and erythitol. The only foods he craves and seeks are junky foods like cookies, chocolate, etc. We'd love to offer him the occasional splurge on high sugar foods but history has shown us that when eats sugar, it creates a vicious cycle of sugar addiction- and this is definitely something we want to avoid! We are currently working on trying to strike a healthy balance between a healthy low carb lifestyle WITH access to occasional treats and hope that this balance is possible to achieve given his history of "carboholic" tendencies.
The "up" (good news) is that despite his opportunistic food seeking, Sasha continues to lose/maintain his lower weight. This week, he lost an additional 1 kg/2 pounds from last week. I never thought I'd ever say this about my kid with hypothalamic obesity, but he is no longer even considered "overweight" since his BMI is now in the 82nd percentile. I really think he is at a very healthy weight and should not lose more weight. While I am disappointed that he continues to engage in high carb food seeking (an indication of his poor impulse control), I am thrilled that it is done in the absence of hunger and that the OT/NAL has certainly done its job by helping him reduce his problems with excess hunger and poor satiety.
And so it goes... the seesaw effect is alive and well in life and with the oxytocin/naltrexone experiment. I am working on finishing my manuscript about our experiment and hope to publish it in the medical literature soon so that others may know that the excessive hunger and obesity of HO is most definitely responsive to treatment with oxytocin and naltrexone.
The "down" (bad news) is that Sasha still has a hard time resisting his urges to find and take highly palatable foods (read: high carb/sugary treats). I mentioned this opportunistic hedonic food seeking already in post #94. I maintain that he seeks these types of treats in the absence of hunger because he has no problems eating "non-carbolicious" foods in a moderate way. All foods in our home are easily treated by Sasha in a totally normal way; he enjoys food and yet he can leave meals unfinished when he is full, he can eat moderate snacks at appropriate times, he can have a mellow attitude around food in general. In case you might be thinking that the only food we keep in our home is broccoli and kale, think again- although we eat a healthy lower carb lifestyle, we do keep lots of palatable foods around that Sasha likes: peanut butter, almond butter, fresh fruit (peaches hanging on trees and berries dangling on bushes in our backyard!), cheese, nuts, bacon, and homemade treats he makes with coconut flour, almond flour and erythitol. The only foods he craves and seeks are junky foods like cookies, chocolate, etc. We'd love to offer him the occasional splurge on high sugar foods but history has shown us that when eats sugar, it creates a vicious cycle of sugar addiction- and this is definitely something we want to avoid! We are currently working on trying to strike a healthy balance between a healthy low carb lifestyle WITH access to occasional treats and hope that this balance is possible to achieve given his history of "carboholic" tendencies.
The "up" (good news) is that despite his opportunistic food seeking, Sasha continues to lose/maintain his lower weight. This week, he lost an additional 1 kg/2 pounds from last week. I never thought I'd ever say this about my kid with hypothalamic obesity, but he is no longer even considered "overweight" since his BMI is now in the 82nd percentile. I really think he is at a very healthy weight and should not lose more weight. While I am disappointed that he continues to engage in high carb food seeking (an indication of his poor impulse control), I am thrilled that it is done in the absence of hunger and that the OT/NAL has certainly done its job by helping him reduce his problems with excess hunger and poor satiety.
And so it goes... the seesaw effect is alive and well in life and with the oxytocin/naltrexone experiment. I am working on finishing my manuscript about our experiment and hope to publish it in the medical literature soon so that others may know that the excessive hunger and obesity of HO is most definitely responsive to treatment with oxytocin and naltrexone.
Saturday, July 1, 2017
95) The F-word and how I feel about it
I heard an interview yesterday on the radio about an activist who spoke up on behalf of fat people. There is a movement that has been around for a while now (started in the 70's, I believe) to advance fat acceptance. I once invited a speaker from NAAFA (National Association to Advance Fat Acceptance) to my workplace for a talk. From what I have learned, NAAFA is a civil rights group focused on ending size discrimination of (fat) people. If you're offended by the word, "fat", it may be because the word has been stigmatized in our society, just like the people who fit the description. According to fat acceptance advocates, "fat" is simply a physical description just like "liquidy" or "metallic" or "warm" and does not hold negative or positive meaning. The negative connotations associated with the word have been ascribed by society but "fat" in of itself, doesn't need to be judged in a negative way just like the words "short" or "old" also needn't be thought of in a negative way. Maybe this seems like a radical way of thinking about the word. I rather think that the word and all of its associations could use some radical acceptance.
For the record, in case there is any question about my personal stance on the matter, I fully agree with the opinion that there is entirely too much emphasis in our society on the importance of slenderness and the belief that slenderness=health and beauty or that fatness=poor health and ugliness. I feel that it is important for me to address this matter directly in this blog because I am pretty certain that many (most?) readers (maybe you?) have a negative attitude about fatness. I think that most of us probably do because of the messages we receive from society including advertisers, popular culture, and the medical establishment. Maybe you (or a family member) are fat and you wish you weren't. I am not denying that there are problems associated with fatness. For example, there are increased risks for developing certain health problems (you know the list)... but what about the psychological damage that occurs with the body shaming and the eating disorders that develop when a person is made to feel that s/he is ugly or lazy or a failure, just because of her/his body size? For example, did you know that anorexia nervosa is by far the most lethal (leading to death) of ALL of the psychiatric disorders known? Major Depression, one of the most common psychiatric disorders that leads to suicide, is less deadly than anorexia: http://www.webmd.com/mental-health/eating-disorders/anorexia-nervosa/news/20110711/deadliest-psychiatric-disorder-anorexia. Besides the obvious danger of having extreme fat phobia as with anorexia, those of you who have struggled with your weight and body image know the damage it causes your self-esteem.
While it may appear that I am fat-obsessed (measuring his BMI, reporting on his weight loss), my focus for this experiment has always been (and remains) my wish for my son to have a normal relationship with food (reduction of his sensed hunger and hyperphagia). The effect on his weight loss has been a "side effect" benefit to him but I have always said that I would gladly trade his hyperphagia for a higher BMI. Perhaps that is easier for me to say now that he is no longer obese (a medical term indicating his BMI is over the 95th percentile) but I truly feel this way. Like an alcoholic bartender who is asked if he is drinking on the job, Sasha has not been reliable about reporting his food sneaking behaviors. Since he has historically been totally unreliable in making accurate self-reports, his weight has been one of the only ways we can know if he is sneaking extra food on the down-low. Therefore, reporting on his weight changes has been the best (and only) reliable way I can measure the effects from oxytocin/naltrexone treatment.
I don't want to come across as preachy about fat acceptance but I REALLY don't want to be perceived as an anti-fat person since our society finds it perfectly acceptable to hate on fat people in so many destructive ways. In case anyone thought that I have been on a weight-loss mission with my son, let the record show that I have NOT. While I think that it is important to inhabit a healthy body- one that allows us to feel well and participate in our life's activities- I also believe it is equally important to cherish and take care of our bodies to optimize health and well being, including our mental well being. I hope that those of you who are interested in oxytocin for its weight-reducing effects will also consider the importance of maintaining or improving your acceptance of yourselves and your bodies, no matter what your weight or size.
For the record, in case there is any question about my personal stance on the matter, I fully agree with the opinion that there is entirely too much emphasis in our society on the importance of slenderness and the belief that slenderness=health and beauty or that fatness=poor health and ugliness. I feel that it is important for me to address this matter directly in this blog because I am pretty certain that many (most?) readers (maybe you?) have a negative attitude about fatness. I think that most of us probably do because of the messages we receive from society including advertisers, popular culture, and the medical establishment. Maybe you (or a family member) are fat and you wish you weren't. I am not denying that there are problems associated with fatness. For example, there are increased risks for developing certain health problems (you know the list)... but what about the psychological damage that occurs with the body shaming and the eating disorders that develop when a person is made to feel that s/he is ugly or lazy or a failure, just because of her/his body size? For example, did you know that anorexia nervosa is by far the most lethal (leading to death) of ALL of the psychiatric disorders known? Major Depression, one of the most common psychiatric disorders that leads to suicide, is less deadly than anorexia: http://www.webmd.com/mental-health/eating-disorders/anorexia-nervosa/news/20110711/deadliest-psychiatric-disorder-anorexia. Besides the obvious danger of having extreme fat phobia as with anorexia, those of you who have struggled with your weight and body image know the damage it causes your self-esteem.
While it may appear that I am fat-obsessed (measuring his BMI, reporting on his weight loss), my focus for this experiment has always been (and remains) my wish for my son to have a normal relationship with food (reduction of his sensed hunger and hyperphagia). The effect on his weight loss has been a "side effect" benefit to him but I have always said that I would gladly trade his hyperphagia for a higher BMI. Perhaps that is easier for me to say now that he is no longer obese (a medical term indicating his BMI is over the 95th percentile) but I truly feel this way. Like an alcoholic bartender who is asked if he is drinking on the job, Sasha has not been reliable about reporting his food sneaking behaviors. Since he has historically been totally unreliable in making accurate self-reports, his weight has been one of the only ways we can know if he is sneaking extra food on the down-low. Therefore, reporting on his weight changes has been the best (and only) reliable way I can measure the effects from oxytocin/naltrexone treatment.
I don't want to come across as preachy about fat acceptance but I REALLY don't want to be perceived as an anti-fat person since our society finds it perfectly acceptable to hate on fat people in so many destructive ways. In case anyone thought that I have been on a weight-loss mission with my son, let the record show that I have NOT. While I think that it is important to inhabit a healthy body- one that allows us to feel well and participate in our life's activities- I also believe it is equally important to cherish and take care of our bodies to optimize health and well being, including our mental well being. I hope that those of you who are interested in oxytocin for its weight-reducing effects will also consider the importance of maintaining or improving your acceptance of yourselves and your bodies, no matter what your weight or size.
Thursday, June 22, 2017
94) Accepting the things I cannot change vs changing the things I cannot accept
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."
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."
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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