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.
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