For the last couple of years, I've been finding and posting research papers to this blog and to the various FB groups to learn and to share information that I hoped would be helpful to my son and others with his condition...
Now I am delighted to share the fruits of my labor! This online article is in its entirety.
https://academic.oup.com/jcem/article/103/2/370/4693940
The final version has been printed in the Journal of Clinical Endocrinology & Metabolism in the February, 2018 edition.
You are welcome to share the article with whomever you please. If you think you might have a comment or question that would interest others, please write it under the comments section of Hope for HO. Otherwise, I am the corresponding author and my email is listed if there are questions.
Friday, December 8, 2017
Friday, December 1, 2017
104) Actualizing more hope for HO!
Woo hoo!
After two years of slogging through endocrinology journals on oxytocin, metabolism, neurophysiology of the endocrine system, obesity, (etc.), almost a year and a half of writing in this blog on our experimental treatment of my son's hypothalamic obesity, and another four months writing and re-writing the manuscript... I'm thrilled to report that the Journal of Clinical Endocrinology and Metabolism has accepted "Oxytocin and Naltrexone successfully treat hypothalamic obesity in a boy post-craniopharyngioma resection."
The decision to conduct the experiment with oxytocin was motivated by pure desperation to escape the hellish life my son was living and would live, indefinitely, if we could not find a solution. However, the blog and desire to publish a report in a reputable medical journal has been a labor of love and one that has been propelled by the great relief we have felt after suffering for five years with HO and hyperphagia. To those of you who have followed the blog or who also live through the daily horrors of HO, you know the indignities that are associated with living with this disorder; the day we experienced the "HEFY" (half-eaten frozen yogurt, post #4) will always live in my mind as the moment I first felt hope for HO.
The experiment and case report would have not been possible had it not been for several key people who deserve special shout outs:
From the craniopharyngioma FB group- Martin H. opened my eyes to the fact that not all pituitary hormones are readily replaced in patients with PHP and Naomi C's pioneering work with oxytocin gave me the idea to try it in the first place. Dr. Theodore Friedman prescribed this difficult-to-obtain neurohormone and Dr. Jennifer Miller kindly provided her oxytocin expertise as a consultant to the experiment. While I pored through relevant PubMed papers, I contacted some of the scientists who authored the papers on oxytocin and hypothalamic obesity; some of them kindly returned my emails with helpful articles, answers to my questions, and moral support for my project. One of them was Dr. Christian Roth who took notice of our success with Sasha's weight loss and offered to have his MRI scans evaluated for hypothalamic damage and risk for hypothalamic obesity. He joined the project to help get the manuscript ready to submit for publication and asked Dr. Francisco Perez of U of Washington (neuro-radiologist) to assist with the MRI scan analysis. With the support from my co-authors (Drs. Miller, Perez, and Roth), I somehow wrote this case report and now it will be published...
I will let you all know when the advance article becomes available (posted to the JCEM website in about a week) and when the final paper is published.
Have hope for HO!
After two years of slogging through endocrinology journals on oxytocin, metabolism, neurophysiology of the endocrine system, obesity, (etc.), almost a year and a half of writing in this blog on our experimental treatment of my son's hypothalamic obesity, and another four months writing and re-writing the manuscript... I'm thrilled to report that the Journal of Clinical Endocrinology and Metabolism has accepted "Oxytocin and Naltrexone successfully treat hypothalamic obesity in a boy post-craniopharyngioma resection."
The decision to conduct the experiment with oxytocin was motivated by pure desperation to escape the hellish life my son was living and would live, indefinitely, if we could not find a solution. However, the blog and desire to publish a report in a reputable medical journal has been a labor of love and one that has been propelled by the great relief we have felt after suffering for five years with HO and hyperphagia. To those of you who have followed the blog or who also live through the daily horrors of HO, you know the indignities that are associated with living with this disorder; the day we experienced the "HEFY" (half-eaten frozen yogurt, post #4) will always live in my mind as the moment I first felt hope for HO.
The experiment and case report would have not been possible had it not been for several key people who deserve special shout outs:
From the craniopharyngioma FB group- Martin H. opened my eyes to the fact that not all pituitary hormones are readily replaced in patients with PHP and Naomi C's pioneering work with oxytocin gave me the idea to try it in the first place. Dr. Theodore Friedman prescribed this difficult-to-obtain neurohormone and Dr. Jennifer Miller kindly provided her oxytocin expertise as a consultant to the experiment. While I pored through relevant PubMed papers, I contacted some of the scientists who authored the papers on oxytocin and hypothalamic obesity; some of them kindly returned my emails with helpful articles, answers to my questions, and moral support for my project. One of them was Dr. Christian Roth who took notice of our success with Sasha's weight loss and offered to have his MRI scans evaluated for hypothalamic damage and risk for hypothalamic obesity. He joined the project to help get the manuscript ready to submit for publication and asked Dr. Francisco Perez of U of Washington (neuro-radiologist) to assist with the MRI scan analysis. With the support from my co-authors (Drs. Miller, Perez, and Roth), I somehow wrote this case report and now it will be published...
I will let you all know when the advance article becomes available (posted to the JCEM website in about a week) and when the final paper is published.
Have hope for HO!
Monday, November 20, 2017
103) Biomarkers of Social Impairments in Individuals with Hypothalamic-Pituitary Disorders: participate in a study at Stanford
When Dr. Sue Carter discovered the social bonding properties of oxytocin in her seminal research on prairie voles, it opened up a world of research regarding oxytocin's role in autism, social anxiety, relationships, and other arenas.
Long, long overdue (in my opinion) is the need to study social impairment among survivors of pituitary and hypothalamic tumors. Anecdotally from my own observations of Sasha as well as from hearing reports from many others with craniopharyngioma, there are some commonalities that affect social motivation and social impairment. A while ago, I sent out a survey on the mental health of cranios and found that issues with socializing were rated among the most common and problematic areas affecting quality of life (guess what was number one...? Yep, HO!)
Now, there is a study at Stanford University recruiting 6-30 year old subjects to study this very phenomenon. Dr. Karen Parker is the principal investigator. Please see this study flier for more info: http://med.stanford.edu/parkerlab/research/Biomarkers-of-Social-Impairments-in-Individuals-with-Hypothalamic-Pituitary-Disorders.html
From our observations before oxytocin, Sasha had an odd combination of being very warm and friendly yet lacked friends. He also had a strong tendency to want to chat up adults but really didn't show any interest in kids his age. He was quite content to stay by himself and didn't complain of feeling lonely. He appeared to feel comfortable hanging out with his adult aides at school. Most adults who met him found him very charming and mature, an "old soul." Interestingly, I have heard very similar reports from other parents of cranio kids.
What's up with these symptoms? Could it be that something is amiss in their oxytocinergic systems since many of these brain tumor survivors have had brain damage and NOT had their oxytocin replaced by hormone replacement therapies? Since Sasha has been getting oxytocin replacement, he has shown more social motivation. He made a friend a year ago and continues to see him on the weekends. He would also like to make more friends and has been making some attempts through the lunch time clubs in high school. Because he's missed 5 years of socializing, he is behind and it will be hard for him to catch up with his peers in the social realm, but this is a noticeably different way of being for him... before OT, he was totally indifferent to wanting to hang out with kids his age.
It is my hope that more can be learned about the socialization issues of these brain tumor survivors. Depending on what Dr. Parker learns, perhaps there will be more impetus to offer treatment (got oxytocin?) for the social needs of survivors of pituitary and hypothalamic tumors. Please consider participating in this very important study. Thank you!
Long, long overdue (in my opinion) is the need to study social impairment among survivors of pituitary and hypothalamic tumors. Anecdotally from my own observations of Sasha as well as from hearing reports from many others with craniopharyngioma, there are some commonalities that affect social motivation and social impairment. A while ago, I sent out a survey on the mental health of cranios and found that issues with socializing were rated among the most common and problematic areas affecting quality of life (guess what was number one...? Yep, HO!)
Now, there is a study at Stanford University recruiting 6-30 year old subjects to study this very phenomenon. Dr. Karen Parker is the principal investigator. Please see this study flier for more info: http://med.stanford.edu/parkerlab/research/Biomarkers-of-Social-Impairments-in-Individuals-with-Hypothalamic-Pituitary-Disorders.html
From our observations before oxytocin, Sasha had an odd combination of being very warm and friendly yet lacked friends. He also had a strong tendency to want to chat up adults but really didn't show any interest in kids his age. He was quite content to stay by himself and didn't complain of feeling lonely. He appeared to feel comfortable hanging out with his adult aides at school. Most adults who met him found him very charming and mature, an "old soul." Interestingly, I have heard very similar reports from other parents of cranio kids.
What's up with these symptoms? Could it be that something is amiss in their oxytocinergic systems since many of these brain tumor survivors have had brain damage and NOT had their oxytocin replaced by hormone replacement therapies? Since Sasha has been getting oxytocin replacement, he has shown more social motivation. He made a friend a year ago and continues to see him on the weekends. He would also like to make more friends and has been making some attempts through the lunch time clubs in high school. Because he's missed 5 years of socializing, he is behind and it will be hard for him to catch up with his peers in the social realm, but this is a noticeably different way of being for him... before OT, he was totally indifferent to wanting to hang out with kids his age.
It is my hope that more can be learned about the socialization issues of these brain tumor survivors. Depending on what Dr. Parker learns, perhaps there will be more impetus to offer treatment (got oxytocin?) for the social needs of survivors of pituitary and hypothalamic tumors. Please consider participating in this very important study. Thank you!
Saturday, October 28, 2017
102) Manuscript is still in the running (!); before OT and after OT photos
I've been away from the blog lately due to my work on the manuscript that I'm trying to publish in a highly reputable medical journal. The first rendition of the manuscript was peer-reviewed with only minor concerns but was rejected due to its "low priority" ratings (due to its orphan disease status?). However, at the urging of my scientist husband, I made a strong case for reconsideration and the editors are now allowing us to resubmit a revised version in response to the reviewers' concerns . Apparently, it is not typical for the editors to reverse their decisions so I am cautiously optimistic about our ability to rewrite the paper so as to impress the reviewers/editors enough to reconsider publishing the paper.
I'm done revising the paper and am now waiting for my co-authors to look over my revisions. In the meantime, we are continuing to cruise along. Sasha continues to take a 6 iu/day OT spray and has been off naltrexone now for 14 weeks. His weight has stayed more or less the same (weight has increased slightly from the end of July- BMI was at its all time low then in the 79th percentile- now it is in the 81st percentile). Here are some photos (sorry for the photo-edited decapitation) of before and after OT:
His eating habits have remained moderate and he is able to exercise control over himself with our greatly reduced supervision and unlocked kitchen (now unlocked a total of 24 weeks)! We have had very good reports from school regarding his food seeking behaviors- in fact, we weren't getting any reports (no news is good news) so we inquired and they reassured us that they were keeping close tabs on him and that they would report incidents if they had any to report.
When I re-read and think back to our lives before OT, I shudder with horror at the hell we had to live through for 5 long years. The constant, unblinking vigilance, rapid weight gain, food obsession, kitchen locking, tearful episodes over food, food stealing, etc. It was truly the bane of our existence. I know that many of you who read the blog are currently living through this hell. It is my hope that the eventual publication of our report will enlighten more researchers and physicians to consider oxytocin as a viable treatment option for HO and hyperphagia so others can also find the relief that we have found.
I promise to work as hard as I possible can to get this case report accepted for publication and will update the blog when I get some (good) news. Keep your fingers crossed!
I'm done revising the paper and am now waiting for my co-authors to look over my revisions. In the meantime, we are continuing to cruise along. Sasha continues to take a 6 iu/day OT spray and has been off naltrexone now for 14 weeks. His weight has stayed more or less the same (weight has increased slightly from the end of July- BMI was at its all time low then in the 79th percentile- now it is in the 81st percentile). Here are some photos (sorry for the photo-edited decapitation) of before and after OT:
 |
Sasha before OT (July, 2016) with
5 years of tight food supervision and locked kitchen
170 cm tall, 77 kg, BMI=96%
|
 |
| Sasha today after 62 weeks of OT with 24 weeks of loose supervision and unlocked kitchen access 180.3 cm tall, 73.1 kg, BMI=81% |
His eating habits have remained moderate and he is able to exercise control over himself with our greatly reduced supervision and unlocked kitchen (now unlocked a total of 24 weeks)! We have had very good reports from school regarding his food seeking behaviors- in fact, we weren't getting any reports (no news is good news) so we inquired and they reassured us that they were keeping close tabs on him and that they would report incidents if they had any to report.
When I re-read and think back to our lives before OT, I shudder with horror at the hell we had to live through for 5 long years. The constant, unblinking vigilance, rapid weight gain, food obsession, kitchen locking, tearful episodes over food, food stealing, etc. It was truly the bane of our existence. I know that many of you who read the blog are currently living through this hell. It is my hope that the eventual publication of our report will enlighten more researchers and physicians to consider oxytocin as a viable treatment option for HO and hyperphagia so others can also find the relief that we have found.
I promise to work as hard as I possible can to get this case report accepted for publication and will update the blog when I get some (good) news. Keep your fingers crossed!
Friday, September 29, 2017
101) Experiment is over...what's next?
Hello! It's been a long while since I've blogged here. During this absence, I've been writing the case report and getting it ready for publication in a clinical endocrinology journal. I submitted it last week and it is now "under review." We are crossing our fingers and I hope to share some good news with you all if it gets selected for publication.
Now that Sasha has been on a therapeutic dose of oxytocin for over a year, I believe I can conclude that it has been a successful experiment. My original treatment goals were to decrease his hyperphagia in order to normalize his relationship with food and to improve his socialization (increase social motivation and friendships). Our lives now are vastly improved compared to the old days of living with the stress and dread about keeping all food under lock and key, limiting access to social events, and having to keep an unblinking eye on him when he was around food. Sasha's steady and sustained improvements have allowed us to loosen up on his supervision and now he walks to and from school by himself. So far, we have not detected any signs of food sneaking. He still has an aide at school and they do keep a close eye on him (part of his IEP) just in case his food sneaking returns, but so far, no reports from the school about any "disasters"- we are happy and relieved about this! As for the goals regarding socialization, he has kept up with his friendship with his buddy and they continue to see each other on the weekends. He has also begun to join some social clubs at his high school (robotics, Best Buddies, card and board games, etc.) so we are hopeful he will be able to make some new friends at school.
His dose has been steady at 6 iu/day intranasal oxytocin and we haven't missed the naltrexone (stopped before the end of July) to date. At home, he's been observed to have the same eating habits and we still keep to a low-ish carbohydrate diet (100 grams of carbs/day, give or take). I have been even more lax about supervising his food and eating since the beginning of school. In fact, I have not once supervised or even seen what he is packing in his school lunch. We keep the kitchen stocked with healthy foods that Sasha enjoys and he appears to be handling his free access to the kitchen without a problem; the fridge and all cabinets remain unlocked 24 hours a day and the Kitchen Bitch hasn't been around...! I am trusting that he is making good choices about his food selection and eating in moderation. We do indulge, on occasion (3-4 times per month), in a sweet treat and so far, it has not led to any problems. Lastly, if his physical appearance is any indication of his choices, he's doing a good job because he looks and feels great at 5'10.5" and 160 pounds (179 cm, 72.5 kg).
Regarding oxytocin's social bonding function, last Saturday I had the great privilege to meet and spend the afternoon with Dr. Sue Carter. She is the scientist who discovered the bonding properties of oxytocin in her seminal work on socially monogamous prairie voles and is currently the director of the Kinsey Institute. Sharing a couple of articles about her work- the first is written by her and her husband, Stephen Porges (another internationally celebrated scientist, widely known for his Polyvagal Theory). The second is an article and interview written by their son, Seth Porges, journalist. The third paper explains oxytocin's role in the evolution of human behavior.
1. The biochemistry of love: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537144/
2. Seven things you didn't know about oxytocin: https://www.forbes.com/sites/sethporges/2016/02/12/7-things-you-probably-didnt-know-about-oxytocin-and-the-science-of-love/#bd37080670b3
3. Oxytocin Pathways and the Evolution of Human Behavior: http://ccare.stanford.edu/wp-content/uploads/2013/09/Oxytocin-Pathways-and-the-Evolution-of-Human-Behavior.pdf
Dr. Carter has shown interest in our experiment and has been very supportive to me over the last year so it was a great honor to finally meet her. Talking with her has inspired me to continue to learn more about oxytocin and to understand other untreated conditions (social impairment, compulsive behaviors, anxiety, etc.) that may be connected to the impaired oxytocinergic system of people with pituitary/hypothalamic tumors. I am very excited about a research study that is launching from Stanford University on this subject and will post more info about it after I gain permission from the principal investigator.
Now that Sasha has been on a therapeutic dose of oxytocin for over a year, I believe I can conclude that it has been a successful experiment. My original treatment goals were to decrease his hyperphagia in order to normalize his relationship with food and to improve his socialization (increase social motivation and friendships). Our lives now are vastly improved compared to the old days of living with the stress and dread about keeping all food under lock and key, limiting access to social events, and having to keep an unblinking eye on him when he was around food. Sasha's steady and sustained improvements have allowed us to loosen up on his supervision and now he walks to and from school by himself. So far, we have not detected any signs of food sneaking. He still has an aide at school and they do keep a close eye on him (part of his IEP) just in case his food sneaking returns, but so far, no reports from the school about any "disasters"- we are happy and relieved about this! As for the goals regarding socialization, he has kept up with his friendship with his buddy and they continue to see each other on the weekends. He has also begun to join some social clubs at his high school (robotics, Best Buddies, card and board games, etc.) so we are hopeful he will be able to make some new friends at school.
His dose has been steady at 6 iu/day intranasal oxytocin and we haven't missed the naltrexone (stopped before the end of July) to date. At home, he's been observed to have the same eating habits and we still keep to a low-ish carbohydrate diet (100 grams of carbs/day, give or take). I have been even more lax about supervising his food and eating since the beginning of school. In fact, I have not once supervised or even seen what he is packing in his school lunch. We keep the kitchen stocked with healthy foods that Sasha enjoys and he appears to be handling his free access to the kitchen without a problem; the fridge and all cabinets remain unlocked 24 hours a day and the Kitchen Bitch hasn't been around...! I am trusting that he is making good choices about his food selection and eating in moderation. We do indulge, on occasion (3-4 times per month), in a sweet treat and so far, it has not led to any problems. Lastly, if his physical appearance is any indication of his choices, he's doing a good job because he looks and feels great at 5'10.5" and 160 pounds (179 cm, 72.5 kg).
Regarding oxytocin's social bonding function, last Saturday I had the great privilege to meet and spend the afternoon with Dr. Sue Carter. She is the scientist who discovered the bonding properties of oxytocin in her seminal work on socially monogamous prairie voles and is currently the director of the Kinsey Institute. Sharing a couple of articles about her work- the first is written by her and her husband, Stephen Porges (another internationally celebrated scientist, widely known for his Polyvagal Theory). The second is an article and interview written by their son, Seth Porges, journalist. The third paper explains oxytocin's role in the evolution of human behavior.
1. The biochemistry of love: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537144/
2. Seven things you didn't know about oxytocin: https://www.forbes.com/sites/sethporges/2016/02/12/7-things-you-probably-didnt-know-about-oxytocin-and-the-science-of-love/#bd37080670b3
3. Oxytocin Pathways and the Evolution of Human Behavior: http://ccare.stanford.edu/wp-content/uploads/2013/09/Oxytocin-Pathways-and-the-Evolution-of-Human-Behavior.pdf
Dr. Carter has shown interest in our experiment and has been very supportive to me over the last year so it was a great honor to finally meet her. Talking with her has inspired me to continue to learn more about oxytocin and to understand other untreated conditions (social impairment, compulsive behaviors, anxiety, etc.) that may be connected to the impaired oxytocinergic system of people with pituitary/hypothalamic tumors. I am very excited about a research study that is launching from Stanford University on this subject and will post more info about it after I gain permission from the principal investigator.
Friday, August 18, 2017
100) Back from family camp: being Mrs. Gloop
We had a very nice week-long trip at our favorite summer family camp destination where we participated in many musical and other performance arts activities. I played Mrs. Gloop in the Willy Wonka and the Chocolate Factory musical production. Unlike Kitchen Bitch, Mrs. Gloop loves to indulge her son, Augustus (whom I'm certain has hypothalamic obesity and hyperphagia!), in all the treats he can muster to eat. I sang a solo with Augustus to celebrate his gluttony (sung with an exaggerated German accent):
MRS. GLOOP:
Ve give him...
Fruit juice for breakfast
Plus melons und mangos
Und cereals, bananas, and cream!
AUGUSTUS:
Zen fried eggs mit bacon
Tomahtoes und mushrooms
Mit bread rolls und buns by ze ream!
BOTH:
Und coffee und toast
Spread mit butter und marmalahd
Sweetmeats und neat treats galore!
MRS. GLOOP:
Und vat does Augustus do ven breakfast's through?
AUGUSTUS:
I eat more, I eat more, I eat more I eat more, I eat more!
MRS. GLOOP:
Und vat does Augustus do ven breakfast's through?
AUGUSTUS:
I eat more, I eat more, I eat more I eat more, I eat more!
Well, we had a great time performing the musical and of course I could not help smirking at the irony of my role in the play. While I did not behave exactly like Mrs. Gloop towards Sasha, we also made a conscious decision to resist policing him during the week.
The spread of food was abundant and it was always hellish to police Sasha in the pre-oxytocin days: food is served buffet-style. Although the food is delicious and well-prepared with healthy options (an amazing salad bar every meal, for example), there are also an array of "carbolicious" foods at every meal (breakfast cereals, breads, pasta, pizza, rice, some desserts, etc.) in addition to there being bread, butter, peanut butter, and jelly available all through the day until midnight. In the past, we used to check up on him whenever we could during and between classes but it was impossible unless we were with him in every class (which we weren't). This was the first year going to camp since having him on the therapeutic dose of oxytocin so we decided to just let go...
Well, he definitely took full advantage of his food freedom and chowed down pretty well on the high carb foods and on the peanut butter sandwiches between every meal. We did our best to just let him make his own decisions about food choices and to resist the urge to control him. As a result, he ended up gaining 3 kilos (7 pounds) during the week! I am not surprised about his desires to indulge himself since we do not stock these types of foods at home. I am also not surprised that he gained all the weight that he did during the week of excessive carbohydrate consumption. He was not the only one who gained; the rest of us also put on some extra pounds, thanks to the buffet-style meals. Fortunately, it has been very easy to resume our lower carb (50- 100 g/day) lifestyle back at home. As expected, Sasha has returned right back to his home eating habits and is losing weight (over one kilo lost in last five days) rapidly once again. At his endo appointment yesterday, his doctor was very impressed with his weight loss (BMI at 22.5) and she saw him with his net weight gain after returning home from vacation.
I have learned that Sasha can and will behave somewhat like Augustus if given the opportunity. Oxytocin is not a magic weight loss drug. If one eats like Augustus Gloop, one will gain weight (yes, even with oxytocin). Fortunately, our all-you-can-eat vacation lasted only one week and resuming our moderate eating and lower carb lifestyle (with help from oxytocin) makes it possible to lose the weight he gained.
We have one last vacation to Seattle before Sasha starts high school (gulp). In Seattle, we will do some sight seeing, visit friends, and I plan to meet up with pedi-endo and HO expert (co-author) Dr. Christian Roth at the University of Washington, to discuss and hopefully wrap up the editing of the OT/Naltrexone case report I plan to submit for publication soon.
We have one last vacation to Seattle before Sasha starts high school (gulp). In Seattle, we will do some sight seeing, visit friends, and I plan to meet up with pedi-endo and HO expert (co-author) Dr. Christian Roth at the University of Washington, to discuss and hopefully wrap up the editing of the OT/Naltrexone case report I plan to submit for publication soon.
Sunday, August 6, 2017
99) Off Naltrexone, behavior and weight are holding steady
Sasha has been off naltrexone (100 mg/day) for about two weeks now. So far, we haven't seen much of a difference- there were a couple of incidents of more "food intensity" (increased insistence about being in control of food, displays of unhappiness when not getting his own way around food) last week but it may have been because we were more sensitive to changes. Fortunately, there were no signs of extra food sneaking/stealing. His weight has remained exactly the same as it was last week so this is reassuring that the therapeutic effect (re: energy metabolism) of the experiment is remaining intact even with the removal of naltrexone. We have been a little more generous with carbohydrates. He has had some legumes, oatmeal, Chap Jae (Korean glass noodles), and once last week, we even went out for dessert and permitted Sasha to order a bread pudding dessert (modest sized piece but made of sugar and butter and flour). After the sugary dessert, we went back to our regular lower carb eating and it did not seem to trigger any ill effects such as increased carb seeking.
An article about how chronic consumption of sugar blunts activity of pathways that mediate satiety.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175817/
I'm hoping that this implies that non-chronic consumption (an occasional once-a-week treat, perhaps?) may be less risky for the mediation of satiety. If we can keep this balancing act, I will be very pleased indeed!
Tomorrow we are heading to a week-long vacation at our favorite performing arts family camp. They serve excellent tasty and healthy food but there is always the spread of cereals in the mornings and the peanut butter and jelly sandwich bar that is there between meal times. We will be performing Willy Wonka and the Chocolate Factory (musical based on book by Roald Dahl) and I have been cast as Mrs. Gloop! The irony has not been lost on me. I only hope that Sasha does not behave like Augustus Gloop at camp...
An article about how chronic consumption of sugar blunts activity of pathways that mediate satiety.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175817/
I'm hoping that this implies that non-chronic consumption (an occasional once-a-week treat, perhaps?) may be less risky for the mediation of satiety. If we can keep this balancing act, I will be very pleased indeed!
Tomorrow we are heading to a week-long vacation at our favorite performing arts family camp. They serve excellent tasty and healthy food but there is always the spread of cereals in the mornings and the peanut butter and jelly sandwich bar that is there between meal times. We will be performing Willy Wonka and the Chocolate Factory (musical based on book by Roald Dahl) and I have been cast as Mrs. Gloop! The irony has not been lost on me. I only hope that Sasha does not behave like Augustus Gloop at camp...
Thursday, July 27, 2017
98) Sasha is shedding kilos/pounds: finding the lifestyle with the optimal "balance"
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.
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.
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?
Monday, May 29, 2017
91) Progress continues- what is Naltrexone's role in this experiment?
Sasha has now lived with two full months of a partially open kitchen (one snack cabinet and fridge) and has lived 19 days "unlocked and free" (our tongue-in-cheek version of "clean and sober", lol) with a completely open kitchen. He's doing really great with it and every day I feel increasingly more confident that this experiment is working, yay! His weight wobbles up and down slightly but it is staying in the same BMI range at the 87th percentile (9 percentage points lower than when we started OT one year ago).
An interesting anecdote: last time I blogged, Sasha had a very sugar-intensive weekend due to having eaten the birthday party treats and the apple pie his sister baked with a friend. The next day, his dad bought some trail mix which contained very sweet yogurt-covered raisins. His dad rationed out a portion for Sasha and a separate portion for his sister (as you can tell, we rarely buy foods that contain sugar so it is treated like a precious commodity in our house!).
The next day (Monday), Sasha came home from school and promptly handed me his bag of trail mix saying, "please take these away from me, after eating some, I started to feel the food obsession coming back. I don't like that feeling so I don't want to eat these anymore."
Wow.
I was super impressed. First, he was able to notice the return of the craving feelings; second, he was able to communicate with me about it; third, he was able to return the food he no longer wanted to eat! When I spoke with him more about his experience, he said that he noticed some craving feelings after eating the ice cream and pie over the weekend. However, he said that he noticed the feelings VERY strongly after eating the trail mix. He said that he started to obsess and felt consumed with the intention to eat more sweets. He said that it reminded him of how he used to be before experiencing the relief from the OT/naltrexone; that is, always focused on food- what to eat, when to eat, where to get food, how to get it, etc.
Does his experience sound like the workings of addiction? It does to me. It is certainly possible that his growing cravings were due the cumulative effect of eating sweets three days in a row but whatever it was, Sasha was able to identify his feelings AND stop himself from the addiction process that would soon come to pass if he had not given me back the trail mix.
In writing my case report paper, I have been thinking more about the role of naltrexone in our experiment, and in all fairness, I can't really credit oxytocin alone for Sasha's success since he has been taking a combination of OT (6 iu/day) and naltrexone (100 mg/day) since November. Besides needing to eat for energy/survival, people eat for pleasure. In case you don't know, I added naltrexone right after Sasha stole and ate all of his sister's Halloween candy because although he was losing weight (for two months on OT alone), he was continuing to sneak highly palatable food like sweets. Since he is on a low carb eating plan, these high sugar foods are mostly prohibited so it is certainly understandable that he covets these sweet treats. Out of our desire to help curb his taste for these sugary foods, I wondered if the opiate antagonist would help deter him from seeking these foods. Interestingly, I have read lots of papers about naltrexone's role and it seems that one finding definitely fits to describe our experience- i.e.: naltrexone doesn't necessarily deter the craving BUT it can deter a binging session (stop the continuation of eating once started). My alcoholic patients have also reported similar experiences; they can stop at one beer instead of getting blacked-out drunk while taking naltrexone.
For more info on opiate antagonists, please see post #8 which I recently updated to include papers on the role of the dopaminergic (reward) system and opiate antagonists in eating, obesity, and food addiction.
An interesting anecdote: last time I blogged, Sasha had a very sugar-intensive weekend due to having eaten the birthday party treats and the apple pie his sister baked with a friend. The next day, his dad bought some trail mix which contained very sweet yogurt-covered raisins. His dad rationed out a portion for Sasha and a separate portion for his sister (as you can tell, we rarely buy foods that contain sugar so it is treated like a precious commodity in our house!).
The next day (Monday), Sasha came home from school and promptly handed me his bag of trail mix saying, "please take these away from me, after eating some, I started to feel the food obsession coming back. I don't like that feeling so I don't want to eat these anymore."
Wow.
I was super impressed. First, he was able to notice the return of the craving feelings; second, he was able to communicate with me about it; third, he was able to return the food he no longer wanted to eat! When I spoke with him more about his experience, he said that he noticed some craving feelings after eating the ice cream and pie over the weekend. However, he said that he noticed the feelings VERY strongly after eating the trail mix. He said that he started to obsess and felt consumed with the intention to eat more sweets. He said that it reminded him of how he used to be before experiencing the relief from the OT/naltrexone; that is, always focused on food- what to eat, when to eat, where to get food, how to get it, etc.
Does his experience sound like the workings of addiction? It does to me. It is certainly possible that his growing cravings were due the cumulative effect of eating sweets three days in a row but whatever it was, Sasha was able to identify his feelings AND stop himself from the addiction process that would soon come to pass if he had not given me back the trail mix.
In writing my case report paper, I have been thinking more about the role of naltrexone in our experiment, and in all fairness, I can't really credit oxytocin alone for Sasha's success since he has been taking a combination of OT (6 iu/day) and naltrexone (100 mg/day) since November. Besides needing to eat for energy/survival, people eat for pleasure. In case you don't know, I added naltrexone right after Sasha stole and ate all of his sister's Halloween candy because although he was losing weight (for two months on OT alone), he was continuing to sneak highly palatable food like sweets. Since he is on a low carb eating plan, these high sugar foods are mostly prohibited so it is certainly understandable that he covets these sweet treats. Out of our desire to help curb his taste for these sugary foods, I wondered if the opiate antagonist would help deter him from seeking these foods. Interestingly, I have read lots of papers about naltrexone's role and it seems that one finding definitely fits to describe our experience- i.e.: naltrexone doesn't necessarily deter the craving BUT it can deter a binging session (stop the continuation of eating once started). My alcoholic patients have also reported similar experiences; they can stop at one beer instead of getting blacked-out drunk while taking naltrexone.
For more info on opiate antagonists, please see post #8 which I recently updated to include papers on the role of the dopaminergic (reward) system and opiate antagonists in eating, obesity, and food addiction.
Sunday, May 21, 2017
90) So far, so good with open access to food in unlocked kitchen
It's still very early to make any definitive judgments; however, Sasha has been living with a totally unlocked kitchen for 10 days and so far, he's doing very well. I can hardly believe my eyes but he really seems mellow and able to handle the open kitchen with a relaxed attitude. In fact, yesterday Sasha's dad and I went to away for an overnight stay in San Francisco (a 30 minute train ride away) for our anniversary and their uncle Bob came to stay with the kids while we were away. It was Bob's first time staying with Sasha and his sister with the unlocked kitchen and I could tell that Bob was very impressed that we had come so far from the last time he stayed with the kids when everything was still locked up.
In addition to living with unlocked food, Sasha was put to the test with some extra challenges this weekend...
1) His sister brought home half an apple pie yesterday morning that she baked with a friend of hers and put it in the unlocked fridge. She told Sasha that she hoped he could resist eating the pie knowing that this sweet treat was in the fridge. Fortunately, the pie remained untouched in the fridge until the three of them were ready to eat it for dessert last night.
2) Today, Sasha went to the birthday party of his friend, A. Although most kids probably take these things for granted, this was the first birthday party invitation Sasha has received from a friend he made completely on his own. The party goers enjoyed a "Can You Escape" game room and then hung out at the park to toss a frisbee and have lunch (pizza and cake/ice cream). Instead of stressing out about Sasha eating high carb foods or indulging in too much sugar, I felt totally relaxed and carefree. As it turns out, Sasha did great at the party- he ate moderately, had only a modest serving of ice cream, and said he had fun playing the game with the kids. His friend's mom kept an eye on Sasha (even though I hadn't asked her) and she happily reported that he had a great time with a relaxed and moderate attitude towards the food.
The sweet treats over the weekend were definitely out of the norm of our lower carbohydrate food plan. In the past, we would have NEVER trusted him to the pie in the unlocked fridge or to attend a party with pizza, cake and ice cream. Although we do not plan to make it a habit to expose Sasha to these types of foods, it was good to see that he was able to demonstrate moderation around these highly tempting foods.
In addition to living with unlocked food, Sasha was put to the test with some extra challenges this weekend...
1) His sister brought home half an apple pie yesterday morning that she baked with a friend of hers and put it in the unlocked fridge. She told Sasha that she hoped he could resist eating the pie knowing that this sweet treat was in the fridge. Fortunately, the pie remained untouched in the fridge until the three of them were ready to eat it for dessert last night.
2) Today, Sasha went to the birthday party of his friend, A. Although most kids probably take these things for granted, this was the first birthday party invitation Sasha has received from a friend he made completely on his own. The party goers enjoyed a "Can You Escape" game room and then hung out at the park to toss a frisbee and have lunch (pizza and cake/ice cream). Instead of stressing out about Sasha eating high carb foods or indulging in too much sugar, I felt totally relaxed and carefree. As it turns out, Sasha did great at the party- he ate moderately, had only a modest serving of ice cream, and said he had fun playing the game with the kids. His friend's mom kept an eye on Sasha (even though I hadn't asked her) and she happily reported that he had a great time with a relaxed and moderate attitude towards the food.
The sweet treats over the weekend were definitely out of the norm of our lower carbohydrate food plan. In the past, we would have NEVER trusted him to the pie in the unlocked fridge or to attend a party with pizza, cake and ice cream. Although we do not plan to make it a habit to expose Sasha to these types of foods, it was good to see that he was able to demonstrate moderation around these highly tempting foods.
Sunday, May 14, 2017
89) Happy Mother's Day AND Happy Oxytocin Experiment Anniversary!
Today is special for two reasons and I feel that it is meaningful that both occasions share the same day today... the best mother's day present I could ever have is to see the success of this experiment!
From my observations of my son on oxytocin, here's what I've learned over the past year:
1. Oxytocin is a hormone that has benefited my son with weight loss, decreased food focus, improved appetite satiety, metabolic function (elimination of hyperinsulinemia), and improved social motivation with peers.
2. Oxytocin's effect on weight loss may be due to its triple role on:
3. Oxytocin's effect may be enhanced by the addition of naltrexone (opiate antagonist); our addition of (100 mg) naltrexone makes it unclear if oxytocin alone would have produced same effects reported above.
4. Raising the dose from as little as daily 6 to 9 iu have produced increased food seeking and moodiness (irritability and intensity)- from our experience, "less is more" with oxytocin dosing. This may have to do with OT binding to vasopressin receptors causing increased aggression.
5. Oxytocin is not a "cure all" for hypothalamic obesity with hyperphagia. It is a hormone replacement just like the rest of his hormone replacement medications. DDAVP treats his diabetes insipidus by keeping him from desiccating from excessive urination but his DI still requires careful management (monitoring his ins and outs, checking sodium levels). Likewise, oxytocin has been helpful for weight loss and diminishment of his hyperphagia behaviors but it is still important for us to ensure healthy food choices and to practice some management of access to highly palatable foods (sweets) that he will probably always crave. Even on oxytocin replacement, Sasha will likely have a chronic vulnerability in the area of eating and obesity and this may require his lifelong vigilance.
6. Sasha's aloofness to other kids may be a "thing" related to oxytocin deficiency. In the last year, Sasha has made one friend and has improved in his willingness to interact with classmates at school as evidenced by his daily interaction with kids at lunchtime whether during Magic the Gathering club or at Best Buddies.
and last but not least...
7. There is DEFINITELY hope for the sufferers of HO.
We have experienced life-changing effects of this important neurohormone. Sasha is now being tested with a completely unlocked kitchen, 24 hours a day... so far, so good! We remain excited as we embark upon our second year with oxytocin and hope that positive results from research will open the door to enable others to also experience this hope.
From my observations of my son on oxytocin, here's what I've learned over the past year:
1. Oxytocin is a hormone that has benefited my son with weight loss, decreased food focus, improved appetite satiety, metabolic function (elimination of hyperinsulinemia), and improved social motivation with peers.
2. Oxytocin's effect on weight loss may be due to its triple role on:
- improved metabolic function (weight loss co-occurred with continued food sneaking and Sasha stopped hyper-secreting insulin after starting OT).
- improved physiological satiety/decreased caloric intake (Sasha reports feeling full with less food and stops eating when full)
- improved psychological satiety/decreased food seeking/decreased caloric intake (improvements with physiological satiety have indirectly facilitated decreased food seeking due to psychological satiety. Having less anxiety after years of being conditioned to perceive food scarcity, OT has enabled him to engage in less food seeking).
3. Oxytocin's effect may be enhanced by the addition of naltrexone (opiate antagonist); our addition of (100 mg) naltrexone makes it unclear if oxytocin alone would have produced same effects reported above.
4. Raising the dose from as little as daily 6 to 9 iu have produced increased food seeking and moodiness (irritability and intensity)- from our experience, "less is more" with oxytocin dosing. This may have to do with OT binding to vasopressin receptors causing increased aggression.
5. Oxytocin is not a "cure all" for hypothalamic obesity with hyperphagia. It is a hormone replacement just like the rest of his hormone replacement medications. DDAVP treats his diabetes insipidus by keeping him from desiccating from excessive urination but his DI still requires careful management (monitoring his ins and outs, checking sodium levels). Likewise, oxytocin has been helpful for weight loss and diminishment of his hyperphagia behaviors but it is still important for us to ensure healthy food choices and to practice some management of access to highly palatable foods (sweets) that he will probably always crave. Even on oxytocin replacement, Sasha will likely have a chronic vulnerability in the area of eating and obesity and this may require his lifelong vigilance.
6. Sasha's aloofness to other kids may be a "thing" related to oxytocin deficiency. In the last year, Sasha has made one friend and has improved in his willingness to interact with classmates at school as evidenced by his daily interaction with kids at lunchtime whether during Magic the Gathering club or at Best Buddies.
and last but not least...
7. There is DEFINITELY hope for the sufferers of HO.
We have experienced life-changing effects of this important neurohormone. Sasha is now being tested with a completely unlocked kitchen, 24 hours a day... so far, so good! We remain excited as we embark upon our second year with oxytocin and hope that positive results from research will open the door to enable others to also experience this hope.
Thursday, May 11, 2017
88) Removing all locks!
We are removing all locks from the kitchen today!
We unlocked the refrigerator and his own snack cabinet at the end of March and he has been keeping his BMI in a decent range (23ish, 88th% now) and he looks and feels healthy. He has been eating moderately, there have been almost no reported incidents of food sneaking (only one known to us in the last several weeks), and we've seen a greatly diminished display of food intensity. He is managing his own snack foods well and appears to be ready for the freedom of having access to unlocked food in our house. Up until today, the only remaining locked cabinet has been the family snack cabinet which contains all but Sasha's snack foods. Today we plan to remove the lock from this cabinet as well so now the entire kitchen will be open.
We have been sticking to a mostly lower carb eating plan since we see it as a permanent lifestyle change but we fudge from time to time with keeping tortilla chips or ice cream in the house (if we are hosting a party or if there is a special occasion, for example). During our transition into the unlocked food, we will avoid buying these "special treat" items so as not to tempt Sasha and make it too difficult for him. If he appears to handle the unlocked food and is able to still keep his weight stable, we will consider re-introducing an occasional higher carb item so that he can learn to handle these more tempting foods and (hopefully) be able to eat them occasionally and in moderation as well.
Am I nervous? Yes, it is always scary when we expose Sasha to the next step of food freedom. I am always worried that he will regress, take advantage of the new freedom to overeat and gain weight, or that we will start getting into battles over food again (if I detect increased eating/food intensity on his part and start to become the Kitchen Bitch again)... But am I also hopeful? Yes! I have optimism that we all will learn to handle his freedom, perhaps imperfectly at first...however, I think we will get there with time and practice.
Needless to say, this change marks a momentous and exciting achievement for us. As we are approaching the first anniversary of starting oxytocin (May 14), it feels like a dream come true that we are even considering the removal of locks from the kitchen. Only one year ago, I felt that we were all doomed to living a life in the HO prison. And now... I can anticipate freedom! Oh, what a difference a year with oxytocin can make!
We unlocked the refrigerator and his own snack cabinet at the end of March and he has been keeping his BMI in a decent range (23ish, 88th% now) and he looks and feels healthy. He has been eating moderately, there have been almost no reported incidents of food sneaking (only one known to us in the last several weeks), and we've seen a greatly diminished display of food intensity. He is managing his own snack foods well and appears to be ready for the freedom of having access to unlocked food in our house. Up until today, the only remaining locked cabinet has been the family snack cabinet which contains all but Sasha's snack foods. Today we plan to remove the lock from this cabinet as well so now the entire kitchen will be open.
We have been sticking to a mostly lower carb eating plan since we see it as a permanent lifestyle change but we fudge from time to time with keeping tortilla chips or ice cream in the house (if we are hosting a party or if there is a special occasion, for example). During our transition into the unlocked food, we will avoid buying these "special treat" items so as not to tempt Sasha and make it too difficult for him. If he appears to handle the unlocked food and is able to still keep his weight stable, we will consider re-introducing an occasional higher carb item so that he can learn to handle these more tempting foods and (hopefully) be able to eat them occasionally and in moderation as well.
Am I nervous? Yes, it is always scary when we expose Sasha to the next step of food freedom. I am always worried that he will regress, take advantage of the new freedom to overeat and gain weight, or that we will start getting into battles over food again (if I detect increased eating/food intensity on his part and start to become the Kitchen Bitch again)... But am I also hopeful? Yes! I have optimism that we all will learn to handle his freedom, perhaps imperfectly at first...however, I think we will get there with time and practice.
Needless to say, this change marks a momentous and exciting achievement for us. As we are approaching the first anniversary of starting oxytocin (May 14), it feels like a dream come true that we are even considering the removal of locks from the kitchen. Only one year ago, I felt that we were all doomed to living a life in the HO prison. And now... I can anticipate freedom! Oh, what a difference a year with oxytocin can make!
Thursday, May 4, 2017
87) Interview #3- Sasha explains how he is different on OT now
In my preparation for writing a paper on this OT experiment, I have been trying to recall the timeline of all the changes we have seen so I have been reviewing old posts to help jog my memory. I ran across a couple of posts (#5 & #17) written way back in July when I started the blog. At this time, I thought I was noticing some amazing changes with his reduced appetite so I interviewed Sasha to ask him about his experience with oxytocin. I later learned that during the time of the second interview, he was very likely sneaking food and lying about it. I felt completely betrayed and angry about being deceived by him but when I calmed down, I realized that the sneaking AND the lying about it was an integral part of his HO condition. He was obviously still in its clutches so I still had some more work to do to help him. To my disappointment, I learned that he would not be a reliable source as a reporter about his experience since he was motivated to lie if necessary in order to get his food fix (#32). When I started to introduce a system for Sasha to track his own temptations and food sneaking, I made the mistake of rewarding him for having a "sneak-free" week but realized later that I was only rewarding him to be a more skilled food thief or liar (#52)! It took me a while but I finally figured out that I have to assume that Sasha will always lie by default about matters pertaining to food until he is truly freed from of his excessive hunger and hyperphagia.
To be perfectly honest, I still don't know if he is freed from HO now nor do I know if I can trust him to tell the truth about his relationship to food. After all, the nature of HO/hyperphagia is for the sufferer to satisfy his intense hunger as a means to survival. Well, survival is a pretty compelling motivation so I can certainly understand why a person would need to lie, cheat, and steal for food.
Even though I still have a skeptical voice in my head about Sasha's ability to be truthful about food, I have seen with my own eyes that he is able to leave food untouched even when it is available to him. I see that he leaves food unfinished now and this even includes food that he finds highly desirable (frozen yogurt). I notice that he appears less pressured about waiting for his next snack or meal. I notice that he is able to handle an unlocked food cabinet by pacing himself pretty well through the week with his snacks. I have not detected any signs of stashed food of late or heard complaints from school about food stealing incidents (except for once when he helped himself into his friend's cabinet to take a granola bar). And he has done most of this while decreasing his BMI over time. All of these signal to me that he appears to be doing better than he was in July when he claimed to have a reduced appetite.
So... for what it's worth, I talked with Sasha about his recent experience with OT and this is what transpired:
Mom: How's it going with oxytocin? How have you been feeling on OT these past few weeks?
Sasha: It's going well. I don't really think about food as much as I used to.
Mom: Yeah. I was wondering what feels different to you now? For example, do you feel satisfied with less food or do you feel like the food you eat lasts longer so you don't get hungry as quickly?
Sasha: I think both are true. I don't finish my entire meal now compared to before when I would eat everything and still want more. I often don't finish all of my lunch, as you know. Also, I just don't think about food that much anymore. I used to be thinking about it almost all of the time and wondered when I would get to eat again. Oh yeah, now I only eat when I'm hungry.
Mom: I notice that. Sometimes the rest of us are eating dessert and you actually pass on it because you say you're not hungry. That would have never happened before without oxytocin, right?
Sasha: That's right. Now I just eat when I have tummy hunger.
Mom: How's it going with the unlocked snack cabinet? Is it hard to manage the food?
Sasha: No, it's weird. When you first told me that we were going to try to unlock the cabinet, I remember you said that it would be hard in the beginning as I was getting used to it, but that it would someday be a normal thing just having the food out and unlocked. I guess you're right about it because I don't even think about the unlocked cabinet now until I am actually hungry and need to get something to eat.
Mom: Are there still situations that are hard for you? Certain foods that are hard to resist?
Sasha: Yes- I notice that it's still hard for me to not want more foods that we don't get at home- things like graham crackers or cookies. At the Y (Sasha's after school program) I asked the counselor for seconds recently and he asked if I had already had firsts. I told him the truth that I had and he thanked me for telling the truth. I guess I wanted more because it was something you don't buy.
Mom: You mean, higher carb foods?
Sasha: Yeah. Since I don't get to eat those foods at home, they are more special to me.
Mom: I understand. It would be harder for me to resist those tempting foods too if I only got those foods infrequently. But why do you think you are handling food now better than before? It seems like you're less intense about food now but you've been on 6 iu OT and 100 naltrexone for a few months and you seem calmer about food only in the last few weeks.
Sasha: I have no idea. Maybe it's because you guys are trusting me more with food and I feel more relaxed about it? I really don't know why though. (laughs)
So there you have it! Glad it seems to be working!
To be perfectly honest, I still don't know if he is freed from HO now nor do I know if I can trust him to tell the truth about his relationship to food. After all, the nature of HO/hyperphagia is for the sufferer to satisfy his intense hunger as a means to survival. Well, survival is a pretty compelling motivation so I can certainly understand why a person would need to lie, cheat, and steal for food.
Even though I still have a skeptical voice in my head about Sasha's ability to be truthful about food, I have seen with my own eyes that he is able to leave food untouched even when it is available to him. I see that he leaves food unfinished now and this even includes food that he finds highly desirable (frozen yogurt). I notice that he appears less pressured about waiting for his next snack or meal. I notice that he is able to handle an unlocked food cabinet by pacing himself pretty well through the week with his snacks. I have not detected any signs of stashed food of late or heard complaints from school about food stealing incidents (except for once when he helped himself into his friend's cabinet to take a granola bar). And he has done most of this while decreasing his BMI over time. All of these signal to me that he appears to be doing better than he was in July when he claimed to have a reduced appetite.
So... for what it's worth, I talked with Sasha about his recent experience with OT and this is what transpired:
Mom: How's it going with oxytocin? How have you been feeling on OT these past few weeks?
Sasha: It's going well. I don't really think about food as much as I used to.
Mom: Yeah. I was wondering what feels different to you now? For example, do you feel satisfied with less food or do you feel like the food you eat lasts longer so you don't get hungry as quickly?
Sasha: I think both are true. I don't finish my entire meal now compared to before when I would eat everything and still want more. I often don't finish all of my lunch, as you know. Also, I just don't think about food that much anymore. I used to be thinking about it almost all of the time and wondered when I would get to eat again. Oh yeah, now I only eat when I'm hungry.
Mom: I notice that. Sometimes the rest of us are eating dessert and you actually pass on it because you say you're not hungry. That would have never happened before without oxytocin, right?
Sasha: That's right. Now I just eat when I have tummy hunger.
Mom: How's it going with the unlocked snack cabinet? Is it hard to manage the food?
Sasha: No, it's weird. When you first told me that we were going to try to unlock the cabinet, I remember you said that it would be hard in the beginning as I was getting used to it, but that it would someday be a normal thing just having the food out and unlocked. I guess you're right about it because I don't even think about the unlocked cabinet now until I am actually hungry and need to get something to eat.
Mom: Are there still situations that are hard for you? Certain foods that are hard to resist?
Sasha: Yes- I notice that it's still hard for me to not want more foods that we don't get at home- things like graham crackers or cookies. At the Y (Sasha's after school program) I asked the counselor for seconds recently and he asked if I had already had firsts. I told him the truth that I had and he thanked me for telling the truth. I guess I wanted more because it was something you don't buy.
Mom: You mean, higher carb foods?
Sasha: Yeah. Since I don't get to eat those foods at home, they are more special to me.
Mom: I understand. It would be harder for me to resist those tempting foods too if I only got those foods infrequently. But why do you think you are handling food now better than before? It seems like you're less intense about food now but you've been on 6 iu OT and 100 naltrexone for a few months and you seem calmer about food only in the last few weeks.
Sasha: I have no idea. Maybe it's because you guys are trusting me more with food and I feel more relaxed about it? I really don't know why though. (laughs)
So there you have it! Glad it seems to be working!
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| We increased his testosterone dose a few weeks ago and Sasha is now looking more like a teenager |
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| with broader shoulders and chest and a more muscular build |
Tuesday, May 2, 2017
86) BMI Chart: from pre-tumor diagnosis to post-oxytocin improvements
I have been documenting Sasha's weight loss in the blog since he started taking oxytocin on May 14. In my excitement and haste, I neglected to keep track of his height so the graph doesn't show the Body Mass Index (BMI) changes over time, only the current BMI. In my preparation for writing a case study report on Sasha's improvements with OT, I finally requested his BMI graph from his medical record so now you can see the actual BMI changes over time:
Sasha had his craniopharyngioma diagnosed and resected at age 8 (September 2011). You can see that there are a few outliers near age 6 and age 9 (where the question marks are pointed). At the first (?) mark at age 6 the BMI was likely plotted too high and the second (?) mark at almost age 9 was likely plotted too low; both points were probably just plotted erroneously. Although there may be other outliers that were plotted in error (age 10), you can also see that for the most part up until age 12, Sasha's BMI was well over the 95%.
To our dismay, Sasha was recommended to follow a "low fat" diet out of surgery and this would (unbeknownst to us) end up having adverse consequences on his metabolic health and BMI. Some background to his diet recommendations: right out of surgery in September, 2011, Sasha had extremely high triglycerides: 7,300 (yes, you read that correctly- under 150 is normal, 500 and over is considered "very high"). Most physicians had not seen such high TGs before and it was alarming to say the least. I can still remember the day the nurse drew his blood and it was bright pink with blobs of white fat in it. I learned that they took his blood three times because they thought they must have mistakenly mixed up his blood for someone else's because they could not believe an 8 year old boy could have such absurdly high triglycerides. When they came back at the same levels three times in a row, we were warned that he was at risk for developing pancreatitis. To prevent such an attack, he was made to fast for couple of days and this returned his TGs down to 1,400 or so. We knew that he had a genetic predisposition for hyperlipidema and that the endocrine problems from his brain tumor would likely continue to make his cholesterol problems very difficult to manage.
When we consulted a nutritionist, we were advised to keep him on a diet eating no more than 20 grams of fat per day. We were also advised to avoid sugar (but avoiding carbs was not mentioned). Although it was extremely difficult to do, we diligently charted his food intake and kept him to under 20 grams of fat per day. We called this the "low fun diet" because it was that indeed. Since he couldn't eat much fat, he was limited to eating foods like chicken and turkey breast, egg whites, non-fat yogurt, and lots of vegetables. For snacks, we ended up giving him low fat/low sugar crackers, pretzels, etc. Even on this low fun diet, we struggled to keep his TGs down in the 400s. Well, guess what? A large part of his diet ended up being carbohydrates. It wasn't until January 2015 when we consulted with Dr. Robert Lustig, pedi-endo and obesity researcher at UCSF, that we learned he was hypersecreting insulin and that carbohydrates were partly responsible for his hunger, fatigue, weight gain and hyperlipidemia.
ARGH! We were so frustrated to learn that we had been ill advised after THREE years on the horrible low fun diet! As soon as we received Dr. Lustig's advice, we made a drastic switch and changed his diet to a lower carb, low sugar diet. We reintroduced fats and weaned him from his staple of crackers, bagels, cereal, rice, etc. Well, you can see on the chart that after we started this new food regimen, (he had just turned 12), his BMI fell for the first time below the 95th percentile. His lipid panel also improved to mostly within normal range (including his TGs). We attribute this to the lower carb diet. On the lower carb diet, we have tried to keep him to eating between 70 and 100 grams of carbs per day (usually high fiber vegetables, legumes, limited complex carbs and whole grains, modest whole fruit) and we were generous with fats and proteins (meat, dairy, eggs, nuts, olive and coconut oils). We avoided processed sugar, most bread, starchy vegetables, pasta, rice, etc. After the switch in 2015, although he was eating lower carb, it was not a low calorie meal plan- some photos of his typical lower carb lunches:
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| Mixed kale salad, salami/cheese, pistachios and berries |
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| Cauliflower fried "rice", salami and cheese, mixed nuts/sesame sticks, carrots, plum |
Also notable: all the while up until recently, Sasha was also sneaking food and did this with regularity. With the exception of the food he snuck (for which he was caught attempting or successfully doing at least a few times a week at school, home, or in a grocery store), his eating was healthy and his calorie allowance was definitely NOT stingy (when I last kept track on Myfitnesspal.com a couple of years ago at the outset of the low carb diet, he was eating about 1900-2000 calories a day).
The most remarkable changes on the BMI chart occurred after the mid-way point in his 13th year. You can see that his BMI started to fall significantly. We started experimenting with OT in May 2016 and with the experimentation, we believe the incorrect (too high) dose may have even caused him to increase his food seeking in the beginning. We changed his dose to an every-three day 6 iu dose and although we saw some reduced appetite over the summer, we know he was still sneaking food on the side. He hit his peak weight in July 2016 (age 13.5). It was when we got him on a daily 6 iu dose of OT at the end of August that his BMI just started to drop. Today he is somewhere in the 86th percentile for BMI, a far cry from his 99th and above percentile from the old pre-oxytocin days!
Have hope for HO!
Saturday, April 29, 2017
85) How's your hypothalamic health? (Part 2)
Following up from the last post, I have always known that Sasha sustained significant hypothalamic damage as evidenced by his many functional impairments; it had never been confirmed by any radiology reports, however. Recently, Sasha's hypothalamic damage was brought to light after Dr. Christian Roth reached out and offered to evaluate Sasha's post-operative MRI scans using his semi-quantitative scoring system: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5029599/
Curious to see what it would reveal, I readily agreed and sent him a couple of scans to evaluate. Not surprisingly, the evaluation and "score" of his two MRIs indicated that he had very high risk of HO (in one scan, he scored a "6" and in the other scan, he had a "7" with "7" corresponding to the highest risk for having HO). As reported by Dr. Roth, "damage includes the anterior medial and posterior hypothalamus, and also mammillary bodies, and also the floor of the third ventricle. His ventricles also look enlarged." Although getting a score as severe as Sasha's is not exactly good news, it IS good news that Sasha has somehow been able to lose weight, maintain it, improve his overall metabolic health, and reduce his hyperphagia behaviors in spite of it all. Although he is just a single case example, it provides some compelling evidence that our experimental treatment with oxytocin (and naltrexone) gives hope to those with even the highest HO risk.
It is also my hope that researchers investigate the effectiveness of OT at varying doses (by itself and in combination with naltrexone) for people with HO. It would also be interesting to see if and how OT treatment works on HO sufferers with and without hyperphagia.
What if someday all survivors with posterior pituitary and hypothalamic lesions could have their MRI scans evaluated and scored to assess their HO risks? And what if, one day, that assessment would simply get them directed to an evidence-based treatment? Maybe it might even be oxytocin?
Curious to see what it would reveal, I readily agreed and sent him a couple of scans to evaluate. Not surprisingly, the evaluation and "score" of his two MRIs indicated that he had very high risk of HO (in one scan, he scored a "6" and in the other scan, he had a "7" with "7" corresponding to the highest risk for having HO). As reported by Dr. Roth, "damage includes the anterior medial and posterior hypothalamus, and also mammillary bodies, and also the floor of the third ventricle. His ventricles also look enlarged." Although getting a score as severe as Sasha's is not exactly good news, it IS good news that Sasha has somehow been able to lose weight, maintain it, improve his overall metabolic health, and reduce his hyperphagia behaviors in spite of it all. Although he is just a single case example, it provides some compelling evidence that our experimental treatment with oxytocin (and naltrexone) gives hope to those with even the highest HO risk.
It is also my hope that researchers investigate the effectiveness of OT at varying doses (by itself and in combination with naltrexone) for people with HO. It would also be interesting to see if and how OT treatment works on HO sufferers with and without hyperphagia.
Saturday, April 22, 2017
84) Getting used to the "new, new normal"- what are the functions of the hypothalamus anyway?
Ho hum, our lives are kind of boring now without the HO Monster rearing its ugly head. Not that I miss that "excitement"- I guess I'm saying that that I am getting used to the "new, new normal." We are continuing the open snack cabinet and things are going well. Sasha's weight is stable more or less. He had his testosterone dose almost doubled last week so we will expect some weight gain from possible increased appetite, muscle and bone density, and height growth. If he continues to do well with his open snack cabinet, the next exposure will be to continue with the snack cabinet and to have the fridge unlocked 24 hours a day (right now, the fridge is unlocked only during the day time).
We finally got our fresh batch of oxytocin in the mail. Due to our trip in New York and my forgetting to order the refill on time, the OT refill was delayed and then further delayed when the pharmacy neglected to send the order after the weekend. I believe we were using OT that was expired by one week. We noticed that toward the last couple of days before we received the fresh batch, Sasha was showing slightly more food interest; talking about food more and showing a little more urgency to eat. However, it still paled in comparison to how he used to be pre-OT. In the old days, food seemed to be constantly on his mind (and our minds, by proxy). If he wasn't actively eating it, he was cooking it, asking for it, talking about it, plotting to sneak it, sneaking it, lying about it, and/or melting down over it. Now that he's back on the newly compounded drug, he's back to a moderate appetite, no evidence of sneaking food, varied topics of conversation (not limited to food only). As a result, we have a much more peaceful household and a feeling of normalcy again.
As I may have shared before, certain researchers have taken a keen interest in our experiment and one in particular has asked to see his post-operative MRI scans to see if they might reveal information about the specific areas and extent of his hypothalamic damage. For more information of hypothalamic anatomy and functions, see website: http://humanbrainfacts.org/hypothalamus.php.
Besides the obvious excessive hunger/appetite/weight gain from his hypothalamic obesity, we are certain that Sasha has suffered extensive damage post-surgery due to the impairment in several homeostatic functions:
1) Poor temperature regulation. In the past, he was physically unable to sweat no matter how hot he felt and no matter how warm the air temperature. He also has a hard time warming up in the cold conditions. Once he suffered a very scary adrenal crisis and became bradycardic (heart rate slowed to 30 beats per minute) and his rectal temperature dipped down 87 F (30.5 C). Despite this dangerously low body temperature, Sasha did not even shiver! Interestingly enough, although he is still rather heat intolerant- he prefers the temperature to not exceed 75 F (23.8 C) or he feels uncomfortably hot- he now reports that he sweats a little on his head! We are not sure why or when this changed but it appears to have been improved in the last year- could this be due to oxytocin? Who knows?
2) Poor circadian rhythm regulation. His sleep is often disrupted with difficulties staying asleep (waking in the middle of the night, 3 am is typical). He also has had day time somnolence. We try to rectify his irregular sleep with good sleep hygiene (regular bedtime, removal of electronics at night) and low dose melatonin before bedtime and stimulants during the day for wakefulness.
3) Non-existent thirst mechanism. Yet another missing homeostatic function that is missing with Sasha is his thirst instinct. He doesn't have one and this makes his Diabetes Insipidus extremely challenging to manage. While most people with intact thirst can manage DI by drinking when they are thirsty to prevent dehydration, Sasha relies on an extremely high dose of DDAVP (0.2 x 20 pills per day), frequent weighings, forced drinking (although the Kitchen Bitch has mostly retired, the Water Witch is alive and well, alas!), and weekly lab draws to check his electrolytes (sodium). While he has had a history of needing to be controlled from eating to excess, we have the exact opposite problem with his drinking since he has NO DESIRE whatsoever to drink any fluids. His sodium levels have been in the high 160s (normal is between 135 and 145) and he still has no inkling of thirst even at these dangerously high Na levels. This missing homeostatic function is a very grave one, indeed, and we often wonder how long Sasha would be able to live independently without dessiccating to death if we weren't around to nag and bribe him to drink water. Although oxytocin is supposed to also have antidiuretic properties, we have not noticed much extra water retention with his oxytocin. Perhaps this is due to the fact that he takes only a relatively low dose of OT?
4) Impaired social motivation. I've documented frequently in this blog how Sasha lacked any interest in forming friendships with his peers. Now that he is taking OT, he has made and maintained a friendship with a boy his age. Although I would say he has only this one close friend, he has been demonstrating increased friendliness and sociability at school with his classmates and hanging out with kids during lunch time every day (rather than hanging out exclusively with his para-educator aide). His demonstrated improvements have been enough to meet his IEP goal in this topic area.
5) Excessive hunger, food seeking, and weight gain. This area does not require much elucidation since it is the main topic of this blog. To our relief, OT has provided great improvements in all of this areas related to his excessive hunger, food seeking problems as well as improvement in his metabolic health.
6) Compulsive behaviors. Although not well known in the medical literature, it has been anecdotally observed by caregivers and craniopharyngioma patients that there is a prevalence of compulsive behaviors in association with hypothalamic obesity. As I've mentioned, Sasha had a history of acquiring items for a collection and many of his cranio peers have also had similar tendencies or have demonstrated other types of stereotypic, OCD-like behaviors. This article sums up how is also related to a hypothalamic function: http://news.yale.edu/2015/03/06/multitasking-hunger-neurons-also-control-compulsive-behaviors. Since being on oxytocin, Sasha has since stopped his compulsive collecting behaviors.
Functionally, I think it is obvious that Sasha has suffered a significant amount of hypothalamic damage. However, from what I understand, it is quite difficult to ascertain damage to the hypothalamus from examining scans alone... we will see how much information can be gleaned from his scans, to be determined.
We finally got our fresh batch of oxytocin in the mail. Due to our trip in New York and my forgetting to order the refill on time, the OT refill was delayed and then further delayed when the pharmacy neglected to send the order after the weekend. I believe we were using OT that was expired by one week. We noticed that toward the last couple of days before we received the fresh batch, Sasha was showing slightly more food interest; talking about food more and showing a little more urgency to eat. However, it still paled in comparison to how he used to be pre-OT. In the old days, food seemed to be constantly on his mind (and our minds, by proxy). If he wasn't actively eating it, he was cooking it, asking for it, talking about it, plotting to sneak it, sneaking it, lying about it, and/or melting down over it. Now that he's back on the newly compounded drug, he's back to a moderate appetite, no evidence of sneaking food, varied topics of conversation (not limited to food only). As a result, we have a much more peaceful household and a feeling of normalcy again.
As I may have shared before, certain researchers have taken a keen interest in our experiment and one in particular has asked to see his post-operative MRI scans to see if they might reveal information about the specific areas and extent of his hypothalamic damage. For more information of hypothalamic anatomy and functions, see website: http://humanbrainfacts.org/hypothalamus.php.
Besides the obvious excessive hunger/appetite/weight gain from his hypothalamic obesity, we are certain that Sasha has suffered extensive damage post-surgery due to the impairment in several homeostatic functions:
1) Poor temperature regulation. In the past, he was physically unable to sweat no matter how hot he felt and no matter how warm the air temperature. He also has a hard time warming up in the cold conditions. Once he suffered a very scary adrenal crisis and became bradycardic (heart rate slowed to 30 beats per minute) and his rectal temperature dipped down 87 F (30.5 C). Despite this dangerously low body temperature, Sasha did not even shiver! Interestingly enough, although he is still rather heat intolerant- he prefers the temperature to not exceed 75 F (23.8 C) or he feels uncomfortably hot- he now reports that he sweats a little on his head! We are not sure why or when this changed but it appears to have been improved in the last year- could this be due to oxytocin? Who knows?
2) Poor circadian rhythm regulation. His sleep is often disrupted with difficulties staying asleep (waking in the middle of the night, 3 am is typical). He also has had day time somnolence. We try to rectify his irregular sleep with good sleep hygiene (regular bedtime, removal of electronics at night) and low dose melatonin before bedtime and stimulants during the day for wakefulness.
3) Non-existent thirst mechanism. Yet another missing homeostatic function that is missing with Sasha is his thirst instinct. He doesn't have one and this makes his Diabetes Insipidus extremely challenging to manage. While most people with intact thirst can manage DI by drinking when they are thirsty to prevent dehydration, Sasha relies on an extremely high dose of DDAVP (0.2 x 20 pills per day), frequent weighings, forced drinking (although the Kitchen Bitch has mostly retired, the Water Witch is alive and well, alas!), and weekly lab draws to check his electrolytes (sodium). While he has had a history of needing to be controlled from eating to excess, we have the exact opposite problem with his drinking since he has NO DESIRE whatsoever to drink any fluids. His sodium levels have been in the high 160s (normal is between 135 and 145) and he still has no inkling of thirst even at these dangerously high Na levels. This missing homeostatic function is a very grave one, indeed, and we often wonder how long Sasha would be able to live independently without dessiccating to death if we weren't around to nag and bribe him to drink water. Although oxytocin is supposed to also have antidiuretic properties, we have not noticed much extra water retention with his oxytocin. Perhaps this is due to the fact that he takes only a relatively low dose of OT?
4) Impaired social motivation. I've documented frequently in this blog how Sasha lacked any interest in forming friendships with his peers. Now that he is taking OT, he has made and maintained a friendship with a boy his age. Although I would say he has only this one close friend, he has been demonstrating increased friendliness and sociability at school with his classmates and hanging out with kids during lunch time every day (rather than hanging out exclusively with his para-educator aide). His demonstrated improvements have been enough to meet his IEP goal in this topic area.
5) Excessive hunger, food seeking, and weight gain. This area does not require much elucidation since it is the main topic of this blog. To our relief, OT has provided great improvements in all of this areas related to his excessive hunger, food seeking problems as well as improvement in his metabolic health.
6) Compulsive behaviors. Although not well known in the medical literature, it has been anecdotally observed by caregivers and craniopharyngioma patients that there is a prevalence of compulsive behaviors in association with hypothalamic obesity. As I've mentioned, Sasha had a history of acquiring items for a collection and many of his cranio peers have also had similar tendencies or have demonstrated other types of stereotypic, OCD-like behaviors. This article sums up how is also related to a hypothalamic function: http://news.yale.edu/2015/03/06/multitasking-hunger-neurons-also-control-compulsive-behaviors. Since being on oxytocin, Sasha has since stopped his compulsive collecting behaviors.
Functionally, I think it is obvious that Sasha has suffered a significant amount of hypothalamic damage. However, from what I understand, it is quite difficult to ascertain damage to the hypothalamus from examining scans alone... we will see how much information can be gleaned from his scans, to be determined.
Sunday, April 16, 2017
83) Another candy-intensive holiday: Easter
We returned from our trip to New York and were very glad to have had a wonderful trip together as a family and that we all stayed healthy and in good spirits for the trip. Sasha did very well throughout in regards to his food issues. As I reported in my last post, we took advantage of the great food in New York and relaxed our normal lower carb regime quite a bit. Sasha gained a little bit of weight (2/3 of a pound or .3 kg) during the trip... I'm sure I gained much more, LOL! Because we were away, I was late in re-ordering the refill for oxytocin so we are now using slightly expired (on 4/13) medicine. I'm not too worried about it though because despite its very short half-life, it has been shown in the literature to have lasting effects for up to 7-10 days even after complete cessation of the drug. It will be interesting to see if any of his food intensity returns in these last two days before his new batch arrives. In any case, a fresh supply will arrive on Tuesday.
If you recall, we had quite a bit of trouble with Sasha when he got into his sister's Halloween candy supply last October (despite it being locked up) which is what prompted my getting him to start Naltrexone (he remains on 100 mg of this opiate antagonist drug). Another candy-intensive holiday is before us today with Easter. For today I agreed to let the kids have an egg hunt (with those plastic eggs you fill with candy). I went out and bought some M&Ms to fill and his sister was in charge of hiding them for Sasha and his friend (who was over). She hid the candy-filled eggs in our backyard and ended up stashing the remaining candy it in her room, unbeknownst to me. Sasha and his buddy were occupied with a computer game.
No more than one hour after Sasha's sister hid the eggs and the remaining candy, she told me that the bag of remaining candy was missing! She swore that she hid the candy in a safe place in her room, that she kept her bedroom door closed when she was in another room of the house, and that when she returned to her room, the door was open and the candy was gone. I took Sasha aside and asked him about it and he denied taking the candy. His friend even vouched for him saying that Sasha had not left his side in the last hour. Ugh... here we go again, I thought. His sister kept insisting that the candy was hidden away and that it was now missing. He kept saying that he did not take the candy. I decided to drop it for the time being since he had a friend over and to look for it in his room later. When he and his friend were playing in the living room, I had a chance to check his room and I found no candy.
Hours later when I was out for the evening, my husband texted me and told me that his sister found her candy in another hiding spot in her room! She apologized right away to her brother and he graciously accepted her apology and moved on.
In the past, it was always Sasha accused (rightfully so) of stealing his sister's stash and Sasha melting down while his sister experienced her own mix of emotions: anger for the unfairness of losing her treat to her brother, frustration at her brother for his behavior, sorrow for herself, compassion and understanding for his inability to control himself, and finally, submission to her role as the sibling of a brain tumor survivor with HO. She has not told me with these words per se, but has expressed all of these feelings throughout the time we have had to deal with his issues as a family. When I asked her later how she felt about finding her stash of candy, she said that she felt "really bad." I was slightly annoyed at her for the wrongful accusation but I understood why she did it; he started quite a precedent for her accusations, after all.
Despite whatever embarrassment, guilt or remorse any of us may have felt for this mistaken accusation, we all felt great relief and happiness for Sasha's vindication.
Happy Easter, Happy Passover, Happy Spring!
If you recall, we had quite a bit of trouble with Sasha when he got into his sister's Halloween candy supply last October (despite it being locked up) which is what prompted my getting him to start Naltrexone (he remains on 100 mg of this opiate antagonist drug). Another candy-intensive holiday is before us today with Easter. For today I agreed to let the kids have an egg hunt (with those plastic eggs you fill with candy). I went out and bought some M&Ms to fill and his sister was in charge of hiding them for Sasha and his friend (who was over). She hid the candy-filled eggs in our backyard and ended up stashing the remaining candy it in her room, unbeknownst to me. Sasha and his buddy were occupied with a computer game.
No more than one hour after Sasha's sister hid the eggs and the remaining candy, she told me that the bag of remaining candy was missing! She swore that she hid the candy in a safe place in her room, that she kept her bedroom door closed when she was in another room of the house, and that when she returned to her room, the door was open and the candy was gone. I took Sasha aside and asked him about it and he denied taking the candy. His friend even vouched for him saying that Sasha had not left his side in the last hour. Ugh... here we go again, I thought. His sister kept insisting that the candy was hidden away and that it was now missing. He kept saying that he did not take the candy. I decided to drop it for the time being since he had a friend over and to look for it in his room later. When he and his friend were playing in the living room, I had a chance to check his room and I found no candy.
Hours later when I was out for the evening, my husband texted me and told me that his sister found her candy in another hiding spot in her room! She apologized right away to her brother and he graciously accepted her apology and moved on.
In the past, it was always Sasha accused (rightfully so) of stealing his sister's stash and Sasha melting down while his sister experienced her own mix of emotions: anger for the unfairness of losing her treat to her brother, frustration at her brother for his behavior, sorrow for herself, compassion and understanding for his inability to control himself, and finally, submission to her role as the sibling of a brain tumor survivor with HO. She has not told me with these words per se, but has expressed all of these feelings throughout the time we have had to deal with his issues as a family. When I asked her later how she felt about finding her stash of candy, she said that she felt "really bad." I was slightly annoyed at her for the wrongful accusation but I understood why she did it; he started quite a precedent for her accusations, after all.
Despite whatever embarrassment, guilt or remorse any of us may have felt for this mistaken accusation, we all felt great relief and happiness for Sasha's vindication.
Happy Easter, Happy Passover, Happy Spring!
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