As Sasha experienced his first weekend of the exposure hierarchy, we experienced a little anxiety- we had already started loosening things up a little over the last couple of months but it has always been with extreme caution and trepidation. With our official exposure hierarchy starting up, I felt some anticipation...would it backfire? Would he fail to advance? Would we have to deal with too much rule breaking and have to resort back to our awful policing again? Would he just take advantage of his newfound freedom and end up overeating and gaining weight? Would I unravel and be unable to contain Kitchen Bitch?
Although it is extremely early to judge, I am relieved to report that none of these things happened over the weekend! We started by practicing some easier exposure tasks. We started with our lowest anxiety task of having Sasha make a meal with the fridge unlocked and with "light" supervision from us. We did two sessions of this task and he did well with no detectable problems of rule breaking (by either party) or meltdowns. He reported his anxiety/temptation level as low both before and after the tasks. To my surprise, he actually volunteered to me that his anxiety/temptation levels would be rated higher depending on what is in the fridge and he even listed salami and cheese as food items that will raise his temptation levels. I was glad that he was thinking in this manner and that he was forthright enough to mention it to me so that we can be mindful of it as we go through our exposures. Although there was one incident of food stashing (where I caught Sasha in the middle of the night with a pack of nuts/dried fruit), it was due to his dad's carelessness when he left the snack cabinet open without supervising Sasha. I pointed out to his dad that leaving the snack cabinet unlocked was clearly an advanced exposure task and one that Sasha was not ready to attempt. I even apologized to Sasha about the mistake and made sure he knew that his stashed snack was due to our unintended neglect to lock the cabinet and not his fault for having given in to temptation.
Besides venturing into starting the exposure hierarchy, it has been a very social weekend with lots of food/entertainment which we handled quite well. On Friday, we had friends over for dinner at our house. Sasha ate a good-sized portion of food but was able to stop short of pigging out (nuts, cheeses, veggies, olives, and crackers for appetizers & shish kabobs, green salad for dinner & watermelon for dessert). On Saturday night, we attended a city-wide outdoor dinner (potluck burrito bar and his own low-carb chocolate macaroons and strawberries for dessert). Today we attended a charity event for the Pediatric Brain Tumor Foundation where he and his sister participated as models in a fashion show. They offered a buffet spread of brunch finger foods including muffins, bagels with cream cheese, skewered fruits, egg frittata. Despite the fact that some of these events (especially the buffet food spread today) are considered "advanced" on his exposure hierarchy, all in all, things went pretty well at these social events. We supervised him adequately and he behaved himself with a reasonable degree of self-control, given the difficulty level of the event.
As usual, we went to the lab this morning to check his electrolytes as we do every week. As I have previously mentioned, he has diabetes insipidus with absent thirst and it requires that we weigh him several times a day to estimate his hydration levels and then take him to the lab for a serum sodium level. For this reason, we are able to calculate his weight corrected to a normal sodium level. Sasha ate pretty heartily over the weekend and I was hoping that it would not cause a jump in his weight. To my surprise, his weight slightly decreased (by 1/3 kilo or 2/3 of a pound) over the past week!
I had previously thought that any weight lost on oxytocin would be attributed to the decrease in food intake. After all, oxytocin is known as a anorexigenic hormone, causing reduced appetite and eating. Now I wonder if it does more than that... does it increase energy metabolism too? How can he be losing weight when he does not appear to be eating that daintily and when his physical activity levels are not grossly increased?
In looking for some answers on the subject, I came across a few interesting papers on the subject of oxytocin's role in weight control. Given the density of these scientific papers, I was only able to glean a superficial understanding of the main points but I believe they are compelling enough to begin to explain Sasha's ability to lose weight on oxytocin while still attending parties!
This one describes how oxytocin may have an impact on energy metabolism and homeostasis:
https://www.researchgate.net/profile/Valeria_Chaves2/publication/236580181_Role_of_oxytocin_in_energy_metabolism/links/02e7e519537d0e06ed000000.pdf
This article describes the relationship between lower oxytocin levels and those at risk for metabolic syndrome (a cluster of symptoms including abdominal obesity, hypertension, hyperglycemia, dyslipidemia, and insulin resistance):
https://www.jstage.jst.go.jp/article/endocrj/63/7/63_EJ16-0078/_pdf
And finally, if you can wade through the medical-ese of this paper, you will see that it describes the role of hypothalamic neuropeptides (including oxytocin) as being responsible for lipid and glucose metabolism in the body:
http://onlinelibrary.wiley.com/doi/10.1111/j.1749-6632.2010.05800.x/full
Happy reading!
Monday, September 26, 2016
Thursday, September 22, 2016
43) Collaborating on the exposure hierarchy to food freedom
Sasha has been doing pretty well these days. Meltdowns have been more sporadic, he has been losing a little weight over the last few weeks and we have not had any disasters or received bad news from school about his behavior. Whew. We know that he still engages in some food seeking behaviors (taking extra food out of the fridge) but we think that the food seeking may be out of habit and anxiety, rather than hunger. For this reason, we feel compelled to test out oxytocin's ability to control his excess hunger and to see how he handles having increased access to food. As a psychologist who often treats patients with anxiety disorders, I know that the best way to make it successful for us is to expose him very gradually to tasks with increasing difficulty. This is called an "exposure hierarchy" and is used to help people overcome phobias and other avoidant behavior.
The principle of doing an exposure hierarchy is to practice the task, rate the level of anxiety/difficulty, and repeat the task until the anxiety or level of perceived difficulty decreases. If and when the anxiety/perceived difficulty is steadily rated at a lower number, it may indicate that the person has achieved some mastery over the task and is ready to move to the next slightly more challenging task.
I started by drafting a list of tasks for Sasha to practice. Last week in his therapy session, he was asked to rank them in order of difficulty. With the guidance of his therapist, Sasha ranked them in order of difficulty and presented the list to me. After I studied the list, I noticed that some of the tasks that he ranked lower on the scale would have definitely been ranked as highly anxiety provoking to me! For example, he put "unpacking groceries with light supervision" as #4 of 15 tasks but I would rank that as a much harder task, perhaps more like #12 of 15 tasks. It was then that I realized that the exposure hierarchy is as much my exposure hierarchy as it is Sasha's! I re-ranked the list in accordance to how anxious I felt and showed the list to Sasha and his therapist in today's session. I explained to Sasha that if we are to be successful in making progress in the exposure sessions, both he and I would need to come to some agreement about the ranking of the tasks. If he were to try a task that I deemed was easy but he deemed was too hard, he would surely fail and vice-versa, if he were to try a task that I deemed was easy and he felt was too hard, the same failure would ensue.
Before digging into the exposure tasks, Sasha and I needed to define the goals and guidelines of the exercise and they are as follows:
The goal is to increase Sasha's free and legitimate access of food in order to:
Guidelines of engagement for Sasha:
The principle of doing an exposure hierarchy is to practice the task, rate the level of anxiety/difficulty, and repeat the task until the anxiety or level of perceived difficulty decreases. If and when the anxiety/perceived difficulty is steadily rated at a lower number, it may indicate that the person has achieved some mastery over the task and is ready to move to the next slightly more challenging task.
I started by drafting a list of tasks for Sasha to practice. Last week in his therapy session, he was asked to rank them in order of difficulty. With the guidance of his therapist, Sasha ranked them in order of difficulty and presented the list to me. After I studied the list, I noticed that some of the tasks that he ranked lower on the scale would have definitely been ranked as highly anxiety provoking to me! For example, he put "unpacking groceries with light supervision" as #4 of 15 tasks but I would rank that as a much harder task, perhaps more like #12 of 15 tasks. It was then that I realized that the exposure hierarchy is as much my exposure hierarchy as it is Sasha's! I re-ranked the list in accordance to how anxious I felt and showed the list to Sasha and his therapist in today's session. I explained to Sasha that if we are to be successful in making progress in the exposure sessions, both he and I would need to come to some agreement about the ranking of the tasks. If he were to try a task that I deemed was easy but he deemed was too hard, he would surely fail and vice-versa, if he were to try a task that I deemed was easy and he felt was too hard, the same failure would ensue.
Before digging into the exposure tasks, Sasha and I needed to define the goals and guidelines of the exercise and they are as follows:
The goal is to increase Sasha's free and legitimate access of food in order to:
- help Sasha learn how to monitor his intake and make healthy eating choices with increasing independence
- give Sasha more control over his own food choices so that he can overcome his anxiety about food scarcity and learn to trust his own true hunger instincts (rather than his conditioned urges to hoard food due to his habituated state of having excess hunger and food obsessions)
- develop trust in Sasha's ability to manage his food intake (both quantity and quality) so parents feel less need to police him and can decrease policing of Sasha around food
The definition of a successful exposure are as follows:
- anxiety rating decreases over time as the task is repeatedly practiced
- number of "meltdowns" decrease over time as the task is repeatedly practiced
- Sasha abides by the "guidelines of engagement"
- Parents abide by the "guidelines of engagement
The exposure will be rated on the following measures:
- Pre-exposure anxiety/difficulty level of the anticipated task=0-3 (rated by Sasha and parents)
- Post-exposure anxiety/difficulty level of the practiced task=0-3 (rated by Sasha and parents)
- Meltdown intensity= 0-3 Sasha's emotional reactions of anger/anxiety, etc. and tension/anxiety felt and expression by parents (rated by parents)
- Guideline respect by Sasha = 0-3 (rated by parents)
- Guideline respect by parents=0-3 (rated by Sasha)
Exposure hierarchy list (agreed upon by Sasha and both parents):
- Leave fridge unlocked while Sasha is preparing a meal (with light supervision by parents)
- Leave snack cabinet unlocked while Sasha is preparing a meal (with light supervision)
- Leave fridge unlocked for 1 hour during/after a meal
- Leave fridge unlocked for 1 hour during/after snack
- Leave fridge and cabinet unlocked for 1 hour during/after meal or snack
- Take Sasha to grocery store with light supervision (and a pocket check after shopping)
- Let Sasha make a meal with no supervision (fridge unlocked)
- Let Sasha make a meal with no supervision (cabinet unlocked)
- Let Sasha make a meal with no supervision (fridge and cabinet unlocked)
- Let Sasha bake with light supervision (and unlocked fridge)
- Having Sasha unpack groceries with light supervision (unlocked fridge and/or cabinet)
- Bringing Sasha to a potluck/buffet dinner with light supervision
- Unlock fridge and cabinets more than 2 hours from meals (9-11 AM or 3-5 PM)
- Unlike fridge overnight
- Bring Alex to potluck/buffet with no supervision
- Food accessed during the exposure must be eaten in the moment and not stashed away for later consumption.
- Food must be eaten in approved areas in the house (kitchen, dining room only- not in bedroom or bathroom).
- If Sasha is found eating food outside of permitted areas, he will be asked to finish the rest of the food in the dining room or kitchen.
- If Sasha is found to be eating food outside of regular meal/snack time or exposure session or if stashed food is found (in his room or backpack), he will be asked to put the food back until the next meal/snack time or exposure session. If he doesn't comply, that food will be counted as his snack for the morning/afternoon/evening.
- Parents will reserve the right to check his room, pockets or backpack periodically to ensure that the guidelines about "no food stashing" are being respected.
Guidelines of engagement for Parents:
- Parents are not to micromanage via questions, nagging or criticizing of Sasha's eating as long as he is abiding by his guidelines during exposure session.
- Parents constructively review the exposure log with Sasha after every few sessions.
- If Parents disrespect their guidelines, Sasha reserves the right/duty to give parents constructive feedback about his observations
This exposure goals and guidelines are meant to help set expectations so that there is as much clarity as possible for both parties. Even so, I fully expect it to be very challenging for us and Sasha as we navigate these choppy waters. In today's session, we discussed how this model actively encourages Sasha to be as forthright and transparent as possible with us since sneakiness will no longer be necessary during the exposure if he wants to eat something. Sasha understands that his open communication with me will help decrease my anxiety about his food sneaking and my decreased anxiety will help decrease the risk of having Kitchen Bitch around which would help decrease the chances of his meltdowns. All of this, of course, would not be possible if I didn't believe that oxytocin has helped to decrease his intense focus on food. I am only hoping that oxytocin has decreased it enough so that the extra food he will very likely end up eating will NOT result in a huge weight gain or backsliding in his metabolic health.
I suppose we will need to evaluate this exposure hierarchy project closely to tell whether or not we are really ready for it... and if the guidelines are persistently broken or if Sasha fails to progress up to increasingly more challenging tasks- well then, perhaps we will try the Naltrexone or just take it with even more gradual baby steps. No matter what happens, I do know that we won't know if the oxytocin experiment is working unless we try the exposure hierarchy first...
Ready or not, here we come!
Monday, September 19, 2016
42) Updates on Sasha's weight chart May- Mid-October
I have been reluctant to post Sasha's weight changes too soon due to my awareness that Sasha is capable to going both up and down in his weight and that short term fluctuations are not meaningful in the grand scheme of things. Changing lifestyle habits are not easy to do: "Quitting smoking" (according to the late comedian, George Burns), "is easy... I've done it thousands of times." Most people experience losing weight in similar ways- that weight loss is hard but keeping it off is even harder. Even so, I have corresponded with many cranios and others with HO who cannot lose weight despite their very best efforts through diet and exercise. As I've discussed in a previous post, perhaps Sasha has a milder version of the metabolic disorder whereas he is able to keep his weight from climbing steadily through strict policing and watching his carb intake. The next time I go see his endocrinologist, I will get a copy of his weight chart since his resection to check my memory but I believe his history of his BMI since his cranio diagnosis and surgery have shown him to be mostly topping the 99th percentile. I realize that providing a weight chart alone is not the most reliable way of studying his proportional size since he is a growing boy and some weight gain as he grows taller is normal and desirable. That said, I can tell you now that today, his weight is 74.0 kilos (163 pounds) and he was 170 cm (5'7") tall at his last doctor's appointment 1-2 months ago or so. According to the BMI calculator for boys, this puts him at the 25.5 and the 94.4% for his age (considered "overweight"). Personally, I find the BMI calculator too rigid as it doesn't account for muscle mass or general body build. Sasha has his father's massive muscular legs (tree trunks!) so if his legs were normal sized, his weight would certainly be lower. At this current weight, Sasha is at his all time lowest BMI since his brain tumor diagnosis and surgery.
The above chart documents his weight in kilos since starting oxytocin. I have summarized some of the remarkable events that have occurred during this experiment which may explain some of the weight fluctuations.
May 14, 2016
Started his first dose (10 unit sublingual pill)
May 16, 2016
Increased dose to 10 unit pill BID (twice per day)
During this time, we noticed no therapeutic benefit from the oxytocin. It was surmised that it was ineffective due to the method of administration so I requested Dr. Friedman to order the intranasal spray.
June 4, 2016
Began 6 iu spray
June 6, 2016
Increased dose to 6 iu in each nostril (12 iu total per day)
June 9, 2016
Two teachers gave independent feedback that his behaviors were worsening with increased defiance and insistence on eating. Both teachers stated that the worsening behaviors were happening for the last 4 weeks. We noticed increased food seeking episodes and meltdowns at home.
June 12, 2016
Began intermittent spacing of 6 iu every three days
Sasha made steady weight gains (half kilo per week) from May 15 until June 18. Between June 18 and June 25, he lost an entire kilo (this is the week we started noticing the appetite reducing effects of the oxytocin).
June 20, 2016
Sasha began to leave food unfinished on his plate and brought home unfinished food from lunch. He later told me that during this week, he had desires to "hang out" with other kids during lunch.
June 24, 2016
HEFY (Half-Eaten Frozen Yogurt) happened! On this day, he received his 6 iu dose and was able to leave food unfinished for every meal, including dessert. For the two days following HEFY, Sasha asked for unusual desserts (once it was baby carrots and another time it was peanuts).
July 4, 2016
Sasha did not ask for a snack in the late morning when he saw and heard his sister asking for a snack. This was the first time he neglected to obtain a snack when he was exposed to a food cue.
In the late afternoon, we attended a BBQ and he did not park himself permanently in front of the food table for the entire afternoon and evening. He was able to engage in conversations with others, play in the pool, and eat more moderately.
July 7, 2016
Sasha's weight precipitously increased two kilos and July 11, we learned that his thyroid was very low. On July 13, we started him on an increased dose of his T4 and T3.
On July 15, we found that he had a huge chocolate stash and that he was eating excessive amounts of chocolate. We do not know when the chocolate binging began but we are guessing (based on his precipitous weight gain between July 7 and July 11) that it started sometime in the first week of July. On August 5, we received his lab results that both his T4 and T3 levels have returned to being in the high-normal range and that he has lost 1.2 kilos (2.6 pounds) in one week. It is difficult to explain the ratio of which factors account for the weight gains/losses in July. The simultaneous discovery and solving of the chocolate and thyroid problems imply that both were responsible for the weight gains/losses, respectively.
August and September (to present)
His weight climbed again in August and we noticed increased intensity around food. We took several summer trips in August and food security was difficult to maintain and we believe that the lack of food safety posed more temptations for Sasha's food obsession/sneaking. We also surmised that the oxytocin had lost its effect (he was still on the every 3-day 6 iu dose) so we decided he needed a dose change and on August 15, his dose was raised to a daily 6 iu dose. After this dose change, Sasha's weight dropped again and then yo-yo'ed up at the very end of August. So far, in September, his weight has decreased.
I know many readers are very interested in the impact of oxytocin on his weight and although it is not our primary reason for conducting this experiment, it is definitely one of the primary reasons for many to want to try oxytocin! I am curious to see what will happen over time with his weight and I am also curious about the mechanism of weight loss (provided this is the trend over time)... Sasha's current appetite and eating pattern is observed to be moderate but not minimal. He eats moderately and sometimes even heartily but doesn't pig out. In fact, we just returned from a weekend away at a family camp where he even ate more carbs that he is usually allowed (indulged in some potatoes, waffles, pizza and even a cookie) and he STILL came back 1.3 kilos lighter than his last weight check 12 days ago! Interestingly, he also had excellent energy during the entire weekend in spite of the higher carb intake and the warmer weather. Go figure! Maybe oxytocin also helps with improving his metabolism? Or maybe I need to write and publish that book on "how to lose weight on holiday"!
Tuesday, September 13, 2016
41) Are we ready yet? A strategy for letting go
A few weeks ago, Sasha and I went to see an addiction medicine psychiatrist in the Chemical Dependency Recovery Program subspecialty of the Psychiatry Department at the hospital where I work. This appointment was made shortly after I discovered the humongous stashes of chocolate and the leftover wrappers that I found in his room one day. I suspected that he may have great difficulties resisting temptations for sugar, especially chocolate. I explained Sasha's complex medical history including his HO and my attempts to help him with oxytocin. I told him that I believed he behaved in a way that resembled a "carb/sugar addict" and I wondered if an opiate antagonist like Naltrexone might help reduce his urges for sugary foods. After some discussion, Dr. L agreed to provide him with a script for Naltrexone and advised me to try it after optimizing the effects of oxytocin first.
I'm not sure if we have truly optimized oxytocin's therapeutic effect at this point but I do think Sasha may be ready to be tested with increased freedom around food. As I mentioned in my last posting, I fully expect him to have huge hangups about food- how could he not have a bizarro relationship to food with his own obsessive focus on it AND with our hyper-intense micromanagement of his food?? It seems that the next step would be to actually give him some liberties in order for him to learn that 1) food is plentiful and available if needed and 2) there is no need to hoard it or eat in excess anymore and 3) it will be possible to trust oneself and one's body to decide when and how much to eat which could then 4) eliminate the need for the food police to provide external "food security" since "food security" would become an intrinsically felt experience.
I am well aware of how long it could take for Sasha to overcome his deeply engrained anxiety about food given his five year history of feeling intensely hungry and focused on food whilst his parents and other adults imposed strict control and restrictions on what he was allowed to eat and when he was allowed to eat. It's amazing he is as good natured as he is given this very harsh lifestyle he was forced to follow... Needless to say, his food police have also been deeply conditioned to feel high vigilance and anxiety about Sasha's food seeking. It has been a tortured relationship, indeed, that we have had with food in our home!
As I anticipate this transition we plan to make, I am filled with trepidation. I have lived in this paranoid "police state" for so long... despite my loathing for this locked up kitchen and hypervigilance around food, it is familiar and even comforting in a weird way. I can relax in my home with Sasha because I know the food is locked up. I cannot relax with Sasha in someone else's home because I don't know what Sasha will do around the food.
Now that he is on the oxytocin and believe we are seeing how it helps to normalize his appetite, we badly want to trust him. If I could wave a magic wand, I would wish myself the ability to totally trust him and to just let down my guard completely when he is around food. Sigh. If only it were that easy. I have already learned my lesson about the need to ensure some level of security so that he isn't able to go completely whole hog before he's ready (like have access to a 24-hour grocery store's candy collection) so I will be sure to keep up a certain amount of protection even as we transition to more freedom... similar to having a net for trapeze artists, just in case they fall. So I'm not naïve to the challenge of this transition and I know there's no easy way to make these changes, only hard work. The work we will need to do will involve a gradual letting go of control around Sasha and food. I expect that we will start with a relatively manageable task like leaving the fridge unlocked right after meals (after he has eaten and feels full) for an hour or two and then expanding the time. For myself, I know one of the biggest challenges will be to keep my eyes open and my mouth shut if and when I see him taking more food that I think he should have. He may end up overeating or hoarding extra food in the beginning (I will probably still insist that he not be allowed to store or eat food in his room since it is a household rule that we eat only in the kitchen and dining room). I can only hope that over time, he will realize that he doesn't need to hoard or eat extra food since he is no longer having to live with such a feeling of scarcity and lack of control. I must tell myself to be patient with him during this transition!
So far, my plan is to write up a gradual exposure hierarchy with Sasha and his therapist and to have Sasha practice being around these new situations in which he will have more access to food. We will start out very slowly to give him a chance to make food choices with his own discretion...we will test out the waters and I will get some Ativan (kidding, sort of) to calm down my inner Kitchen Bitch...(after all, the Rolling Stones sang about the need for this in their song "Mother's Little Helper") And if Sasha has a really hard time resisting impulses regarding hoarding or stealing food and appears to need some additional support, we will consider adding Naltrexone and see what happens...
I'm not sure if we have truly optimized oxytocin's therapeutic effect at this point but I do think Sasha may be ready to be tested with increased freedom around food. As I mentioned in my last posting, I fully expect him to have huge hangups about food- how could he not have a bizarro relationship to food with his own obsessive focus on it AND with our hyper-intense micromanagement of his food?? It seems that the next step would be to actually give him some liberties in order for him to learn that 1) food is plentiful and available if needed and 2) there is no need to hoard it or eat in excess anymore and 3) it will be possible to trust oneself and one's body to decide when and how much to eat which could then 4) eliminate the need for the food police to provide external "food security" since "food security" would become an intrinsically felt experience.
I am well aware of how long it could take for Sasha to overcome his deeply engrained anxiety about food given his five year history of feeling intensely hungry and focused on food whilst his parents and other adults imposed strict control and restrictions on what he was allowed to eat and when he was allowed to eat. It's amazing he is as good natured as he is given this very harsh lifestyle he was forced to follow... Needless to say, his food police have also been deeply conditioned to feel high vigilance and anxiety about Sasha's food seeking. It has been a tortured relationship, indeed, that we have had with food in our home!
As I anticipate this transition we plan to make, I am filled with trepidation. I have lived in this paranoid "police state" for so long... despite my loathing for this locked up kitchen and hypervigilance around food, it is familiar and even comforting in a weird way. I can relax in my home with Sasha because I know the food is locked up. I cannot relax with Sasha in someone else's home because I don't know what Sasha will do around the food.
Now that he is on the oxytocin and believe we are seeing how it helps to normalize his appetite, we badly want to trust him. If I could wave a magic wand, I would wish myself the ability to totally trust him and to just let down my guard completely when he is around food. Sigh. If only it were that easy. I have already learned my lesson about the need to ensure some level of security so that he isn't able to go completely whole hog before he's ready (like have access to a 24-hour grocery store's candy collection) so I will be sure to keep up a certain amount of protection even as we transition to more freedom... similar to having a net for trapeze artists, just in case they fall. So I'm not naïve to the challenge of this transition and I know there's no easy way to make these changes, only hard work. The work we will need to do will involve a gradual letting go of control around Sasha and food. I expect that we will start with a relatively manageable task like leaving the fridge unlocked right after meals (after he has eaten and feels full) for an hour or two and then expanding the time. For myself, I know one of the biggest challenges will be to keep my eyes open and my mouth shut if and when I see him taking more food that I think he should have. He may end up overeating or hoarding extra food in the beginning (I will probably still insist that he not be allowed to store or eat food in his room since it is a household rule that we eat only in the kitchen and dining room). I can only hope that over time, he will realize that he doesn't need to hoard or eat extra food since he is no longer having to live with such a feeling of scarcity and lack of control. I must tell myself to be patient with him during this transition!
So far, my plan is to write up a gradual exposure hierarchy with Sasha and his therapist and to have Sasha practice being around these new situations in which he will have more access to food. We will start out very slowly to give him a chance to make food choices with his own discretion...we will test out the waters and I will get some Ativan (kidding, sort of) to calm down my inner Kitchen Bitch...(after all, the Rolling Stones sang about the need for this in their song "Mother's Little Helper") And if Sasha has a really hard time resisting impulses regarding hoarding or stealing food and appears to need some additional support, we will consider adding Naltrexone and see what happens...
Sunday, September 11, 2016
40) Growing pains- reflections on the past five years and on what's to come
Sasha recently celebrated his 5 year "cranioversary." That is, five years ago on September 8, 2011, he went under the knife and emerged 14 hours later, forever changed from the surgery which removed the brain tumor whose effects would later be known as panhypopituitarism, visual impairment, and hypothalamic disregulation. These medical terms, as scary as they may sound, pale in comparison to the experiences that we have lived through these past five years.
Sasha has been a brave soul and has weathered intense rehabilitation to try to improve his condition as close as possible back to baseline. Like many cranios, he suffered severe short term memory problems and executive functioning problems. He has undergone speech and physical therapies and has worked with an educational therapist to help him with his learning problems. He has had to (and still does) endure weekly blood draws to check on his electrolytes due to his lack of thirst mechanism and his diabetes insipidus. He has been hospitalized on several occasions when he became acutely ill and suffered a adrenal crisis. The condition of adrenal insufficiency and the crisis brought on by the condition is a life threatening one and we are fortunate indeed that his life was spared during these crises. He has had to deal with chronic fatigue and day time somnolence. He has had to cope with needing to take a number of medications several times a day on which his life is dependent and has learned to give himself injections for his growth hormone (and will be starting testosterone soon as he nears his 14th birthday). He has dealt largely with all of these life-changing issues and problems with the sole support of his small family and helping professionals and with little to no support from friends due to his apparent lack of motivation for peer-friendships. These are a partial list of what he and we have endured these past five years. And of course, Sasha has had to deal with the extremely life-limiting problem involving his food/metabolic issues. These problems, which I've documented here, are what inspired my decision to experiment with oxytocin.
This evening I will join Dr. Friedman when he presents his webinar on the posterior pituitary hormones:
Sunday, September 11, 2016
6:00 pm | Pacific Daylight Time (San Francisco, GMT-07:00) | 1 hr
Meeting number (access code): 801 818 437
Meeting password: hormones
Join by phone
+1-855-797-9485 US Toll freeYou can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat" and the video conference will be posted a few days later on Dr. Friedman's website: http://goodhormonehealth.com/
All are welcome to listen to the webinar: https://axisconciergemeetings.webex.com/mw3000/mywebex/default.do?service=1&siteurl=axisconciergemeetings&nomenu=true&main_url=%2Fmc3000%2Fe.do%3Fsiteurl%3Daxisconciergemeetings%26AT%3DMI%26EventID%3D492180572%26UID%3D0%26Host%3DQUhTSwAAAAIehSNXRzYmluHW5ZMtuhehoJ4P2wSm8KdoIwqkoac1s5QpjrBIoudB69aj_NDKITH04GUKItwGOf_O5PSFjtNt0%26FrameSet%3D2%26MTID%3Dmfd4489a5920c1b71d367349284db700c
As I anticipate the questions I may receive from interested patients or medical providers, I have to admit that it is not easy to come to any conclusions yet as to the efficacy of the oxytocin on Sasha's hyperphagia problems. His appetite appears to be more moderate and so far, his weight fluctuates but appears to be more-or-less stable of late. He still has tendencies to be opportunistic in his seeking of sweets and other junky foods that are prohibited in his eating regimen as I have noted in a recent posting. I surmised that some of the recent food seeking may have been due to the ineffective administration of the spray but that is just a guess. The truth is that it is never clear to us what is REALLY going on because we don't have cameras on him 24/7 and because he is not a reliable reporter of his eating behaviors.
If we believe that the oxytocin is in fact lowering his appetite and giving him the opportunity to obsess less about his hunger and need for food, it will perhaps be possible for Sasha to have a normal relationship with food someday (my primary goal for the oxytocin treatment). As I have noted in a recent post, it is a very complex adjustment we are attempting to make as we try to figure out what new privileges, if any, he is able to handle in his life.
On Friday, we learned that Sasha helped himself to purchase an ice cream sandwich from the ice cream vendor after school. His sister saw him do it and reported it to us. Sasha was very upset (that he had been caught, that he had omitted to tell us about the ice cream, that he bought the "forbidden food" or a combination of all three?) and looked so sad when we told him about our knowledge of the ice cream. We talked with him about how hard it is for him to have been deprived of having access to sweet treats all of these years. We want to believe that he may be able to handle having an occasional treat like ice cream and we would really like to believe that he may one day be trusted to be able to make healthy and reasonable choices for himself around food. I sometimes wonder how he might be different from the millions of overeaters who don't have a brain tumor on the hypothalamus to explain their hyperphagia. These people live in the world, albeit not always in an optimally healthy body, without being followed around by the food police!
If Sasha continues to keep his weight stable, has minimal to no metabolic diseases, and shows signs of having self-control over his food intake (eating with discretion), it seems it would be completely reasonable and natural for him to have more allowances and freedom around food. For the past five years, he has been policed around food. From the police officer's vantage point (ours), the policing has been necessary to keep him from engaging in eating without discretion (eating the wrong foods, stealing food, overeating). From Sasha's perspective, the policing probably intensified his desire for the food and trained him to become even more tricky and deceptive. It has been a vicious cycle, a cat and mouse game and one in which the biggest loser is trust... sadly, HO and our food-policed lifestyle have sacrificed our ability to trust Sasha and Sasha's ability to trust himself. We anticipate that it will be just as difficult to condition ourselves to trust him again as it will be for Sasha to trust himself. To characterize the scene: HO Monster and Kitchen Bitch are in a duel and both have to surrender the weapons in order to make a truce.
We have somehow managed to get him to this point in the experiment where he "looks good on paper" to most endocrinologists... his weight is stable and below the obese range, he is not insulin resistant, his lipid panel is mostly normal, and maybe his hunger/appetite is even starting to normalize. If these positive things remain consistent, we feel that our next task will be to undo the (necessary) damage that has been done to Sasha from our five years of usurping control over his food. We hope that we will be able to find a gentle path back to trusting him and giving him a chance to trust himself and his own body. This is wishful thinking. I don't expect that it will be easy at all and that there will continue to be lots of bumps along this path.
Sasha has been a brave soul and has weathered intense rehabilitation to try to improve his condition as close as possible back to baseline. Like many cranios, he suffered severe short term memory problems and executive functioning problems. He has undergone speech and physical therapies and has worked with an educational therapist to help him with his learning problems. He has had to (and still does) endure weekly blood draws to check on his electrolytes due to his lack of thirst mechanism and his diabetes insipidus. He has been hospitalized on several occasions when he became acutely ill and suffered a adrenal crisis. The condition of adrenal insufficiency and the crisis brought on by the condition is a life threatening one and we are fortunate indeed that his life was spared during these crises. He has had to deal with chronic fatigue and day time somnolence. He has had to cope with needing to take a number of medications several times a day on which his life is dependent and has learned to give himself injections for his growth hormone (and will be starting testosterone soon as he nears his 14th birthday). He has dealt largely with all of these life-changing issues and problems with the sole support of his small family and helping professionals and with little to no support from friends due to his apparent lack of motivation for peer-friendships. These are a partial list of what he and we have endured these past five years. And of course, Sasha has had to deal with the extremely life-limiting problem involving his food/metabolic issues. These problems, which I've documented here, are what inspired my decision to experiment with oxytocin.
This evening I will join Dr. Friedman when he presents his webinar on the posterior pituitary hormones:
Sunday, September 11, 2016
6:00 pm | Pacific Daylight Time (San Francisco, GMT-07:00) | 1 hr
Meeting number (access code): 801 818 437
Meeting password: hormones
Join by phone
+1-855-797-9485 US Toll freeYou can join on a website (that will allow you to hear the presentation and view the slides) or by telephone (that will allow you only to hear the presentation). There will be time for questions by “chat" and the video conference will be posted a few days later on Dr. Friedman's website: http://goodhormonehealth.com/
All are welcome to listen to the webinar: https://axisconciergemeetings.webex.com/mw3000/mywebex/default.do?service=1&siteurl=axisconciergemeetings&nomenu=true&main_url=%2Fmc3000%2Fe.do%3Fsiteurl%3Daxisconciergemeetings%26AT%3DMI%26EventID%3D492180572%26UID%3D0%26Host%3DQUhTSwAAAAIehSNXRzYmluHW5ZMtuhehoJ4P2wSm8KdoIwqkoac1s5QpjrBIoudB69aj_NDKITH04GUKItwGOf_O5PSFjtNt0%26FrameSet%3D2%26MTID%3Dmfd4489a5920c1b71d367349284db700c
As I anticipate the questions I may receive from interested patients or medical providers, I have to admit that it is not easy to come to any conclusions yet as to the efficacy of the oxytocin on Sasha's hyperphagia problems. His appetite appears to be more moderate and so far, his weight fluctuates but appears to be more-or-less stable of late. He still has tendencies to be opportunistic in his seeking of sweets and other junky foods that are prohibited in his eating regimen as I have noted in a recent posting. I surmised that some of the recent food seeking may have been due to the ineffective administration of the spray but that is just a guess. The truth is that it is never clear to us what is REALLY going on because we don't have cameras on him 24/7 and because he is not a reliable reporter of his eating behaviors.
If we believe that the oxytocin is in fact lowering his appetite and giving him the opportunity to obsess less about his hunger and need for food, it will perhaps be possible for Sasha to have a normal relationship with food someday (my primary goal for the oxytocin treatment). As I have noted in a recent post, it is a very complex adjustment we are attempting to make as we try to figure out what new privileges, if any, he is able to handle in his life.
On Friday, we learned that Sasha helped himself to purchase an ice cream sandwich from the ice cream vendor after school. His sister saw him do it and reported it to us. Sasha was very upset (that he had been caught, that he had omitted to tell us about the ice cream, that he bought the "forbidden food" or a combination of all three?) and looked so sad when we told him about our knowledge of the ice cream. We talked with him about how hard it is for him to have been deprived of having access to sweet treats all of these years. We want to believe that he may be able to handle having an occasional treat like ice cream and we would really like to believe that he may one day be trusted to be able to make healthy and reasonable choices for himself around food. I sometimes wonder how he might be different from the millions of overeaters who don't have a brain tumor on the hypothalamus to explain their hyperphagia. These people live in the world, albeit not always in an optimally healthy body, without being followed around by the food police!
If Sasha continues to keep his weight stable, has minimal to no metabolic diseases, and shows signs of having self-control over his food intake (eating with discretion), it seems it would be completely reasonable and natural for him to have more allowances and freedom around food. For the past five years, he has been policed around food. From the police officer's vantage point (ours), the policing has been necessary to keep him from engaging in eating without discretion (eating the wrong foods, stealing food, overeating). From Sasha's perspective, the policing probably intensified his desire for the food and trained him to become even more tricky and deceptive. It has been a vicious cycle, a cat and mouse game and one in which the biggest loser is trust... sadly, HO and our food-policed lifestyle have sacrificed our ability to trust Sasha and Sasha's ability to trust himself. We anticipate that it will be just as difficult to condition ourselves to trust him again as it will be for Sasha to trust himself. To characterize the scene: HO Monster and Kitchen Bitch are in a duel and both have to surrender the weapons in order to make a truce.
We have somehow managed to get him to this point in the experiment where he "looks good on paper" to most endocrinologists... his weight is stable and below the obese range, he is not insulin resistant, his lipid panel is mostly normal, and maybe his hunger/appetite is even starting to normalize. If these positive things remain consistent, we feel that our next task will be to undo the (necessary) damage that has been done to Sasha from our five years of usurping control over his food. We hope that we will be able to find a gentle path back to trusting him and giving him a chance to trust himself and his own body. This is wishful thinking. I don't expect that it will be easy at all and that there will continue to be lots of bumps along this path.
Thursday, September 8, 2016
39) Disaster flashback
Ugh, today we had a tough afternoon. The good news is that we had a full two week respite from disasters and we could appreciate the difference and benefit from the oxytocin. The bad news is that we were visited today by some of the hell we used to experience on a regular basis before oxytocin's beneficial effects... and boy, was it a painful reminder of what we've been living for these past five years!
First of all, to make things worse, my husband is out of town on business and so it was just me, alone, trying to keep things in order. Disaster struck late this afternoon while I was at work. Due to my late work hours and my husband's absence, I had arranged for Sasha and his sister both to walk home in the afternoon to wait for my friend to come over to supervise them and take them to dinner. Their middle school is a 8 minute walk home in a safe residential neighborhood. I gave their after-school director permission to excuse them at a certain time and gave the kids explicit directions to walk directly home. I told Sasha that he was to "weigh and water" himself (the way we keep his electrolytes in more-or-less balance between weekly lab draws for his diabetes insipidus) and to text me his weight so I could be sure he was sufficiently hydrated. The kids were told to hang out at home until my friend arrived (1.5 hours after their arrival home). I would normally not allow Sasha to walk home alone because of his history of buying/stealing food but I thought it would be ok to let him walk home with his sister.
Well, things didn't go as planned and on their walk home, Sasha was hot and complained of ankle pain. It was an unusually warm day and he does have problems walking due to his ankles but this time, he became stubborn and when they reached our street, he refused to move and sat down. His sister tried to convince him to keep walking since they were only (literally) 11 houses away on our block. Sasha became defiant, sullen, shut down and refused to communicate and refused to walk any further. She tried to get him to keep walking but he refused and she got increasingly upset with his stubborn, locked down state. After about 10 minutes of cajoling, she knew that I was expecting a phone call at a certain time and didn't know what else to do so she ran home to make a phone call to me (no, she doesn't have a mobile phone yet but she's going to get one now!). She ended up interrupting a class I was teaching to tell me that she left Sasha on the corner down the street (and as it happens, it was across the street from the high school where there are vending machines). Needless to say, I was very upset to hear this and the timing could not have been worse. I spent several minutes trying to reach him on his phone and finally got a hold him after about 6 attempts. By this time, he was at home and could see how upset he had made his sister for worrying her and how much he had upset me and disrupted my work day with his actions. Although I was irate with him, I was relieved that he was home and that I could resume teaching my class. To add to the excitement, I received another interrupting phone call 15 minutes later from him because he had set off the house alarm (the one we installed to keep him from eloping in the middle of the night to buy/steal chocolate) and he needed the code to turn the alarm off. Oy vey! After more attempts to get a hold of his sister (I didn't want to have to tell him the alarm code for obvious reasons), I found out that they had gotten a hold of their dad on the other side of the country and that their dad told him the code in order to turn off the alarm. Well, at least the alarm was turned off but now I had deal with worrying about the lack of door security.
Going back to the original problem on the way home from school, did he act in this stubborn and sullen way in order to find a way to dodge his sister so he could go to the vending machine for candy? Maybe... there was definitely something troubling about the way he behaved.
After I finished teaching the class, I called home and my friend had arrived. According to her, both kids were upset. Sasha's sister was very distressed and worried about him. She felt responsible for taking care of him and felt so badly that things didn't go as planned. In the last five years, she has witnessed many of his meltdowns in our home including one time when we called the police after he had run away declaring that he wanted to kill himself (yet another time when I was alone with Sasha without his dad). Sasha was feeling guilty and angry at himself for upsetting his sister and was definitely in the midst of another meltdown. He reacted by repeatedly slamming his door so hard, my friend was frightened and thought he would break the door. After hearing this, I left work immediately to return home.
Once I got home, I could see that he was moody- for a few minutes he was reasonable and then he became histrionic and made declarations of wanting to be dead. It was hard to understand the origins of his extreme behavior. It didn't make sense to me but I recognized it as the way he used to behave on a much more regular basis in the pre-oxytocin days. In looking back in the last two days, there have been some subtle signs of things going awry... Yesterday he was caught sneaking some Cheetos in a classroom where he was not being adequately supervised. I heard a report from his resource case manager at school that his aides were reporting he was taking very frequent snack breaks to eat nuts in the classroom (despite his knowing that there is no nut policy at his school). He has been finishing all of his food at his meals which is a contrast to how he had been in the two weeks preceding the last two days.
What has changed? Well, it may be as simple as a mechanical problem with the oxytocin administration. We received a new bottle of oxytocin just a few days ago from a new compounding pharmacy. It was in a tiny bottle and the nozzle was so short, it was not possible to insert it fully into Sasha's nostril and we noticed that the medicine was dripping out of his nose! For the past few days, Sasha has sprayed the oxytocin and sometimes he felt a good spray and sometimes he didn't and sometimes he felt it dripping out... we have had him respray the medicine into his nostril when he didn't feel the spray or when he felt it dripping out of his nose... now we don't know if he was getting the right dose- too little or too much? ARGH! I have since tried to transfer the new medicine into his old bottle and to clean the nozzle of possible clogs and I have even emailed his doctor to get another order from yet another pharmacy in the hopes that we will find one that makes the oxytocin in a more user-friendly bottle (we could go back to the first pharmacy but it was more costly). I think I have cleared the bottle of any possible clogs and we will do our best to get the sprayer to cooperate with us tomorrow.
Is his fragile life (and our sanity) dependent upon the effectiveness of this medicine?
Yes.
How about a friggin' spray bottle?
Sadly, yes.
Is parenting the most humbling job in the world?
Hell, yes.
First of all, to make things worse, my husband is out of town on business and so it was just me, alone, trying to keep things in order. Disaster struck late this afternoon while I was at work. Due to my late work hours and my husband's absence, I had arranged for Sasha and his sister both to walk home in the afternoon to wait for my friend to come over to supervise them and take them to dinner. Their middle school is a 8 minute walk home in a safe residential neighborhood. I gave their after-school director permission to excuse them at a certain time and gave the kids explicit directions to walk directly home. I told Sasha that he was to "weigh and water" himself (the way we keep his electrolytes in more-or-less balance between weekly lab draws for his diabetes insipidus) and to text me his weight so I could be sure he was sufficiently hydrated. The kids were told to hang out at home until my friend arrived (1.5 hours after their arrival home). I would normally not allow Sasha to walk home alone because of his history of buying/stealing food but I thought it would be ok to let him walk home with his sister.
Well, things didn't go as planned and on their walk home, Sasha was hot and complained of ankle pain. It was an unusually warm day and he does have problems walking due to his ankles but this time, he became stubborn and when they reached our street, he refused to move and sat down. His sister tried to convince him to keep walking since they were only (literally) 11 houses away on our block. Sasha became defiant, sullen, shut down and refused to communicate and refused to walk any further. She tried to get him to keep walking but he refused and she got increasingly upset with his stubborn, locked down state. After about 10 minutes of cajoling, she knew that I was expecting a phone call at a certain time and didn't know what else to do so she ran home to make a phone call to me (no, she doesn't have a mobile phone yet but she's going to get one now!). She ended up interrupting a class I was teaching to tell me that she left Sasha on the corner down the street (and as it happens, it was across the street from the high school where there are vending machines). Needless to say, I was very upset to hear this and the timing could not have been worse. I spent several minutes trying to reach him on his phone and finally got a hold him after about 6 attempts. By this time, he was at home and could see how upset he had made his sister for worrying her and how much he had upset me and disrupted my work day with his actions. Although I was irate with him, I was relieved that he was home and that I could resume teaching my class. To add to the excitement, I received another interrupting phone call 15 minutes later from him because he had set off the house alarm (the one we installed to keep him from eloping in the middle of the night to buy/steal chocolate) and he needed the code to turn the alarm off. Oy vey! After more attempts to get a hold of his sister (I didn't want to have to tell him the alarm code for obvious reasons), I found out that they had gotten a hold of their dad on the other side of the country and that their dad told him the code in order to turn off the alarm. Well, at least the alarm was turned off but now I had deal with worrying about the lack of door security.
Going back to the original problem on the way home from school, did he act in this stubborn and sullen way in order to find a way to dodge his sister so he could go to the vending machine for candy? Maybe... there was definitely something troubling about the way he behaved.
After I finished teaching the class, I called home and my friend had arrived. According to her, both kids were upset. Sasha's sister was very distressed and worried about him. She felt responsible for taking care of him and felt so badly that things didn't go as planned. In the last five years, she has witnessed many of his meltdowns in our home including one time when we called the police after he had run away declaring that he wanted to kill himself (yet another time when I was alone with Sasha without his dad). Sasha was feeling guilty and angry at himself for upsetting his sister and was definitely in the midst of another meltdown. He reacted by repeatedly slamming his door so hard, my friend was frightened and thought he would break the door. After hearing this, I left work immediately to return home.
Once I got home, I could see that he was moody- for a few minutes he was reasonable and then he became histrionic and made declarations of wanting to be dead. It was hard to understand the origins of his extreme behavior. It didn't make sense to me but I recognized it as the way he used to behave on a much more regular basis in the pre-oxytocin days. In looking back in the last two days, there have been some subtle signs of things going awry... Yesterday he was caught sneaking some Cheetos in a classroom where he was not being adequately supervised. I heard a report from his resource case manager at school that his aides were reporting he was taking very frequent snack breaks to eat nuts in the classroom (despite his knowing that there is no nut policy at his school). He has been finishing all of his food at his meals which is a contrast to how he had been in the two weeks preceding the last two days.
What has changed? Well, it may be as simple as a mechanical problem with the oxytocin administration. We received a new bottle of oxytocin just a few days ago from a new compounding pharmacy. It was in a tiny bottle and the nozzle was so short, it was not possible to insert it fully into Sasha's nostril and we noticed that the medicine was dripping out of his nose! For the past few days, Sasha has sprayed the oxytocin and sometimes he felt a good spray and sometimes he didn't and sometimes he felt it dripping out... we have had him respray the medicine into his nostril when he didn't feel the spray or when he felt it dripping out of his nose... now we don't know if he was getting the right dose- too little or too much? ARGH! I have since tried to transfer the new medicine into his old bottle and to clean the nozzle of possible clogs and I have even emailed his doctor to get another order from yet another pharmacy in the hopes that we will find one that makes the oxytocin in a more user-friendly bottle (we could go back to the first pharmacy but it was more costly). I think I have cleared the bottle of any possible clogs and we will do our best to get the sprayer to cooperate with us tomorrow.
Is his fragile life (and our sanity) dependent upon the effectiveness of this medicine?
Yes.
How about a friggin' spray bottle?
Sadly, yes.
Is parenting the most humbling job in the world?
Hell, yes.
Monday, September 5, 2016
38) Transitioning to taking off the training wheels: "I like the increased freedom," says Sasha
For the past two weeks or so, there have not been any sightings of Kitchen Bitch (with one exception today- to be discussed in a moment). In general, my hypervigilant and irritable self in the kitchen around hyperphagic Sasha hasn't been around. That is to say that Sasha has been much more mellow about food lately. However, just today he got intense about wanting to make lunch, insisted that the salad we were going to eat (to be made by him) wasn't going to be enough, and that he would need more to eat. This salad was going to be very hearty (including greens, chicken, nuts, bell peppers, green beans, balsamic onions and peaches, raisins and tomatoes) so I told him to calm down and that we would just wait and see if the salad was going to be enough, and that he could have more to eat if he needed it. He was argumentative with me and even got a little tearful over his anxiety about the lunch. The funny thing is that he ate his salad and when I turned to him to ask if he had enough to eat, I noticed that he hadn't even finished his plate! I enjoyed a little "told ya so" with him and he smiled and admitted that I was right.. the hearty salad satisfied him plenty.
He had a "disaster-free" week in his first week of school and we have been enjoying a social weekend with dinner parties. On Thursday we were invited to a friend's home where her brother (a professional chef visiting from China) made a beautiful 10-dish spread which was served buffet style. Normally we would never attend a buffet dinner but we took our chances and it turned out well. Sasha ate a moderate amount of food and was able to hang out with us during and after dinner without having to return to the food table over and over again. Last night, we were invited to another dinner party at a neighbor's house. Sasha made the dessert (a lower carb peach cobbler) to share with the group. Our neighbor friends were careful to serve food that would be Sasha-friendly so we felt comfortable with the buffet-style dinner arrangement. To our relief, the appetizers were totally appropriate (vegetables, dips, some cut up whole fruit) as was the dinner (skewered chicken, sausages, salmon, vegetables, green salads and corn on the cob). We kept a sideways eye on him and noticed that he engaged with the food very appropriately and was able to also hang out with the other kids and dog without needing to be glued to the food table. He only came into the kitchen once for seconds and grabbed a second half-ear of corn. I was quite pleased with how he conducted himself at the party and we were all able to have a great evening together with no disasters!
As a result of these continuing signs of Sasha's decreasing obsession with food and hunger, we have begun to "take off the training wheels" and are starting to give him a little more freedom around the kitchen. For example, on a couple of occasions, we have allowed him to make breakfast or lunch without supervision. During these occasions, we removed the necessary ingredients from the fridge or cabinets (usually ingredients for omelettes or salad) and locked up the remaining food and then gave him the space to cook the food on his own. We know that he can easily eat some of the ingredients without our knowing but we feel that he is ready for these baby steps now. As far as we can tell, Sasha has handled himself well with the increased freedom. He tells me that he enjoys the freedom and the feeling that we are trusting him more. He reports that he is continuing to feel less focused on food. In fact as a case in point, as I am writing this, I offered him to make a yogurt dessert and he turned me down, saying that he isn't hungry and isn't in the mood to deal with food so soon after lunch!
As we have experienced these changes in Sasha, I have wondered how we would even know if he was able to resist extra food sneaking/eating on his own if we were continuously breathing down his neck when he was in proximity to food. If we continued to police him heavily, we wouldn't be giving him the opportunity to test out his own ability to trust his (normalizing) appetite or to self-monitor his eating behaviors. The only way to test him is to let go... ideally, we would do this in a gradual manner, like how we might train a beginner who goes from riding a tricycle to a bicycle with training wheels. Now we see Sasha as riding a bike with training wheels and see that he is getting ready to take them off... but are we ready??
I am running along beside him as he wobbles and balances on his bicycle. It's both scary and exhilarating all at the same time!
He had a "disaster-free" week in his first week of school and we have been enjoying a social weekend with dinner parties. On Thursday we were invited to a friend's home where her brother (a professional chef visiting from China) made a beautiful 10-dish spread which was served buffet style. Normally we would never attend a buffet dinner but we took our chances and it turned out well. Sasha ate a moderate amount of food and was able to hang out with us during and after dinner without having to return to the food table over and over again. Last night, we were invited to another dinner party at a neighbor's house. Sasha made the dessert (a lower carb peach cobbler) to share with the group. Our neighbor friends were careful to serve food that would be Sasha-friendly so we felt comfortable with the buffet-style dinner arrangement. To our relief, the appetizers were totally appropriate (vegetables, dips, some cut up whole fruit) as was the dinner (skewered chicken, sausages, salmon, vegetables, green salads and corn on the cob). We kept a sideways eye on him and noticed that he engaged with the food very appropriately and was able to also hang out with the other kids and dog without needing to be glued to the food table. He only came into the kitchen once for seconds and grabbed a second half-ear of corn. I was quite pleased with how he conducted himself at the party and we were all able to have a great evening together with no disasters!
As a result of these continuing signs of Sasha's decreasing obsession with food and hunger, we have begun to "take off the training wheels" and are starting to give him a little more freedom around the kitchen. For example, on a couple of occasions, we have allowed him to make breakfast or lunch without supervision. During these occasions, we removed the necessary ingredients from the fridge or cabinets (usually ingredients for omelettes or salad) and locked up the remaining food and then gave him the space to cook the food on his own. We know that he can easily eat some of the ingredients without our knowing but we feel that he is ready for these baby steps now. As far as we can tell, Sasha has handled himself well with the increased freedom. He tells me that he enjoys the freedom and the feeling that we are trusting him more. He reports that he is continuing to feel less focused on food. In fact as a case in point, as I am writing this, I offered him to make a yogurt dessert and he turned me down, saying that he isn't hungry and isn't in the mood to deal with food so soon after lunch!
As we have experienced these changes in Sasha, I have wondered how we would even know if he was able to resist extra food sneaking/eating on his own if we were continuously breathing down his neck when he was in proximity to food. If we continued to police him heavily, we wouldn't be giving him the opportunity to test out his own ability to trust his (normalizing) appetite or to self-monitor his eating behaviors. The only way to test him is to let go... ideally, we would do this in a gradual manner, like how we might train a beginner who goes from riding a tricycle to a bicycle with training wheels. Now we see Sasha as riding a bike with training wheels and see that he is getting ready to take them off... but are we ready??
I am running along beside him as he wobbles and balances on his bicycle. It's both scary and exhilarating all at the same time!
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