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.
Monday, May 29, 2017
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!
 |
| We increased his testosterone dose a few weeks ago and Sasha is now looking more like a teenager |
 |
| 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:
 |
| 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!
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