58) Lifestyle factors: what (meds and foods) does Sasha consume, anyway?

A typical Sasha snack: small bowl of peanuts and sesame seed crackers
Sasha eats a snack twice a day (at 10:30 AM and at 4:30 PM)

Sasha has been losing weight steadily and gradually since we started daily oxytocin (since September 1, he has lost 5.5 kg or 12 pounds). On September 1, his BMI was 27.0 (97%).   His BMI today is 23.7 (89%). Some readers have wondered what other lifestyle factors (besides oxytocin) may be contributing to his weight loss.

To describe his normal lifestyle routine:
Being a person with panhypopituitarism, he has relied upon full hormone replacement and takes many hormones including T4, T3, hydrocortisone, growth hormone, desmopressin, melatonin, and (more recently) oxytocin. Additionally, he takes dextroamphetamine (generic Adderall) to help him stay alert and awake and takes fish oils to keep his lipids under control. We added Naltrexone right after Halloween to see if it could reduce his cravings for sweets. In a week, he will be starting testosterone.

As for exercise, Sasha participates in PE in school and does his best to keep up with the typical non-panhypopit kids in his class.  Outside of school, we take regular walks in the neighborhood (average 3 km a day, a few days per week) and he works out at the gym with his dad on the weekend.

Regarding his food regime, at school he has an IEP for his vision impairment and food seeking problems and is supervised by a full time aide. At home, he is carefully supervised by us in the kitchen and our food is locked up (most of the time with the exception of during exposure sessions a few hours a day). Sasha has been eating about 1900-2000 calories/day of a lower carb/higher fat diet, give (whatever he ends up sneaking on the side) OR take (whatever foods he doesn't finish from his meal) a couple hundred calories here or there.

Everything I described above has stayed consistent over the last four years EXCEPT:
1.  He started oxytocin on May 15, 2016 and began a daily dose of 6 iu at the end of August, 2016.
2.  He has had lighter supervision by us and more exposure and freedom to an unlocked fridge in the last few months.
3.  He has added Naltrexone to his cocktail of medicines at the end of October.

As the "food police", we supervise him to prevent unsavory behavior (shoplifting, middle-of-the-night chocolate candy buying, taking other kids' lunches at school) and to help him control any overeating (by locking snack cabinets) but we are not (and have never) intentionally restricted calories for weight LOSS purposes. Behaviorally, as I've been noting in this blog over the last few months, Sasha has had ups and downs with his appetite and food intensity- on average, his appetite/food intensity has decreased (as evidenced by his ability to leave food on his plate, delay snacks, reduce the frequency of meltdowns related to food) but it has not ceased his food sneaking.  For this reason, it has been difficult for us to really know if his calorie intake has changed over the time he has begun oxytocin/Naltrexone.

To give another "picture is worth 1000 words" description of what he eats, I have photographed a sampling of the types of foods Sasha eats:

Breakfast: Scrambled eggs with kale and cheese,
wheat toast with butter (often we add 1.5 slices of bacon)

Another breakfast: Oatmeal with peanut butter, plain Greek yogurt
with slivered almonds and coconut chips

Dinner: Beef meatballs with cheesy polenta cakes, spinach salad

What he takes for school lunch- packed by Sasha himself:
Cauliflower fried "rice" with mixed vegetables,
salami/cheese, carrots, jicama, peanuts

Weekend lunch: grilled cheese sandwich on wheat toast, baby carrots and hummus
(this lunch is smaller than normal but satisfied him)

We also eat out in restaurants (probably too) frequently, once or twice a week. We try to stick with restaurants that serve Sasha-friendly foods (salads, grilled meats/vegetables, Asian foods minus rice and noodles).  For dessert, Sasha eats his signature Greek yogurt with almonds/coconut chips (pictured above in one of the breakfasts), nuts, or seasonal whole fruit.  Once a week, he gets a sugar free/fat free frozen yogurt with nuts (which he now leaves half-finished, aka the HEFY). On rare and special occasions (holiday, birthday), he gets a special treat and will eat a slice of cake or other type of sugary dessert.

Overall, as his parents, we do the best we can to support a healthy lifestyle for Sasha.  I think he's doing very well considering all of his complex conditions and I think the addition of oxytocin (and perhaps Naltrexone) has definitely improved his metabolic health and aided him in many ways, including this (unintended) weight loss.

P.S.  Other good news: he had a "no-disasters" last week AND Sasha had a classmate from school over at our house yesterday to hang out/play and it went really well! Dare I say that he is making a new friend...?

57) Trees still falling silently (even in Disneyland!)...Does oxytocin diminish the weight-gaining tendency of carbohydrates?

We just came back from three days in Disneyland.  We went there for his sister's dance workshop and performance.  It was a thrill to watch her dance on the Disney stage with other members of her studio and we had a blast.  Of course, being on vacation means eating out every meal which is exactly what we did.  I wanted us to stay on a reasonably healthy meal plan without ruining the vacation spirit. For Americans in vacation mode, we ate relatively-healthy at places that served salads, soups and sandwiches and avoided desserts for the most part.  I tried to guide Sasha to order lower carb items but didn't insist or force his hand when he opted for pancakes for breakfast or French fries with his sandwich (which we normally don't permit at home).

We enjoyed the attractions and rides and he discovered that he likes roller coasters! We also walked quite a bit over the three days (on Saturday we walked 8 miles, almost 13 kilometers).  Although we all had a great time (especially Sasha), I was still aware of his food issues and was tired of his asking me about when we would eat our next snack/meal.  In retrospect, it wasn't really that bad but I think it felt annoying to me because I was with him 24/7 and was the only parent (Dad stayed behind for a work conference) to deal with his issues.  He may have also been a little more anxious about food because we were in a new environment and away from our home routine.

As I reported last time, he has still had some episodes of food intensity and food seeking. In fact, there was a minor incident at Disneyland when our friend, H, told me that she suspected Sasha had snuck his hand into her backpack to eat the remaining third of her cookie!  Apparently, she was trying to discreetly eat a cookie out of her backpack but it is very hard to be sneakier than Sasha when he comes to food so he must have spied her doing it... while we (adults) were standing up in a line, Sasha was seated on the ground near her backpack and snuck the rest of the cookie into his mouth when we weren't looking.  I didn't say anything to him for face-saving reasons and it wasn't really a big deal but I felt disappointed that he would be so daring as to go into a friend's private property to get the cookie.  Although this is minor incident overall, it is a sign that the problem of food seeking/stealing has definitely NOT been solved.

In recent weeks and on this trip, we have seen a continuation of food sneaking. Despite the food seeking, his satiety seems ok since he does have the capacity to stop eating when he is full and can and does feel full after a meal. On this trip, he ate more (permitted) carbs than usual but still had excellent energy in spite of the extra carbs AND he lost weight again!  We have asked his endo to order another glucose tolerance test (GTT) with insulin so we can test to see if he is no longer hyper-secreting insulin.  If this is the case, it means that he tolerates carbs better and if he continues to keep his weight down/stable, perhaps he can start to eat more carbs on a regular basis...

IF this is happens, does it mean that we could mellow out on the carb food policing by allowing him to eat carbs and sweets like a regular person?  Might he be able to control himself (with the help of an increasing dose of Naltrexone) from binging on sweets like he did in July? Could this mean that his food sneaking would no longer be considered "sneaking" because he would be free to eat these carbs? Wouldn't that be marvelous?!

I can dream, can't I?

56) Turning 14 and having a birthday party (with friends!)

Sasha is a New Year's baby and will be turning 14 on January 1st!  He will be starting testosterone in a couple of weeks.  Not sure how I feel about that... but it has to be done, I suppose.  It will get him into puberty and all the stuff that goes along with that!  It will also be yet another hormone added to his large platter of hormones so we'll see how it will affect him...

What I am excited to report is that Sasha will be having a birthday party this year with some kids he hangs out with during school lunch and at the "Magic the Gathering" club, woo hoo!  Since his birthday is on a holiday, we have usually taken the time off to go to Yosemite National Park and celebrated his birthday during our stay in the mountains with family friends. Some years we invited family friends for a gathering or had a birthday party in combination with mine (also in January). Most years, however, we have not had a separate birthday party for him and his friends because truthfully, Sasha did not have a group of friends to invite to a party.  This year will be the first year (ever?) that he will be inviting a couple of kids he has befriended mostly on his own.  One of the kids was introduced by Sasha's dad whom he met in July (L) and the other kid (A) was introduced to Sasha by L at the Magic club. Sasha has gotten to know these kids during the weekly Saturday gatherings where they play their favorite game together. The third kid (R) is part of a family friend of ours who has also enjoyed hanging out and playing games with Sasha when we all get together.  For his birthday, Sasha has chosen to play one of those "can you escape" games where you are "trapped" in a room and have clues to try to figure out how to escape.  It should be fun!

Could Sasha's improved social life be due to oxytocin?  Perhaps- although he doesn't seem to have a close friendship with these kids (yet), I sense that a friendship is developing and it gives me hope that he can and will make some friends this year with the help of oxytocin.

On a more sobering note:  In spite of overall improvement on oxytocin, Sasha has still had some episodes of food seeking  : (  It seems that he is still tempted by certain foods and situations to sneak food and our money when he has the opportunity.  It is not clear how much is prompted by actual hunger versus habit.  We have been slacking from the active exposure work but intend to have him practice resisting his temptations by placing food on the counter and challenging him to leave it alone.  His appetite has not changed, he still eats moderately and his weight is still decreasing/stable. We are also in the midst of raising his Naltrexone to see if that will make a difference in his abilities to resist temptations to sneak.  We will keep the oxytocin at the same 6 iu for now.