23) Follow-up from Tuesday- two steps backwards, baby steps forward...?

On Tuesday afternoon, we gave Sasha an extra spray of oxytocin because he was exhibiting his pre-oxytocin behaviors and we believed that perhaps the spray was not properly absorbed at his last dose on Monday. Since our observations of Sasha's apparent regression on Tuesday, it is an understatement to say that we have been anxious and on edge as we observe and try to make sense of his current behaviors.

Yesterday his camp director told me that he was in a very good mood and very social with other campers and I thought, oh good- the oxytocin must be putting him in a good mood and making him feel social with his peers!  He ended up not eating much of his lunch (typical post-oxytocin behavior) but he did eat a lot of popcorn that was served for snack at the camp : (  For dinner, he ate about two thirds of his meal and accepted a small peach for dessert without any fuss.  For breakfast this morning, he made eggs and a piece of toast and passed up the opportunity to eat extra eggs that were left in the pan, saying he wasn't hungry any longer.  Seeing him pass up food was a relief to me.

I learned from Sasha and his sister that the camp served snack which was always crackers, popcorn and fruit.   He admitted that he had been eating the popcorn snack and then feeling somewhat tired during the day.  Due to the fact that he is a hyperinsulin secreter, I wanted to ascertain if the popcorn was causing the extra fatigue or if he still needed tweaking with his hydrocortisone and thyroid medications.  I had a discussion with Sasha that I wanted him to avoid the high carb snacks at camp because I wanted to see if avoiding the carbs would improve his energy throughout the day.  He agreed with me (at least in theory) to try his best to avoid the high carb snacks and to focus on eating his own low carb snacks brought from home.

This afternoon at 12:15, I received a phone call from the camp director.  Sasha's dad and I have PTSD from receiving phone calls from teachers and camp counselors because it is almost NEVER good news.  Well, today was no different.  Long story short, we learned that he was caught sneaking Goldfish crackers into his pockets at camp after he was specifically told not to eat any of the (high carb) snacks.  UGH!  After he was caught, he did his usual meltdown and refused to talk and then threatened to elope from the camp.  The director asked me to speak with Sasha but he refused to speak with me on the phone so I dropped everything at work and rushed to the scene, a 15 minute drive from my work.

When I arrived, he hadn't eloped and he had calmed down.  Mostly he was sad and ashamed of himself.   I took him into the car and we had a talk.  What I understood from our talk was that he was triggered by the exclusion he felt when he was not allowed to eat the crackers or popcorn.  He said that it made him feel sad and mad. This is nothing new, of course.  Sasha has been excluded from so many normal things in life since he had his brain tumor surgery in 2011.  He has historically felt especially triggered by his exclusion from food, and whenever possible, we have shielded him by removing him from situations that would cause him to feel excluded or tempted.  We have usually chosen camps where campers brought their own snacks from home. At this camp, unfortunately, the snacks were served right in front of his face and he was explicitly told (by me) that he wasn't allowed to have any.  Despite appearances, according to Sasha, he was not even hungry when he snuck the crackers into his pockets but he admitted that he felt "upset" earlier in the day when he was deprived of the morning snack.  We continued to talk about how his long history of food deprivation has made him feel sad and angry and how he had those same feelings the very morning he ended up sneaking the crackers into his pockets. The camp director caught him taking the crackers and Sasha was forced to empty out his pockets.  He ended up not eating any of the crackers.

Our discussion made me wonder if he would have acted out with the food sneaking if he was not prohibited from eating the foods that were served for snack.  IF he is telling the truth that he was not even hungry when he took the snack (in fact, he ended up delaying his lunch until 2 pm today), could it be that his upset feelings incited him to act out and to take the crackers? What if the camp served low carb snacks that were on his food plan?  We decided that it might be a win-win solution for him to bring Sasha-friendly snacks for camp tomorrow. He liked this idea and when we presented it to the camp director, he was pleased with the suggestion and grateful for our offer.  Tomorrow, we will plan to make and bring homemade hummus dips with raw vegetables, a cheese plate, and no-bake low carb chocolate macaroons.  We will see how he handles the food situation tomorrow without the temptations and the sense of exclusion.  If his oxytocin is working to reduce his hyperphagia, the low carb snacks should eliminate his feelings of being excluded and provide him an opportunity to test out his ability to eat moderate portions.  Perhaps I am being naïve in believing him that he took the crackers out of anger, rather than hunger...

As far as his appetite is concerned, he appears to have changed from the extremely low appetite he exhibited in the recent past- eating less than 50% of his food at most meals, skipping snacks and desserts, etc.  This was such an extreme departure from his HO appetite, I knew that it would not be sustainable (recall posting #17 when he made the discovery of hunger pangs and weakness after he had eaten so little during the day).  In the last few days, his food consumption at mealtimes has not been a concern but what we are seeing now with the food sneaking is starting to resemble his pre-oxytocin behavior... but WHY?  I don't wish for him to return to having the appetite of an anorexic but it surely wouldn't hurt my feelings if he would just maintain a normal appetite and stop his food foraging behaviors!  In the meantime, I am wondering if oxytocin is interacting with his other changing hormones and causing him to require a different dose- but what?  Does he need a higher concentration, a lower concentration, a more frequent dose or less frequent dose?  Or do we just stay put with our current dose and watch and wait?

If only we knew.  If there is anyone out there in the WWW reading this that might help shed a clue to these changes we are seeing, please help by sharing your comments.  In the meantime, I am doing my best to keep my chin up!