54) Gratitude this Thanksgiving

What better time than Thanksgiving to reflect upon the many things for which I am grateful.  We have had six months on oxytocin and we have noticed the changes in Sasha as well as the life style changes we have enjoyed in the last few months.  Reminiscing about the "old days" has made me appreciate how much things have changed for the better!

I'm grateful for peace in the kitchen.

Old days: Whenever I was in the kitchen to prepare a meal, Sasha would insert himself and insist on helping. I knew that his desire to help was fueled by his desire to be near food so that he could sneak it into his mouth or pockets.  When I allowed him to help cook, we would often get into an argument because of the tension I felt with his frequent attempts to sneak food and my attempts to monitor and control him. For this reason, sometimes I just wasn't in the mood to let him cook alongside me or preferred for him to occupy himself with something else he needed to do (homework, for example). Cajoling or asking him nicely to leave was not an option: it was nearly impossible to get him to leave and during these times, I would have to order him to leave. Despite my order, he would refuse to do so and would end up standing at the perimeter of the kitchen, frozen like a statue. It was a very sad sight to see him physically unable to tear himself away from the kitchen even after I ordered him to leave me alone. Overall, I would say that in the old days, Sasha would not be able to stay away from the kitchen if there was food preparation happening and no activity, person, task, request, etc. could compete with the allure of the kitchen, the promised land of food. 

Nowadays: I am able to cook in the kitchen in peace.  Sasha still offers to help me cook from time to time but he is actually capable of staying away from the kitchen now while he is preoccupied with another activity in his room (e.g.: homework, sorting his Magic the Gathering cards). When we cook together now there is much less tension/conflict and much less distrust on my part.  I am much more relaxed and happy in the kitchen and so is Sasha.

I am grateful for more "open borders" in the kitchen.

Old days: All tempting food was locked up at all times,  By tempting food, I mean the food that Sasha would likely eat- (we have never had to lock up canned food or raw ingredients like flour because he wouldn't eat it).  We felt constrained by the constant vigilance around food and could not afford to let down our guard if the food cabinets or fridge were unlocked, even for a minute. In fact, Sasha used to check the kitchen on a regular basis- in the middle of the night when he awoke and whenever he was passing through, just in case someone was sloppy and left out some food or forgot to lock up.

Nowadays: We have continued to keep the snack cabinet locked up because it contains the most tempting foods for Sasha (nuts, his go-to snack these days) and have known that he is still "weak" when it comes to his temptations to sneak them and store them for later consumption (yes, much like a squirrel storing his nuts).  However, I have been noticing that he is much less distracted by the fridge and for the last two days, I have been keeping the fridge unlocked all day long!  To my surprise, Sasha either doesn't notice it (which is a good sign that he is not entering the kitchen to check) or he is not bothered by it.  In fact, even with the fridge unlocked, I have noticed that he continues to go about his business and is able to ignore the kitchen, asking for snacks at appropriate times.  We will keep up the unlocked fridge and keep a sideways eye on him during this prolonged exposure and see how it goes...

I'm grateful for Sasha's improved satiety and ability to self-monitor his food intake.

Old days:  Sasha would eat all of his food and would often express desire for more.  We had strict rules about "no seconds" (except with salad/veggies) so he eventually learned not to ask but it was obvious that he often wanted more. He used to ask for his snack on a more urgent basis and I had the heartbreaking job of often telling him "no" he could not have more to eat because he had already eaten or he needed to wait until the appropriate time to eat.

Nowadays: Sasha self-regulates much more often- feeling full and stopping before he eats everything on his plate.  Now, it is not unusual for him to not finish everything on his plate, even when it is food that he really likes (example- HEFY- Half-Eaten-Frozen-Yogurt).  We have to be careful, of course, to wonder if his satiety is due to extra food he has snuck that day, but we do periodic searches of his room and are finding evidence of snuck food on a much less frequent basis these days.  We ask that his case manager teacher at school give us reports on when he has attempted to sneak or has snuck food.  We used to hear reports on a regular basis (several incidents every week) and now, these reports are much more seldom.  It certainly appears that the decreased intensity of his appetite and his increased satiety are true when we observe his ability to self-monitor and stop eating because he is full.

I'm grateful for stable electrolytes.

Old days: Because Sasha has Diabetes Insipidus with absent thirst, we have relied upon frequent weighings and weekly sodium checks at the lab to monitor his electrolytes.  With stable weight, this is an excellent way to manage this very challenging condition. Whenever he is light (according to the best estimation of his weight with a Na level of 140), we just had him drink water to the desired weight.  Whenever he is heavy, we let him urinate out the excess water and try to keep him at the desired weight.  Every week for the last 5 years, we have checked his sodium and approximately 75-90% of the time, his Na levels were too high.  In other words, we could not accurately calculate his Na levels based on the desired weight from the previous week because he was gaining weight every week (for years).   His high sodium levels caused him to be excessively fatigued and to have headaches/dizziness when his dehydration was more severe.

Nowadays: Sasha's weight has been decreasing or stable.  It is a relief to take him to the lab and to find that his sodium levels are normal!  With the gradual decrease of his weight, we can afford to err on the side of allowing him to be a little lighter than the previous week's weight and still believe that he won't be dehydrated.  In the last 3 months on oxytocin, we have had a record of all sodium results WNL with the exception of one that was too low (when he lost a lot of weight in one week) and one that was too high (when he gained weight after Halloween).  As a result of these stable electrolytes, Sasha's energy has been much better and his quality of life has improved drastically with this increased energy.

There may be other changes I am not noting here but you get the gist.  Life is definitely better post-oxytocin/Naltrexone.  To those of you who are also hoping for an improved quality of life with oxytocin, it is possible with the oxytocin studies underway.  

Last but not least, on my gratitude list are also the people who have supported me in this experiment: Bill (my husband), Dr. Friedman (Sasha's oxytocin-prescribing endo), Dr. Fan (Sasha's regular endo), Dr. Miller (cheerleader and oxytocin consultant), Nurse Naomi (oxytocin pioneer and cranio mum extraordinaire), Dr. King (Sasha's psychotherapist), the other endo researchers who have read and taken an interest in oxytocin as a replacement hormone, and of course, all the readers (you!) who have kept up with the blog and have shared the info with others to spread the word on oxytocin.

Thank you, all.  Have a wonderful Thanksgiving and if you don't celebrate Thanksgiving, have a great Thursday! (as quoted by one of my favorite cranio survivors, Trevor).