What is HO? Hypothalamic Obesity (HO) is a metabolic disorder that is the result of a lesion or other direct insult (surgery) to the hypothalamus, resulting in symptoms including excessive and rapid weight gain, decreased satiety, insulin and leptin resistance, decreased sympathetic tone, low energy expenditure, and increased energy storage in fat tissue. Living with the symptoms of HO is difficult and painful as its sufferers are often constantly battling weight gain, societal discrimination and internalized shame of living in an obese body, metabolic diseases related to obesity such as diabetes and high cholesterol, chronic lethargy, and exercise intolerance. Many but not all sufferers of HO also have hyperphagia, a drive to seek food, and is usually experienced as having intense/frequent hunger pangs and difficulties feeling sated after eating. In our fat phobic society, sufferers with hyperphagia are tortured with wrestling between their hunger/survival instinct and their self-hate for wanting something that causes more weight gain and more stigma.
For an academic and technical explanation of HO in craniopharyngioma, please read Dr. Christian Roth's 2015 paper: http://www.mdpi.com/2077-0383/4/9/1774/htm
When Sasha came home from the hospital after his tumor resection surgery, we noticed that he was hungry very often. He was often up in the middle of the night foraging for food. We learned that we had to lock up the food in order to keep him from eating to excess. Even after we locked up the food, we found signs of his intense drive for food. One night we found him standing at the fridge, patiently trying to figure out code to the combination lock that was the barrier between him and food. On another night, we caught him (age 8) trying to climb on top of the fridge to reach for some food that was purposefully placed out of his reach on top of the tall appliance.
Sasha's relentless hunt for food required us to become more restrictive and watchful of his eating and food seeking tendencies. With his heightened hunger, he was preoccupied with food- he talked about food all of the time, became very interested in cooking and could hear a package of food being opened while he was asleep in another room of the house only to awake and rush into the kitchen with the question, "What are you eating? Can I have some?" His food seeking created a very stressful home environment. He often insisted on making his own lunches (which we allowed) but it would require very careful supervision due to his constant attempts to sneak extra food while he had access to the fridge or pantry. He was very fast and sly in his ability to sneak food, even when we were watching. While I used to love cooking for my family and friends, I became a "Kitchen Bitch" when I was around him in the kitchen and I began to loathe food preparation whenever Sasha was around. I was constantly in the unenviable position of having to say "no" to him when he asked for food, a very painful and unnatural position for a mother who (in the past) enjoyed cooking and serving food to her loved ones. We got into frequent arguments regarding food and he had frequent "meltdowns" in which his mood (and our moods) would regularly ruin a good day just because of an argument over food.
His frequent hunger and food seeking affected him at school. Thanks to his IEP for his Visual Impairment and Traumatic Brain Injury, Sasha was assigned a 1:1 aide in school. One of the main functions of the aide was to watch him and keep him safe from his strong temptations to help himself to other kids' lunches. He is a smart, considerate and ethical person who intellectually understood that it was not ok to take other peoples' things. We tried to correct him with lectures, punishments, rewards, psychotherapy, and everything else, but his desperate hunger and survival instinct would not succumb to reason. Of course, Sasha felt terrible about his inability to control his hunger or his urges to find food to eat. Sadly, even his own self-loathing and shame over his behaviors were not enough to curb his hyperphagia behaviors.
With a great deal of adjustments to his hormones and a switch to a lower carb diet plus the intense policing of his food, we were somehow able to keep his weight just below the obesity level. We felt fortunate that he was not heavier but we knew the sacrifices we made and the restrictive lifestyle maintained for him were not sustainable... we could already predict that his increasing age, his sophistication about seeking and finding food, his expectations for more independence, our increasing arguments over food, and our increasing weariness acting as the food police would result in misery and frustration for all involved.
Life with HO was feeling hopeless...that is, until we found oxytocin!
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