I continue to hold hope for those who suffer from hypothalamic obesity and hyperphagia. As you may recall, before my son started oxytocin (and added naltrexone), he had unrelenting hunger and engaged in regular food stealing and stashing. It's now been over three years on 6 iu oxytocin nasal spray and naltrexone (decreased from 100 to 50 mg in the last few months with no remarkable difference). We give him a much more generous allowance for carbohydrates so long as they are not processed sweets. He eats moderate bread, pasta, starchy vegetables, fruit, etc. and it doesn't appear to affect his food intensity; however, processed sugary foods do cause him to get "hooked" so he avoids sugar consumption and this seems to keep his hyperphagia in check. His BMI is higher now with the increased carbs but it is still 22.8 (185 cm tall, 78 kg heavy). Of course, if weight gain becomes a problem for him, we are confident that decreasing his carbohydrates will help him lose the weight.
I am very pleased to report that he now has a part-time job (he is a junior in high school) working as a child-care assistant at a local after-school program. He is so proud of himself for being able to do what he loves to do (work with kids) and get paid for it. I am amazed (and still a bit nervous) that he is now being entrusted to be around other people's food since we used to get phone calls all of the time (before oxytocin) about his food thefts and emotional meltdowns at school related to food. He appears to be committed to doing a good job and knows that he is challenged every day he goes to work and has to make smart choices about passing up the opportunity to help himself to sweets that are available for the taking. I'm keeping my fingers crossed that he keeps up the good work!
Other good news... the last time I blogged, I wrote about a mother who has done incredible medical sleuthing to help her son and I promised that would provide an update on him. Well, he continues to do very well on the antihistamine and flavonoid treatment which has drastically decreased his hyperphagia, weight, and resistance to start and complete tasks (treating the Pathological Demand Avoidance, a cluster of symptoms found within autism spectrum disorder). In addition, there are another two boys with HO (secondary to craniopharyngioma) who have also responded beautifully to this antihistamine (plus flavonoid, in one boy's case). I was planning to share the details of this good news in Hope for HO however...
... learning about this amazing discovery and seeing it help others, I was inspired to start a podcast!
The podcast will be called "Dr. D-I-Y" and it will feature guests who have been motivated to help themselves or their loved ones in areas where the medical establishment has fallen short; I will interview these resourceful individuals on their D-I-Y solutions. For my first episode, I will feature the mother who found success through this antihistamine and flavonoid treatment and sharing her remarkable D-I-Y story. Stay tuned for the trailer episode which I hope to release in a few weeks.
I have a few other interesting stories lined up and I'm also open to learning about other D-I-Y stories... so let me know if you or someone you know would like to share a story about having found relief from a difficult-to-treat medical condition. I'm especially interested in stories that might shed new scientific light on the medical condition and maybe even change the course of treatment for the condition.
