I’m hopeful a new treatment will benefit my son with Prader-Willi syndrome

Note: This column describes the author’s own thoughts about Vykat XR (diazoxide choline). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Anyone who has enjoyed a meal with someone with Prader-Willi syndrome (PWS) has likely noticed their obsession with food. Hyperphagia, a hallmark symptom of PWS, is marked by excessive and insatiable hunger, often causing people with the condition to constantly think about eating and obtaining food.

Many of us spend a lot of time thinking about what we’d like to eat. My catering business used to keep me preoccupied with meals, and now that I’m retired, the first thing I think about when I wake up is what I will make for dinner. However, the intensity of the craving is greater in people with PWS. For some, including my adult son, Robert, it’s an all-encompassing part of their lives.

Robert thinks about food obsessively and has often used manipulation to obtain more. He currently lives in a group home called Stepping Out, where access to food is limited. The staff disapproves of discussions about food, so Robert will call me from his room to talk about it. When I suggest a subject change, he always says, “Sorry, Mom.” Our conversation will move to video games, another of his obsessions, but eventually returns to food.

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Robert’s endocrinologist recently gave him the green light to start taking Vykat XR (diazoxide choline), an oral medication that can treat hyperphagia. The U.S. Food and Drug Administration approved the therapy in March 2025 for adults and children, 4 and older, with PWS.

Studies have shown that Vykat XR can help ease hyperphagia in patients like Robert who are on a restrictive diet. It is also considered safe for those with PWS who are prediabetic or diabetic.

However, the medication may cause high blood sugar that can sometimes lead to diabetic ketoacidosis, so people with diabetes should be monitored closely. We are getting a glucose monitor for Robert to be on the safe side.

Other side effects of Vykat XR may include excessive hair growth, swelling, and rash. Diabetic ketoacidosis related to treatment can cause nausea, vomiting, abdominal pain, and shortness of breath.

While I’m hopeful the therapy will help Robert, it’s important to note that Vykat XR may not be suitable for everyone with PWS. Individuals respond differently to medications, so it’s important to always consult your doctor.

It would be a miracle to see a cessation of Robert’s obsessive thoughts about food. He is ashamed of the manipulative tactics he sometimes uses; when confronted, he’ll bow his head and not respond. Thankfully, now that he’s living at the group home, I no longer have to be the “bad cop.”

If the medication works for him, I believe Robert would be happier. He could be involved in more family gatherings and visit relatives’ homes where snacks are readily available.

I also hope that Vykat XR will help reduce his outbursts and improve his behavior. In clinical trials, the medication was associated with reduced anxiety, irritability, and compulsivity, and Robert would benefit from those effects. During his last security screening at the airport, he lost his temper when a Transportation Security Administration agent confiscated his nail clippers. Because he’s an adult, this could have been dangerous.

But if the medication helps with both his hyperphagia and his behavior, Robert could enjoy much more independence — and perhaps even travel alone.

Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.