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Welcome, and thanks for joining us for Navigating Insatiable Hunger – Everyday Tips and Strategies. My name is Dr. Amy McTighe, and I am the Director of Care Coordination and the Prader-Willi Syndrome Program Manager at the Children's Institute of Pittsburgh. I'd like to thank Rhythm for asking me to present for this educational series.

Today's discussion will focus on three key questions: What are food-related behaviors? How do you manage these behaviors? and How do you manage a meltdown? First, some background and context. Rare genetic disorders of obesity prevent your brain from telling your body that you're full. Specifically, genetic variants in a key part of the brain responsible for controlling hunger (called the MC4R pathway) cause extreme weight gain very early in life and hyperphagia, commonly known as insatiable hunger. There is more to this science, so if you're interested in learning more about rare genetic disorders of obesity, you may find the website LEADforRareObesity.com to be a helpful resource.

So let's tackle our first question. What are food-related behaviors of rare genetic disorders of obesity? Common behaviors related to food that I typically see with clients that I work with are focused around three major areas – one being overeating food. This typically means that they are eating food outside of scheduled mealtimes or eating large amounts of food whenever they have access to it. Planned food foraging is also very common. That means that there is a specific plan by the person to obtain food in a large amount whenever someone is not watching. Also, I even see people that eat atypical food, such as raw food, pet food, or frozen foods. Other common behaviors associated with insatiable hunger include engaging in tantrums to obtain food; verbal and physical aggression; arguing or manipulating to get food; sneaking and extensively seeking food; breaking locks on cabinets, refrigerators, or freezers; and shoplifting or stealing food.

Many families struggle with what to do when their child is exhibiting these behaviors. Now let's talk about how to manage these behaviors.

There are a number of approaches that you can use:

  • Total food security or limiting food exposure
  • Positive behavior support and verbal praise
  • Environmental accommodations and modifications
  • Thinking outside the box when managing behaviors
  • Preparation
  • Predictability
  • Schedules and visuals
  • And safety plans

There's a lot we could explore in each of these, but in the interest of time I will highlight a few in greater detail.

I have a child that I'm working with that hoards wrappers from food that she has obtained from family members, friends, or on the bus, in her bedroom. We had to put supports in place for that family in order to make sure that the extra food outside of the scheduled meal was not being obtained. Using a lock can be a helpful tool in managing food-related behaviors.

Locks and/or alarms should be used so food cannot be accessed. I know it may seem cruel, but it can actually be a useful tool that is for the benefit of the individual. Locks and alarms are safety measures to prevent binge eating, prevent extraordinary weight gain, and decrease anxiety and guilt that food can be obtained. You may wonder when you should consider using locks. Here are a few helpful tips:

  • There is never an age requirement where locks should be applied.
  • Always, a best practice is to lock for safety.

If you're thinking about using locks, consider the following:

  • Increased preoccupation with food.
  • Increased food-seeking behaviors.
  • Unexplainable weight gain.
  • Food is missing.
  • Or the person tells you that he or she is taking food.

We also talked about the importance of preparation and predictability. A structured meal is an important part of this. Let's talk about some helpful tips:

  • Establish a meal pattern immediately.
  • Post a daily or weekly menu.
  • No serving bowls at the table. This means that you are not participating in a family-style meal.
  • No participation in meal preparation and cleanup.
  • Use disposable containers to make the meal look bigger.

Posting a daily or weekly menu may vary based on your child's level of food anxiety. Some children are able to handle one day's worth of meals, and others are able to see the entire week's worth of meals that are planned.

Even with our best planning, meltdowns will happen. First, please understand that there are times that you are just going to let the meltdown run its course, but let's also talk about some other helpful tips to manage meltdowns. Managing a meltdown can be difficult. Here are some basic skills that I give to families in order to manage meltdowns more effectively:

  • Remain calm. Think before you speak, speak in a calm voice, and try not to show fear, anger, or frustration.
  • Validate the emotion. You may say something like, "I can see you're upset about what is happening," or "I can see you're anxious, how can I help you?"
  • Suggest coping strategies. Slow counting and deep slow breathing are often effective.
  • Redirect in a calm, firm voice. "Would you like to work on a puzzle or play a game?"
  • Guide your child through the problem-solving process. For example, you may say something like, "We don't have soda, but we could drink hot tea or lemonade. Which one would you like?"

There will be times when meltdowns will escalate. Let's talk about a few things that will help in these situations:

  • Never give in to unreasonable demands.
  • Keep yourself out of harm's way. Move dangerous objects away and seek assistance from others as needed.
  • If yelling is happening, refuse to speak. Praise the child when they are speaking in a calm voice and redirect them.
  • Give your child time and space to calm down. You may even want to retreat to a designated area until calm.
  • Move past the episode to avoid reigniting the anger or frustration.

Move past the episode means move past the episode. Do not punish your child. Do not talk about it the next day. It's really not their fault. They have a rare genetic disease. Remember that food security promotes improved physical and mental health. A concept adopted by Dr. Gourash and Dr. Forster of the Pittsburgh Partnership includes "no doubt, no hope, and no disappointment." No doubt means you are creating an environment where there is no doubt when the next meal will be served. No hope means that there is no ability to obtain unauthorized food, and no disappointment means that unauthorized food is not available.

I hope you found this session to be helpful. You can find more about my work at the Children's Institute of Pittsburgh by visiting amazingkids.org.

For more videos like this, don't forget to check back on the Lead for Rare Obesity Facebook page and LEADforRareObesity.com.

LEAD for Rare Obesity is an initiative of Rhythm Pharmaceuticals, Inc.
© 2019 Rhythm Pharmaceuticals, Inc. All rights reserved. MC4R-C0282-10.2019

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