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Understanding the Energy Budget

Understanding Mitochondrial Disease: Energy Well Spent

Energy is part of life. Without it, not much happens. We often don't pay much attention to the energy we use, until it is gone. One big snow storm or lightening storm with power outages and we are quickly reminded of how essential energy is to our entire beings.

Having a mitochondrial disorder is like a permanent brown out. Systems work but intermittently and sometimes not at all. In fact, some systems become so devoid of energy they run out of steam. That's when problems arise.

Although vague and albeit difficult to grasp at times, there is a method to the madness each mitochondrial patient experiences. Figuring out that pattern and having a road map to follow will give you a better sense of control and help you take steps to get the energy level back to baseline quicker. As a parent, understanding your Mito child's baseline is your road map for keeping your child healthy and anticipating problems as early as possible.

Energy In = Energy Out
Everyone has a baseline - that comfortable place our bodies function well at. An individual's baseline is really a balance between conserving energy (rest), using energy (activities), and making energy (nutrition and hydration). To work well, our bodies need to make and be provided enough energy to account for all activities - normal body functions as well as any exertion during the day with work, school and fun. In other words,

Energy In = Energy Out
Any change in this equation from baseline requires modifications. Energy drainers such as sickness, weather extremes, life stresses, etc., require us to make more energy. And, anything that drains our energy makes us work less well overall. This is true for all people, with or without mitochondrial disorders.

Patients with mitochondrial disorders experience a more profound effect from energy drains because their defect is in energy production and usage. They not only don't make energy as well, they don't use it as well. Think about old cars vs. new cars. New cars are very energy efficient compared to old cars. But, you can get an old car to work just fine if you understand how best to fuel it and pace it. Living with a mitochondrial disorder is essentially like using a car with an energy inefficient system. As a parent of a child with Mito, understanding your child's energy system better will help you not only help your child's body run as well as it can, but cut problems off at the pass when ever possible.

Understanding Mitochondria
Every one has mitochondria. In fact, almost every cell in our body has mitochondria. Mitochondria are really our body's energy factories and batteries. They are what drives everything.

A normally functioning mitochondria makes energy and helps allocate energy to each cell. Our cells then work in concert to complete the jobs our body needs done. In a sense, our body is one big energy factory, and the mitochondria are the workers.

We make energy with nutrition and rest. Foods, nutritional supplements, vitamins, and hydration all provide the building blocks for our body to make into the fuel our body needs.

One way to conserve energy is by resting. Sleep helps recharge our batteries, and pacing activities during the day helps keep extreme draining at bay and builds in a buffer for us to remake some energy. Staying healthy is also important, as is good preventive care.

Another important energy conserver is keeping stress at bay, both physically and emotionally. Dr. Mark Korson from Tufts New England Medical Center describes cells as buckets with holes in the bottom. Those holes have to be filled to keep energy from draining but can be affected by outside factors. The most common energy drains include:

  • Physical Exertion: daily activities and extras such as sports
  • Negative Moods: anxiety and depression
  • Hyperactivity
  • Ambient Temperature Extremes
  • Infections

So, addressing these energy drains fills the holes and maximizes energy conservation and use.

Your Action Plan: knowing your baseline
We all have a baseline of how we function usually. This baseline changes for all of us over time but more dramatically for mitochondrial kids, especially when very young. Your baseline is specific for you and changes from that baseline are often rather predictable.

The Big 5 Baseline Features to monitor include:
Skin color
Basic Vital Signs (heart rate, respiratory rate and pattern, blood pressure and temperature)
Overall Energy and Alertness
Gastrointestinal Function
Behavior and Appearance

You can turn these Big 5 Baseline Features into a simple check-list that can make a vague, difficult to grasp disorder start to become a bit more concrete and easier to understand and organize. By tracking these features daily, typically morning and night, you will become very well attuned to your child and learn patterns of features that indicate when your child is having a "good" day or a "bad" day. You'll learn what patterns of features are reassuring and what features are worrisome. And you'll have the salient information at your finger tips to provide to healthcare providers should your child require medical attention. In essence, tracking the Big 5 Baseline Features becomes your road map to understanding your child and knowing when to intervene.

Have a Game Plan
"Every action requires an equal and opposite reaction." Who would have thought that we'd be applying Newton's Third Law of Motion to our bodies?? But, it makes sense, especially in the world of energy problems. Your goal is to keep your child's energy bucket filled quicker than the losses can occur.

As you see, for energy issues, identifying the need, reacting to the need, and being organized is what will always help you in the end. And, remembering you are not alone!

Gwenn Schurgin O'Keeffe, MD
About Dr. Gwenn

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LisaK's picture



This article is so helpful! I love the Big 5. As an adult newly diagnosed, it has taken me months to figure out when I'm in trouble before I get to the point where I'm in need of hospitalization. My brain gets foggy and decision making is not one of my strengths at that point. This will help me, and my family, who say they can "see" when I'm not well even when I think I'm okay. Thank you, Dr. Schurgin O'Keeffe! I am grateful beyond words to MitoAction!! Lisa
edslisa's picture



Excellent information! I love that there are concrete features for me to look for to assess where the kids are at any given time.