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Mitochondrial diseases in children are serious. Cleveland Clinic Children’s provides the best, most compassionate care for your little one.

Mitochondrial Diseases in Children

Mitochondrial diseases in children are serious. Cleveland Clinic Children’s provides the best, most compassionate care for your little one.
Mitochondrial disease saps your energy and affects your entire body. At Cleveland Clinic, we can help you learn to manage the symptoms of this lifelong condition.
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Everyone’s cells have mitochondria. These little powerhouses produce most of the body’s energy. So, what happens when your child’s mitochondria shut down?

If mitochondria can’t make energy in your child’s cells, their body won’t be able to produce the energy it needs. And that can affect how your child’s organs work. Mitochondrial diseases are chronic (ongoing) conditions. They can cause strokes, a higher risk of infections, seizures, breathing problems, developmental delays and other complications.

And because there are different kinds of mitochondrial diseases, it’s important to find healthcare providers experienced in treating these conditions in children. Your child will get the best care for their mitochondrial disease at Cleveland Clinic Children’s. We’re here to help them, and you, learn to manage their condition so they can live life to the fullest. And if complications come up? We’re ready to handle those, too.

Why Choose Us to Care for Mitochondrial Diseases in Children?

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Personalized care:

Cleveland Clinic Children’s providers are familiar with the many symptoms of mitochondrial diseases. They understand that every child experiences mitochondrial disease differently. This means our team spends time getting to know your child so they can offer care that matches their needs and provide caring support for your family.

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Caring approach:

We know testing and treatments can sometimes make kids uncomfortable. Our child life specialists will help your child understand what’s happening so they can feel more at ease at appointments and during procedures. We do this at their level with play, talking one-on-one and being there for them when they need a helping hand. Meet our team.

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Trusted experts:

Cleveland Clinic is named a Mitochondrial Medicine Center by the Mitochondrial Care Network. We earned this honor by consistently providing high-quality, comprehensive care for children and adults with genetic mitochondrial diseases. We also work with the North American Mitochondrial Disease Consortium (NAMDC) and the Mitochondrial Medicine Society to help set care standards for this condition.

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Demonstrated expertise:

Cleveland Clinic Children’s neurology and neurosurgery providers are pioneers in the latest treatments for many of the conditions we treat. Lots of these — like mitochondrial diseases — affect other areas of the body. So, our team works closely with expert providers from different specialties to make sure your child gets the best care for their diagnosis.

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Virtual visits:

When your child isn’t feeling well, it might be the perfect time to schedule a virtual visit. You and your child can connect one-on-one with their pediatric providers without leaving home or changing out of PJs. All you need is a smartphone, tablet or computer.

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National recognition:

Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized throughout the U.S. for our expertise and care.

Diagnosing Mitochondrial Diseases in Children

When you learn your child may have a mitochondrial disease, chances are you may never have heard of mitochondria or these conditions.

But the news still probably made you catch your breath and left you with a lot of questions. What is it? How did it start? What does their future look like?

Types of mitochondrial diseases in children

Mitochondrial diseases in children are genetic conditions. They start from gene changes (mutations) that can be passed down through families (inherited). Or they can happen sporadically, without any family history of the condition.

Mitochondria are tiny rods in every cell. They make up 90% of the energy your child’s body needs to work and grow. They do this by using oxygen to turn the food your child eats into fuel to keep their bodies running.

Mitochondrial diseases start when the mitochondria stop working. This can affect different areas of your child’s body like their eyes, brain, heart, stomach, muscles and more. There are different types of mitochondrial diseases, and some are more serious than others. A few are:

These and other types of mitochondrial disease have symptoms that can be incorrectly diagnosed as other things. These symptoms can be present at birth but can also happen at any age. And they can vary from person to person. They might progress slowly. Or they may flare up and get worse quickly and drastically.

What to expect at your first visit

It’s OK to feel nervous when you come to your first appointment with Cleveland Clinic Children’s. After all, your child is facing a serious diagnosis. And it’s normal to worry. Our providers understand this. That’s why they take the time to get to know your child (and you) from the moment they walk into the exam room.

As your child’s provider talks with you and them, you can expect to answer a lot of questions, like:

  • What kind of symptoms does your child have?
  • How long has your child had these symptoms?
  • How are these symptoms affecting your child’s life?
  • Has your child been diagnosed with any other health conditions?
  • What’s your family’s health history?

Your child’s provider will give them physical and neurological exams. And they’ll order some tests to help them confirm a diagnosis and rule out other conditions.

Testing for mitochondrial diseases in children

Your child will have bloodwork, including DNA (genetic) testing. And we may have them do urine tests (urinalysis). They may also possibly have a spinal tap (lumbar puncture). This helps us see what’s going on in the fluid around their brain and spinal cord (cerebrospinal fluid).

To see how symptoms are affecting your child’s brain, eyes, heart and ears we may do:

We’ll also do tests to check how well your child’s heart is working. They may have an electrocardiogram (EKG) or an echocardiogram (Echo). Or both. Our team may also do advanced biochemical testing. This means we’ll look for changes in chemicals that help mitochondria make energy.

Meet Our Team for Mitochondrial Disease in Children

Mitochondrial diseases affect so many different parts of the body that your child may have a care team of providers from many specialties, like:

We build this team based on your child’s needs — and how mitochondrial disease affects them. This team works together to create and follow a highly personalized treatment plan

Locations

Our healthcare providers see patients at convenient locations in Northeast Ohio.

Treating Mitochondrial Disease in Children

No single treatment covers all mitochondrial diseases in children. Your child’s care plan considers the type they have along with their symptoms and overall health. We’re here to help them manage their condition and prevent serious complications.

Your child may need to take prescription medications to reduce symptoms like seizures. They may need hearing aids or benefit from speech, physical or occupational therapy. We may recommend they take vitamins or supplements and eat a healthier diet. It’s important to understand that treatments that work for one person may not be the best for your child.

Your child will have regular checkups with our pediatric team. This lets us keep an eye on their health and look for signs of complications, so we can manage symptoms and problems quickly.

Taking the Next Step

Mitochondrial diseases in children are serious. Finding out your child has one can leave you worrying about what’s next and what their future looks like. At Cleveland Clinic Children’s, we make sure you don’t have to face the unknown alone. We’re here to answer your questions, listen to your concerns and walk you through every step of your child’s ongoing care. And if things ever seem too heavy to manage, we’re here to lift you up. Our team supports you, your child and your family at every twist and turn.

Getting an appointment with Cleveland Clinic Children’s mitochondrial diseases experts is easy. We help your child get care.

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