Energy Crisis: Educating the Child With Mitochondrial Disease (MITO)

by Stephanie Shapiro and Mary Swinn

Children affected with mitochondrial disease face unique hardships both physically and intellectually in the school setting. Parents offer advice that other parents, teachers, and administrators need to help these children succeed in their educational endeavors.

We often refer to ourselves as “mito moms.” We all have one or more children affected with mitochondrial disease. If a group of mito moms were sitting together sipping coffee, the stories and experiences of children with this disease would be so different. Mitochondrial disease is not easily defined. There are so many and varying physical manifestations, even within the same family, that it can be overwhelmingly difficult for families to find emotional and educational support, as well as effective medical strategies.

What is it?
Mitochondrial diseases are not one disease, but a group of metabolic diseases. These diseases result from failures of the mitochondria, the specialized organelles present in almost every cell of the body. Mitochondria are responsible for providing more than 90 percent of the energy needed by the body to sustain life and support growth. When mitochondria fail, less and less energy is generated within the cell. When this happens, cell injury and even cell death follow. If this process is repeated on a large scale throughout the body, whole systems begin to fail.

Both children and adults can be affected by mitochondrial disease. It is estimated that every 30 minutes, a child is born who will develop mitochondrial disease by his or her teenage years. It is difficult to determine the exact number of adults and children affected by a mitochondrial disease. Some are misdiagnosed or under diagnosed with such conditions as atypical cerebral palsy, various seizure disorders, other childhood diseases and diseases of aging, and chronic fatigue or fibromyalgia.

The signs and symptoms of mitochondrial disease can range from extremely mild to severe, involve one or more body systems, and can emerge at any age. For example, Judy Daprano-Rachau describes the symptoms of 7-year-old daughter, Kate, as “nonverbal and non ambulatory in a functional sense. She has significant cognitive delay. She has no self help skills and requires maximum assistance.” Stephanie Shapiro is the mother of two children affected by mitochondrial disease. She describes her life as day by day. The prognosis for a number of these children can be quite poor. On the other hand, many children and adults affected are able to run, play, and lead a moderately symptom-free life with cyclic days of fatigue.

Diseases of the mitochondria appear to cause the most damage to cells of organs and systems that require a great deal of energy: the brain, the heart, the skeletal muscles, the GI system, the kidneys, the liver and the endocrine and respiratory systems. Mitochondrial diseases are extremely complex. The severity of these diseases is unpredictable, and the range of symptoms is diverse. Mitochondrial diseases are difficult to diagnose, and unfortunately, there are few physicians who specialize in these diseases. If experienced physicians are involved, diagnoses can be made through a combination of clinical observations, laboratory evaluations, cerebral advances, and muscle biopsies.

What can be done?
Even though mitochondrial disorders are long term and currently incurable, treatments are available. Early treatment of symptoms can reduce their impact and limit further progression. Avoiding various medications and stressful situations may improve mitochondrial disease related symptoms. Treatment plans or therapy for mitochondrial disorders should be made on a case by case basis and with the consultation from a physician with experience in these diseases. In most cases, you are treating the symptoms of this disease and not the disease itself.
It is important for the family and “mito-medical team,” to determine which organs are most affected and treat accordingly. For example, a neurologist should be seen for seizure disorders or a GI doctor for digestive issues. Although treatment strategies can vary for children and adults, there are some signature things to avoid. These include psychological stress, cold stress, heat stress, starvation or fasting, lack of sleep, alcohol, cigarette smoke, and MSG (monosodium glutamate). Additionally, illness, especially with fever, should be treated as soon as possible. Many of these stressors can affect a child’s ability to learn in the school setting and should be addressed during the IEP process.

What about school?
It is the parent’s responsibility to alert the teachers and administrators to the specific needs of their child. There is no “cookie cutter” list of do’s and dont’s; each child has unique and individualized needs. That said, in general, it is extremely important to monitor the child’s energy level. Most mito moms would describe their child’s energy as a bank where energy needs to be saved and stored on a prioritized basis. Many children need a modified school schedule, computers to decrease small motor fatigue, additional water and snack breaks to remain hydrated, and constant monitoring of their core body temperature which tends to be lower than the average child. Because symptoms can vary on a daily basis for a child, constant and open lines of communication are a must.
One IEP meeting per year is generally not enough! Parents need to feel comfortable addressing issues as they arise. For example, at the beginning of a school year, a child might do well 5 days a week in school, but eventually need an amended IEP to reflect attendance for 3 days per week. It is also important to address issues such as homework and test taking. Mito moms are brave and love to talk about their children just like any other mom. Teachers should be encouraged to ask the parent if there are any additional concerns that have not been addressed. Parents and teachers should act as a team in creating the best educational environment for the child! If a parent feels they are not being “heard” by the school, the parent may request a meeting and invite another mito mom to attend, providing additional support and input.

Many parents, through trial and error, have developed strategies to assist their child at home. Through these strategies, they believe their child(ren) can better adapt to the school environment and enhance their ability to learn. These strategies vary from child to child, based on symptom types and severity, but may be helpful to promote a better environment for learning. Marie Reynolds, who has two children affected with mitochondrial disease, states, “Less is more with activities.” She also advises, “Don’t eat foods that stress the body, learn de-stressing techniques for emotional stress, give them a massage when necessary or a warm bath. Watch for signs and stop early before the stress level is truly felt.”

Appreciating the children
When you are the parent of a child with such incredible additional medical needs, it is easy to become overwhelmed by the diagnosis, symptoms, therapies, and daily medical care. Sometimes we forget our child is still a little boy or girl. The best therapy may simply be playing a game of catch or reading a book together. Celebrate the small moments as much as possible. Instead of focusing on what your child can’t or shouldn’t do, focus on their potential and what they do accomplish.

Our children with mitochondrial disease are beautiful. They are strong, courageous, and filled with joy during struggles that most adults would not be able to understand or accept. One mito mom beams with pride as she describes her daughter’s accomplishments in college. Another cries as she joyfully recalls her son’s first Little League game. Emily Swinn, daughter of Chris and Mary Swinn, succeeds despite her limitations. Emily is an honorary ambassador for the United Mitochondrial Disease Foundation (Atlanta Chapter) and in 2008 was awarded the Learning Disabilities Association of Georgia & Kids Enabled KIDS Gift Award. She fights with her mother about two-piece bathing suits and boys. She loves movies and, of course, the Twilight series. These are kids, just like all kids.

Additional information about mitochondrial disease can be found by at www.umdf.org.

Stephanie Shapiro and Mary Swinn would like to thank the United Mitochondrial Disease Foundation (UMDF) and other Mito-Moms for their assistance in writing this article.

6 Comments »

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1. [...] but certainly not least, in our feature article this month, mom’s Mary Swinn and Stephanie Shapiro give us insight into the life of a child with [...]

   Pingback by We love your comments! | Kids Enabled — October 6, 2010 #

2. Wonderfully written! I too am a “mito mom” to an incredible little boy!

   Comment by Kelli Morton — October 12, 2010 #

3. Nice Article!

   I was doing some reading on mitochondrial diseases on the Internet and I landed on this article. If anyone wants more information on mito, I would also like to suggest another page I found that includes a variety of information on mitochondrial disease: http://www.mitoaction.org/ .

   Comment by Kisney Lopes — January 13, 2011 #

4. I am a Mito Mom, too. My child will be transitioning to middle school next year. She has a relatively mild form of mito (she’s ambulatory, participates in a several activities like music and robotics (but no sports or PE), is academically fine), but fatigues easily and cannot control her body temperature at all. She is exhausted by the end of most elementary school days. I am wondering what, specifically, I need to address with her potential middle and high schools to make accessing classrooms across a huge campus more feasible. I’m wondering what other mito moms/parents have done to prepare for middle and high school (at least 7 classes a day, large campuses to walk, continuous temperature fluctuations …). Thanks for any tips!

   Comment by J. Carey — October 18, 2011 #

5. Great article and overview of mito kids and wonderful parent/caregiver tips as well!

   Comment by Babyfoodsteps — March 17, 2012 #

6. Still accurate, still an awesome article, still on the Mito journey and still enjoying every day with my boys!

   Comment by Marie Reynolds — April 10, 2012 #

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