or walk.
We consulted a pediatric neurologist who tested for muscular dystrophies and epilepsy, both of which were negative. Craig's motor skills were not developing appropriately, and he had symptoms of ADHD (hyperactivity, impulsivity, difficulty carrying through on tasks, etc.). He was given a tentative diagnosis of motor dyspraxia, and enrolled in a special preschool program with physical and occupational therapy. For awhile there were fewer episodes and he seemed to be outgrowing his problems. However, at age 5, the illness reemerged with an increase in symptoms and severity.
In the fall of 2001, Craig started having crying episodes again with extreme tiredness and difficulty walking. By January 2002, he was having more difficulty using his legs and feet. He began toe-walking sometimes and his ankles began tremoring when he walked. His hands also began tremoring during fine motor tasks. In February his speech slowed down.
In April 2002, Craig began having episodes which were later diagnosed as seizures. At one point his entire body thrashed for over an hour. Still, the doctors at Children's Hospital were baffled as to what was causing his problems. All of his tests continued to be negative. After two days, he was discharged without a diagnosis and had two more jerking episodes later that day.
Once he was diagnosed with seizures, medication worked to control the episodes of unusual movements and altered consciousness, with adjustments at times. Unfortunately, Craig's overall condition continued to worsen over the next year. His body became more restless, constantly in motion, and he began to have sometimes severe pain- in the legs, arms, neck, back and stomach. In January of 2003 he had visual hallucinations off and on for several weeks.
Fortunately, through our internet research we found a pediatric neurologist, Dr. Bruce Cohen, at the Cleveland Clinic who had the expertise to help Craig. He discovered that Craig had a Co-enzyme Q 10 deficiency and began to treat him with high doses of Co Q10.
In August 2003, we also discovered through a muscle biopsy that Craig's leg muscle had an abnormality called ragged-red fibers. This, along with the Co Q-10 deficiency, pointed to the diagnosis of a Mitochondrial disorder. After four years of tests, we finally had a name for his illness.
Unfortunately, Mitochondrial disease is incurable and often fatal, at some point, especially if it begins at an early age. The mitochondria are the parts of the cell that produce energy. If they are not working properly the brain, muscles and/or other organs cannot function well. We began Craig on medicine and supplements that support mitochondrial function in the hopes that we could slow down the progress of the disease for as long as possible. They have definitely helped, but he continues to regress over time.
In the past couple years, both Craig's younger brother Dalton and myself (his Mom) have developed symptoms of mitochondrial disease. It is a genetic disorder that is sometimes passed from the mom to all her kids.
Every person in a family can be affected differently, though, and it is impossible to predict what course it will take in each of us. Right now, Craig is by far the most affected.
We try not to look too far ahead. Mito has taught us to love each other deeply, find beauty even in very difficult circumstances, and trust in God for whatever the future holds.
For more information on mitochondrial illness see the following website: www.umdf.org .
Symptom Summary
Test Results
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