When doctors failed to properly diagnosis her son’s mystery illness after years of watching him suffer, one determined mom was able to use the Internet to help cure him.
Keri Leithauser watched in horror for years as her 13-year-old son battled chronic agonizing pain. At the age of nine, Bobby Leithauser suddenly started to experience scary symptoms that included horrific stomach pain, headaches, tremors, and an inability to control his blood pressure and body temperature. Doctors eventually diagnosed Bobby with dysautonomia and Ehlers-Danlos syndrome, but neither of those illnesses accounted her a number of other symptoms the young boy was experiencing.
“It was really horrendous pain and I couldn't hold my head up for more than 10 minutes at a time,” Bobby explained.
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Bobby eventually ended up with vision loss, in a wheelchair and on a feeding tube, and his frustrated parents started to feel totally helpless. Keri started doing research online and began talking to parents of kids with similar symptoms, and eventually, it all started to come together.
“The whole time we were looking at stomach pain, never imagining that the problem could be in another part of his body, like the brain,” Tom Leithauser, Bobby’s dad, said.
Keri ultimately ended up reaching out to Dr. Harold Rekate, a neurosurgeon at Cohen Children’s Medical Center in New York, and after doing some scans, Rekate says he knew exactly what was wrong. Bobby was soon diagnosed with a Chiari malformation.
The Daily Mail explains that the child’s spine and skull were not being held together properly due to loose ligaments, and the problem with alignment caused the brain to be squeezed.
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“I knew he could be helped by surgery,” Rekate said. “I knew that the chronic pain that he was in, that the inability to exercise could be helped, that we could change his life.”
Now, Bobby is almost totally better and is able to walk again. His symptoms are virtually gone, and his parents say they can only describe his recovery as a “miracle.”