My Son’s Amazing Recovery from POTS

My son has been extremely ill for three years. Bobby’s medical problems started with GI issues and he was diagnosed with Eosniphilic esophagitis and gastroenteritis, as well as elevated mast cell number in the GI tract. He ended up needing a feeding tube, but eventually he was unable to even tolerate amino acid formula. He continued to have constant stomach pain at level three. We decided to start adding in foods back into his diet because his pain no longer seemed food related. Bobby can now tolerate all foods again. While this was fantastic news, my son’s health continued to deteriorate.

Bobby began to have low blood pressure, elevated heart rate, and dizziness. His symptoms included severe nausea, stomach pain, muscle and joint pains, headaches, neck pain (and eventually could barely hold his head up), vomiting, diarrhea, constipation, slow gastric emptying, problems swallowing, dizziness, knee pains, tremors, tingling in hands, pale grey complexion with very dark circles under his eyes, visual problems (jumping, blurred, sometimes seeing stars), horrible acid reflux that was not controlled by medication, chronic all over pain, insomnia, brain fog, attention problems, inability to regulate his body temperature and other autonomic malfunctions.  My son was diagnosed with POTS, a form of dysautonomia. He had been a very athletic, healthy child who played baseball and basketball since he was five years old.   He ended up in a wheelchair and was barely able to leave the couch. He had been in the gifted program at school, but could no longer attend. Worse, Bobby could no longer read due to visual disturbances.

This summer, my son was finally diagnosed with Ehlers Danlos Hypermobility type. This was the missing piece of the puzzle that connected all of his diagnoses. Although his symptoms were consistent with his dysautonomia diagnosis, I felt that his continued to rapid deterioration and extreme symptomology meant that we were still missing something. My gut was telling me that there must be something else. So, I began to research all associated conditions of Ehlers Danlos that were consistent with his symptoms and found Chiari Malformation. This is where cerebral tonsils of the brain sink into the spinal column and compress the tonsils and block spinal fluid flow.

I had my son’s MRI looked at by three different top hospitals. All said that he did not have chiari malformation - everything was normal. I sent my son’s MRI disc and records to The Chiari Institute on Long Island, NY. They diagnosed Bobby with Chiari malformation, a retroflexed odontoid, and Cranial Instability. He needed brain surgery to fix the brain compression in two places. His brainstem was being compressed – this controls all autonomic function in the body. Could this be the cause of his POTS? Is this why the medications weren’t working? It was all beginning to make sense.

My son just had the surgery. It was a difficult recovery, but ALL of his symptoms are gone. No more constant stomach pain. No more nausea, dizziness, etc. He can eat anything he wants to now! His vision has come back and his brain fog is gone. He can read again!! Bobby will be in physical therapy to regain strength and range of motion for awhile, but he is looking forward to going back to school and being a kid again. Our amazing neurosurgeon, Dr. Rekate saved my son’s life. He said that once he repositioned my son’s skull in surgery, they could see immediately that the nerve impulses improved. His MRI images now show correct positioning of the brain and free flowing spinal fluid. We have discontinued all medication except for zyrtec and omeprazole, but we are hoping to stop those soon as well. I hope Bobby’s story will encourage all of you to keep searching for answers!