Hi Everyone, This is a major cross post, so I apologize for all of the repeats, but I am hoping that my son’s story can help others. My son is 13 and has been very sick for 3 years. He started with GI issues and was diagnosed with Eosniphilic esophagitis, eosinophilic gastroenteritis and elevated mast cells in the GI tract. He ended up needing a feeding tube that worked for a period of time until he was unable to even tolerate amino acid formula. Then, he began to have low blood pressure, elevated heart rate, dizziness, and inability to regulate his body temperature and was diagnosed with dysautonomia (POTS.) At this time, he had elevated tryptase levels and elevated urine histamine levels also so we tried a medication called Gastrocrom. We thought that it did not help because my son still had a level three constant stomach pain. We decided to start adding in foods because his pain no longer seemed food related and amazingly, after three years, he was able to tolerate all foods again. Even though he still had unchanged stomach pain, I now believe that Gastrocrom calmed down his mast cell issues. While this was fantastic news, my son’s health continued to deteriorate. He was a very athletic, healthy child. He played baseball and basketball since he was five years old and was in the gifted program at school. He ended up in a wheelchair, barely able to leave the couch, could not attend school and could no longer read due to visual disturbances. 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 (uncontrolled by omeprazole, nexium, ranidine, etc.), chronic all over pain, insomnia, brain fog, attention problems, inability to regulate his body temperature and other autonomic malfunctions. 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 they were so extreme, he continued to deteriorate so rapidly, and 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. I 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 of them told me that he did not have chiari and that everything was normal. Then, I found this video online youtu.be/qBGjQT9jpc0. This was our story almost exactly. I sent my son’s MRI disc and records to The Chiari Institute on Long Island, NY. I received a call back after they reviewed all of his records and told me that my son had Chiari, a retroflexed odontoid, and Cranial Instability. They also said that he needed brain surgery to fix the problems. He had compression on his brain in two places. The top of his spine was pressing into his brain stem. The brain stem controls all autonomic function in the body. It was all beginning to make sense. I was terrified to do the surgery, but also terrified about my son’s deterioration and the fact that other children die from this. My son just had the surgery on December 10th, 2014. It was a difficult recovery, but ALL of his symptoms are gone. No more constant stomach pain of three years. No more nausea, dizziness, etc. He can eat everything now including hot wings! His vision has come back and his brain fog is gone. He can read again!! He 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 will gladly answer any questions any of you may have. I hope this most can help some of you and encourage all of you to keep searching for answers!
Posted on: Mon, 29 Dec 2014 18:28:27 +0000
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