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Glut1- DS
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2008年07月 12日(土曜日) 00:02 |
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NAME: Jordan
AGE: 13 years old
COUNTRY: U.S.A.
DIAGNOSIS: Glucose Transporter Deficiency Syndrome
REASON FOR COMING TO TREATMENT: When Jordan was six months old she began to experience seizures but her doctors were unsure about their cause. Her parents tried many different seizure medications but all failed to control her seizures. As she grew older she started to experience developmental delays in both movement and cognition. Her parents found some relief by starting Jordan on a ketogenic diet--a special diet designed to control her seizures. But Jordan still had severe difficulties walking and speaking. In 2007, Jordan recieved the diagnosis of Glucose Transporter Deficiency Syndrome (Glut1-DS), a rare genetic disorder that causes low glucose levels in the brain. After finally receiving the proper diagnosis, Jordan's parents started looking for ways to specifically treat her condition. They learned that other Glut1-DS patients had had success with stem cell treatments in China and they decided to bring Jordan there for treatment as well.
TREATMENT: Umbilical Cord Stem Cell Transplants, Cord Serum and Nerve Growth Factor combined with Acupuncture and Rehabilitation Therapy.
BEFORE TREATMENT: Before coming to China for treatment, Jordan had major difficulty with movement, balance and speech. Though she could perform day-to-day tasks like putting on her clothes, these tasks took great effort on her part because she had difficulty controlling her arms and hands. Balance problems combined with lack of coordination in her legs made it impossible for her to walk without support. She could get around with the help of a walker. But she dragged her feet and as a result would go through several pairs of shoes each month. As far as Jordan's cognition and speech were concerned, she could understand what other people were saying and could say a few words. But she could not string together words to form long sentences and was often very quiet and unresponsive.
AFTER TREATMENT: After receiving stem cell treatment in China, Jordan had a wide variety of improvements. Her gait became more natural and she only used one pair of shoes throughout her whole stay in China. Before coming she would have used several pairs of shoes over the same period of time. Jordan's fine motor skills also improved. She is able to hold a pen with more control and is able to color in the lines while drawing. Her mother is most impressed with the improvement in her speech and cognition. She is able to string more than one word together and is talking more in general. When her mother asked her how many days they had left in China, Jordan was able to hold up the correct number of fingers. Her behavior has improved as well. She started to make her own bed! While Jordan has always been an intelligent child, these new improvements are allowing her express herself much more fully and interact with the world in a more meaningful way.
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