- CASE FILE
For over a year, my son, Elijah, has suffered from having to eat 4-5 times a normal quantity of food and weight loss. He is 116 pounds.
ABOUT THIS CASE FILE
Elijah was diagnosed in July with Gitelman syndrome, a rare disease affecting 1 in 40,000 people and manifesting in adolescents or young adults. It is a autosomal recessive inherited disease of the kidney that results in an imbalance in the calcium, magnesium and potassium in the body. The inability of the kidneys to maintain the proper balance results in low blood pressure, fatigue, weakness, muscle spasms, salt craving, chondrocalcinosis and potentially dangerous abnormal heart rhythms. Gitelman syndrome is not the medical mystery. Our medical mystery is that Gitelman syndrome does not account for Elijah's persistent hunger that impacts every aspect of our lives. We began searching for a solution in January, when my son's weight was down to 106 pounds and he looked like a walking skeleton. I kept thinking my son is going through a growth spurt, but he consistently needs to eat massive meals. For example, he eats more for breakfast than I eat in 2 days. His lunch is enough for a family of 4. He then eats a second lunch at 3 pm, a dinner at 6, again at 8, at 10 and in the middle of the night. I am not a stingy or cheap person. It breaks my heart that I cringe at what my son's eating is costing me. It has cost me my independence. It has cost me the ability to provide for him without help from a large number of people and my bills aren't paid. It is not normal. Please don' t write this off. Please see for yourself. The massive amounts he eats garners attention from onlookers when we eat out at buffets. I feel sorry for the restaurant owners. He is not getting nutrition from the food he eats. We have been searching for an answer medically since January and me and my family are running out of resources. My son's teenage years should be about more than the need to eat constantly. He has trouble concentrating on anything else. So do I. Medical costs for this search given his rare disease diagnosis in July was not the cause, but requires treatment, have been overwhelming. Elijah has a pcp, gastroenterologist and nephrologist. We have ruled out infection, thyroid disorder, bulimia, diabetes, parasites, and several gastrointestinal disorders have been ruled out. We are running out of ideas.