Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Low Blood Sugar (Hypoglycaemia)
Boys can be prone to episodes of low blood sugar which can be managed through frequent feeding and regular snacks. This is probably due to their low muscle mass. Low blood sugar can be life-threatening, at first causing drowsiness and sweatiness but, if not caught in time, can lead to a coma.
Taking cornstarch/cornflour just before bedtime can reduce these episodes as well as prevent any overnight wasting of muscle. Please see our Cornstarch Factsheet for details of dosages etc.
Acidic blood due to a build-up of lactic acid, especially during infancy. Lactic acidosis is common when severe heart failure occurs. However, boys with Barth syndrome can also develop hypoglycaemia and/or lactic acidosis during viral infections which cause vomiting or prevent feeding. This is especially the case with viral gastroenteritis which may need early hospital admission for intravenous supplements.
Many boys with Barth syndrome have a similar look. They have a broad forehead, a round face with full cheeks, deep set eyes and large, slightly prominent ears.
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