My daughter was 6 months old when she started having seizures.
We lived in Phoenix, Arizona at the time and we took her twice to Phoenix Children’s Hospital before they started testing her. At last,they finally discovered that she had almost no trace of Magnesium or Calcium in her blood. It was a neurologist, Dr. Kaplan, who suggested that it was Hypomagesmia with Secondary Hypocalcemia because he had seen one other case in his over-30-year medical career.
Lauren’s disorder is in her TRMP6 transport channel which controls the absorption of Magnesium. She takes large does of Magnesium to try to passively get Magnesium into her body. After being stable for many years she has been struggling to keep her magnesium levels up since October 2013.
Lauren will be 9 this year, and I have searched for a support group for others like her. I know others like her are in other countries like Germany, Turkey, Israel, Saudi Arabia and others but we have not found anyone like her in the US. It would be wonderful to find someone else like her. We live our life day by day and take every challenge as it comes.