Bonnie-Rose seemed healthy from birth but around 2 weeks old she started struggling with feeding, sweating, breathless. At a month old I took her into the hospital as I was struggling to get milk down her.
A murmur was found and an ECG was ordered. A large perimembranous ventricular septal defect was found. Her liver was enlarged and her heart was enlarged. She had fluid overload, and she was in congestive heart failure. She was put on medications Spironolactone and furosemide for the fluid overload. It seemed to help but she still struggled to feed, and at 2 months old we took her back to the hospital. The nurses tried but couldn't get enough milk down her so an Ng tube was put in and she was Ng tube fed till she was 1.
Around 9 to 10 months old we noticed head drops we took videos and showed a doctor on ward round. An EEG was arranged. They suspected infantile spasms as she had also regressed. The EEG shown a multifocal seizure disorder with frequent subclinical features which means her brain was constantly seizing in her sleep but we can't see those seizures. She was put on keppra. An MRI was arranged and blood tests were taken to look for genetic causes of epilepsy. The MRI failed as she had a bad reaction to the oral sedation. Her oxygen levels dropped very low and she was put on oxygen. The MRI has been rearranged but they want to do it with anesthesia. We're still waiting for an MRI appointment