Anna's Story
Birth-One
One-Two
Two-Three
Five-Seven
Anna's Pictures
Anna's Pictures, Part 2
3 years, 11 months: 24-hour EEG was normal. We made it through a URI with no seizures! However, her cough lasted 3 weeks then turned into pneumonia. She had 2 tonic-clonic seizures, we gave her ativan which caused her sats to drop. She rebounded after 15 minutes of oxygen. It was nice to not have to go to the hospital. We're increasing the Lamictal. She's lost a couple of pounds. Her behavior regressed again, but improved one week post-ictal. We also started her on melatonin to help with the sleep issues.
3 years, 10 months: Back in school and behavior improving. It seems as if the Trileptal increased her appetite and increased seizure activity, but made her ADHD-like. Unfortunately the Lamictal is causing severe insomnia and she's not eating again. Anna learned how to pedal a trike at school.
3 years, 9 months: Anna's behavior has really regressed. She has no impulse control or attention span. We think it may be the Trileptal, so we are weaning her from it as we increase the Lamictal. Anna also had a spinal tap under general anesthesia to look at Glut1 Deficiency Syndrome, neurotransmitters, lactic acid, and amino acids. All tests came back normal. We followed up with the geneticist who recommended screening for Fragile X, mitochondrial disorders, and inborn errors of metabolism. We'll get this bloodwork done the next time she needs a blood draw. We got a pulse-ox, oxygen, and liquid ativan at home. Hopefully we can avoid another hospital stay.
3 years, 8 months: Anna came down with another respiratory virus before Thanksgiving that led to 3 tonic-clonic seizures within one hour. We administered Diastat, then she seized again at the ped's office. She was admitted to the hospital for 2 days. We increased her Trileptal to 9 mL/day and started her on Lamictal. We also pulled her out of school until the first of the year.
3 years, 7 months: 2 more isolated tonic-clonic seizures with no fever, 2 increases of Trileptal. Anna's glasses prescription worsened again to -7.5.
3 years, 6 months: Anna had another tonic-clonic seizure in the middle of the night with a low-grade temperature. While at the doctor's office, she seized again. We were admitted to Children's Hospital for tests. Later that evening, she had another seizure. Her MRI and EEG were normal. We have a diagnosis of epilepsy and have started on Trileptal.
3 years, 5 months: Anna is a big sister! Dominic James was born on July 29th, 2004, weighing 6 pounds, 8 ounces. He has no signs of hypotonia.
3 years, 2 months: Anna had a febrile seizure that lasted 5 minutes. I had to call 911. The docs said she would probably have more, but they were not dangerous. Her EEG was normal.