Payton was born June 20 2010, after an uneventful pregnancy. When she was 6 hours old she turned blue and had to be rushed to Childrens Hospital Colorado over 2 hours from where she was born. When she was 2 days old she had open heart surgery to correct transposition of the great vessels. During the surgery she had a stroke. We spent almost 6 weeks in the hospital and then brought home what we thought was a now healthy baby.
When she was about 3 months old she had her first seizure. At first they were only a few here and there and then they gradually increased in frequency and duration. Her neurologist at the time did some testing and realized that she had some brain damage in her right frontal lobe. They had attributed the seizures to this damage and began treating her with several different medications. We continued to up her medications and try different combinations with no luck. I began to do my own research and suggested that what Payton was suffering from were not seizures but infantile spasms. I was told by the neurologist that if I knew more than him than to see someone else. And so we did. We found a new neurologist who almost immediately agreed with me that they were infantile spasms. We began treating her with Vigabatrin with no luck, we then moved on to ACTH (which we had to do in the hospital for the first week since she had a heart condition). It worked wonders and she was never cranky or irritable at all. Her spasms stopped with the ACTH but then we started noticing she was having petit mal seizures.
She was diagnosed with Aicardi by her opthamologist shortly after having finished the ACTH. She had an ERG and he noticed the chorioretinal lacunae and consulted with some colleagues of his and came up with the diagnosis of Aicardi.
She has since come a long way. She recieves PT, OT and speech once a week, and has a vision therapist once a month. She is learning some sign language and has learned to say momma and dadda and she has her own noise for bottle. She has learned to army crawl to get where she wants to go and she is getting a gait trainer so we can learn to start walking soon. She has been a blessing to her dad and I and all of her brothers and sisters. More pictures on my facebook feel free to friend me just let me know you are from here I am kind of picky about who I let on my page! facebook.com/jacksontanya7