We are a family of four. Our oldest, Drew who is currently years old, loves and adores her little sister. She only wants her sister to be accepted. She doesn’t want anyone making fun of her. Thank you in advance for helping our family find the normal button.
Payton was born two weeks early by choice, on December 10, 2007 (with the assistance of Pitocin). After multiple doses, and 13 hours later, Payton was taken via C-Section. She didn’t scream at first, but soon after. She had 6 ear infections before she was 2 years old. As a result, she needed ear tubes and was globally delayed due to the fact she couldn’t hear the beginning sounds like normal children do for the first two years of her life. Soon after therapist noticed her rolling her eyes, which I just thought was a bad habit she picked up from me. After having an EEG, we confirmed those were actually seizures. She was having up to 60 seizures an hour, one a minute, which is heartbreaking. Currently only 5 an hour, but still too many in my opinion. We have seen several different doctors including an eye doctor, ear doctor, neurologist, metabolic doctor, and a genetic doctor, brain doctor, homeopathic doctors and more. We have had many blood tests, many long term EEG’s, 2 MRI’s, and EKG and most recent a Spinal Tap. All coming back normal with the exception of the EEG. We were at a loss and so were the doctors until metobics discovered she has Syngap1. Only 400 people in the world have this and its inherited, which we never knew.
At age 7, her current labels are; syngap1, globally delay, apraxia of speech, intellectual disability and absence seizures. Payton has been on 5 different types of medications and all have not solved the seizure activity. We are told by the neurologist, that as long as she keeps up with all her therapy (OT, PT and Speech), we won’t notice a delay by the time she is in High School. Hoping this is true as well as the possibility of growing out of our seizures. Our next step is another long term EEG on July 24th at CHOC in Orange and discuss a costly test not covered by insurance (x- chromosome sequencing). This test is about $10,000.00.
We just want what every parent wants, for our child to be accepted, loved and grow to become whatever she wants to be, and we want to make sure she has every opportunity like the rest of the world. Thank you for reading our story. XOXOX
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