EEG

‘I could feel in my soul something was off about this pregnancy. ‘We can’t find anything worrisome.’ They were missing something, and I knew it.’: Couple uproot themselves for son’s Angelman Syndrome diagnosis, ‘He is our little angel’

“‘He doesn’t have it.’ We hit a dead end. Knowing we needed to be exposed to new doctors, we put a poll on Instagram with three different states. We put our home on the market, sold it and all our furniture with it within 24 hours, and moved from Utah to Texas.”

‘After my C-section, I heard, ‘Wow! He’s got a big birthmark on his face.’: Baby is born with Port-Wine Stain and Sturge-Weber Syndrome, ‘Never did I think I would have to consider what anti-seizure medication would best keep my child thriving.’

“A bright reddish-purple color covered more than half of my newborn son’s face. ‘Will this birthmark fade? Will it get worse? What will other people think? Can this lead to other health issues?’ Looking back now, those first months of Leo’s life, I was living in fear. I was consumed by anxiety, exhaustion, and confusion.”

‘Call 911!’ My baby was twitching. I held his limp body. I heard sirens. They were coming for MY child.’: Boy suffering from Childhood Epilepsy undergoes brain surgery, ‘he is now happy and living with half a brain’

“We were getting ready for a nice picnic at the park. Suddenly, the right side of his body went stiff. His oxygen dropped. First firefighters, then paramedics. Our house was full of first responders. ‘Why is nothing working?!’ I wanted to wake up from this nightmare. I wanted him to live. I held my breath.”

‘He was sleeping late. I became suspicious, pulled the blanket back. My son had been dead for at least 8 hours.’: Mom begs parents to spend time with children now after 8-year-old son dies in his sleep, ‘we wish we had more time’

“I started to call 911, but hung up. There was a more important call I needed to make. My husband at work. ‘Wiley’s dead.’ I couldn’t sugar coat this and didn’t have time to explain. I had approximately 4 minutes to explain to his twin brother that his best friend had died before 15 people swarmed our home. I asked him to pick a location where he would feel safe. Then, sirens.”

‘He was perfectly healthy with no fever. I called 911 while mom made sure Sawyer didn’t harm himself. By the time the paramedics arrived the seizure had stopped.’: Mom details son’s experience through seizures, EEG and the Emergency Room 

“After being in our room at the ER for less than 10 minutes Sawyer had another seizure followed by another one less than an hour later. At this point, our new doctor was taking it very seriously. Sawyer got a CT scan and was admitted to the hospital. He had a few more seizures before we saw the neurologist on call.”

‘She looked like Cinderella, but lives like Sleeping Beauty. We feel guilty for fussing at her, but we had no clue.’: 16-year-old sleeps ‘more than 20 hours a day’ in comas due to severe epilepsy

“People have said she is ‘too pretty’ to be as sick as she is. They simply don’t believe us. This has even happened with doctors because she is dressed nicely and, if she’s well enough for me to prop her up, then I’ll put her makeup on. Her brain misfires more than 80% of her life. She’s been hospitalized hundreds of times, has stopped breathing, her heart has stopped and she’s had to be resuscitated.”

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