Lincoln family shares story of son in epilepsy awareness month

Lincoln, Nebraska-November is National Epilepsy Awareness Month. In the United States, 3.4 million people have epilepsy. Here in Nebraska, more than 19,000 people live with brain damage. 11-year-old Max Perry is one of them.

Almost every day, you can see Max reach a new level with Candy Crush.

It’s when he’s not having a seizure, or when he has a “thunderstorm” in his brain, as his parents explain it.

“We didn’t expect to be affected by epilepsy. Eighteen months later, there was a boom, the first seizure,” said Max’s mother, Nikki Perry.

After years and hundreds of seizures, Max had his first brain surgery at the age of five.

“I couldn’t cope with him having any more seizures,” Perry told 10/11.

A few months later, Perry packed his bag and headed to New York City to see a new brain doctor who specializes in epilepsy patients. Under his care, Max underwent brain surgery again.

“There has been some progress in his seizures compared to the first brain surgery,” Perry said.

Max was in kindergarten and sophomore, but things have changed since then. “He actually goes after school when all the kids are gone and working in the resource room for about an hour,” his mom told us.

Triggers such as overheating, poor sleep, or getting sick can cause Max attacks more often.

His mom is always aware of when things go wrong, implying that a seizure is likely to occur, such as Max turning pale, blurring words, and losing balance. However, before being formally diagnosed with epilepsy, Max’s mother had an unnoticed seizure when she had a seizure, as Max usually stared white at her face and appeared to be out of breath. Say it.

“No one expects it to happen to them, but no one knows who will do it,” Perry shared.

If you are around someone when you have a seizure, the Epilepsy Foundation says you should:

Immediately start timing seizures. Keep away from anything that could hurt you. Turn the person sideways and place a soft object under the neck. Do not put anything in your mouth or hold it down. Stay with them until they wake up and be alert and call 911 if necessary.

His family continues to raise awareness and advocate for epilepsy patients. His mom testified in front of the legislature in support of the epilepsy CBD exam. Max and his parents shared his story with UNMC nursing students to further educate them about epilepsy. Max was awarded a COVID-19 grant by the Child Neurology Foundation. There, Max will represent the winners on neurological issues. His parents also participate in several Facebook groups that connect and support other families.

Currently, Max has seizures every 7-10 days and is taking 7 different medications.

His mom said that Max’s body, like many other epileptic patients, could not tolerate “therapeutic doses” and increased appetite, weight gain, weight loss, dizziness, tiredness, anger, self-injury, He explained that he suffers from many side effects such as changes in taste, inability to sweat, changes in odor, increased and uncontrollable body ticks, repetitive noise, excessive crying, and very emotional. One of Max’s medications allowed him to go for a month without having a seizure, but his mom had Max’s body adapting, getting used to the medication, and usually prone to recurrence of seizures. There is a stage for newlyweds.

Max’s mom says on 10/11 that the next step is for her son to get an RNS, a brain implant. This will hopefully stop his seizures. Max also has a genetic mutation, so his parents say gene therapy may help. They are both genetically tested and are in the gene therapy research and database for research.

Despite experiencing difficult times, Max’s family wants to keep hope for others with epilepsy.

“Currently, there may seem no light at the end of the tunnel, but keep your faith. Don’t give up,” said Max’s dad, Mitch.

If you want to be certified as a first aid for seizures, the Epilepsy Foundation offers zoom classes for the rest of November.Click to register here..

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