Tomé girl scheduled to undergo brain surgery

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For as long as 12-year-old Alicia Jacquez remembers, she has had seizures. The first the family knew of them was when she had a grand mal seizure at 1 year old.

Her grandfather, Frank Garcia, was getting her out of her child car seat when it struck.

Deborah Fox-News-Bulletin photo: Alicia Jacquez, left, and her best friend, Emily Neusinger, have been friends most of their lives. Neusinger has learned how to help her pal when she has a seizure. Jacquez will undergo brain surgery on July 11 to remove a damaged portion of her brain that may be causing the condition.

“She just looked blank,” said Alicia’s mother, Marisella Jacquez.

They called Alicia by her nickname, Memrie, over and over, but she did not respond.

“Then, all of a sudden, she started convulsing, turned purple, couldn’t breathe — it was a full blown grand mal seizure,” said Jacquez. “When we got her to the hospital, she had about 12 to 15 (seizures) back-to-back. They couldn’t control them, so they had her heavily sedated on Valium.”

The child was air-lifted to Presbyterian Hospital. The doctors were able to get the seizures under control within a day, but they sent the Las Cruces family home without any answers.

“We don’t know why, we don’t know where, we don’t know — she’ll grow out of it,” Jacquez said the doctors told her.

A few months later, Alicia had another grand mal seizure.

“It was the same situation again, that bad. In the hospital they couldn’t control them,” said Jacquez. “The same scenario.”

The family has been to numerous doctors, but none have given them a diagnosis for their child’s seizure condition.

They decided they needed to be closer to the hospital in Albuquerque and moved up to Tomé.

The seizures seemed to stop, but then Alicia exhibited intense behaviors. She became an angry child, Jacquez said.

“She went through this stage of behavioral problems that became really, really hard,” she said. “So, they started trying to treat it as behavioral problems. Well, maybe she’s ADHD, maybe she’s this, maybe she’s that, because we weren’t seeing these full blown seizures anymore.”

When Alicia was about 10, other symptoms appeared. She would stare in a “weird” way, and would sometimes utter different words that didn’t make sense. Jacquez called it “word salads,” and said anxiety triggered the episodes.

“She’s been on all kinds of medication at this point,” she said. “She is taking over 10 pills a day to keep from having seizures.”

So, the family took Alicia back to the hospital, but again, the doctors couldn’t answer the family’s questions.

Then she was transferred to the University of New Mexico research center, and within a couple of months, it was discovered that Alicia’s brain had a damaged area.

“Her left hippocampus — they should be round and healthy — one of them is completely shriveled,” Jacquez said.

The hippocampus is a limbic system structure that is particularly important in forming new memories and connecting emotions and senses, such as smell and sound to memories.

“That was devastating news to hear, but at least it was finally news after so many years,” Jacquez said.

More brain scans revealed a second damaged area of Alicia’s brain, the left frontal lobe.

“Two damaged areas became more intense,” Jacquez said.

The doctors want to open Alicia’s cranium for further tests. Doctors told the family the operation would be scheduled in the spring, and the family is anxious to get it done.

“She needs four to six months to recover and she has already missed a year of school doing home-bound schooling,” Jacquez said. “You know, this is not something that we could just put off.”

Finally, the procedure was scheduled.

On July 11, Alicia is scheduled for a surgical procedure to allow the doctors to monitor seizures at the damaged sites. They will open her cranium to attach the electrodes on the surface of the brain, then close it back up.

All of Alicia’s medications will be stopped and seizures will be induced to see if a portion of the damaged brain is what is causing the seizures.

Then the doctors will perform brain surgery to remove the damaged area.

“She should be able to live normally, seizure free, no medication — she could drive, she could swim, things she’s not able to do now,” Jacquez said. “We were really excited. This is a good chance for her.”

This is the first pediatric case that the UNM Research Center will do, she said. Up until now, it has only been performed on adults.

Alicia has been in and out of the hospital and missed a lot of classroom time. She has also been taunted at school, her father, Pablo Jacquez, said.

But, Alicia’s best friend, Emily Neusinger, has stood by Alicia even when she was irritable and hard to be around, Jacquez said.

Neusinger, like Alicia’s family members — older sister, Priscilla, and brother, Dominic, and younger brother, Pablo Jr. — has learned about seizures and how to help her get through them safely.

“The day I witnessed her glazed eyes, the blank expression on her face, and listened to her slurred speech before she collapsed in my arms … I realized the difference between being told of the seizures and witnessing a child suffering from a seizure,” her grandfather said in an email.

“This has also taken a toll on our family in many ways,” said Jacquez. “I had to stop working to stay home with her once she wasn’t able to be in school anymore.

“Hopefully we won’t lose our house to foreclosure, but I have explained to our four kids that her health is the most important issue we have to face,” she said. “They are all so very supportive.”


-- Email the author at dfox@news-bulletin.com.