MedWatch Today: Local child battles Lennox-Gastaut syndrome

Med Watch Today

Epilepsy is a central nervous system disorder that is characterized by recurrent and unpredictable seizures.

It has no identifiable cause in about half the people with the condition and it can happen to anyone. This was the case for Colton Ogden, whose symptoms began just a few months after turning a year old.

Lori Ogden said, “He was born healthy, developed normally, was verbal, after about two months of the seizures starting at 17 months, he began to lose his speech and it progressed from there. So, now, after so many years of just the constant seizures, he’s severely delayed.”

Dr. H. Terry Hutchison is a pediatric neurologist. He diagnosed Colton with Lennox-Gastaut syndrome, a rare and severe type of childhood onset epilepsy where intellectual and physical development is usually delayed and often worsens over time.

“And Colton has all of those features. Lennox-Gastaut is particularly frustrating in terms of treatment. Many times we are just not able to control the seizures. Sometimes we can help, but by and large those that make up a larger part of people with epilepsy don’t respond to treatment,” said Dr. Hutchison.

Colton is in and out of the emergency room, usually admitted with continuous seizures that need to be stopped and brought down to his baseline, which Dr. Hutchison said is still several seizures a day.

He added, “A seizure is something that jumps on you when you least expect it. So, that’s what epilepsy is. It’s recurrent, unprovoked seizures. There’s no cure. And you know, epilepsy is a major source of disability in this country. It’s a major source of death.”

Lori said, “And with that, it’s just, you’re constantly just chasing the next thing hoping for a new medication to come out, hoping for a new treatment that can alleviate some of the problems or side effects from some of the drugs he has to be on. He’s on six medications right now that just make him sleepy. They can cause kidney problems, so whenever anything new comes out, of course, we try it.”

But, Dr. Hutchison often times, it’s the family members that need him more than the patient does. He’s developed a strong bond with Lori and her son.

“Wonderful lady, I feel close to her, she’s like part of my family. And you know, when Colton is in the hospital, I spend more time with her than I do with Colton. Obviously, I always say, in pediatrics, we don’t treat patients, we treat families,” the doctor said.

Lori continued, “I didn’t really think about that until he said it, but it’s very true. Colton’s run out of options. There aren’t any new medications. So when he comes to the hospital at 3am, it’s to settle me down. It’s to build me back up so I can fight for him again. It’s definitely a family illness and it’s a family recovery. I have other children at home so it’s always a juggle on who goes where, who does what while mom’s gone, because Colton takes a lot of time.”

Dr. Hutchison stated, “People with, who have kids with Lennox-Gastaut, often their life has changed, that’s it. It’s a door you walk through, you can’t come back. Once you go through that door, you’re never going to be the same again.”

Colton’s diagnosis requires him to see several specialty doctors periodically and Community Regional’s Pediatric Specialty center makes it easier for Lori, Colton and everyone involved.

Lori said, “That’s great about here is that they’re all together. All of the specialties are together, they work together, they know each other, same building. Sometimes we see all three of them at the same time, the same appointment. They’re really good about bringing you in and taking care of it. You don’t have to keep coming back and forth. It’s a one stop shop.”

Staff at Community Regional know Colton by name and Colton has grown comfortable around them, even showing a playful demeanor at times.

“Colton may not be verbal, but he definitely gets his likes and dislikes out to the staff. He has his favorites, he plays favorites with the nurses. They’re our family. We talk outside of the hospital, you know they become our family when you’ve got a chronic kid, it takes a village and they’re my village,” ended Lori.

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