COLUMBUS, Ohio (Ivanhoe Newswire) — Almost half a million American kids live with epilepsy and another 10 to 20 million have a chronic illness. As these younger patients grow up, many will need to start treatment with adult specialists, putting them at risk of falling through the cracks. Ivanhoe has more on transitioning care and learning to live in an adult world.
Clara Hartman was in high school when she was diagnosed with epilepsy.
“I didn’t have my first grand mal seizure until I was 16ish, around there.” Clara says.
High school is tough enough for a teen and sometimes even tougher for kids with chronic illness.
Clara says, “I definitely drew back, kind of isolated myself.”
Doctor Emily Nurre leads a specialized program helping teens with epilepsy manage their condition.
“It’s a time for high, you know, no-shows, missing visits just because it’s all new to them. That can leave them open to gaps in care and gaps in getting their medications.” Explains Doctor Nurre.
Doctor Nurre suggests parents start moving their children toward a transition in care years before the change is actually necessary.
Doctor Nurre says, “Nationally it’s recommended to start around 12 for any kind of chronic illness.”
Encourage the child to interact with doctors independently. Encourage age-appropriate talks about concerns that are specific to teens and young adults, like driving … and family planning.
“They’ve been on a medicine that may have some birth defects if used in pregnancy. Then we bring that up and we talk about would you want to consider switching?” says Doctor Nurre.
For Clara, transitioning to a new doctor brought an additional challenge. Anxiety made it tough to initiate conversation.
“So, I had to get over that in order to communicate with my doctors.” Explains Clara.
Now, eight years later, Clara is almost completely seizure free, living on her own, and is studying to be a clinical psychologist to help other kids with chronic illnesses.
The University of Cincinnati developed the epilepsy transition clinic in 2019. Doctor Nurre says many of the steps they take to help teens adjust to their adult doctor can be applied to teens with other chronic conditions. Parents looking for additional tips to help their child transition their care can find more information on the child neurology foundation website.
Contributors to this news report include: Cyndy McGrath, Producer; Kirk Manson, Videographer, Roque Correa, Editor.
GROWING UP WITH EPILEPSY: CHANGING DOCS AS YOU GO
BACKGROUND: Epilepsy is the fourth most common neurological disorder in the world. According to the CDC, almost 3 million Americans live with epilepsy and nearly 200,000 people in the U.S. develop this condition annually. It involves surges of electrical activity in the brain that can cause recurring seizures. Seizures may relate to a brain injury or a family trait, but often the cause is completely unknown. Causes are thought to include an imbalance of nerve-signaling chemicals called neurotransmitters, tumors, strokes, and brain damage from illness or injury, or some combination of these. The type of seizure depends on which part and how much of the brain is affected and what happens during the seizure. The two broad categories of epileptic seizures are generalized seizures and partial seizures.
SYMPTOMS AND DIAGNOSIS: A person can have varying degrees of symptoms depending on the type of seizure. Some general symptoms may include staring, jerking movements of the arms and legs, stiffening of the body, loss of consciousness, breathing problems or breathing stops, loss of bowel or bladder control, falling suddenly for no apparent reason, not responding to noise or words for brief periods, appearing confused or in a haze, and periods of rapid eye blinking. During the seizure, lips may become bluish, breathing may not be normal, and it is often followed by a period of sleep or disorientation. The diagnosis of a seizure is made with a physical examination and diagnostic tests. Diagnostic tests may include: blood tests, an electroencephalogram (EEG); which is a procedure that records the brain’s continuous, electrical activity by means of electrodes attached to the scalp, an MRI, a CT or CAT scan, or a lumbar puncture; which is a special needle that is placed into the lower back around the spinal cord. The pressure in the spinal canal and brain can then be measured and a small amount of cerebral spinal fluid can be removed and sent for testing to determine if there is an infection or other problems.
NEW TOOLS TO MAP SEIZURES: Tools developed by Johns Hopkins University researchers could help patients avoid risky and often-ineffective surgeries as well as prolonged hospital stays. Using equations based on machine learning and calculus to reveal patterns in brain activity, the models identify where seizures begin in the brain. All of this happens in just minutes. Patients typically spend five to 14 days in the hospital with electrodes stuck to their heads, while doctors hope they will have a seizure so that surgeons can map the brain, pinpoint the trouble spot, and plan how to remove it. “If you find that zone and you effectively treat it, it’s a game changer and a life-changing treatment for these patients,” Joon-Yi Kang, a neurologist at Johns Hopkins Hospital, said. In 65 patients studied, the model predicted the onset of seizures and the ultimate success of a surgery with 79 percent accuracy.
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