Erica Barker actually looks comfortable sitting in her doctors office in the Childrens Clinic building. Not surprising, since Erica, 11, has spent more time there than most kids her age.
When she was 5, Erica had a seizure that lasted several hours. Thats when her parents, Christine Huber and Tom Barker, found out their daughter has epilepsy.
But that first time she had a seizure, we thought she was dying, said Huber, a counselor for emotionally disturbed youth.
The problem wasnt the frequency of Ericas seizures, which started occurring about once every month. The trouble was that the seizures wouldnt stop, forcing her into the hospital each time.
Several combinations and levels of medications were prescribed for Erica. Although most people with epilepsy obtain some seizure control with Food and Drug Administration-approved drugs, 25 percent still have seizures. Erica also found it difficult to deal with the side effects such as drowsiness, confusion, hair loss and rash.
Brain surgery, almost always a last resort for those epileptics who dont do well on medication, was performed on Erica in 1997. The surgery also was unsuccessful.
We were devastated about that because we had been so hopeful, Huber said. But she literally had a seizure when we were leaving the hospital after the surgery.
Seizures get worseAs the family moved from Kalispell to Billings the following year, Erica entered the second grade, and her seizures became progressively worse at school.
The situation also was stressful at home. Huber even stopped working so she would be available whenever her daughter became ill.
At this point, Ericas seizures would stop, but she was having them more often, said Barker, an insurance-claims adjuster.
Just as Erica and her parents thought theyd exhausted all avenues of treatment, they met Dr. Annette Grefe, the pediatric neurologist who introduced them to something extraordinary.
A new therapyThat something is Vagus Nerve Stimulation, an FDA-approved therapy that can help reduce seizures. Grefe has had additional training to learn about Vagus Nerve Stimulation and which patients should use it.
Grefe explained that the vagus nerve is the longest cranial nerve it averages 22 inches in adults extending down from the brain. One comes around the left side of the neck; the other around the right.
While they are major communications channels from the brain stem to organs in the throat, chest and abdomen, if the two nerves become out of sync, a seizure will occur.
Researchers found out about some of this when doing tests on brainwaves back in the 50s and 60s, Grefe said. Nobody knows exactly how this works, but, when stimulated, the vagus nerves will become synchronized again which helps regulate seizures.
Grefe though Erica might be a perfect candidate for the therapy. But the doctor had some trouble convincing her patient of that at first.
Erica just wasnt interested, and we were really skeptical, too, Huber said. So we tried more medications, but, by then, she was really starting to struggle in school.
Whenever she had a seizure, she would just be wiped out for the day, Barker added.
A life-changing surgeryIn late 1999, Erica finally agreed to the simple surgery, which would implant a small generator device similar to a heart pacemaker in her chest. A 5-centimeter incision is also made on the side of the neck for the lead, which is attached to both the device and the left vagus nerve.
You really have to look at the whole picture when you do this, Grefe said. I may see a mentally retarded child who had two to three seizures a day and can live with that and still function. But for someone like Erica, whos very smart and very functional, even a minor seizure can be disrupting.
Ericas surgery, which can now be done as an outpatient procedure, was performed by Dr. John Oakley, a neurosurgeon with Yellowstone Neurosurgical Associates.
The generator device in Ericas chest houses a computer chip programmed to send electronic pulses up the lead to stimulate the vagus nerve. That stimulation is delivered in continuous on/off cycles regardless of her seizures.
Grefe can monitor all this activity from her computer screen and now has the pulses set to go off every 1.8 minutes.
But the greatest gift to Erica is having the ability to stop her own seizures when she feels one coming on. Now, when she sees that familiar pink spot form in the corner of her eye or if her back gets numb, Erica swipes the magnet she now wears without fail around her wrist across the implanted chest piece.
Combating seizuresThe magnet triggers an extra pulse, which can lessen the severity of an oncoming seizure. For Erica, the seizures are usually terminated completely, something both she and her parents noticed right away.
I just kept saying this is magical, Huber said. Ive carried a cell phone for so long, and now I can just leave it.
Barker has seen an 80 to 90 percent improvement in his daughters seizures. He added that the $20,000 cost for the Vagus Nerve Stimulator much of which was covered by health insurance was still an improvement over costs for Ericas brain surgery.
For Erica, the successful treatment has meant better concentration, better grades and her freedom. Now she can walk to school on her own or ride her bike to her fathers house without worry of an oncoming seizure.
Weve never held Erica back, but before, one of us was always with her, Barker said. She has much more control of what she does now.
Erica has a renewed urge to play basketball, swim and take violin lessons. She is still required to take some medications along with the vagus nerve therapy, but Grefe said Erica has healed remarkably from the surgery. And the side effects have been few: a faint itching in the neck area and a scratchy voice now and then.
More than 5,000 patients across the United States have had Vagus Nerve Stimulation. But not all of them have had Ericas level of success. Grefe told of a handful of local patients, none of whom are seizure-free, who have either had marginal or some improvement from the therapy.
But, for those who have success, the turnaround is life-changing.
This has changed ours and Ericas life completely, Barker said. We just thought it was too good to be true.