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'It was like my child disappeared': Tick bite triggers rare condition in 7-year-old girl

The neuropsychiatric illness, known as PANS, is linked to bacteria transmitted by deer ticks.

LIMINGTON, Maine — It's Tick Week at NEWS CENTER Maine, and our goal is to give you all the latest data and science to better protect you, your kids, and your pets against tickborne illnesses.

Our first two stories that aired on Monday and Tuesday focused on vaccines and preventative shots being developed for Lyme disease. Now, we're focusing on a newly discovered bacteria spread by deer ticks and what's being done about it.

The bacteria is called Borrelia miyamotoi. According to the CDC, it can cause relapsing fevers. It is related to Borrelia burgdorferi, the pathogen that causes Lyme disease, which is also transmitted by deer ticks.

Researchers say so far only a small percentage of deer ticks in Maine are carrying the pathogen. But a Limington mother blames the bacteria for a rare disorder that attacks the brain in her 7-year-old daughter.

Watching 7-year-old Gracie Jackson run around in the sunshine with her mom Rebecca, it's hard to believe that just seven months ago she was a different child.

"It was like someone took my child and replaced her," Rebecca explained.

Rebecca says one morning in December her daughter started experiencing facial tics, severe OCD, and bouts of rage.

"She was so angry, her eyes look different, and she had dark circles," Rebecca explained. 

As time went on, Gracie started regressing in school and was severely depressed.

"That's when she said 'Mommy, there is a monster in my head, please get me help,'" Rebecca said, holding back tears.

Rebecca took her daughter to a specialist who diagnosed Gracie with Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS. The condition affects about one in 200 children and causes inflammation in the brain. 

Gracie was diagnosed with PANS after blood tests revealed the type of bacteria found in deer ticks that causes it. 

The CDC says Borrelia miyamotoi is linked to Borrelia miyamotoi diseases, which cause relapsing fevers and are related to the bacteria that causes Lyme disease. Studies have also linked the bacteria to PANS and other mental health conditions, including depression.

That bacteria is now on the radar of researchers at the University of Maine Cooperative Extension Tick Lab.

"We have started testing for Borrelia miyamotoi, which is another pathogen that can be transmitted by the deer tick in Maine," Griffin Dill, the manager of the UMaine Extension Tick Lab in Orono, said. 

Dill says the number of deer ticks carrying the bacteria is extremely small, with an infection rate of less than five percent compared to ticks carrying the pathogen that causes Lyme disease, which is currently around 50 percent.

Like many patients with tickborne illnesses, Rebecca never found an embedded tick on Gracie. She also found no signs of a bullseye rash, aches, fever, or joint pain, which may appear after an initial tick bite. Some patients, however, don't show any signs or symptoms.

Dr. Rebecca Morrell, a naturopathic doctor at the Integrative Health Center of Maine, diagnoses and treats tickborne illnesses. 

She says if you do spot an embedded tick, do the following:

"Getting it off as soon as possible means less time for transmission, in terms of starting treatment within 72 hours," Morrell said.

Depending on the symptoms, Morrell recommends a course of antibiotics. Patients usually have better outcomes if Lyme and other tickborne infections are treated early. Fortunately for Gracie, nearly 80 percent of her symptoms improved after antibiotic treatment.

"It was like my child was back, she still had some OCD, and the rage was gone," Rebecca said.

Since NEWS CENTER Maine talked with Rebecca in late spring, her little girl has since been diagnosed with Lyme and Bartonella, a tick co-infection. 

Gracie recently started having seizures, and doctors are trying to determine if any of these infections, including PANS, are to blame.

For more information about treatment for Lyme disease and other tickborne infections, click here.

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