Suffolk family raises awareness after daughter’s tick paralysis

While a fairly rare condition, tick paralysis can be devastating if not treated properly and effectively.

Caused by the bite of a tick, this disease can cause numbness and weakness all over the body and can lead to death if unattended. Suffolk resident Brian Carr is sharing his story on how his daughter Ruby suffered from the disease in hopes of helping families not go through what they did. Carr says that in the first week of July, he noticed Ruby not wanting to get up to walk and play.

“It was Monday we started noticing it and Tuesday, and I went to work Wednesday morning when my wife called me and said that she just was not good at all. I left work, [came] home, and then she couldn’t even pick her head up. I was like, ‘Okay, we got a big problem,’” Carr said.

After calling the ambulance, Carr says that Suffolk Fire and Rescue decided to go straight to Children’s Hospital of the King’s Daughters in Norfolk to care for Ruby.

“And thank goodness they did because by the time she got to the hospital, that was really [getting] to her good,” Carr said. “So for all the things that I had in my head that it could’ve been, a tick wasn’t one of them, you know what I am saying?”

Carr says that once they got to the hospital, it was thought that Ruby was suffering from a neurological issue. After a CT scan couldn’t find anything, Carr’s father noted that he found “a couple ticks” on her.

“And then the doctor sitting in there said, ‘That’s very interesting’ and then they checked her really well and found the one right where her ponytail would be. Thickest part of her hair. And it was only about the size, I guess, of a pea. It was not big…,” he said. “And as soon as they found it, they went to get their stuff to remove the tick. When they got back within five minutes or so, they took another 10 minutes to find it again. That’s how hard it was to find it.”

Carr says that after 30 minutes of pulling the tick, his daughter could move her head, talk and do much more than when she first arrived. To educate others, Children’s Hospital of the King’s Daughters Child Neurologist Ralph Northam, Sentara Obici Hospital Infectious Diseases Specialist Yoseph Birku and Bon Secour Harbour View Medical Center Chair of Emergency Medicine Daniel Salomonsky, DO FACEP, each shared their knowledge of the disease. Northam provided more details on tick paralysis.

“It is a disorder that’s caused by a neurotoxin that’s carried in the saliva of a gravid, obviously female, tick…a tick carrying eggs. And we usually see it toward the beginning of the summer: May, June, July timeframe,” Northam said.

For CHKD , Northam says they mostly see two types of ticks in the Hampton Roads area.

“The cases I’ve seen have all been from what’s called the American Dog tick which is, if you’ve ever had a pet, you’ll sometimes see them. They’re a little bit larger than what’s called a Deer tick that causes Lyme disease more frequently. So it’s a totally different disease from Lyme, but it’s caused by the American Dog tick. The other tick in Virginia is the Rocky Mountain wood tick that has caused tick paralysis, but mainly in Hampton Roads we see the American Dog tick.”

In his work with children, Northam says ticks prefer a “moist, warm area of the body.”

“So they will often travel to the scalp, [which] is a popular place, the nape of the neck, they can go in the ears. Sometimes they can go in the belly button and then, obviously in private parts. And so the tick will latch on and then, usually over a few days, will become engorged,” Northam said. “And after usually a couple of days of being latched on and feeding off of the child, the human, they will start becoming weak. And it’s what we call an ascending weakness.”

Birku discussed ascending weakness, also called ascending paralysis, which can affect major respiratory muscles such as the diaphragm and cause breathing issues.

“So it [progresses] upwards involving various muscles, including nerves in the head and people may get certain cranial nerve pulses, which means nerves which emerge from the central nervous system can be paralyzed,” Birku said. “So it trains from a simple weakness of extremities, numbness or weakness all the way to failure of breathing, unless it is supported by artificial breathing, there is a chance of 10 to 12 percent of patients may die if misdiagnosed.”

Northam discussed another condition that resembles tick paralysis, called Guillain-Barre syndrome.

“Guillain-Barre is usually perceived by a viral illness that either infects the gastrointestinal system or the respiratory system, so they’ll have cold-like symptoms or diarrhea, gastroenteritis, that type of thing, where as the patients of tick paralysis are usually not preceded by that. But the two can look very similar,” Northam said.

Northam says that a “very careful” exam needs to be done while considering the possibility of tick paralysis, using factors such as time of year and the individual’s location, noting rural Virginia. He also discussed the proper treatment.

“They do a very thorough physical examination, looking specifically for an engorged tick and then, if the tick is found, the treatment for tick paralysis is removal of the tick,” Northam said. “Once the tick is removed, almost within the first hour or two, you’ll start seeing [an] improvement. And then over 24 hours to 48 hours, usually the child will return to their baseline. So, it’s a very dangerous condition and that it needs to be recognized. The treatment is not medicine, it is removal of the tick.”

Northam detailed that tick paralysis can also occur in domestic animals, including dogs, cats, sheep, goats, and horses. Salomonsky says those bitten should get checked for tick remnants and get prophylaxis for Lyme disease if bitten by an engorged tick for over two to three days. Being aware of ticks, he notes seeing cases in the ER of people going outside in grassy and wooded areas following warm weather.

“With our season [summer], folks are out in the woods all the way through the late fall where it’s still quite warm,” Salomonsky said. “We’ll see patients come in with ticks that they can’t remove, have a hard time removing or are concerned about the exposure.”

Birku emphasized searching the body for ticks after going to wooded areas, especially young children more prone to the disease.

“This disease is very common in kids, so kids have to be searched when they come from an area where they could be exposed. At the end of the day, if you search from the scalp all the way, searching and making sure the tick is found and removed is the key,” Birku said. “And the other thing is, of course, having long sleeves, pants and shirts is advisable when you go to a wooded area where potentially you may be exposed to [a] tick and, of course, thirdly, using insect repellents to avoid the tick bite altogether.”

Carr says that Ruby has made a “full recovery,” saying that since the event happened two weeks ago, she acts like “nothing happened.” Despite this, Carr emphasized that doctors wouldn’t have looked for one if his father hadn’t spoken out about a tick.

“They were about to start doing spinal taps and other procedures [to] try to figure out what was going on,” he said. “Yeah, the tick was a problem and we know that, and thankfully that’s all it was… But if somebody else doesn’t speak up, their kid can go through a, I would say, pretty traumatic experience with spinal taps and that can physically mess you up a lot longer than a tick bite.”

Likewise, Carr gave a message to his parents about his experience.

“If your kid starts not wanting to get up and play and walks real funny, but tells you everything’s fine, check them for ticks real good or go ahead and take them to the doctor instead of thinking ‘No, she’s being dramatic like normal,’” he said.

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