N.S. mother says health-care system won’t treat her daughter's Lyme disease
N.S. mother says health-care system won’t treat her daughter's Lyme disease
Raelynn Robar says she has good and bad days after being diagnosed with Lyme disease in October of last year. Today, the four-year-old says she’s feeling alright and not dealing with any major symptoms.
"Mostly it’s joint pain,” said Christina Robar, Raelynn’s mother. “She does get headaches and pain through her sinuses and every once in a while she'll have an upset stomach."
Christina believes her daughter was bitten by a black-legged tick in July last summer. Although they never found the tick, her daughter did develop a rash and eventually the symptoms became more apparent.
Doctors treated Raelynn with four weeks’ worth of antibiotics, which is the standard course of treatment for Lyme disease.
However, since then, the symptoms have persisted and the family has been struggling to find other medical support to help manage her symptoms.
"We've went back to the doctor and there's apparently nothing they can do for her at this point,” said Christina. “And we just have to hope it gets better over time. They said it could take a couple years, which is not what you want to hear for your four-year-old."
Donna Lugar was diagnosed with Lyme disease in 2011. She's been an advocate for those infected ever since and founded an online support group.
Lugar says she understands the Robar's feelings of being left in the dark.
"They just send you home, still with symptoms and there's no follow-up as to what you can do to help mitigate the symptoms,” said Lugar.
Acadia University chemistry professor, Dr. Nicoletta Faraone, says the key to limiting Lyme disease is prevention.
“We can easily live with them around if we know they are around and taking the proper prevention measures,” she said.
Faraone’s lab uses nanotechnology to create more effective repellants and has products in development with Atlantick - a local company started by the mother of two children affected by Lyme disease.
The Robar’s live on Nova Scotia's south shore -- a hotspot for black-legged ticks, which carry the disease. Christina said she picked another tick off her daughter just last week.
In the meantime, she says she's not willing to sit at home and wait. Currently, she's working on getting her daughter into the IWK hospital in Halifax to see an infectious disease specialist.
“I am basically having to go at this alone without any referrals from doctors,” said Christina.
She’s been keeping a log book of Raelynn’s days – tracking what she eats, drinks and does each day —hoping to find any type of trigger of symptoms and avoid it.
Christina admits if it was her with the disease, she would have already given up the fight.
"I’m fighting as much as I possibly can to get her the help she needs," she said.
Lugar says she understand the frustration and adds many give up, exhausted by trying to seek help in the health system. She says many end up looking elsewhere for alternative treatments.
“But once your child’s involved, you are going to fight tooth and nail to make sure that that child is not dealing with something for the rest of her life,” said Lugar.
Christina says they'll continue to seek answers.
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