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02/26/2020 11:00 PMIn the span of a few short weeks, 11-year-old Meghan Keeney has replaced days filled with middle school, competitive dance and youth cheerleading with fighting for relief from a syndrome that causes unrelenting pain and can lead to devastating complications. The Branford sixth-grader was recently diagnosed with Complex Regional Pain Syndrome (CRPS).
Now, friends and community members are rallying to assist Meghan and her family as they work to get her fast-tracked to receive therapies and treatments for CRPS, which in some cases can be mitigated or go away and in other cases can linger for months or years.
As in Meghan's case, CRPS can be caused by an injury and cause a pain out of proportion to the severity of the injury. Meghan's CRPS hit when she rolled her ankle while playing tag with friends during recess at Walsh Intermediate School (WIS), said her mom, Anna Keeney.
"Basically, there was no actual injury to the foot," said Keeney. "What happens is the sympathetic nervous system just freaks out and over-reacts to an injury. So instead of getting to that point in your body where it says, 'Okay, the trauma's over,' [your] brain is telling you you're in pain. It's just constant pain."
The extreme pain that began in Meghan's right foot, which is is also impacting circulation and muscle strength in the limb, has since spread to a point just above her right knee, said her mom. The loss of movement and constant pain is compounded by the fact that Meghan, since the age of one, has trained in dance with Dance Unlimited of Branford, where she is a currently a member of its competitive dance team.
"The longer her foot goes without movement, the harder it's going to be to get her back," said Keeney.
Meghan also loves being a part of Branford Youth Cheerleading, and misses being with her friends at WIS, said her mom.
"She's watching her life go on without her. Her friends are there for her, but it's hard," said Keeney.
Meghan was diagnosed with CRPS at what is considered an early early point, about four weeks following injury. Keeney thanks the professionals and related specialists working with Connecticut Orthopaedics in Branford, and especially CT Ortho medical doctors David S. Caminear, DPM and John Marino, MD, for determining the cause of Meghan's pain. Now, the hurdle is finding a treatment or other type of intervention that can help, while also dealing with the daily chronic pain and related issues that continue to impact Meghan. While insurance may cover some costs, undergoing medical therapy programs would also mean an extended leave of work for Keeney, who is currently using Family Medical Leave Act (FMLA) time to be at Meghan's side.
On Feb. 27, they traveled to Hartford Hospital to asses the possibility of using a type of non-invasive therapy that "scrambles" the transmission of pain to bring relief; but it was ruled out for Meghan, said Keeney. The therapy, which is not covered by insurance, costs about $1,000 per session and would have required several sessions.
Even traveling to appointments has been a painful experience for Meghan, said her mom.
"Even the slightest vibration hurts," said Keeney.
Right now, the best hope is that Meghan will be accepted into a seven-week pain therapy and treatment program at Boston Children's Hospital (MA). In preparation for a March intake meeting to determine Meghan's ability to participate, she will begin acquatic therapy with Gaylord Hospital on Feb. 28; while other needed therapy protocols to help prepare Meghan for acceptance to the Boston program are already underway, said Keeney.
Keeney says she wished she knew some of the things she's learned from poring over information about CRPS. One intervention that she is sharing with other dance-and-cheer parents is that taking a high dose of vitamin C immediately following an injury has been shown to lower the risk of CRPS (the Mayo Clinic, for one, recommends this as a preventative step following a wrist fracture, see more at https://www.mayoclinic.org/). The determined mom has also been researching the work of a practitioner in California who has had success with helping children with CRPS through a five-week intensive movement therapy program; and may consider that option for her daughter, if needed.
"She has helped children who weren't able to walk, to walk again. And that's where we are right now. My daughter cannot walk," said Keeney.
There's also the very real possibility the syndrome may need to be addressed with other, "more invasive" medical protocols, Keeney said.
On Feb. 20, in an effort to help the family, Patricia Robinson established a GoFundMe page, "Beating CRPS for Meghan in Branford, CT" (here) with the goal of raising $25,000 to assist with costs related to Meghan's diagnosis and treatment. As of Feb. 27, about half the goal was already raised. Robinson, co-owner of Total Learning Group of Branford, said the Keeney family had come to her for home-schooling advice due to Meghan's diagnosis.
As a mom herself, Robinson said she wanted to do something to help. She said the fast community response to the GoFundMe page has been amazing.
"I'm very thankful to everyone who's given. I think the response, and the remarks people are making, are so supportive," said Robinson.
Robinson is also working with a Dance Unlimited mom to set up a T-shirt fundraiser; plans for that effort will be posted at @Totallearning on Facebook. In addition, she reached out to a professional peer, Tisko Elementary School principal Jim O'Connor, and now a fundraising effort is in the works among the Tisko community, said Robinson. Additionally, a "meal train" started by Branford families for the Keeneys has also been organized, Robinson noted.
Anna Keeney said the community support is greatly appreciated during what is an overwhelming time for Meghan and her family (which also includes her dad, Sean, and brother, Ryan, 7).
"He's scared for his sister," says Keenan of her youngest child. "He came to one of the doctor's appointments with us, and he wrote his own set of questions. He was asking, 'Can you help my sister?'"