FIGHT FOR A CURE FRIDAY: Featured Warrior: Elaina w/ Elizabeth and Ron Jackson by Cristina Marie
It is estimated that only one in 15 to 20 thousand patients are diagnosed in the world each year with Trigeminal Neuralgia or other facial pain disorders. In a condition that is so rare, with very few answers or options for treatment, it is even more rare that a child will suffer from this debilitating illness let alone be diagnosed and treated.
Meet 10 year old Elaina from the state of Ohio. She is one of approximately 50 known pediatric patients in the world suffering from Trigeminal Neuralgia.
This makes proper and effective treatments even more difficult to find. Elaina lives with her parents, Elizabeth and Ron as well as her two older siblings, Ronnie (15) and Isabella (17). Elaina is the youngest and she loves it! The family also has 3 dogs; Joss, Larry and Lily. Recently they also acquired a hamster. Elaina's mom, Elizabeth says, "The Chihuahua, Lily will not let anyone touch Elaina when she is sleeping. She used to wake up screaming. Every time she was awakened, she was immediately in pain. Now if you try to wake her up, Lily will try to bite you."
Elaina was only 8 years old when her pain started. It was right before her 9th birthday. It took approximately 3 months to secure an official diagnosis of TN1 and ATN (Atypical Trigeminal Neuralgia). She was seen by her Pediatrician multiple times, two Pediatric Dentists, and a Jaw Specialist. It was the Orthodontist that referred Elaina to a Pediatric Neurologist. The way Elaina's story begins is part of a larger problem that still needs to be addressed. Action needs to be taken for education in reference to Trigeminal Neuralgia as a whole but even more so when it comes to Pediatric Neuralgia Disorders.
Trigeminal Neuralgia is an adult disease but it is affecting children too. It continues to be an unfortunate issue that desperately needs more awareness and visibility; especially when it comes to educating the physicians who are caring for these young patients. Elaina has recently begun to suffer symptoms of Geniculate Neuralgia as well. however, an official diagnosis of GN has not yet been given.
Initially, it was thought that a bug bite to the face caused Elaina's facial pain. The bite itself stayed for 5 months and left a scar. At the time, she was treated for Lyme's Disease. This was done after her initial visit to the Pediatric Neurologist. He had called Elaina's parents at home during this time and ordered an MRI. He told them that kids just don't get Trigeminal Neuralgia. He said that he thought Elaina might have a tumor. She did not. Kids get TN too! She now sees an adult Neurologist. She has no other medical diagnosis' but like adult TN patients, it is difficult to get anywhere. She gets odd rashes, pain in her arms and legs and odd incidents of Petechiae (red and purple spots on the skin caused by a minor bleed from broken capillary blood vessels). Elaina suffers from headaches multiple times a week. Recently, Elaina had to wear a heart monitor for 2 weeks as she has been having episodes of Tachycardia (a faster than normal resting heart rate). She has also passed out at school. "I truly believe in my heart that we will eventually learn that Trigeminal Neuralgia plays a part in a much larger puzzle made of Autoimmune issues", says Elizabeth.
In the past, Elaina has been on Tegretol, Dilantin, Amitriptyline, Baclofen, Neurontin, Lyrica and Indomethacin. She is currently on Topamax twice daily for headaches. Mom said that it also seems to have calmed down her residual healing pain since Elaina's MVD (Microvascular Decompression) surgery. Prior to Elaina's MVD last April, she was only receiving a small amount of relief from Tegretol. The shocks still remained up to 40 times a day. "Better than 20 times an hour!" stated Elizabeth. She was very receptive to Dilantin but became allergic. Elaina has also had 2 Ketamine Infusions, 1 Ganglion Block, a Steroid injection in the back of her neck and most recently the MVD surgery.
First came the Ketamine Infusion. This was Elaina's initial hospital stay. She was the first pediatric patient ever to receive one at Rainbows Babies and Children's Hospital in Northern Ohio. The procedure was done in ICU (Intensive Care Unit) over a period of 8-10 hours. Elaina has developed such a high tolerance to everything and she stayed awake throughout the entire procedure. She continued to have shocks which no one could believe! Her pain following the infusion went from a 9/10 to a 6/10 but only lasted for 24 hours. The pain then went back up. "Next, she had the Ganglion Block. It was horrible", her mom said. "We were caught between two worlds. A pediatric patient with an adult illness. This is a terrible combination", says Elizabeth. The pain doctor that Elaina was referred to from her Pediatric Neurologist believed that she had Complex Regional Pain Syndrome (an uncommon form of chronic pain that usually affects the arms or legs. It typically develops after an injury, surgery, stroke or heart attack). the pain doctor fought with the Pediatric Neurologist over the diagnosis. Elizabeth says, "These doctors would fight right in front of Elaina at the foot of her bed about which treatment would be best!" They went ahead with the Ganglion block based on the recommendations and promises of relief from the pain doctor. Unfortunately the Ganglion Block set off Elaina's ATN (Atypical Trigeminal Neuralgia).
Unfortunately the ATN never stopped. She was at a 9/10 on the pain scale constantly! She had shocks on top of that. Due to the situation that occurred with the Ganglion Block, Elaina was left in worse pain, disappointed and apprehensive to trust. "After that, her mother says, "life got very small." Leaving the house was fear inducing. Every bump, every brush of the seat belt, anything made it terrible. She was living in constant pain and basically became home bound. Elaina could not tolerate anything touching her face. The wind, water, her own tears set off pain attacks. Elizabeth says that the worst thing she ever did to Elaina was give her a shower.
"Imagine knowing that you are about to do something to your child that is going to cause your child indescribable pain! That's what giving her a shower felt like. I was hurting my baby. After her shower, her father would hold her and I would go sit in a corner and cry. I have no real words to describe the feeling. I don't think I ever will", says her mom. After all medications failed Elaina, her parents took her to see Dr. Mark Linskey in California. He is the surgeon who performed her MVD. Dr. Linskey became their saving grace. Elaina calls him a real life superhero and she even made a cape for him. Elizabeth says, "When he tells us that he will never give up on our daughter, we believe him!" While MVD does come with it's own set of issues, Elaina's quality of life has greatly increased. Her pain level has improved around 90%.
Trigeminal Neuralgia has changed everything for Elaina and her family. "She learned to tie her Karate belt before she learned to tie her shoes", mom says. "She loves basketball. She played. Her dad coached", Elizabeth shared. At this time neither one of those activities are options for her post MVD surgery. Elaina has not been in a full day of school since September of 2014. She used to love going to Cedar Point and riding the roller coasters; something else she can no longer do. In many ways, Elaina's life has become small. She has lost friends at school and has missed out on so much because of her pain. "Oh but what she has gained!" says mom, "She is the true definition of a warrior. She loves fiercely. She takes nothing for granted because she is innately aware of how quickly things can change. She knows at a young age who she can depend on. The friends she has now are those who stayed by her side and always will. Her very best friend has spent countless days just being there with her because she hurt too much to play outside. Elaina is so strong. She pushes through pain that most people could never handle. She will do something today that she knows she will most likely pay for tomorrow."
Elaina has home tutoring everyday. She will continue schooling throughout the Summer so she can hopefully start school with her class again in the Fall. She is a hard worker and hopes to either become a Neonatologist or a Police Officer. Elizabeth says that if Elaina sees someone in pain, she has a great deal of empathy for them as she knows what true pain is. Mom also says that10 year old Elaina prays for everyone! "Sometimes her prayers last forever!" Elizabeth giggles. She says, "It has surprised me who stayed and braved TN with us and the ones who bailed out quietly. Trigeminal Neuralgia has forced me to research, how to advocate for my child and how to be a better mother, friend and nurse. It has shown me how to be a voice for the Voiceless. It never has to be said that her father, Ron and I will never stop trying. We will fight for more research and awareness. We will push Elaina and support her always in whatever way she may need us to."
Trigeminal Neuralgia has changed Elaina's siblings too. They have held her hand, stayed up all night as a family and protected their younger sister. They have taken off school so she could have them with her during her sedated MRI. The family had Easter in the ICU and the kids never once complained. Every car ride was torture. Elaina would cry in so much pain every morning as mom drove the kids to school. Everyone knew it would be the same as the day before. They braved it together. Elizabeth says, "TN has brought our family closer together. I myself gave up teaching Karate because I felt guilty being able to do something my daughter loved but could no longer be a part of."
Elaina is a positive child. It's just in her nature. She does get mad sometimes and yells at her TN but because it is her nemesis, she is permitted to do so. She worries about others and rarely focuses on herself. She has since learned Archery because it is something that she can do. She went to volleyball camp last week. Her parents try to point out the positives. School is very hard on Elaina and she is hard on herself. "Often times", Elizabeth says, " We have to remind her of how far she has come." Elaina is now able to enjoy playing in the water again. Something that TN stole from her but post MVD she is able to once again participate.
"Our advice to other parents of pediatric TN patients is to find an adult Neurologist who is willing to treat a pediatric patient. This is so important. It is something that would have saved us and Elaina a lot of pain and heartache. Do not be afraid to say no or advocate for your child. We guarantee that no one else will. Ask 100 questions and then ask 100 more! Find other pediatric patients. Submerge yourself in research." Elizabeth also says, "We want a cure. We need a cohesive way to track TN patients, signs, symptoms and diagnosis collectively as opposed to sending patients to various specialists. It is like no one is seeing the big picture just parts." Elaina's parents encourage us all to spread the word and to listen. "Do not dismiss the pain just because it is hidden well" , she says, "Awareness is needed. No parent should have to fly across the country to receive proper medical treatment for their child. Doctors need to step up and receive more training."
Life after MVD is good for Elaina. Her parents are unsure if they would call it a remission but say that they will take where Elaina is now and be happy and grateful. Elaina has friends from online TN support groups. Mom says, "They are great for her and she loves them like family. They give her something that we can't, someone who knows." When Elaina feels afraid, she is impossible to sedate. When she feels like she is "done", the family gathers around her and they sing, Me and you and you and me. no mater how they toss the dice it had to be. The only one for me is you and you for me is you and me so happy together..."
Thank you Elizabeth and Ron for sharing your daughter's journey with us as we continue to Fight For A Cure. If you would like to learn more about Trigeminal Neuralgia and other facial pain disorders, please visit The Facial Pain research Foundation on Facebook or at www.facingfacialpain.org Pediatric patients and their families can also recieve support through The Trigeminal Neuralgia Association's Young Patients Committee at fpa-support.org *graphic recognition goes to Rebecca D Thorpe
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