Fighting for recognition, they will never give up
Elisabeth and Tony realized the extent of daughter Savannah’s suffering in phases. When she was first in pain, they noticed she was irritable and unfocused. Things she normally enjoyed became difficult and her recovery time from exercise slowed.
Over time, her symptoms worsened: she screamed, convulsed, passed out or experienced tachycardia when in pain. Her hands and feet would swell without warning, turning red, purple or white during a high-pain episode.
Both Elisabeth and Tony have backgrounds in science and are well versed in research. They became proactive about learning more: They took Savannah to urgent care, following up with her primary care physician. They visited multiple neurologists to run numerous tests.
Test after test, but no answers
Twenty specialists later, the family had no answers. Shockingly, Elisabeth and Tony had trouble finding physicians who would take Savannah’s ailments seriously.
“It is really tough hearing from esteemed and presumably knowledgeable medical personnel that your kid is ‘totally fine’ and that the problem is ‘a mental disorder,’” says Elisabeth. “To be told ‘You don’t really know your kid’ is hard.”
After multiple professionals suggested Savannah suffered from psychiatric illness and possible conversion disorder, Elisabeth and Tony sought psychiatric care. They started doubting themselves as parents and caregivers, becoming more concerned for their daughter’s wellbeing. Savannah was in daily head and neck pain, fainting and falling multiple times a day, and needed a wheelchair.
“We wanted to address the psychiatric diagnosis head on, so we found an excellent psychiatrist,” says Elisabeth, “She let us know Savannah was physically ill and that a psychiatric evaluation showed no signs of mental illness.” While it was reassuring to know Savannah was not mentally ill, it was horrible to not have answers to the physical problems.
It became increasingly stressful for Savannah to go to school, and Elisabeth and Tony had trouble juggling work and the almost daily health-related emergencies.
“Sudden illness of a family member—especially a child who goes from fiercely independent to completely dependent—really drains your energy and robs you of your sanity,” says Tony. “You are scared all the time that you may do something to make things worse or make some mistake in judgment that might really damage your child. When you have to ask yourself at least once a week if you should take your kid to the ER, it can make you a very stressed person.”
While her parents were facing the loss of a happy and energetic child, Savannah was losing her innocence and joy to an endless cycle of pain and self-doubt.
“She lost her dreams, ambitions and laser focus. At times, especially when her peers and the medical community doubted the validity of her pain, she became a very fragile and broken person,” says Elisabeth.
Feeling the lack of support
For Tony and Elisabeth, the hardest part of Savannah’s illness is not being able to ease her suffering.
“Nothing is worse than when your child literally begs you for help and there is nothing you can do,” says Tony. Adding to the frustration: lack of kindness and understanding from numerous healthcare professionals. Out of 100 doctors so far, they can count on one hand the number they trust to care for Savannah.
As is the case for most families in similar situations, some family and friends have disappeared. But Savannah’s grandparents and godparents are amazing, putting their own lives on hold to help out. And some strangers have entered their lives with kindness, warmth and generosity. This outpouring of support and love has helped Elisabeth and Tony face an uncertain journey.
While both wish they never had to walk this road, Elisabeth and Tony now value each other more as partners. “Aspects of our lives that used to be difficult seem trivial now,” says Elisabeth. “The past few years have given us have new respect for each other. We both are insanely grateful for our family, and very protective of our younger son. We try to make sure his needs are not lost while we care for Savannah.”
Some practical advice
Despite years of practice with coping, some days are still tough for her parents. “It should get easier with time, but sometimes when we have a setback, I start to lose hope that things are ever going to be OK,” says Elisabeth.
Parents of chronically ill kids tend to put their own lives on hold, living in crisis mode. “I know I don’t make myself a priority. For good or bad, you give up a lot of things due to time constraints, lack of energy and feelings of guilt,” she says.
Elisabeth and Tony recommend other parents try these strategies:
Be patient with yourself and others. You are going to feel grief, and that’s OK. When a loved one is ill, it affects everyone’s outlook and attitude. Staying calm and patient can be challenging, so it’s helpful to have coping strategies in place ahead of time.
Trust your gut. If something feels wrong, raise concerns. If your concerns are brushed aside or downplayed, request the doctor note your concern in your child’s chart. Documentation is important.
Be organized. Document medications, take notes, and keep copies of forms from every hospital visit and appointment. Carry a folder that includes doctors’ phone numbers and notes about various diagnoses. At all times, Elisabeth and Tony carry a copy of Savannah’s complete records, including updated medication reactions and allergies.
Understand medications. Pay close attention to medication (and treatment) reactions and their timeframes. Ask about possible side effects for new medications. Mention previous medication-related side effects before the doctor leaves the room. Try not to start a new medication at the end of the day if your child is in-patient; if they have a reaction, there are often very few doctors around to deal with (potentially life-threatening) issues overnight.
Daily setbacks and minor triumphs are part of the journey. “We try to take things one day at a time,” says Elisabeth. “When things are really bad: minute by minute. I realize I have very little control. Thankfully, my strong faith provides me with hope for now as well as the future.”
Throughout this process, Elisabeth and Tony have stressed that the illness is not Savannah’s fault. They want her to know they believe in her, and will never abandon hope of making their daughter’s life better. Elisabeth and Tony love Savannah—sick or well—with their whole hearts and are inspired by her brave, courageous spirit.
“We frequently remind Savannah that her illness is not her fault. She is so much more than a sick person; she has so much more to give the world. With her strength and determination, we have faith she will be able to come out of this whole and have an amazing life again.”
Dysautonomia International – dysautonomiainternational.org
Dysautonomia Center for Excellence – dysautonomiaresearch.org/dysautonomia-center.html
Overcoming Movement Disorder – overcomingmovementdisorder.com
Wisconsin Chiari Center – wichiaricenter.org/Chiari_Malformation
International Foundation for Functional Gastrointestinal Disorders – iffgd.org/site/gi-disorders/motility-disorders/
Spine-Health – spine-health.com