by Johanna Young

Did you ever play a game called Boggle when you were a kid? It’s a game where you have 16 cubes with a different letter on each side and you shake them up inside a plastic box. When they all settle into the little holding spaces on the bottom, you lift the lid off, flip a timer over, and start searching for and writing down as many words as you can in the new jumble of letters in front of you. When the timer runs out, you put the lid on, shake again, remove the lid, and start all over again. It can be intense – shaking it up loudly, worrying about if you’ll find enough answers in time, taking a deep breath as you lift the lid, and jumping in to discover as much as you can while time ticks away, knowing that you must do it all over again to progress. It “Boggles” the mind.
The same can be said of raising a child with chronic pain. It boggles the mind. Day by day, hour by hour, minute by minute, you never know when their medical conditions are going to shake everything up, leaving them hurting or sick while you act, as fast as you can, searching to figure out what just happened and, harder yet, what you can do to help. Parenting a child with chronic pain is like playing a never-ending game of Boggle, but no one really wins the game – you just hope to at least win the round.
When my child Cameron was three, I noticed he wouldn’t use both legs when walking up or down the stairs. He told me his knees hurt, which seemed weird for a three-year-old, but I assumed it was just growing pains. By four we still packed his stroller for long days at the zoo or other activities because if he walked for very long, he would cry in pain because his knees hurt. At the age of five, I saw him dislocate his knee running across the living room to grab a toy. I could no longer just hope this was growing pains as he crumpled and cried on the floor. I made an appointment with his pediatrician.
At the pediatrician’s office, our doctor could not really find anything “wrong” but (thankfully) he listened closely to what I said and felt my child needed a specialist. He sent us to orthopedics. Again, the orthopedist didn’t see anything “wrong” on x-rays but something about my child made him feel there was a bigger picture issue and he recommended we go to genetics. At the genetics appointment, while we waited in the exam room, Cam decided to sit on the floor and play with a toy. When the geneticist came in, he looked at Cam and said “Look how he’s sitting. That’s a big clue for me.” Cam was sitting in what was called a” W” pose, meaning he was sitting with his legs flat on the floor, knees forward, slightly pointed out from the hips and feet back next to each hip. To the person standing in front of him, his legs made the shape of a W. “He’s flexible. Likely too flexible,” the doctor explained. He went on to examine Cam and we saw that our child was very flexible, or loose, in many major joints – knees, hips, ankles, elbows, etc. The doctor explained that Cam was hyper-mobile, meaning his joints were often moving in and out of place which hurts. Now we understood. No wonder stairs, walks, running, and even playing often ended up hurting him. Cam was diagnosed with Joint Hypermobility syndrome that day with a referral to Physical Therapy to strengthen his body to help keep his joints in better alignment. We were also sent home with many packets, one about a condition called Ehlers Danlos syndrome, which the doctor said Cam did not meet the criteria for but was something to watch for in the future.
The future came faster than we wanted. By the age of nine, Cameron was in daily pain, throughout his whole body. He couldn’t make it through a day of school and the short two blocks walk home without pain so bad that he would breakdown crying when he got in the door. Everything hurt but nothing was the same day to day, hour to hour. His knees hurt one day but then the next his hip was out of place, and then a few hours later his foot felt like it was on fire while the next morning he had a headache. He was in pain every day. I wrote everything down for two weeks. I went back into the folder of information from genetics and rediscovered the packet on EDS and my heart dropped out of my body. Tears filled my eyes as I read the article that felt like it was written about my dear, sweet, hurting child. I took him back to the Pediatrician, showed him the article, showed him the notes I had written, and waited for him to tell me I was wrong. But he said, “I think you’re right,” with the saddest look on his face. We headed back to the geneticist and after only a few minutes and an exam, the doctor confirmed our fears. Cameron was diagnosed with the painful, incurable, genetic condition of Hyper-Mobile EDS (h-EDS). And so, his pain journey began. Doctor after doctor, physical therapy, 504 plans at school, a medicine cabinet that filled up, a small wheelchair took up space in the garage, sick days compounded, and Cam became a pain warrior. Just as we were getting to a “new normal” with Cam, two years later the game shook our family again.
Cam’s sister, Mary, was also diagnosed with h-EDS. My heart fell again. Now two of my children were saddled with chronic, daily, often disabling pain. In addition to EDS, they have multiple other conditions which often are present with EDS such as Postural Orthostatic Tachycardia Syndrome (POTS) which leads to high heart rates, dizziness, and potential fainting throughout the day, Celiac disease, Mast Cell Activation Syndrome, migraines, digestive disorders, chronic fatigue and more.
Every morning when we wake up, EDS shakes its dice at us, and we take a deep breath and play the game. What words will we see today? Will it be a turned ankle, headache, nausea, back pain, shoulder subluxation? Or perhaps we will see arm fatigue, back ache, elbow subluxation, finger pain, exhaustion? Today, so far, it has been neck pain, stomachache, jaw clicking, hip pain, knee pain, and ribs hurting. As a parent, what can I do to fix it? Not much. I sympathize, empathize, hug gently. Provide Tylenol, Advil, muscle relaxants, topical gels, ice packs, bracing, warm bath, massages, distraction, dumb jokes, silly stories, video games, or anything to help get their mind off the pain. I make sure they take their medicine in the morning and the evening. I help plan their days, encouraging movement, but avoiding things that could hurt. We discuss when to bring a wheelchair to school or on vacation. We try to predict and plan for pain as much as possible, so they are prepared. We plan, we predict, we respond but we never quite control. We get through the day but then the next day EDS shakes up the game and we start again.
One thing I have learned is that playing this game is so much better when I can play it with other people who also play the game. Other parents who see their child trapped in the daily shake up of chronic pain. Suddenly, despite the seriousness and sadness of the game, playing with others brings friendship, support, and encouragement. It brings an understanding of exactly what you’re going through that no one else in the “normal” world understands. My family has been lucky enough to attend pain retreats and camp sponsored by the Pediatric Pain Warriors program. It has literally changed our lives. We’ve met so many friends, all of us, learned so much, and gained a sense of confidence and hope that we didn’t know was possible. While I never would have chosen this journey for my family, it has brought us some of the most amazing friends anyone could ever be blessed with.
So, if your child has been diagnosed with a chronic pain condition, I’m sorry you are going through this. But if you’re reading this, it means you’ve already been searching for answers and found this blog. So, get ready to play the game again, today, tomorrow, and always, but know that you aren’t playing alone. I’m playing right alongside you, as are countless others. You and your family are not alone. You have a team.