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In 2018, my 18-month-old went through a complicated medical diagnosis with a rare disease I had never even heard of. How could my baby have arthritis? Arthritis was a complaint for when you get into older age groups. But here was Phoebe, hobbling around the house, holding on to furniture for support, like she’d done while cruising before learning to walk.
Every morning started with a dose of ibuprofen while we waited to see a specialist. She remained incredibly fussy, so I didn’t think it helped much-- until the day we were in a rush and it slipped my mind to give her the medicine.
On that day, Phoebe was crippled with pain.
Even after I’d realized my mistake and given her the meds in the afternoon, she did not take a single step until after 6pm.
The next few months were a whirlwind. Phoebe needed anesthesia first for an MRI, and later steroid injections in her swollen knees and elbow. I learned that Juvenile Arthritis was an autoimmune disease, and it has no cure. After a minor cold, Phoebe’s immune system had gone into overdrive. When all the virus was fought off, her white blood cells looked around for something else to attack: her joints.
And not just her joints. Even her eyes.
Inflammation wreaked havoc with her tiny body and doctors were telling me she needed more and more intense medication to control it. If we didn’t fight aggressively, Phoebe could have permanent damage to her joints and be left in a wheelchair.
We needed to start a treatment plan involving painful injections at home once a week, while also making a trip to Stanford Children’s hospital every four weeks so Phoebe could receive an IV infusion. Until these medications calmed her flaring immune system, we would have to apply steroid eye drops every hour to save her vision.
Come again?
Apply eye drops…. Every hour…. On a one-year-old?
“Yes,” the ophthalmologist answered. She was serious. “Does Phoebe sleep through the night. Oh, she does? That’s too bad….”
This doctor was considering having me wake my baby up at night to give her extra eye drops. Please no….
I left the appointment in a daze. How on earth were we going to handle all of these medications?
How was I going to explain to a toddler that the things she needed to help her were also going to hurt her?
The eyedrops routine lasted 8 weeks before we were able to wean off them. The infusions and injections took a few more months to subdue her arthritis flares. But because the likelihood of her disease becoming active again was so great, Phoebe would need to stay on those treatments at least until she started elementary school.
No part of mothering two kids or a decade of teaching in the field of early childhood had prepared me to cope with any of this.
And yet, I had everything I needed.
At the core of my parenting and teaching philosophy is to do everything with love. With honesty. And with respect.
How can you respectfully give eye drops every hour? How do you hold your child and stab them with a needle when you are shaking with fear inside? How do you watch as nurses poke them, again and again, trying to get a good vein to start an IV?
1. Sportscasting.
“Sportscasting'' is a term used in early childhood education for describing everything that you observe happening in a non-judgmental manner. Just like an announcer at a ballgame, you narrate what’s going on. Sportscasting empowers children because it helps them make sense of their situation. It’s also great for solving conflicts, without assigning blame or taking sides. For Phoebe’s treatments, this became, “It’s eye drops time. I’m going to lie you on your back and drip the drops in. They’re wet. Here is a tissue so you can wipe your eyes when we’re done.”
I know I hate it when my dentist pokes around in my mouth without any explanations or warnings. Sportscasting provided a way for me to inform Phoebe about what we were doing and give her a moment to prepare. With the frequency of the eye drops, it would be tempting to just scoop her, lie her on the floor or changing table, and then be done. But by treating Phoebe as a whole person, not just a helpless little one who couldn’t understand, I built our relationship on the trust that I would always be there for her and support and explain every step of the way.
2. Validate Feelings
This is so important for all children, but never more so when faced with medical trauma. All these things happening to Phoebe were painful and scary. I wanted to make sure that she knew it was ok to not like getting shots. It was ok to be scared. It was ok to hate how wet and cold the eye drops were.
Another important realization was that I could also share my feelings with her. The first time I gave a shot at home, Phoebe cried, and I cried, too. And then, my baby, my sweet, wonderful baby, stopped her crying and came to give me hugs and kisses. SHE ended up comforting ME. Right from the beginning, I began to see such a deep care and empathy in Phoebe, stronger than anything I’d ever known.
3. Develop Rituals and Routines
A two-year-old cannot tell time, but Phoebe frequently asked us “What day is it?” This was code for “Is it Shot Night?” You could tell she was feeling anxious about it, apprehensively waiting for the day she would get a painful poke.
Developing rituals and routines around these scary events helped make them less stressful. However, figuring out what those routines would be like took time. Big sister Cordelia would gather all of Phoebe's favorite comfort items: stuffed animals, blankies, and bring her cherished pacifier. We tried out various distractions like songs, videos, or apps. My husband and I tried our best to be matter of fact, and calm, to let Phoebe know she was safe, even in this unpleasant moment.
A game changer was applying numbing medication beforehand. It greatly reduced Phoebe’s anxiety about the shots, knowing that the poke would not hurt as much. We also added an anti-nausea medicine that reduced some of the side effects from the drugs she was taking. If there are things that can make your child more comfortable, look into it and ask for it. I wish I had done that sooner!
Our rituals evolved with consistency, love, and kindness. Now at four and half, Phoebe actually asks “Is it Thursday yet?” because she looks forward to some special treats: getting to watch an extra episode of Disney’s Princess Sofia show before bedtime, and a piggyback ride from her Dada to the bathroom to brush teeth when it's done. Somehow, after years of trial and error, the night we all dreaded had become our normal.
4. Rewards
We absolutely used rewards. Who wouldn’t want to reward showing unimaginable bravery in the face of something no child should have to deal with? However, we did have several insights along the way.
We started offering some sweet treats after Phoebe’s shots, like a scoop of ice cream or M&Ms. But my heart broke when I saw Phoebe given these treats on a different day, and she rejected them because she associated them with her pain. For a while, we moved away from food rewards.
Food rewards would have been even more impractical for dealing with hourly eye drops. Instead, we settled on blowing bubbles. Bubbles are pure magic in that they immediately delight and distract, for a moment dissolving fears and stress. Blowing bubbles also gives children a chance to practice their calming, deep breaths.
Toys and prizes are an obvious go-to. But as a toddler, Phoebe honestly did not care too much about toys. Instead, what she liked was opening presents. My mom took dozens of old Happy Meal toys and gift wrapped them.
Now, we sometimes give little gifts. Particularly difficult days often earn another stuffed animal for her ever-growing collection.
Stickers charts can be used to earn a bigger reward. Older kids may be able to “bank” bravery points and work up to something they really want. Another idea I have seen is to gather many beautiful beads. Every time your child has to do something brave, like get a blood draw for labs or an IV for an infusion day, let them choose 1 bead to add to a special necklace.
Screen time. The most obvious and convenient escape!
5. Consider siblings
Phoebe’s sister had many questions about what was happening to Phoebe. I did my best to always answer them as honestly as possible. We spent time making drawings of white blood cells and red blood cells and turning it into something a four-year-old could understand.
Cordelia hated getting shots herself, so Phoebe’s shot nights were almost as traumatic for her. But because administering the shot took both of our attention, no one could hold or comfort Cordelia while she listened to her sister scream or cry.
I will never forget one night, while lying in bed, she asked me, “Is Phoebe going to die?” I answered as calmly as I could that while scary, arthritis was not a disease that people died from, and that Phoebe was going to live a long, long life and her medicines were helping her feel better. But inside, my heart broke to hear her voice these worries.
It is just as essential to offer extra comfort and reassurance to siblings watching their brother or sister go through a huge medical trauma.
6. Use Dramatic Play
Children process things through play. Invest in doctor kits and about a million band aids. Offer different ways to role play through various parts of their medical treatments. Sometimes I was the patient and Phoebe got to give me an IV. When I pretended to cry, she reminded me to take deep breaths. We gave stuffed animals eye drops. Phoebe held her buzzing bee vibrating shot-blocker against her own leg and acted out giving herself a shot. She covered baby dolls in band aids.
We told stories about trips to the hospital and looked at pictures on my phone to “relive” the experience. We found positives where we could. She got poked, and she didn’t like it---- but she did have fun when the therapy dog visited her room! And of course, getting to watch TV all afternoon from the hospital bed was awesome!
Phoebe started asking when we were going to go back. Not because she was scared, but because she wanted to “see her nice nurses” again.
7. Involve them in their own care--- as much as they are interested.
I tried seeing if Phoebe wanted to watch us prepare her shots and draw up the medicine into the needle--- to take away all of the mystery. This did NOT work for us. Knowing she was about to get a shot increased her anxiety about it. But it might help for your child.
But Phoebe likes using the pill cutter to chop her folic acid tablets in half. She likes it when nurses let her pop the cover off the oral thermometer at the hospital. She likes holding my hand and “freezing like Elsa” while she gets her blood pressure taken, because if she moves, she has to redo it. She likes to help the nurses push in a small syringe of saline to flush her IV at the end.
After 3 years on shots, I randomly asked Phoebe if she ever wanted to help doing her own shot.
She decided to try that very night! I promised her a bowl of whipped cream with sprinkles on it if she went through with it but made sure not to pressure her too much. I was prepared for her to not go through with it. But again, Phoebe left me dazzled and in awe as she calmly assisted with her own shot. I’d seen videos of other children with juvenile arthritis giving themselves injections, but I thought that would never happen to us.
8. Advocate for Your Child’s Best Care.
This took time to learn. I am not someone who will make demands or send back a meal or file a complaint. But suddenly, I had a huge responsibility of speaking for a 1-year-old and determining the quality of her life. With Phoebe’s vision at stake, early on I bravely decided advocating meant requesting a second opinion. Even asking for it felt like a big step.
We were referred to another eye specialist, who ended up having zero bedside manner. Bedside manner is not a perk; it is essential when working with pediatric patients. Our experience was horrible, but I went to him for 3 visits before deciding expertise did not outweigh his lack of care:
He pushed for Phoebe to be put on a particular drug and acted extremely annoyed when our rheumatologist balked. She informed me this drug was not just adding another painful shot. The preservatives in the medicine burned, like “injecting shards of broken glass.” This eye specialist took no time to interact with my daughter and got pushy when we said we didn’t want to follow his advice for treatment. He thought I was wasting his time. Well, he was wasting mine. Doctors should be willing to work as a team, not based on their own egos. We left and never went back, opting to return to our first eye doctor.
Not only did she know what she was talking about, she coordinated with our rheumatologist on medications, AND she had a great rapport with Phoebe. I just had to see what else was out there to appreciate it.
So, if you think your child is not getting enough attention, don’t be afraid to see someone else to compare and find a practice that fits your family’s needs.
9. Document Details
Having a record of observations is so helpful in processing trauma. This can take many forms. Jotting things down in a notebook or entering them into a file on your phone may help. Phones are also useful because any photos or videos you might take come with convenient time stamps.
For me, starting an online journal was incredibly helpful. Not only did I work to process my own trauma of the daily events, but it gave me a way to analyze patterns or track things, so my mom-brain didn’t go crazy. For example, Phoebe fell at the playground and seemed to be taking tentative steps that evening. Did she hurt her leg? Would her arthritis be triggered into a flare up by the injury? Solution: take a video. If she was still limping the next morning, or had gotten worse, I would have evidence to compare it to. As it turned out, Phoebe felt fine the following day and I could stop stressing.
10. Find your Tribe
A few decades ago, going through a major medical trauma or diagnosis was a very lonely process. Today, we are immediately able to connect to support groups through social media—for free. No matter how rare or unusual--- someone out there has probably experienced something similar…. and there might even be a Facebook Group devoted to chat boards for it. The wealth of information and emotional support I received from moms on the internet was the most valuable resource during this whole process.
Furthermore, I became active in the Arthritis Foundation. Joining a Walk for A Cure gave me the channel to start sharing Phoebe’s story and letting friends and coworkers know about our situation. The Arthritis Foundation itself in turn offered support and connection. Once a year, they host a convention for families from all over the United States with children who have JA. In 2019, they flew us out for free. Cordelia and Phoebe went to fun, summer-camp like group activities, while I networked with other parents, attended workshops, and listened to lectures by guest doctors. It was so informative and connected us not just to other JA parents, but we started an amazing friendship with a family with two daughters almost the same ages as mine, AND a toddler diagnosis story just like Phoebe’s.
You feel scared and alone. But your tribe is out there. And they will have your back.
To learn more about Phoebe and her mother Rachel, follow their Facebook Page, Phoebe Steps Our Journey With Juvenile Arthritis! https://www.facebook.com/PhoebeSteps
Here is a video of Phoebe's diagnosis story: https://youtu.be/Rko4gBx4UFw
as well as a video of toddler Phoebe practicing with a toy doctor kit and reassuring her mom (the "patient") that she will be" fine" and to take "deep breaths" when getting an IV poke!
For more information on trauma informed practices, sensory and emotional literacy, visit the Center for Optimal Brain Integration® at www.optimalbrainintegration.com. Also, check out our resource page and free user guide and video on using the APP - TRIGGER STOP: SENSORY AND EMOTIONAL CHECK-IN for children ages 3-8 years old. Link to Trigger Stop APP and other resources https://www.optimalbrainintegration.com/app-1
