A Day In The Life of a Child With Long COVID

By DEVYN CORTES

United States of America

My previously energized 11 year old stays in bed longer than anyone nowadays. She wakes feeling unrested. Her legs and joints hurt, her head often hurts and she must lay in bed for about 20 minutes after waking before feeling well enough to stand. When she is finally ready to get up, she does so methodically. First, sitting up at the edge of her bed for a second to make sure the position change from laying to sitting hasn't made her too dizzy (orthostatic intolerance). Next, putting both hands on her walker, and last, standing and using the walker to aid her throughout the house. It sounds like a lot, but this is great improvement from her hospitalization 6 months ago when she couldn't walk. She had been crawling/scooting on the floor in pain at home.

She gets dressed knowing that she has to choose clothes that won't her her. She has been formally diagnosed with a Functional Nerve Disorder by her neurologist, and more specifically Amplified Musckuloskeletal Pain Syndrome by her rheumatologist. It has been explained to us that her nerves are disregulated. Her pain sensors are reading everything as pain; even the wind or air conditioner in the car hurt her at times.

She picks food and drinks carefully. She tries to maintain her headaches and dizziness by keeping well hydrated. She has become more aware of nutrition labels as she knows sugar is a trigger for her pain. She chooses something that wont make her feel bad for breakfast (usually oatmeal or a plain, healthy cereal) and takes a plethora of vitamins and supplements. B2, B12, C, D, magnesium, zinc, probiotic, quercetin, bromelain... I'm probably forgetting some.

We have no real pain management plan except for naproxen which she doesn't

take anyways because it doesn't work. We dance (metaphorically) through the day trying to avoid flares/triggers, and cross our fingers its a good one.

Depending on the weather it might be out of our control. Cold days are worse and more achy. Sometimes when she is feeling well she is able to walk and play a lot.

Seeing her still able to smile through it all makes me happy and proud to be her mom. But, sometimes she over exerts and the day ends in tears. Tears that she thought she'd be ok. Tears that she should have known better. Tears that we don't know how long this will last. Tears that literally hurt her skin as they roll down her cheeks. My sweet girl. I wish I could take it all away.

I hold her and console her and reassure her that I'm trying my best and that we will figure it out. Nettle leaf tea helps. Hot packs help. Essential oils help. Having a strict sleep hygiene helps. But they are just bandaids. We have been to more doctors appointments and seen more specialists than I can count in the past months. Phone calls, tests, push back, arguments, frustration, tears... being told its anxiety and psychosomatic. Her therapist disagrees. I as her mother and best advocate, disagree.

Now, months later... due to more and more children getting sick, we are finally at the turning point of being believed. She never had a positive COVID test (tests

weren't available in early March 2020 when we were sick), but we were all sick at the same time and I was positive for antibodies. If I wasn't a long hauler myself I might not have believed it was COVID related either. While my daughter is seemingly on the road to recovery and able to walk more and more each day, she still isn't the same. She went from being a black belt in karate to using an assistive device and having a handicapped placard. Some days she is unable to get out of bed for hours. The chronic fatigue is debilitating.

We go to sleep every night at the same time (8pm). She uses a natural sleep spray to help her get to sleep, a magnesium spray to reduce aches and pains, hot packs to soothe her tired limbs, and a sound machine to lull her to sleep. She sleeps with her walker by her bed and her watch by her pillow in case she needs to call me from the next room in the middle of the night for help. I do not let her go to the bathroom by herself in the middle of the night, as I'm scared she might fall. We pray for health and healing and try our best to rest. This... even with chronic pain, dizziness, GI issues, tears, a walker, etc. is (for many long haulers) considered a good day. We are alive, we have survived, but we -especially our children - deserve so much more.

Melissa Lynch is the USA Associate for Long Covid Kids

LongCovidKids.org is a patient-led advocacy and support organisation led by Sammie Mcfarland for families of children with Long Covid. Our story started with a short film on long-lasting symptoms of Covid in children.

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