Young girl in a hat reading a book

Kaitlyn’s Story

Meet Kaitlyn

Kaitlyn has always been a dedicated student, making high honor roll & always giving 110%. She has been dancing since the age of 3, and began competitively dancing at the age of 9. Her favorite style of dance was tap.

Kaitlyn was an avid reader who could read a 500 page book in a couple of hours and one summer read over 50 books!

Kaitlyn is very creative in everything she does and also enjoyed drawing. She played the violin for 4 years. She is a quick learner and enjoyed teaching herself new songs that she found the music to online.

Covid Infection

Kaitlyn came home from school on December 23rd complaining of a very mild sore throat. It wasn’t that bad, but we decided to be proactive because of the holidays and did a rapid test on December 24th. It appeared to be negative, but said to retest within 24 hours. Christmas morning, her sore throat was basically gone and she had no other symptoms, but we retested her and it was immediately positive. I tried a different boxed test, and again it was positive, so we took her to urgent care for a PCR test.

For the first 5 days, Kaitlyn was mostly asymptomatic. The initial sore throat went away and we thought she was in the clear. But on December 30th, the DOH contacted us to let us know her PCR test had been positive. That evening, she said she wasn’t feeling so good and went to lay down. She slept for 19 hrs straight. When she woke up, she was complaining of very severe flu-like symptoms (chills but no fever, headache, mild cough, fatigue, body aches, hot flashes and sweats, off and on sore throat, no appetite, sunken eyes, shuffling feet when she walked).

For the next two weeks she pretty much slept 15-20 hours a day and the symptoms never got any better. She began to have dizzy spells, erratic heart rate, and the start of brain fog. We could tell she was having trouble putting thoughts together coherently. She became forgetful, was mixing up names of people, withdrawn, quiet, had trouble concentrating, trouble retaining school work that she was doing at home while on quarantine, and she started complaining of nerve pain in her knee/lower leg.

She ended up being quarantined by DOH for 20 days due to her symptoms starting a week late.

Recognizing Long Covid

I’m not sure when I had heard about Long Covid initially, but I was terrified of Kaitlyn contracting Covid because she had pre-exsisting asthma.

I had had several friends mention “brain fog” after having Covid, so I began researching that and I was able to identify it in Kaitlyn almost immediately.

She also kept having more random symptoms show up daily, but the brain fog was the most concerning. She has had tons of viruses throughout her life (including one 2 weeks before getting Covid) and she always bounced back really quickly in before.

When she didn’t bounce back and was still sleeping 75-80% of the day, not eating and generally just appearing very ill, I knew it was more than just residual ‘normal’ covid symptoms.

Finding Help

Seeing doctors has been a mix of good and bad. Her PCP has been terrific and acknowledged that she was experiencing Long Covid from the start, but wouldn’t use that term until she reached exactly 3 months post covid.

We have seen an eye doctor that checked her over and found no Covid related issues with her eyes, that visit was fine.

We saw a pulmonologist who tested her breathing and determined that there was no sign that Covid had infected her lungs. He diagnosed her with vocal cord dysfunction but wouldn’t say that Covid had caused or exacerbated it. He was nice, but wouldn’t admit he saw any signs of Long Covid.

We saw cardiology who also gave Kaitlyn a full 5 hour exam. The EKG and echocardiogram indicated no signs that Covid had affected her heart or circulatory system. This doctor was nice and sympathetic, but also would not admit she had Long Covid.

Kaitlyn’s regular Allergy & Asthma Doctor told her that Long Covid didn’t exist. She was just a little tired, it was all in her head, and she had to go back to school.

Needless to say, we won’t be going back to that doctor ever again.

We also saw a rheumatologist to rule out anything autoimmune. The testing came back fine, but she was diagnosed with hypermobility. This doctor was unfriendly and seemed annoyed that we had come to see her at all. She said that this was all just normal post-covid and kept asking why we were even there.

Kaitlyn also sees a therapist/psychologist, who has been helping with her anxiety.

We saw a neurologist who had little to no experience with Long Covid. He did see signs that Kaitlyn was having neurological issues, but wasn’t really sure how to treat her.

He ordered an MRI of her brain, which came back totally normal and he acknowledged her nerve pain and prescribed a medication. Her memory issues seemed to be getting worse on the medication so we had to stop. Unfortunately then the nerve pain then increased. The neurologist was at a loss and referred us to the Long Covid Clinic at Boston Children’s Hospital, in hope that they will be able to treat her better without possibly causing more issues in the process.

Her appointment at the Long Covid Clinic will be exactly 6 months from her initial Covid Infection.

The Impact

Some of Kaitlyn’s initial symptoms have resolved within the past 4 months. The symptoms that she still experiences are headache, some fatigue with activity, severe brain fog (concentration, focusing, retention, and short term memory issues), anxiety, sensory issues, weakness in her hands and feet and nerve pain in her hands/feet/lower legs/knees.

School Accommodations

Kaitlyn has been on homebound instruction for 4 months. She has been unable to attend school, in person full-time.

We had to obtain a 504 plan for her with the school. They provided a tutor 2 hours / 5 days a week.

School work takes much longer to finish assignments or readings. Kaitlyn no longer reads for fun and hates when she has to read anything for school because she is so much slower at reading now. She started run her finger along the text to keep her place which embarrasses her. And she can’t usually remember what she’s read by the next day.

Kaitlyn has trouble remembering all of the things that she’s learning. Tests have been difficult as she mixes up the information. She struggles with math and gets the numbers all mixed up. She was previously very good at math.

She can’t write with a pencil for long. She had to drop her drawing and painting class because she was unable to physically draw anymore due to the pain in her hands. She does still create artwork, but only digitally on her ipad

Despite all these issues, she has managed to keep her grades up, but it has been a lot more work to do so than she has ever had to put into it before.

Decreased Activities

For the first 6-7 weeks post covid, she was unable to tolerate any activity whatsoever and was unable to dance at all. We ended up having to drop all of her recreational dance classes because she was physically not able to keep up and mentally she was unable to pick up the new choreography with her short term memory issues.

Kaitlyn slowly began going back to her competitive classes to watch but not participate She was able to compete her dances at several competitions but she still cannot withstand an entire dance class of technique. She does get tired and has to rest a lot, but so far has not crashed after dancing them. She was only able to compete these dances because her long term memory where she had learned these dances does not seem to be impacted. She struggles if they have to make any changes to them though and worries about forgetting them on stage. I’m just grateful to see her on that stage again, I thought we may never see her dance again ever.

Now Kaitlyn can’t open things, cut up her own food, or carry anything that has weight to it, she struggles even brushing her own hair.

Kaitlyn doesn’t like to be in crowds and it never was a problem. She can’t go shopping or even be around a lot of her friends all at once anymore when she was very social before. She says she feels socially claustrophobic and uncomfortable. She has noise sensitivity, so being in crowds is hard for her, but everything is really loud so even quiet voices make her uncomfortable now.

She tires easily just from walking around, but her stamina and endurance is getting better through PT. Every couple of weeks she gets a very sore throat for 2-3 days with no other symptoms.

Kaitlyn still won’t eat a lot of foods and things that she used to like she either doesn’t like because of their texture now or because they are spicy (salt and pepper make them be spicey). She never fully lost her taste and smell, but we do believe she partially lost it and now things do not smell or taste normal to her. She won’t touch ice cream for anything (unsure why but she LOVED ice cream before getting sick).

She’s a lot more visibly nervous about everything. Constantly second guesses herself and is worried about messing up. She was a perfectionist always but now its causing her mini panic attacks. She doesn’t like being touched (hugged, tapped on the shoulder, etc ) unless she initiates it.

Things that Help

Since her symptoms are just all stagnant right now, I wouldn’t say there’s anything specifically improving her quality of life. It seems that PT and OT has begun to help by helping to get her muscles working again and helping her to build endurance. Being able to dance even a tiny bit has helped her mentally the most, because dance is her everything. We just take it one day at a time and hope things don’t get worse.

What I Wish People Knew

I wish people would stop giving us sympathy and “well wishes” and then in the next breath they are doing things that could directly impact the wellbeing of my daughter.

I wish people would acknowledge that this is happening to people all around them and that simple things like wearing a mask could really save their lives, to me wearing a mask isn’t anything more than just an inconvenience.

I wish that there were still safety precautions in place to protect all of the people living with Long COVID, and that the mentality/narrative hasn’t just shifted on this to “well I recovered just fine, so my rights are more important than your rights to live safely.”

I wish there was more research being done right in the beginning for kids, and that doctors wouldn’t make them wait 6 months to be seen.

I wish that all doctors would work together on this and make themselves knowledgeable about studies being done. I think it’s unacceptable to have so few pediatric specialists in our country to begin with but even worse that more than 50% of them have zero knowledge about Long COVID.

I wish that everyone around us wouldn’t just look at my daughter who appears on the outside to be totally fine, and assume that she is. She gets so little acknowledgment for all the stuff she has going on inside her body that is unseen. Just because you cant see the pain that Long COVID sufferers are feeling, doesn’t mean it doesn’t exist.