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Published 6/2/2024 by Jacob Woodring
Pediatric Gout: My Story and What I Wish Families Knew Sooner
Pediatric gout is rare. At the time, very little information existed online about gout in children and teens. My family had no idea what warning signs to look for or how serious early-onset gout could become.
What happened next shaped the rest of my life. I went through years of misdiagnosis and unmanaged uric acid levels from doctors. With better awareness I could have avoided the complications.
Through time, pediatric gout studies have improved. More doctors recognize it early, but there is still a major lack of information for families. Especially those navigating gout in kids, teens, or young adults for the first time.
This article is my experience. What truly happened. Together we will go over the missing signs. This is what I wish every doctor and parent knew about pediatric gout 25 years ago.
My First Gout Attack at 13
My first gout flare started after a simple sports injury. I went up for a layup during a basketball game, landed awkwardly, and my ankle swelled more than a normal sprain ever should.
We know today that pediatric gout is triggered by:
- Genetics
- Hyperuricemia (high uric acid)
- Kidney or metabolic issues
- Family history
And that’s exactly what was happening. I had all the risk factors without knowing it.
“Gout is more common in adults than in children. Pediatric gout is very rare and may result from an underlying medical condition, such as obesity, metabolic syndrome, or kidney disease. There is little information on managing this specific condition in children. Treating gout depends partly on the underlying cause.” Gout in children: Symptoms, causes, treatment, more
Back in 2000, there were no online support groups, no pediatric gout information pages. My parents were trying their best, but everything available focused on older adults, and I was 13.
Misdiagnosis and Missed Warning Signs
Because gout in children is so rare, I spent years seeing general doctors who weren’t familiar with early-onset gout. Here were some of the early overlooked warning signs:
- No uric acid level monitoring
- No referral to a pediatric rheumatologist
- Medication doses that stayed the same despite constant attacks
- A belief that gout in kids was “mild” or “temporary”
As the years distanced themselves from my diagnosis in 2000 to my mid 30s there were new studies about pediatric gout. Who knew that there was a link between testosterone and estrogen to a diagnosis of gout.
“Given how rare gout is in children, it is often thought to be from an underlying medical problem. This affliction can occur at birth or be associated with obesity, down syndrome, congenital heart disease, or kidney disease among other things. Male children experience a more sudden rise in uric acid levels at around age 12 compared to similarly aged females. This may be due to rising testosterone levels in males, which gives rise to increased uric acid. In contrast, rising estrogen levels in females cause an increase in uric acid removal.” Can Children and Teenagers Suffer With Gout?
From 13 to 18 Years of Age my Body was at War with Itself
From the time I was 13 at my diagnosis until now (I am almost 40) I have heard things like, “Just take Indomethacin and Allopurinol and your attacks will calm down.” They never did. I was also told to take Indomethacin daily. DO NOT DO THIS! You only want to take Indomethacin when you have an attack. I am not a doctor, so I am not giving true medical advice, but I am sure doctors would back me up on this. Allopurinol (or Uloric) is the one pill that you should be taking daily.
From age 13 to 15 I had developed tophi on my ears, hands and feet. By the age of 20, I had developed a golf-ball-sized tophi deposit on my left wrist. Doctors didn’t know if it was a tumor or a cyst until after operating. That’s how advanced things had become. Needless to say, after this scare, I had become an expert on tophi.
Understanding Pediatric Gout (What It Actually Is)
Pediatric gout forms for the same reason adult gout does. Your body goes through an overload of uric acid that crystalizes in the joints and tissues. But in children, the cause is almost always linked to something deeper.
Common reasons gout appears in children or teens:
- Genetic predisposition
- Hyperuricemia present since childhood
- Kidney issues or reduced uric acid excretion
- Metabolic disorders
- Certain medications
- Rare systemic conditions
According to the National Library of Medicine, early-onset gout (diagnosed under age 40) tends to be more aggressive, harder to treat, and is linked to a higher risk of cardiovascular problems later in life. Comparison Between Early-Onset and Common Gout: A Systematic Literature Review – PMC
So when an elderly man who is diagnosed at gout after 60 recommends eating cherries and no more alcohol, just smile. They do not know how server and worse it is for anyone under 40 to develop gout. It’s even worse as a child.
This is why early diagnosis matters so much. This article provides more information about the seriousness of pediatric gout. Included in the website article is an important stat. For a specific study, there were only 7 kids under 15 that had gout. I was diagnosed in 2000, I believe this study was just before my diagnoses.
“Our nationwide questionnaire survey of pediatric departments identified only seven cases of gout in more than 2,300,000 inpatients and outpatients under 15 years of age [10].”
Differences Between Adult and Pediatric Gout
Research which includes the GOSPEL study shows that:
Kids and younger adults often:
- Respond more slowly to uric acid–lowering medications
- Develop tophi earlier
- Experience more joint changes over time
- Have flares triggered by activity, growth, and hormones
- Face higher long-term health risks
More information about the GOSPEL study can be found at Patients With Early-Onset Gout Develop Earlier Metabolic Comorbidities, Severe Joint Involvement – Rheumatology Advisor
I am living proof of this! I am almost 40 and both of my hands have visible deformation from repeated flares and tophi buildup.
My Mental Health as a Teen With Gout
One part of pediatric gout no one warned us about was the mental health side.
As a teenager, gout made me feel helpless and embarrassed. I didn’t know what foods to eat that could trigger a gout attack. The food triggers for a 60-year-old man with gout is far different in a 13–18-year-old kid. How do you tell your friends that you can’t play basketball anymore because it might trigger an attack? No one thinks about this.
There were times I was afraid to move my body and exercise. If I push myself too hard, would it come back to bite me with swelling me up my ankles? You start to become too fragile with your body. Your adventurous side that you want to explore in your teens is robbed from you. I wanted to play sports and explore the outdoors, but I couldn’t.
Mental Health and The Connection to Your Body and Your Gout Disease
Another mental frustration is when you mad at your own body. I cannot count how many times I took out my frustrations on my parents or loved ones. You tend to question whether you are strong enough to open up a damn pickle jar. Why were you put into this body? You start to breakdown your own trust between your body, heart and mind. I wonder if there is an actual study on this from psychologist!
One last major mental hurdle is feeling like you are a burden to your family. So many times, my parents had to help me zip up my pants or help me walk in general. I was told that I could go into the NAVY by my old doctor, but that was a lie. Why is my family stuck helping me this weekend when they could be going out and having fun? Do they resent me for me being dependent on them? So many thoughts go in and out of your tired brain and it’s exhausting and sad.
When you’re 13, the world is supposed to be about sports, hanging out, and figuring out who you are. It’s not supposed to be joint pain so bad that you can’t get out of bed.
I was constantly asked by family, friends and strangers when I had an attack, “Did you take your pills?” “Did you drink too much soda?” People ask because they care, but kids with gout often end up blaming themselves. You fear physical activity because it might trigger an attack. I felt differently from my friends. You get unsolicited advice constantly (“Have you tried cherries?”).
No one prepared me for that part. And I wish someone had.
Lessons for Parents, Teens & Doctors: What to Watch For
Here are the signs I wish someone had told us to look out for early:
1. Swelling that’s too severe for the injury
A sprained ankle shouldn’t swell for weeks.
2. Joint pain that comes and goes
Especially pain that increases at night or after activity.
3. Uric acid levels that stay high
If a child has hyperuricemia, it needs to be managed and not ignored.
4. Family history of gout
If the parents have hyperuricemia or gout, monitor your kids before and after puberty for their uric acid levels.
5. Bumps under the skin
These may be early tophi, even in kids.
6. Slow or no response to NSAIDs
This is a common sign of early-onset gout.
7. A doctor who dismisses symptoms
If something feels “off,” push for labs or a rheumatology referral. Be your own or your kids strongest advocate and fight for your health.
How My Life Changed When I Finally Saw a Rheumatologist
When my family moved to Stockton, California, I finally saw a rheumatologist who understood early-onset gout. She immediately:
- Monitored my uric acid
- Adjusted medications
- Watched my tophi
- Scheduled surgery when needed
- Took my symptoms seriously
It was the turning point that helped me prevent further damage.
FAQs About Pediatric Gout
Can kids really get gout?
Yes. Rare, but absolutely possible, especially with genetics or hyperuricemia.
What are the first signs?
Sudden severe joint pain, swelling after mild activity, or lingering swelling after injury.
Is pediatric gout treatable?
Yes, but early, aggressive management is key to preventing complications.
Can tophi form in kids or teens?
Yes, and faster than doctors once believed.
Final Thoughts: You’re Not Alone
it’s overwhelming as a child being diagnosed with gout. Just know that you are not alone. I’ve lived with this disease for over 25 years, and there is more support, more research, and more advocacy now more than ever before.
Early detection and consistent management can change everything.
If you have questions or want to share your story, leave a comment below — I always respond. And check out my YouTube video where I talk more about pediatric gout and my journey.
You can also read my first ever gout article written by me through this link My Gout Started When I Was Young – thefamousjacob.com
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