This article about pediatric gout isn’t meant to scare anyone, but to make sure that doctors, parents and patients take this disease seriously.
My Introduction to Pediatric Gout
Hi, my name is Jacob. At the age of 13 I was diagnosed with a disease that was mostly commonly known for people above the age of 50. I was a one in five million case according to my rheumatologist. I was diagnosed with was gout.
The first attack started because I had a combination of family inheritance, genetics and hyperuricemia mixed with a simple sports injury. Yeah, I went up for a layup during a basketball game and that caused my body to freak out and swell up around the ankle.
I feel compelled to share this story about my diagnosis to hopefully cause a new dialogue between patient, parent and doctors. I was alone. The internet back in 2000 did not give enough information or support for youth with gout.
My parents and family didn’t know anyone with gout other than my two cousins who were the same age and diagnosed with gout at the same time. We were a family linked together by one disease. A true scenario of the blind leading the blind.
My doctor either tried to make it sound like gout was a nothing type of disease or he blatantly lied to my family. I asked him if I could still join the military and he said I could, which was false. Then I was told that I could do regular sports and not expect any interruptions from my disease, which is false. I guess you can call it a nice way of gaslighting a 13 year old.
The Foundation of Pediatric Gout – What is it?
If you had to strip down the true formation of gout, I would conjure it up underneath a few health factors. One is the fact that your kidneys and liver are not well enough to break down the purines to uric acid transition.
The second factor is that you have hyperuricemia and chances are that it will be incredibly hard, if not nearly impossible, to ever get your uric acid level down to 1 milligrams per deciliter.
The third factor is that patients that were diagnosed with gout under the age of 40 have a much harder time in life than those who were diagnosed after age 50. According to the National Library of Medicine.
“Patients with a first diagnosis of gout at age 40 years or younger frequently had cardiovascular risk factors and were less likely to achieve an sUA level less than 6.0 mg/dl compared with patients over 40 years of age who were treated in routine clinical practice.”
Uric acid is linked to many diseases and cancers. The fact that this is not emphasized enough to a patient in their youth is outrageous to me.
My parents were already trying to search for answers in regard to my disease in 2000. Imagine telling them about the dangers of Uric Acid. They might have done anything, and I mean anything, to find a way to slow my disease down.
Between 2000 and 2004, the closest rheumatologist for kids in Modesto California was over an hour away. I had to rely on a general doctor to help me with my disease. The doctor was very blase about my condition. He would keep saying this sad old song, “Keep taking indomethacin and Allopurinol and the attack will go away.” The attacks never did.
When I hit 20, I had a tophi deposit the size of a golf ball on my left wrist. I had to get surgery to remove this monstrosity. The surgeon didn’t know if it was a tumor or not before operating. THAT’S NOT NORMAL!
Pediatric Versus Adult Gout
There was an interesting study done in France, they call it the GOSPEL study. Researchers were grouping men/women in two separate categories. One below the age of 40 and one above.
The researchers have found that the younger group had a slower reaction to Uric Acid blockers like Allopurinol and Uloric. The same group developed Tophi at the same rate as those above the age of 40. Ultimately the risk of cardiovascular diseases was much higher than those in the younger group.
In general, this study found that the symptoms and issues of gout were the same no matter what the age. If anything, it was worse for the younger group because they had the disease much longer. By the time they hit 70, the disease progressively got worse through time.
Examples of joint, tendon and bone deformation are much higher for someone with gout under the age of 40. I am currently 37 years old, and both my hands are deformed.
Medical News Today stated back in 2022.
“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.”
I never had any underlying causes other than Hyperuricemia. Doctor’s thought I had contracted the disease by family inheritance by way of genetics.
Lexington Foot and Ankle wrote in 2022.
“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.”
At least they delved a little further and gave a little bit more information. It’s interesting about the female side of gout though. Turns out estrogen does help with excreting uric acid better than testosterone!
I can go on and on about this topic, but let’s discuss the demon in the room. The mental health aspect of pediatric gout.
Mental Health with Pediatric Gout
The fact that a kid will endure the pain of gout is terrible in my eyes. I remember feeling helpless and useless and a burden to my family.
I had all this energy as a teenager. Then I found that the slightest move to your joint or tendon will cause the most horrific pain. I had to learn to just relax. Sleep it out. Pent up energy versus a kid is not a good match.
No one ever truly prepares a kid for that. I wished my doctor back then told me “Jacob, this is what we know about gout attacks….” I wish he had been honest with me. You sort of go into your first attack with blindfolds on. You never truly know when you are able to fully extend your arm. I never wanted to move my knee or ankle because the of the pain coming back was too much. The connection between your mind and your muscles are broken.
I learned in my twenties that a gout attack can be shortened if I just got up and moved. Constantly I would psych my mind out. I would think it was going to be extremely painful to get up from the couch. Part of getting through a gout attack is blocking out that fear and just getting up. Try telling and demonstrating that to a 13-year-old. It’s harder than you can think. Pediatric gout doctors need to involve this with their patients.
There is a fear of exercise and playing sports. I always had this internal debate in my head just before any physical activity. If I do this activity and it creates a gout attack, then that fault is fully on me!
Others try to convince you that it’s not your fault, but eventually you blame yourself for all the gout attacks. Logically you know it is not your fault. But your depression screams the opposite.
I always get asked “did you take your pills” or “What did you eat?” or “Jacob, lay off the soda.” It’s hard to express to family that being asked that every time you have an attack is soul crushing. They don’t do it because they mean harm, but because they are looking out for you.
On the same topic, how do you convince a 13-year-old that they can’t enjoy a cheeseburger? Or have an extra side of fries? You can try, but trust me, the kid won’t understand fully. Foods and simple physical activities can cause an attack.
How do you explain to a kid that they can’t do the things their friends do?
Society automatically thinks of gout as being just a physical pain, but this disease also messes you up mentally. You might blame yourself for your attacks. Some might feel like a burden on society and to your parents or anyone taking care of you. I didn’t know how to trust my own body sometimes when it came to working out. Fear would get in my way. One might get gaslighted at your job, with family and friends or even by strangers.
Do not get me started on the unsolicited advice you get from strangers. If I hear another person talk about cherries……………
In Conclusion
So in conclusion, take this disease seriously. Uric acid is not something to mess with. Uric Acid is linked to cardiovascular disease, strokes, hypertension and the worst, cancers. If you’re diagnosed under the age of 21, you have to drastically change a lot of aspects of your life. That might also mean getting a therapist. Gout messes with your psyche. It messes with your ability to trust and deal with fear.
If ever I had a call to action, it would be this hope. I would hope that rheumatologists would come together and take pediatric gout more seriously. Simple logic should have prevailed with my general pediatrician back in 2000. He should have looked at my kidneys and my liver. A simple follow through with my uric acid levels would have sufficed. Adjusting my allopurinol dosage would have done wonders to my health. He should have sImply done better.
A common trend that I learned is simple. Just because we are young, does not mean our bodies will be better equipped to handle uric acid. Youth does not equal more vitality when it comes to uric acid.
There’s been too many studies to prove that my gout at 13 is just as bad as the older patients. Doctors and the medical field need to do better. This should be the call for doctors and researchers to start more studies. Be the change for pediatric gout patients.
I went from stage 1 gout to stage 4 gout in a matter of four years. I fully blame the medical field and the pediatrician. My gout should have been controlled when I was first diagnosed. I was a kid. My doctor failed me.
Comment below if you are under 21 years old and with gout. I will provide more articles (and videos on YouTube) highlighting more news about pediatric gout. I will let you go but do know this from me… you are stronger than you know! You are not alone!
To get a video version of this article please follow the link below.
No responses yet