(Skip to the last paragraph if you just want to read the question. Everything else is our path to diagnosis).
Hello everyone, my son is now three years old. For about 9 months, he has complained of abdominal pain from time to time. For three months now, he has had multiple bladder infections that were constantly treated with antibiotics. About a month ago we went to a urologist who discovered stones in the bladder. We were sent to a pediatric urologist who, after a cystoscopy, discovered a reflux from the bladder to the kidney and a malformed ureter. A kidney function test revealed that our son has a kidney that is only functioning at 24%.
There were several inpatient hospitalizations and urine tests to suspect cystinuria. Unfortunately, this was confirmed during the examination of the removed bladder stones. They were cystine stones.
This surgery was a little over a week ago to remove the stones, correct his malformed ureter. He is still in the hospital with my wife while I get into the issue of cystinuria.
Bottom line: no salt, no animal proteins and drink lots and lots of water. We are trying to avoid a feeding tube for now by having our son "just" drink a liter of water. But that will be super hard because he doesn't drink much anyway. We are hoping it will change when he is no longer in pain when urinating. We want to give him two to three months to get used to it, in hopes that he will really drink enough.
I work on cystinuria a lot with ChatGPT and ask questions about cystine or methionine content in foods. Here I find that even vegan proteins are "sources of danger". Chickpeas, tofu and other legumes are rich in methionine. Which proteins do you recommend? We are a very sporty family and actively do a lot of sports. Proteins are elementary for growth.
I am thankful for any kind of exchange, advice, tips.
Thanks for taking your time reading all this.
