OHF Stories is a new initiative from the Oxalosis & Hyperoxaluria Foundation intended to heighten awareness of our rare disease through the stories of families living with it. Our first author is Kristi Ouimet, who many of you may know, mother of two children with PH1.
We invite any family with a story to tell to contact us. The more information available to the public, the scientific community & legislators, the better chance we have for more research, more understanding and, eventually, a cure.
By Kristi Ouimet
After Molly’s first set of surgeries to remove her kidney stones, life went back to “normal” for the most part. She had just turned 4 years old. We started seeing a nephrologist at Oakland Kaiser (about 35 miles from our home). Our nephrologist had no idea why Molly had kidney stones, but he said even though it is rare, children do get stones, but for a variety of reasons. We increased her fluid intake and limited the salt in her diet. She was attending preschool 3 days a week and was an active child.
Since we did not know why Molly had the stones, we were not sure if she would get more. She was monitored every 6 months by her nephrologist and urologist, with labs, ultrasound and X-rays. A year after Molly’s first surgery, we discovered she had more stones in her kidney, but they didn’t seem to bother her at the time. Her doctor explained that if the stones were not in the process of moving into her ureter, they generally did not cause her any pain. We learned that monitoring her condition was a “hurry up and wait” game. We tried to go about our daily life and not let having kidney stones get in the way of Molly having a “regular life.” We also started looking at our other child, Patrick, who was now the age Molly was when she had her first kidney stone. Would he also have them? We wanted to have him checked for kidney stones, but trying to convince an insurance company to do tests on a child that didn’t present with any symptoms was near impossible.
We wanted to take our children to Disneyland for the first time but we were worried that Molly might have health issues and be too far from our hospital for treatment. Her doctor and I discussed going after the large kidney stones in her kidney before it had a chance to pass. We scheduled a surgery to remove the stones and place another stent before our trip. I struggled with this “proactive” approach fearing I was putting my daughter through a painful situation just to avoid the possibility of a kidney stone trying to pass. Her recovery from this surgery was easier and the process took weeks instead of months. Her doctor explained that she didn’t need the stent as long as she did last time because her ureter was not as irritated since the stone did not try to pass on its own.
Part III of the Ouimet’s Story will be forthcoming.