This conference was meant for parents with children to come together and learn from the experts on what having AR and AD PKD means for their little ones. Approximately 20 parents attended with five specialists including: Chief Pediatric Nephrologist (Kidney doctor), Pediatric Hypertension specialist (Blood Pressure), Pediatric Hepatologist (Liver doctor), a renal dietitian, and a pediatric social worker. Dave walked away with so much insight we now have a gameplan for Logan's blood pressure and how we ensure we are part of the next round of genetic testing at the National Institute of Health. We also walked away with the continuing realization as to how unique this disease is and how there are so many unanswered questions around it. Every form is slightly different which makes it insanely difficult to map the DNA for finding a treatment or cure.
Good news:
- Talvaptan medicine currently under testing for treatment of ADPKD is basically a crap ton of water being pushed through the system. The recommended amount of water a day is approximately 4 L or 120 ounces for our little Logan.
- Caffeine exacerbates the growth of the cysts so we need to cut down on chocolate and coke is completely abolished now from our home. (Haven't let go of coffee yet)
- Lowering blood pressure to under the 50th percentile can add 2 years of Kidney function for every 5 years of life. *As I said we have a gameplan.
- The entire conference was recorded and will be posted in the next few weeks.
The best part of the whole conference was meeting parents with children similar to where Logan is and sharing stories. Surprisingly we weren't the new kids on the block either. One couple had found out a month ago their four year old has it. Dave shared knowledge and we received knowledge. It was a great event.
In other news: September 22nd is the date for the PKD walk this year. Dave and I are coordinating so save the date.
