What a ride!!

We are embarking on a long journey. It began mid-July, when the girls had their well visit. They all checked out great, the normal make sure they exercise and watch what they eat. The next day we make a trip for their annual blood work that checks cholesterol. No biggie.

We get a call a few days later from the ped. telling us that Allie's cholesterol is 446, that we need to take her back to the lab and have her fast. The results were almost as stunning as the first. Her cholesterol was still in the 400's, and they found blood and protein in her urine. Immediately, the ped wanted us to get in with a nephrologist, she was really worried about her kidneys.

We get an appt for the following week...we go to Freehold (Centra State Medical Center)...about a half an hour drive with no traffic. Her dr is the chief pediatric nephrologist for St Peters University Hospital, so he's the best in NJ. She was diagnosed with Nephrotic Syndrome. Every day here eyes were really puffy when waking, and we thought she had allergies. Turns out that is a symptom of this disease.

In a nutshell, the filter in her kidneys are not working properly, causing blood and protein to spill into her urine, instead of staying in the body where they belong. This is causing water to be retained in tissues, her liver to release some kind of enzymes that cause the cholesterol to go up. At our first visit, her levels of protein were at 3.

The treatment consists of 3 months of prednisone...6 weeks to see if it works, the next 6 weeks slowly coming off of it. At our 2nd visit, 2 weeks later, her protein levels were down to 2. A step in the right direction, just not as fast as the dr wanted. 60% of kids with this disease respond to treatment within the first 2 weeks, 30% by 4 weeks, 5% by 6 weeks.