I have an 8y/o with swcah. We only have to get lab draws once per year for renin levels and 24hr. urine collection every 3 months for volume, creatinine, 17 Ketosteroids, and pregnanetriol levels. Sometimes our Endo. has blood draws for both and he instructs us to get labs drawn 1 hr. before his 8am meds and then we have to go back 2 hrs. later to be re-drawn.  It has been like this for his entire life. Is anyone else managed like this? Just wondering.