My son is 8years old. Has been diagnosed with Vonwillie Brands. Currently had amnicar and humate. Oct 12,2014 had open heart surgery. He has always had nose bleeds off and on. Example 2 a month. For the past 2 months or so has been constistantly complained about headaches. Dizzy when getting up or standing for long periods or time. Weakness in his legs. BP can range from 144/88- 88/54. His bloody noses constistantly started in the last week. Blood pressure last 2 weeks. Although we weren't consistantly checking prior. He usually Is at 113/77. I'm at a lost. Cardiologist is wanting to do a tilt table test. We are currently waiting on a neurologist referral. Please help point me in the right direction. Poor kid has been through enough.