I saw your post regarding your son and wanted to reach out with our story. Maybe we can help each other. In 2016, when my son was three and a half, I took him into the doctor for an ear infection. The nurse tried several times to take his blood pressure and was unable to do so. It turns out, his bp was 150/110. I was floored and took him to the ER where he was hospitalized for a week as doctor's worked to lower his blood pressure and discover the source of the extremely high bp. An MRI revealed a malfunctioning kidney and agenesis of the lower IVC. Blood testing showed heterozygous Factor V Leiden.
Less than two months later, the malfunctioning kidney was removed and over the course of the next two years, my son went from taking three bp medications to none. While we are grateful his blood pressure is closer to normal, and that he is a wonderfully, normal 7 year old boy, we are faced with an uncertainty for his future. As time passes, the veins along his abdomen that are compensating for his partially absent IVC are becoming more and more pronounced. They look like large varicose veins that run from his chest, to the left side of his groin.
We have met with Hematologists and Vascular Surgeons who have told us the same thing: no recommended anti-coagulation at this point, due to his age. Doctors also told us that as he ages and goes through puberty, he will be at a greater risk for DVT. I asked about surgical interventions/grafts and did not get too much information or positive feedback. I take him for acupuncture to help his circulation and try to do everything possible to keep him healthy. We live in Germany, but are willing to travel to get him the help he needs. My hope is that as technology advances, I can find a long term solution for my son.