• 8 months ago

    16 year old diagnosed with orthostatic hypotension and hypertension both

    Ok so about a year and a half ago when she was 15 we went to the ER with severe chest bypain, dizziness and nausea. Her blood pressure was 160/98. They gave her a GI cocktail and hours later sent her home. The next day we were back in the ER, same scenario. 3 days later we went to the family doctor who gave us a BP log and told us to log it for a week and come back. We didn't make it but 2 days. Within that 2 days she passed out in the hall at school and when someone got her to the office her BP was at 155/108. I picked her up. Her symptoms were pale, shakey, & blurred vision. I took her immediately to her Dr who prescribed her Cozzar 50mg with a .01 Clonidine for emergency's only. That worked for 3 weeks. After the 3 weeks we were back in the ER from school where she passed out again and they admitted her into the hospital for evaluation for 3 days. After the 3 days they still had no idea why she was having the issues and sent her home again and still no answers. Finally we got into a pediatric cardiologist and he wondered why we were there, like he just didn't understand the problem, like it was just normal or something, no big deal, so he sent us to a pediatric neurologist who is treating her for migraines which by the way she doesn't even have. The headaches are real but they are only a problem when the BP is a problem. So we drive an hour away 2 times a week for nothing and another 2 times a week to be treated for migraines. No one is addressing the BP at all. Now all the sudden, the blood pressure is low all the time, like most of the time. Yesterday the school called and I had to pick her up with a BP of 80/62 and she was pale and shakey and couldn't barely stand up. She slept all evening. Then today, they called me and I had to go get her with a BP of 155/111... It doesn't make sense to me. How does a 16 year old girl have hypo and hypertension and how do you treat that? There has to be a cause. That can't be normal. It has to be causing damage to her somewhere down the line. It can't be healthy. No one is doing anything to figure out what the problem is and I know there has to be a reason. I live in Louisiana and there aren't a lot of options here. I've thought of out of state help but idk if our insurance with cover out of state. I know medicaid won't but idk about TriCare. I just don't know what to do anymore. I'm stressed and worried. Scared for what's gonna happen to her and no one is helping us. Anything you can tell me would be great. I need some ideas of what to do. Am I freaking out for nothing? Any ideas are appreciated! I will go anywhere I need to go , climb any mountain, cross any ocean, call anyone I need to or drive any amount of miles needed to get her the care she needs. We just need answers so we can know what's wrong and find treatment and learn to live as normal a life as a young girl can with her issues. Thanks for your time! I don't know where else to turn!