What to do when you don’t get a diagnosis

A few months ago, I wrote a post about what to do after a diagnosis. We had just returned from the Mayo Clinic where my teenager was diagnosed with POTS but that’s not the reason we went. We took the trip because Rosie was spitting up blood and no one in Kansas City could figure out why. We didn’t leave the Mayo Clinic with an answer. In fact, we didn’t leave with any clues at all. We’ve spent the past five months trying to figure out where the blood is coming from with no luck. So what do you do when you don’t get a diagnosis? Here are my tips.

Stay calm– I put this first because it’s often difficult to do, especially with a sick child. You want answers now. Unfortunately, you don’t have them and it’s frustrating. Being sick is stressful enough but panicking will get you nowhere and it will also freak out your child who’s already sick and probably worried in the first place. Make it a point to take lots of deep breaths before you speak to anyone about your kid’s health because you’ll need them. 

Don’t quit– You don’t have an answer today but that doesn’t mean that you won’t get one tomorrow from a different test, doctor or hospital. Medicine isn’t exact science. You have to be persistent to find answers and only you can advocate for your child. Research and ask questions. I’ve become a master at using our children’s hospital portal because it documents all my conversations. Don’t have online access? Learn how to navigate the phones. 

Come up with a game plan– My plan has always been to keep asking questions and pushing for answers until the doctors and nurses want me to go away. Just today I sent an article to a nurse asking if a health condition was a possibility. The answer may be no but it’s worth passing it along just in case. Google has become one of my best friends. 

Keep a journal– I can’t tell you how many times we’ve been at appointments and I have to connect the dots on past symptoms. Now, I write everything down just in case there’s a connection. FYI, good doctors will ask you to document things too. Don’t be afraid to ask. 

Find or hire an outside advocate if needed- I am blessed that I have the time to talk to doctors and insurance companies during the day because I have a flexible schedule. If you don’t and are finding this overwhelming, see if there are patient advocates at your hospital (I called one just the other day to try to get a straight answer about some tests). If they don’t have one, see if there is a company in town that can help out. If you’re local to KC, I highly recommend Concierge Care (and if not, check out their website so you can see what kind of company to look for). 

Find support– Now’s the time that you need your family and friends to help keep you going and lift you up. It’s frustrating not knowing what’s going on with your child and if you’re spending a lot of time care giving that can be emotionally difficult as well. Don’t be afraid to see a therapist or ask for support groups at your hospital. While you may feel alone, you’re not. There are lots of parents out there with sick kids and no answers. 

Take care of you– We, as caregivers, often forget that we need to eat well, exercise and do all the things to keep us healthy. Be sure to block off time for you. You may not need any more casseroles, but having a friend come over to vacuum while you take a hot shower and a long walk may be nice.  For more ideas, read my Taking Care of You When You’re a Caregiver post. 

Make life as normal as possible– Fear of the unknown. It scares the crap out of people. Don’t live in that place. Keep your life as normal as possible and yes, I know there are lots of doctors appointments, missed days of school and blood tests but so what?