I strive to be the best mother and advocate for my children I can possibly be. I don’t always succeed, and sometimes I feel like I’ve let everyone down, but once in a while, I feel like I’m doing exactly what I need to do. I’ve learned a few things these last few months on this crazy journey that I thought I would share. I hope this will help someone that’s starting on a similar journey or is in the process of trying to get their child diagnosed because you know something just isn’t right. Here is my list of things to do to help your child and their doctor:
- Tell them every symptom you observe even if you think it’s not related. I myself am not a medical professional, but sometimes I would erroneously make the decision that two things are completely unrelated, and I would leave it out when discussing a problem with the doctor. I once had an ER doctor tell me that I had no idea what their train of thought was and should always include my full medical history. I’m not sure why it didn’t occur to me to do the same with my children at first, but it could be the missing piece to the puzzle the doctor needs.
- Do your own research and make suggestions/ask questions. While the internet is not always our friend, we are at an advantage that we can use it to research our child’s symptoms or current diagnosis and try to help the treating physician, however we see fit. The doctor was testing my son for Celiac disease, and I emailed her to make sure another test was included with that panel since results couldn’t be interpreted without it. She told me I was absolutely right and to add it. I wanted to make sure they took the blood they needed, and the results could be used. She didn’t seem to take offense, and just assumed it would be included with the panel. I wasn’t taking any chances.
- Keep records of every test done and all of the results. If you have a child with a complicated medical history, or an illness that requires more than one specialist, having those test results handy is helpful to all parties involved. I keep binders for my children so that I can refer back to when certain tests were done and what the results were. When we see a specialist and they want to run a particular test, I can tell them if it’s been done and what the result is.
- Turn to other experts for help. While your pediatrician may be great, maybe he/she has never seen whatever it is your child has. Maybe your child’s gastroenterologist hasn’t dealt with enough cases of a particular diagnosis to know first-hand what would be best. Or perhaps the surgeon about to operate on your child is so focused on the surgery, they lose sight of some of the less common risks involved. Whatever the case may be, turn to someone else. Get a second opinion. Get a third opinion if you feel like the fit is not right. My daughter saw two neurosurgeons before we decided to go ahead with the surgery. We sought out a hematologist for her because she is scheduled for surgery and I have a medical history that may complicate it. It may be a little extra time on your part, but in the end, it could make all the difference.
- Write everything down: dates when symptoms occurred, when new medications are started, etc. It’s amazing how much detail they want us to remember when we go in for an appointment. When did this first happen? What were the circumstances? Did anything help? With three kids and busy everyday life, it’s amazing I can remember my own name sometimes. But I always made it a point to keep track of everything in my calendar on my phone. Each child has their own calendar and I put important notes in. I can tell you each time my son was on antibiotics, and which antibiotic it was, when he first started vomiting out of nowhere, and when we removed certain foods from his diet. This takes a lot of pressure off of you because you don’t need to remember everything, you just have to go back to your calendar and look.
- Turn to other moms/groups for help. When all else fails, look to other moms and join groups that are dealing with similar situations. There is a Facebook group for almost everything you search for. These women are a wealth of information just waiting to be shared. Some of my best pre-op questions come from these groups and sometimes they help you connect the dots. While not scientific, if multiple moms are talking about their child doing the same thing, indicating a symptom, it is quite convincing. It makes you think and realize things that you were missing and should share with the doctor (see # 1). What’s the saying? “A worried mother does better research than the FBI”. If that’s not the truth, I don’t know what is.