The journey to finding out if your child has a serious disease or condition can be long and befuddling. When my younger son confided he was having very scary symptoms at 13 years old, our hearts froze with fear while keeping reassuring smiles on our faces for him. Trying to stay calm and positive that it was an ordinary infection easily treated by antibiotics while feeling stone cold dread in our hearts that it was something serious. His first colonoscopy/endoscopy test confirmed what we feared — Inflammatory Bowel Disease (IBD). At first a little unclear which type, but as the inflammation spread viciously from his colon to throughout his digestive system, it was quickly apparent it was Crohn’s Disease.
The journey we took from first worrying to getting a clear diagnosis put us on the path to getting our son the help he needed. Here are my tips from Mom experience. I am not a medical practitioner so have just tried to learn and support my son.
Find the best medical experts you can in that related field in your region, ideally affiliated with an academic institution. We started with our outstanding pediatrician to rule out ordinary issues and avoid putting him through unnecessary tests.
Carefully think through and note down symptoms with dates you first noticed them, any blood work or tests, and medications. Keep track of important issues and milestones in a Word or Google Document and bring them or have access to them on your phone or tablet when you go to the doctor’s office.
Collect and share your family health history and your child’s medical record. Many diseases have a genetic component, often triggered by combination of genetics and environment. Be prepared to answer questions about their early childhood, any illnesses or surgeries they’ve had, even if it seems unrelated.
Find out what the gold standard testing and diagnosis process is for the disease or condition you are worried your child might have. Ask if there are similar conditions, environmental exposures, more innocent viruses or infections that could present similarly to the more worrisome disease being assessed.
Ensure your health insurance coverage is maximized and that you are clear on what your potential out of pocket costs could be. Make phone calls and use your health insurance company’s web site to ensure you are clear on your particular situation. Most U.S. health plans have “in network” providers and hospitals which means your insurance has special arrangements with these providers on how much they can charge for procedures, office visits and medications. In-network providers usually cannot “balance bill,” meaning charge you the difference between their list price vs. the price the health insurance company actually pays. “Out of network” providers mean the health insurance company does not have any arrangements with that provider so the provider can charge what they want and you can be liable to pay the whole or any part of the costs. Before I made appointments or considered using different hospitals I called to make sure I was clear on if the provider was in network, what kind of costs would be covered at what amount, and what my maximum out of pocket costs would be. There are costs and kinds of services that may not be covered at all by your health insurance or Medicaid even going to an in-network provider.
Be sure to note down the date, time and name of person you talked to any time you call to get information from your health insurance company. Be aware that some medical tests and procedures need to be pre-approved (or “certified”) beforehand in order to be paid by insurance.
Consider a second opinion. Another opinion can be helpful for peace of mind when you are going through the diagnosis process to give you confidence that you have the right assessment and to gather more information. When you have an idea of the likely diagnosis your child might have, it can be helpful to try to find out where the top specialists/hospitals in the country are for that type of disease. It might not be realistic to go there for a second opinion but they also can be a helpful information source, for example with information on their web sites. Sometimes they will do a virtual consult with your primary specialist at home. Again, check what your health insurance will cover. For example, we found out which hospitals seemed to be most highly regarded for pediatric IBD (Crohn’s Disease and Ulcerative Colitis).
Research online cautiously from credible sources. If you suspect a particular condition, consulting web sites online can be helpful or downright terrifying. Dr. Google will lead you down very scary paths which may be irrelevant to your situation and cause you unnecessary anxiety. I like to check highly regarded, scientifically based sites like National Institutes of Health, academic institutions, and evidence-based nonprofits such as the Crohn’s & Colitis Foundation. If it does turn out your child has what you are worried about, your doctor will give you perspective about your child’s specific situation that may not resemble the worst fears you’ll read online.
Try to take care of yourself and turn to your support network. Easier said than done when you’re so worried about your child, but finding some relief whether it’s through looking at funny posts on Facebook or watching a humorous movie, taking a walk, yoga, or workout time will help you cope. Talk to family and friends who give you the support you need, knowing realistically there will be some people who can’t seem to relate or offer the level or type of comfort you prefer or hoped for.
If your child is hospitalized, juggling the immediate hospital maze and urgency with trying to get a diagnosis are extra challenging. I try to help with ideas in this article on Coping and Self-Care When Your Child Is Hospitalized.
Different physical conditions call for different solutions and situations. My older son had a physical condition that turned out to be a rare birth defect that once found could be fixed. As an infant and toddler, my son had a very hard time swallowing anything beyond the smoothest baby food, was very thin, and got sick often. We had wonderful pediatricians who were concerned and checked him often but said it all could be attributed to being a picky eater and getting a lot of ear and sinus infections. Until shortly after turning 2 years old when I brought him in with a horrible upper respiratory infection. The astute senior pediatrician in the group in listening to his lungs picked up on a subtle but very unusual rustling sound in his chest.
After diplomatically rushing us in for chest X-rays and tests, he told us that our son had a very rare 1 in 3 million birth defect in which his diaphragm was not fused shut, so the hole had allowed his intestines to move up into his chest. He needed surgery as fast as possible to put everything back in place. If the doctor hadn’t been as careful and not dismissive of our worries, it would have been disastrous. (Happy ending: top birth defect specialist fixed it and now my son is a wonderful college graduate.) In my younger son’s case, he has chronic diseases including Crohn’s Disease which are lifelong conditions requiring continuous monitoring and care unless a cure is found.