Comorbidity is an awful term. Morbid, a word we associate most with death, combined with the prefix co, which means together, mutually in common. There is nothing good about comorbidity. But many of us are dealing with it. Dual and multiple diagnoses are very common, especially when it comes to developmental disabilities.
It’s a cruel twist of fate that some conditions have a high occurrence of other serious issues. With that original diagnosis families are usually given a list of specialists to add to their medical team. We need to schedule regular health screenings so we can stay on top of what might develop in months and years to come.
We are vigilant early on … until life happens. Siblings come into the picture. IEP meetings swallow up our personal days. Everything seems fine so we figure missing a screening here or there is no big deal.
Or you have so much going on, you let what feels like little stuff go so you can focus on other things. Your own personal triage.
Then a surprise diagnosis knocks you off your feet.
That’s what happened to our family. And I want to share our story as a cautionary tale and friendly reminder to take those health recommendations seriously.
My 6-year-old son has Down syndrome … and sleep apnea, asthma, poor vision, recurring pneumonia, and an immune deficiency that requires monthly day-long IV infusions.
We’ve spent the better part of the past 4 years dealing with his respiratory issues which led to the discovery of the immune deficiency. The past year our normal has been spending multiple afternoons a week at various doctors appointments.
Given this chaos I thought nothing of letting his hearing screenings fall by the wayside. Guidelines recommend he get tested every 6 months. Our last screening was a year ago. Before that we went a year and a half between tests.
When I scheduled his hearing screening this spring I thought it would just be a waste of time. Another thing to check off of our long list. Another afternoon at a hospital instead of the playground.
When the audiologist told me he has slight to mild hearing loss in both ears I fell apart right there in the office. Why did I let something as important as his hearing slip through the cracks? What does all of this mean? How is it possible for my poor little guy to have yet another issue that will suck up even more of his precious, innocent childhood?
Thankfully I work for an organization that helped me sort through the shock and pain so I can make informed decisions when it comes to this new diagnosis.
Here are some things to keep in mind while you prioritize the importance of your child’s health and your family’s wellbeing:
· Take the guidelines seriously. Even if everything seems fine, some conditions are not apparent to the naked eye. Tests and analysis are important.
· Merge procedures whenever possible. If your child is having surgery, see what else can be done while he or she is under anesthesia. Doctors need advanced notice but usually have no issues doing blood work or other basic procedures that are difficult or painful when they are awake.
· Connect your doctors to each other. Ask each office for the consent forms so they can share information. Every time you visit your doctors will have updated information from one another. This helps ensure proper treatment and saves time during your appointment.
· Encourage your doctors to communicate. Specialties overlap. A procedure done by an ENT might benefit something the pulmonologist is concerned about. But we sometimes need to facilitate that interaction.
· Don’t let appointments lapse. Some of the doctors we see feel redundant or unnecessary … until they aren’t. Waiting lists can be long for new patients – sometimes over a year. An appointment that feels like a waste of time one year might be critical the next. Stay current with all of your specialists so you can get in if your child’s health changes.
· Don’t trust basic screenings. Schools and pediatricians have the best intentions. But the hearing and visions screenings they do are not on par with those of a specialist.
· Put your child’s needs first. If a doctor is ordering what seems like an unnecessary test, question why. Get a second opinion. Ask other families about their experiences. Medical professionals often have no idea what our kids are going through or how much strain their medical needs can put on a family. We need to protect our kids and our sanity. We need to ask the right questions. We need to balance necessity from routine sometimes.