So after another visit to All Children’s Hospital, my daughter has been labeled as a medically complex child. It is not something that any parent wants to hear, but it helpful when getting diagnoses and getting treatment in the medical field. Physicians are more likely to keep up to date on tests done by other doctors, new medications prescribed by other doctors and work together with other doctors treating the child.
For us, our daughter’s primary doctor, her pediatrician, is local. She gets all the medical records when updated from each specialist. The specialists are located in another area, most at All Children’s Hospital. Because my daughter has been diagnosed with allergies, anxiety, depression, narcolepsy, enlarged tonsils and adenoids, sinus tachycardia, Long QT syndrome and now Postural Orthostatic Tachycardia Syndrome (POTS), doctors must be informed of any medical changes. Even her dentist needs this information.
The burden has been on us, her parents, to relate this information. Now with the label medically complex child, the burden changes to the physicians. Of course, we are not taking any chances. For example, we carry the list of medications my daughter cannot take due to the Long QT syndrome with us at all times. We remind doctors about that list at each visit and double check with the pharmacy.
Another outcome of my daughter being labeled a medically complex child is that her tonsillectomy will now be done at All Children’s Hospital because they are equipped to handle issues may arise from her other medical problems. As difficult as this label is for us to absorb, in a way we feel safer because doctors will double check or triple check their treatments. Perhaps this is a false sense of security, but for now, it is how we are coping.
Do you have a child who is medically complex? What are your feelings as a parent?