Occasionally, my friends in the juvenile arthritis group on Facebook vent about something stupid that was said to them, often with the best of intentions. Another frequent complaint is about uneducated relatives, or even worse, those relatives with some medical training but absolutely no clue about juvenile arthritis. Inevitably, every JA parent will run across someone that knows about a “cure” or criticizes our choice to medicate our children in spite of possible side effects.
My favorite “cure” is to soak raisins in rum, then give a dozen or so to the child. Hello? Give rum to a child? What planet are you from? Don’t you think if there were actually a cure that maybe one or two doctors might have actually heard of it? Yes, some kids are lucky enough to reach remission, some even without medications, but none are actually cured.
Sometimes a well-meaning relative will research the medicines we choose to give our children then proceed to warn us about the side effects. Yes, every JA parent knows there are risks with these medicines, both the disease modifying anti-rheumatics and the more powerful biologics. We as parents weigh those risks against the expected benefits and make an informed choice. Informed about risks of medicating, as well as what could happen if we don’t medicate, like joint erosion, permanent disability, and even blindness and death. We as parents make the best decision we can with the information we have.
Another common occurrence is comparing the treatment of a severe case of JA with a milder case. Fortunately not every case of JA is life threatening, but some are. Approximately 10% of juvenile arthritis cases are the systemic type, which can be challenging at best, deadly at worst. This is the type Marty has. We found this out when he had life threatening pericardial and pleural effusions. Even in kids that don’t have the systemic type, things like blindness, intestinal issues, and permanent joint damage are very real threats.
Yes, there are various lifestyle and diet modifications that actually ease the symptoms for some. I have friends that swear by gluten free diets, massage therapy, a particular exercise, and other more natural approaches to autoimmune arthritis. If those methods work for them, I am glad. Marty’s case is too severe for me to feel comfortable stopping his medications to try something like that. If he had only a few inflamed joints and no eye or organ involvement, I might consider it.
I guess my point is, that it is the parents that have to make those choices. They are responsible for their child’s health and nobody else. Not grandma who is a nurse, not aunt Mabel who has lived with osteoarthritis for 15 years, not the clerk at the natural food market that is very knowledgable about vitamins and supplements, and not another parent whose child is in remission. Yes, you can ask these people for tips and advice, but you, as the parent, are ultimately responsible. If someone else doesn’t like your decision, they can just go sit on a block of ice and chill.