In the past year or so I’ve been around a lot of other parents whose kids have significant medical needs. I’ve learned a lot from them, and I hope I’ve done my part to share what I’ve learned with others. The value of this kind of relationship can’t be described in words. Over time you learn who is trustworthy and who isn’t. Until then, be sure to run suggestions by your child’s doctor. It’s unlikely anyone out there would intentionally try to harm your child, but there’s an overwhelming amount of misinformation circulating online.
Anyone can create a website. Literally anyone, and at no cost. There are a lot of great resources out there, but some are written by people unqualified to make the claims they’re making. Even if something is a valuable piece of information, there are frequently times where what works for one child may harm another. When people search for information on the internet, some of it inevitably comes from these feeder sites which claim to be an authority on their topic. This information is then shared by mouth as well as through reputable aggregation sites.
Most of the time the information simply provides no benefit. Unfortunately, it does occasionally cause harm. Some of these sites don’t include warnings such as, “contact your doctor,” or “go to the emergency room if you’re experiencing..,” because the person making the site doesn’t have the medical background and healthcare experience to know these statements are necessary. I’ve had multiple mothers come on in a support group and ask if they should take their kid to the ER. Why? Because it’s, “a long drive,” and they don’t want to make a unnecessary trip. Who told them the trip might be unnecessary? Some website they found through a search engine. Is it necessary? Every person whose opinion I respect in that group thought so.
Aside from erroneous resources, there are also parents that present themselves as experts on an entire subject because they’re an expert on their kid. These parents are frequently wonderfully supportive and valuable resources, but they don’t have your child’s medical history in front of them when they provide advice. What’s the harm? Well, they’re adamant about their opinion and convincing in their arguments because they truly believe they’re correct. However, they can only make a judgement based on what you give them. Does a kid with a fever need to go to the ER? “It depends, probably not.” Does a kid with a fever and a TPN line need to go to the ER? “Why haven’t you left yet?” The point I’m trying to make is, even experts can only work with what they know, and as complex as special needs kids can be medically it’s impossible to communicate all the important information over the internet.
Please, for the health of your child, be careful where you get your medical advice. It’s wonderful to have so many supportive mothers out there willing to help. There are also many legitimate websites with truly invaluable information. Let your medical team help you sift through these resources and find the ones you can trust.