Opinion Piece: Crowdsourcing Your Child’s Medical Care Is Not a Good Plan

Before you read the “opinion” section of this post, please peruse these five statements:

1. The internet can be an excellent source of information, advice, and comfort. Most days, I spend several hours collecting ideas and cyber-talking with other parents across the web.

2. I am very, very fortunate that I have money available (including insurance reimbursement) to pay MD’s, ND’s, homeopathic practitioners, and therapists. I recognize, honor, and pray for families who want to treat their children biomedically and/or homeopathically but lack sufficient funding to do so; when we have recovered Martin, I will find some way to provide material assistance to those families.

3. I am not in the business of judging other parents’ choices. I do have an opinion about how to treat ASD in children, and I act upon that opinion by, in consultation and agreement with my husband, treating our son as I see fit. I expect other parents to do the same. Unless you are neglecting your child, or actively attempting to harm him, I respect your choices.

4. Recovery from ASD, asthma, allergies, ADD, and ADHD (et cetera!) remains an emerging science. Laboratory studies have not kept up with what’s going on in the field. Because of that, the trial-and-error and “experimentation” factors may be even more significant in these areas than elsewhere in medicine.

 5. I am not aiming to inject acrimony or discord into the on-line ASD recovery community. This post, like every post on FindingMyKid, is selfish. I’m discussing my son’s progress and expositing my thoughts, in hopes of (1) documenting the recovery process, and (2) fomenting ideas in readers. I think that’s what blogging is about, documenting and fomenting. I hope I don’t lose readers over this post.

End of disclaimers. Beginning of opinion section—

I belong to several Facebook groups dedicating to recovering children. Many parents (or grandparents and other caregivers) write posts among these lines:

•      “My son has this itchy rash over a quarter of his body.” [Insert picture here, usually something that I don’t want to see in my Facebook feed because I have an absurdly low gross-out tolerance. Seriously, if I think of something icky, I can’t eat for hours.] “What could this be? How should I treat it?”

•      “I just received the results of my daughter’s” [insert name of test here, such as 23andMe genetics, Great Plains Labs OAT, or Philippe Auguste toxicity] “results.” [Insert copy of lab results, (not always) with child’s name redacted.] “Can anyone help me interpret these and figure out what supplements to order?”

•      “This week we started” [insert names of supplements, oils, or medications] “, and suddenly my son is melting down every ten minutes, stimming like crazy, and pooping all over the house, even though he’s toilet-trained. What could it be?”

I think these types of posts are a bad idea. Not because the parents/caregivers are reaching out for others’ experiences, but because I suspect many of them are substituting internet wisdom for actual medical advice. Three weeks ago I saw a video post of a child in the throes of an obvious grand mal seizure. The accompanying paragraph stated that the seizures were new, continued that the child had begun experiencing multiple seizures every day, and sought advice on how to handle them. My horrified reaction was, “Are you kidding me? Get off Facebook and get that child to a doctor.” (I did not post my horrified reaction. Should I have?)

It is true that the “medical establishment,” in general, lags behind parental experience when it comes to treating autism. Indeed, if I may speak for the medical establishment, its position still appears to be that there is no treatment for autism. Martin’s former pediatrician, from before we moved, never understood what we were doing with Martin’s autism doctor. When I asked the pediatrician what she knew about biomedical intervention for autism, she replied, “Nothing. Just what I’ve heard secondhand, which is that it doesn’t work.” (Still, she never stood in the way of our biomedical journey. I respect that. Also, one of her practice partners was nothing but interested in what we are doing to recover Martin.)

Facebook parents are great. In some areas, they may know more than doctors. But they are not doctors. And some of them are also misinformed, or downright crazy. (Sorry, readers. Deep down, don’t you know it’s true?) I dedicate a lot of my time to reading books and scientific articles about autism, attending medical conferences, and researching on-line. None of this takes the place of spending four years in medical school, passing medical boards, and completing a residency. None of it gives me a comprehensive perspective on health, or the ability to make competent medical decisions for my child without the assistance of a doctor. Heck, to be honest, I don’t even understand some of what I study about autism. I’m more of a humanities type of gal, one who took “Chemistry for Non-Science Majors” to fulfill her college core requirement.

Which brings me to my point: If you can in any away avoid it, crowdsourcing your child’s medical care is not the best choice. The medical establishment does not represent all doctors. There are credible professionals who both (1) understand immune disorders like autism and how to overcome them, and (2) hold medical degrees. Use Facebook and your other contacts to find one of these professionals. Do your research, read a lot, and bore yourself with medical science with the aim of making sure that you find a professional you can trust. If you need to, try fundraising to cover the costs of the consultation. That can work—I know parents who’ve managed it. Seek a Generation Rescue grant. Go into debt. (It happens. We live in the real world.) Whatever you have to do, try to bring your child to a medical professional at least occasionally. Please.

The benefit of living in 2014 is that, at least in some small measure, and Martin’s former pediatrician notwithstanding, more doctors are starting to get a clue. Parents who recovered their children ten years ago, or even just five years ago, had far fewer choices than we have today. Let’s take advantage of that. We can rely on fellow parents for empathy, guidance, and encouragement. We probably should not count on them to be scientists.

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