Can you relate to the ever-present pull of the internet when you want more information? After all, when your child is sick, you feel helpless as a parent. You want to do everything you can to make them feel better.
But what happens when it isn’t as simple as putting them in a lukewarm bath or giving them some Tylenol?
For me, it’s a constant internal battle not to over-research when it comes to treatment options for my oldest. She has a rare form of epilepsy called ESES. It results in an extremely high level of brain activity during non-REM sleep. This activity causes all sorts of other challenges during waking hours.
After three overnight EEGs in the hospital to observe her and two intense medications to try to stop the ESES, we have only a couple of other treatment options . . . or so my frenemy says.
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The neurologists have been somewhat communicative with us following her EEGs and have mentioned a couple of other potential treatments. The doctors haven’t gone into great detail about those treatments yet. We’ve been left to wait until the medications are out of her system and she is back to a “baseline.” Then we can discuss next steps.
You know who has gone into great detail about those potential treatments, though? My dear frenemy, the Internet.
“She” tells me that we can try a ketogenic diet or neurosurgery and that we have exhausted all other options. “Okay,” I tell myself. “If these are the only options left, then I need to know everything there is to know about them.”
“She” tells me that the keto diet has been shown to have very encouraging results as an alternative form of treatment for seizure disorders and epilepsy. This leads me down the rabbit hole of learning about the keto diet. After all, it is far less anxiety-inducing to consider a change in diet than to consider my child having brain surgery.
Keep in mind that this is for a five year old!
Have you met a five year old before? If you’re reading this, then I’m confident the answer is “yes” and that they were likely snacking on a bag of goldfish or eating a plate full of buttered noodles while you were talking to them, neither of which would be allowed on a keto diet.
After all of my late-night research sessions with my oh-so-knowledgable frenemy, I am fairly confident that the neurologist is going to recommend the keto diet. They might mention the possibility of neurosurgery. But, I feel that it is safe to assume that is going to be a “last resort” sort of option.
“Okay, we can do this,” I tell myself, thinking about having to prepare multiple separate meals for her every night.
In the back of my mind though, still looms this comment from the doctor the last time we spoke:
“Let’s regroup in a few weeks and decide if we think further treatment is needed, or if she can just live with ESES.”
Excuse me? Just live with this crazy form of epilepsy and continue to see stagnant development and deal with calls from her school about behavioral problems (which, yes, are a result of the ESES), and, and . . . No thanks. That is NOT an option for my child.
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With that comment lingering for the longest eight weeks of my life, aside from maybe when I was in my last trimester of pregnancy, I can’t stop wondering about who is researching ESES and where should we go for a second opinion if the neurologist makes that recommendation.
Unfortunately, even my frenemy cannot seem to help me with this one.
I finally have to tell myself to just stop. I’m tired. My mind is tired. My brain hurts from trying to find all of the answers. And my body is physically exhausted from spending too many late nights on this.
Thanks to my frenemy, I have educated questions to ask the neurologist when the appointment arrives. And I will be ready to listen with an open mind. Will I follow the doctor’s recommendations blindly? Certainly not. I also won’t go in thinking that the internet and I know better than someone who has studied for half his life to make these sorts of recommendations.
The need to keep from using “Dr. Google” to diagnose our children is something that all parents have to manage. For parents of seriously ill or disabled children, it is even more important AND even more difficult to manage. Advocating for our children, in some form, is something that many of us will face or have faced.
It can be hard to know when you’re crossing the line and thinking that you know better than the experts because of what you’ve found on the internet.
“She” can empower us to ask great questions and can equip us with the confidence to speak intelligently on new topics. But “she” can also be incredibly dangerous. Internet research is opening Pandora’s box. It is Adam and Eve eating from the tree of the knowledge of good and evil. It is a snowball rolling down a hill.
Be smart, thoughtful, and patient, mamas. Trust your gut and never be afraid to advocate for what your child needs. Know that the answers will come with time and that not all answers that our “frenemy” gives us should be trusted.
The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of ABQ Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.
