Mom or Medical Detective?

When new symptoms crop up, I go into ‘medical detective mode,’ following one clue to another until I have a working theory to test. But sometimes I just want to be my kids' mom — not pretend I'm Dr. House or a clinical case manager. Is that so much to ask?
Be Our Guest | posted by Kelly Emanuel, MPH
Decoding Symptoms in Children with Multiple Diagnoses

My children both live with multiple diagnoses — and symptoms that overlap and get tangled every single day. I don’t always know how to help them, or even who to ask for advice. And there’s nothing more frightening or frustrating than that feeling of helplessness when your kids’ health is at stake. But then I don’t need to tell you that.

I was a project manager in a previous life. In that role, I excelled at getting all of the experts in a room, discussing the problem, clearly stating the options, and selecting the best course of action. I got stuff done. I checked the box. I miss that feeling.

When it comes to healthcare, I have to fill out forms and then cross my fingers that our various practitioners will talk to each other. Those conversations are rare. OK, who am I kidding? They’re nearly impossible. If I get a letter sent via fax or mail, I’m happy.

It’s true that some restrictions prevent therapists from co-treating; they can't charge for the same patient during the same time, or the claim will be flagged. I get that the insurance companies and the government are trying to prevent fraud, but sometimes getting two specialists in the same room at the same time is what’s legitimately best — and cheaper in the long run.

But nobody looks at the big picture anymore, so instead of convening one assessment/troubleshooting session, I have to waste time, energy, and money by making multiple appointments and bouncing around from therapist to therapist, doctor to doctor, repeating the same problem and symptoms over and over again. Invariably, I'm told it's not their area of expertise or that I should see what some other specialist thinks. I make more appointments just to relay all of the same information all over again (all while trying to keep my kids occupied and entertained in the most boring environment imaginable).

Right now, I'm dealing with two new (and very frustrating) symptoms in one of my kids. The first issue: One of my kids is having trouble recognizing thirst, hunger, and the need to use the bathroom. Our pediatrician said these kinds of issues are common in kids with ASD and ADHD. And that was that - as if "it's common" was a satisfactory answer. I asked what I should do to help resolve the issue. The response was a blank stare, followed by some cursory recommendations to set timer reminders to eat and drink, use potty watches, and give edible reinforcements. When I explained we had already done that and then some, and that nothing was working, he suggested asking our occupational therapist. I said I already had. I actually had asked four different ones, and I explained that they had recommended the same types of things - all of which, you know, aren't working. He had no further suggestions, other than to just give it time.

I'm done giving it time. Something is going on. This is not typical potty-training stuff.

So I set off to do my own research. I'm grateful for my background in public health, online medical journals, and Facebook groups of parents also using biomedical approaches. I remembered that a history of gastrointestinal issues could lead to stool withholding and, ultimately, encopresis. So I worked with a pediatric gastroenterologist, who recommended putting my kid on laxatives indefinitely. This is hardly a long-term solution in my mind. No one should have to live on laxatives (even if the doctors say they are "safe"), so I explored behavioral therapy next. Some behavioral therapists said, "It's not a condition they handle", while others wanted to charge a small fortune for play therapy (they didn't take insurance). I'm familiar with play therapy - and while useful for some things - I wasn't convinced that it would help in this case.

So my research continued. It took some time, but thankfully, I found new leads. I learned that ALL of the issues with thirst, hunger, and recognizing the need to use the bathroom could be related to the interoceptive sense. If your kid has sensory processing issues, you probably know about the proprioceptive sense and the vestibular sense. Well, it turns out there is another sense called the interoceptive sense that deals with body regulation issues like these, which can be influenced by a number of things, including the body's fascia, the vagus nerve, retained primitive reflexes and mast cell activation. So now I'm looking into ways to cross those suspects off my list. I found a new occupational therapist and we will likely start the iLs (Integrated Listening System), which may address these body regulation issues. Maybe, just maybe, this will work (fingers crossed).

The second issue: One morning, my kid started blinking excessively. I didn't think too much of it that first day. But when it didn't go away after a couple of days, I started to get worried. It didn't happen all the time, but it was definitely new and not usual. I learned this could be considered a facial tic, and that facial tics can be traced to anything from magnesium deficiency to PANDAS to Tourette's to excessive sinus congestion, which seems to be a never-ending problem, too. Who knows? It could be any of these things.

And which kind of doctor can help me figure this out? Luckily, I had found a new neurologist who is willing to do some testing (more on the trials and tribulations of finding a good doctor in my next post). This neurologist seems great, as she is not quick to medicate and is willing to look for and rule out underlying causes, including testing for vitamin and mineral deficiencies. We don't have the results yet and we are still waiting for our EEG appointment. I'm hopeful we can get to the bottom of this one soon, too.

So for now, there's no wrapping this all up in a neat little bow and saying, "Case closed." As much as I hated it when any of my favorite detective shows did this, the best I can do is, "To be continued…"

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