So, we’re using brain imaging, now what? I think the most important impact brain imaging has had for us is mindset and expectations.

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When we were analyzing symptom sets before brain imaging, we were doing our best to conclude why things were happening, but his inconsistent symptoms made this feel like were aiming for a spastic, moving target. For Ty, he comes across very high functioning until he doesn’t. Because he could do things sometimes, we held him accountable to his highest level of performance all the time. If he had completed 25 addition problems with carrying flawless one day, then he was held accountable to that skill the next day, and when he couldn’t do it, I would dig my heels in, frustrated as all get out, and insist he could while he insisted he couldn’t. The same pattern would follow when he all the sudden couldn’t remember basic routines like getting ready for bed (changing clothes, brushing teeth, toileting) or failed to remember to use his fork when eating. We’ll not even mention the holes in critical thinking where he can’t recognize a comma across different fonts or can’t figure out to not wear the boots that make his feet hurt E.V.E.R.Y. T.I.M.E. he wears them. The frustration levels were palpable and we were not being successful connected parents.

Enter brain imaging. We learned that he has a significant deficiency in the brain wave frequency that is associated with critical thinking AND occasional spikes in brain activity that cause his brain to basically go offline for a moment and then not function at peak capacity for a recovery period.

I’ve talked about “can’ts” versus “won’ts” in kids before, and I’ll be the first to admit that giving them the benefit of the doubt is hard and goes against everything I believed about parenting before parenting kids from hard places. However, objective brain image data that explains all the quirky nuances of your child’s behavior can be a game changer.

Now instead of digging my heels in during math, if we hit a brick wall, I assume he’s having a brain activity spike, and we just put it away until the next day. If he continuously struggles with a specific concept, I think really hard about whether or not he’ll REALLY need it to function in life and decide if it’s worth getting hung up on or if we should just skip it.

We’ve learned to be proactive about avoiding his pitfalls. I assume he needs a lot of review and reminding…even about basic routines. In situations where impulse control will be an issue, I do my best to remove temptations.

Brain research also tells us that because we know exactly what is malfunctioning in his brain, we can use treatment modalities that can rehabilitate it, so we’ve been doing regular neurofeedback to help awaken those missing brain wave frequencies and banish those spikes.

Lest you think, it’s all sunshine and roses now, it’s not. While my head knows how to steer the expectations ship, it’s a slow-moving vessel. Also, what my head is telling me to do takes lots of energy, patience, and did I mention energy? Plus, rehabilitating the brain is slow work that requires a lot of therapy appointments which take more time and energy. That just means that we definitely have days that are better than others.

To an outsider, the way we structure his life may seem silly, extreme, and unnecessary, but it’s what works for him.

Lastly, a word about diagnosing. If a diagnosis will get you better services at school or through your county or convince your insurance carrier to cover treatment, go for it. In some cases a diagnoses may also serve to protect your child when he becomes an adult and still has his troubled brain. However, for day-to-day living, I’d much rather know exactly what is going on in his brain so I can work at the source rather than throw darts at symptom clusters.

Have you used brain imaging in your family? What say you?

Does anyone else see the irony in diagnosing a person based on self-assessment who is a self-proclaimed pathological liar?

Then there’s the problem of overlapping symptom clusters. What do you do with a child who often does not follow through with instructions, has impulse control issues, is emotionally volatile, has difficulty problem solving, and struggles with relationships? Based on this chart, he could have FASD, Autism, and/or Bi-Polar disorder.

Even if someone is willing to make a definitive diagnosis, then what?

If FASD is suspected, “There’s no cure or specific treatment for fetal alcohol syndrome. The physical defects and mental deficiencies typically persist for a lifetime.” [1]  Basically, you just arm yourself with coping mechanisms. Treatment for those on the Autism spectrum usually consists of therapies to help minimize the impact of the behavior symptoms. Sometimes nutrition or medication therapies are also used.[2]  Traditional bi-polar treatment consists of medication and various forms of psychotherapy.[3]

The treatment modalities have few overlaps compared to the symptom clusters. It’s very possible to mistreat.

Enter brain imaging. You need to watch this video. It should probably play periodically on the emergency broadcast channel as a PSA.

We have been blessed to find a practice that uses brain imaging and is helping us connect what we see behaviorally with information about what is actually happening (or not happening) in Ty’s brain.

Here are some key highlights with approximate time stamps and my commentary…

4:30 Diagnostics in psychiatry haven’t changed since the 1800’s and continue to be just symptom-based.

See discussion above on why this is so concerning.

5:00 “Psychiatrists are the only medical specialists that virtually never look at the organ they treat. Psychiatrists guess.”

It’s okay if you need to pause here and just let this sink in. It boggles my mind that psychiatrists were criticized for wanting to use imaging technology.

6:15 The same symptom clusters can come from completely different brains.

This make sense. Like vomiting can be caused by food poisoning or a virus. Same symptom, different “brain.”

6:48 Mild traumatic brain injuries is a major cause of psychiatric illness.

How many people have had a solid bump of the head and went on with life and never thought anything of it? And certainly didn’t link it to any mental health struggles. When we did our intake for our children’s brain imaging, I was shocked at the bumps and bruises they were able to jog out of our memory banks and, further, that they thought those things could be contributing to behavior symptoms.

9:00 The link between criminal behavior and troubled brains begs the question, “What if we evaluated and treated troubled brains instead of warehousing them in toxic, stressful environments?” The research shows that troubled brains can be rehabilitated.

Treating troubled kids with behavior modification and medication is like putting a paraplegic on meds and a walking program and then jailing them when it doesn’t work. Further, so many conditions that we’ve generally assumed were incurable, may actually have a path to rehabilitation. Imagine the possibilities.

Was this video an impactful to you as it was for me? In my next post, I’ll chat about how brain imaging has shaped our treatment plan and why I think having a diagnosis could still be important.

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In the meantime, please help get the word out about brain imaging in psychiatry. The future and safety of our children and our world depend on it.

In our area, parents can request a mental health evaluation at the local emergency department at any time. We voluntarily initiated this process once, and the police required it twice. (As a side note our local police department will transport an unwilling youth for a family if they wish to have a mental health evaluation completed.) No matter the way you end up in ER, the next part of the process is the same. Once the mental health evaluator and pediatrician on call agree that admittance to an acute psych unit is necessary, the parents agree to wait with the child on site at the hospital until an appropriate bed is found. This has kept us in the ER for a minimum of 12 hours and up to 40 hours. The first time it happened, we were completely caught off guard. I left the ER after 12 hours feeling like I’d been hit by an 18 wheeler between the lack of sleep and the emotional toll of deciding to take a flying leap onto the slippery slope of adolescent psych hospitalizations. By the third time, I was prepared. If, God forbid, you are on a similar journey as us (and I know y’all are out there), here are some things to consider taking to the ER so you can make the most of a crappy situation:

1. Entertainment: For me, this is my laptop and a book. The ER where I’ve spent the better part of the last 6 weeks has free WiFi. If you’re going to be stuck in the same waiting room for possibly days, you can at least get some work done. If 40 hours of screen time makes you twitchy, that’s when you’ll want that book.
2. A pillow: The first time I didn’t know I’d need this. The second time I was kicking myself for not having one. The third time, I had a small travel pillow with me and slept like a baby…a sleeping one. Don’t be shy. Feel free to ask the nurse for an empty room. You might actually get real sleep. Hospitals usually can supply you blankets so that’s one less thing you’ll need to tote around.
3. Cash: You may be eating out of a vending machine for days. Our hospital vending machines accepts credit cards, but you should probably have cash just in case. Alternatively, keep a phone list of friends who live close by and would be willing to bring you real food.
4. Toothbrush: I’ve failed to have this, but it sure would’ve come in handy after hour 15.
5. Water bottle: Styrofoam cups and plastic straws will do in a pinch, but if you have something of your own that the nurses can put water and that awesome, soft ice in, you’ll feel more like yourself.
6. Phone and charger: I know most of you have these on you ALL. THE. TIME. But you will probably have to make lots of phone calls to rearrange schedules, update home, and coordinate additional and/or future care. If your child refuses to see you, the staff will also need a way to contact you to find out where you’re hiding out in the hospital should they need you.
7. List of meds, insurance card, name of pharmacy, and other pertinent info: This may seem obvious but they’ll ask you for them OVER and OVER and OVER again. Now that I mention it, you may want to keep a typed copy of the narrative you give when they ask about why you’re there. Or memorize a 30 second elevator version.

If the cards play out and you end up going to the ER from being out and about (as often happens), have a spouse or friend bring you your “GO” bag/items. Or, if your life is like ours, you may just want to have your “GO” items with you at all times.

What is your advice to families walking through crises?