SUSPENDED, part 2…

… “we saw the spiral and watched helplessly as he unraveled.” We didn’t just sit back and watch this, I started making phone calls as soon as the backsliding began. We recognized we were having more problems, we recognized we were losing ground and so started that mindless round of phone calls for the hundredth time in our story.

Pause for a second and ask yourself, “if my kid was sick, (medically or mentally) where do I go? If my kid is failing at school what do I do? Common sense tells us, Step 1 – make an appointment to see your doctor, Step 2 – speak to the school, get a plan in place, start solving problems and Step 3, find a counselor!. Sorted and done!! Yeah, Go Me!! I assume everyone would think these steps were necessary, smart and responsible. But what if your doctor has no experience with this medical condition? What if there are no providers who see kids like this or worse – no one (after screening your issue) is willing to take on your child? What if you find someone but they shrug, shake their heads and admit they don’t have any solutions? What if everything a willing doctor tries – fails? What then? What happens when you have already exhausted all THE “doctors.” Any parent with a predominantly neuropsychiatric presenting child realizes, there is no cavalry, no magic pills, no miracles instead there is a mind-blowing feeling of failure, of phone calls that end in “no sorry”, there are no resources, no solutions, really long wait lists, inadequate care and lack of insurance providers and coverage.

During those weeks of panic, we were turned away (again) by Duke’s Brain Inflammation Clinic, their issue “IQ has not dropped,” except it has. FSIQ has dropped from 124 to 86 but … I also reached out to other departments there who might help – Neurodevelopmental, Neurology, Autism and Brain Clinic (fully booked, no waitlist, not taking new patients), then another call to Miami Children’s hospital who has had a referral for us since July 2017 but still no appointment. We have already been to DC, NY, NE, IL, CO, NC and SC and then this summer, the CPAE clinic in Arizona hoping against hope that perhaps that appointment would help us unravel a little more of the mystery we have going on here. We went, we came home, it didn’t change anything for us. At this point, we need Scooby Doo on the case, a medical mystery, too far out from the initial whatever and no one sees us worthy of treatment (beyond psychiatry which remember we have continued to slog that magic treadmill of medication – fail, new medication – fail, therapy, therapy, drain the last of the 401k, fail, fail, fail, …..). Currently, we are in Florida, but that’s a story for later.

My point? Doctors are not sitting around waiting for medically complicated patients; in fact, if you are a complicated patient, just expect there will be no place to go. Worse, there is a real danger for many parents that they will be called into CPS or their child will become a medical ward of the state. Every single parent who exists in this long-term vortex of challenges expects to be the subject of conversations or inferences of Munchausen syndrome by proxy or abuse. The more you feel ridiculed and ignored, the less you desire to put yourself out there.

It is a hopeless, frustrating, isolating challenge but one that myself and many, many other families have no other choice than to tackle head-on. Our children’s lives and futures are literally at stake.

We should be scared to know that 70% of children in Juvenile Justice meet the criteria for a mental health diagnosis. YES, SEVENTY PERCENT. “Children with mental health needs sometimes enter a juvenile justice system ill-equipped to assist them. Between 65 percent and 70 percent of the 2 million children and adolescents arrested each year in the United States have a mental health disorder.” (Juvenile Justice Guide Book for Legislators)

We now know that some (perhaps many) of these children could recover from a mental health challenge if a post-infectious autoimmune encephalitis-type disorder is discovered as responsible for the mental health disruptions, the bad news is that these disorders are incredibly challenging to get diagnosed regardless of how much evidence there is pointing to possibilities for recovery if this is addressed: “One of the databases stores health-related information, including records of hospitalizations. Among Danes born between 1945 and 1995, almost 92,000 had a mood disorder. Of these, 36,000 had suffered a severe infection or developed an autoimmune disease (such as type 1 diabetes, celiac disease, lupus, and the like) at some point before being diagnosed with the mood disorder.” (Harvard Health Publishing).

Anyway, we consider ourselves lucky because we subsequently managed to get a round of steroids, and then the holy grail – IVIG approval and for 17 sweet, glorious days, life was pretty awesome. While some challenges remain, improvements have continued as far as 3 months out but now we know it is probably getting time for a 2nd infusion.

There are many steroids vs Lyme cautionary tales and so when this proved a successful treatment for us, we also happily faced the idea that LYME is truly “in remission” in our house. We are now one year into the NE LYME Laser protocol and our plan is to stay on maintenance. We have actually had new tick bites since the protocol began but not seen any new LYME symptoms.

My feelings surrounding that school incident? Anger mostly, certainly not at B but at the lack of care we have been afforded. A decade-long medical challenge and lack of access to care impacted reasoning skills and has left some impulsivity, it’s hard to not see negative outcomes following in the wake of that. Rationalizing with a toddler that negative attention is not where your best interests lie, is different when trying to rationalize the same with a teen. Typical 14-year-olds are engaged in society, perhaps in clubs, active in the community they live in, but this is not the case with children who have mental health challenges. These kids are often socially isolated and many kids end up just dropping out of school altogether. Complete school refusal is common. Perhaps these kids don’t have the capacity to engage in clubs or join ongoing social activities, attending school may just be emotionally and physically exhausting enough.

We were happy to scrape through to graduation. In between, there was a visit to the alternative public school program that was not for the faint at heart (a program for kids who struggle but not a mental health professional in sight which seemed an alternative school failure in itself. A punitive program which to us equaled a lost opportunity for all the kids placed there). What did we expect? Lots of people suggest sending kids who struggle off to military school or wilderness camps. But think about that from a family perspective. I should want to send my medically/mentally fragile child away to a place where he sees his family once in a while, where strangers are managing every second of his/her fragile ego? Parents don’t actually want to send their kids away. The idea that the solution to a struggling kid is to place them outside their home, remove access to those that love them the most (as if we are the issue), and treat the child as if the mental health condition is their fault while of course magially medicating their issues away … is such flawed thinking.

So we should all be angry, angry at the doctors who have refused to see PANS/encephalitis kids, angry at the ones who get it completely wrong, really angry at the ones who accuse parents of being inept or naive, dismissing families without caring that there is nowhere else to go. Of course, for encephalitis, there are those that work outside the insurance model (that the PANS community is eternally grateful for), but once the money runs out – what then? There is limited access to group counseling, therapeutic schools or outpatient programs. All programs that we know work to raise self-esteem, teach problem-solving and positive coping skills. Programs that keep families intact, keep children at home at night in their own beds get them access to therapies, groups and provide teaching moments every day, these programs are practically none existent.

As a society, we trust doctors can fix what ails us, we see it on TV all the time. We are in America, heck that puts us ahead of the curve right? Except anyone who has a serious illness realizes that doctors are people too. They don’t have all the answers, they are tied to insurance company mandates, long hours, harsh penalties for getting it wrong, no magic wands or access to miracle drugs (even if we want to believe they do). In 2014 CBS News ran a story on how often doctors get it wrong. “Each year in the U.S., approximately 12 million adults who seek outpatient medical care are misdiagnosed, according to a new study published in the journal BMJ Quality & Safety. This figure amounts to 1 out of 20 adult patients, and researchers say in half of those cases, the misdiagnosis has the potential to result in severe harm.” Imagine how many children, inadequately able to describe symptoms, with parents who are often seen as histrionic and delusional, get misdiagnosed? Being taken seriously is the battle, we need medical and therapeutic programs in our communities to help these children manage what is happening to them.

Again, ideally, therapeutic day programs with group therapy and intensive individual therapy would give these kids a chance to figure out who they are while having access to medical care to sustain recovery. But this isn’t happening anytime soon, perhaps never. Twenty years from now, when we look back at how the medical community failed to recognize that infectious, bacterial and viral triggers affect the mental health of children, we will know it was their fault that for several generations families with medically fragile children were left to navigate really challenging situations with limited resources which is/was a recipe for disaster.

“Children with mental health issues will have a difficult time acclimating to different situations. Studies have shown that these children, if left untreated by a mental health professional, will likely to grow up and repeat these same behaviors with their children. These children tend to have a lower self-worth, negative feelings, perform poorly in school, and later become involved in unhealthy lifestyle decisions. However, when these children are properly treated they can learn how to live a more promising life. They can overcome many of the issues that affect them without their consent. These children can live happy and productive lives that are filled with love, harmony, and a great mental health status.­” Kids Mental Health