Neuroimmune CME Series
This is truly a unique opportunity [Read more…] about Unique Opportunity: Neuroimmune CME Series
This is truly a unique opportunity [Read more…] about Unique Opportunity: Neuroimmune CME Series
… “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
sus·pend səˈspend/Submit verb past tense: suspended; past participle: suspended [from school]
1. temporarily prevent from continuing or being in force or effect. “work on the dam was suspended” 2. hang (something) from somewhere. “the light was suspended from the ceiling”
Not long before the anticipated end of the school year, we had what one might term “a tough day”. I got a call while in the carpool line and I was asked to come into the office. While I have had many of these calls over the years, I had no idea this one was more serious than the others. More serious than the time he put paperclips in the electric sockets, more serious than the time he ate every piece of paper they placed in front of him, more serious than his books hidden behind the fridge in the resource room, more serious than him running through a parking lot after escaping summer camp, more serious than hiding in closets crying incoherently while they try to make him do his work, no now he is 14 everything is more [Read more…] about Suspended From School
(and probably the rest of the world… my perspective)
This week another mass shooting in a school by a child (almost adult) whose story is not yet fully known but already presumed mentally ill. The “he was different” conversations and the words “adoption, and fetal alcohol syndrome” have already been bounced around. People want answers – they need to rationalize why. If we can see this person as an anomaly, if we can blame it on mental illness then we can pretend this is beyond the realm of a “typical” person and move on knowing it wasn’t our fault.
First, we must pause, we need to remember all the children and adults who have died from this violent act. We must remember and pray for those parents and spouses who will never see their loved ones again, all those hopes and bright futures washed away in a second. The sadness surrounding that for me is palpable. I can’t fathom the depths those families will reach while going through the predictable stages of grief. I think it would be my nature to remain stuck in anger and disbelief and so I pray these families are able to move beyond those basic emotions, simply for their own healing going forward.
Hearing and reading reports of the tragedy, I am struck by the words describing the children who lost their lives. So much to be proud of, it makes me think “those characteristics are what I want in my child”. The words all describe hard-working, productive, motivated children. That’s how I would want my child to be described if someone was talking about them. “Kind, enlightened, joyful, hard-working” all positive adjectives to describe the children who are gone. Bright stars taken by someone who had no control over his emotions, someone who was the total opposite of those he killed.
The words describing the shooter are all antonyms “weird, odd, loner, obsessed” words that help us rationalize and comprehend something this heinous? We know that the police were often called to his house as a teenager and we also know this boy “lost his mother to pneumonia in November last year, and his father many years ago.” These are not EXCUSES, there are just no excuses for what he did yesterday. His lawyer describes him as a broken, sad human being, it is a description that may make sense to us but being sad and depressed does not explain why he did what he did. At best, it gives us a little more insight but what he did, most of us can only imagine in our nightmares. What possessed him to act out his sadness this way? That’s the question that scares me more than any I could ever ask. What drives a depressed teenager to commit mass murder? Is it driven by anger? Is it an obsession? Is he delusional? I am trying hard to understand because I want to know in my heart that not just any depressed teenager is capable of acting this same situation out over and over again?
So I also wonder – did he have a mental health condition and was he being treated? Perhaps if he hadn’t lost his mother, if he wasn’t adopted, if he had no access to guns, or a combination of any of these things, would this have happened? If he had gotten more mental health counseling would this have happened? If he had additional support would this have happened? Did the school have more responsibility to think ahead about what might happen? Of course, there are no answers to these questions now, none – but it won’t stop me wondering and worrying about my own children and their plight. For this boy, we cannot go back and rectify what he did. There is nothing to be done, 17 bright souls are gone, one angry shooter is left and somehow we have to make sense of that disparity.
Now we must focus on what we can do in the future so this doesn’t happen again or is this situation so complicated it’s difficult to think of or implement any “good” solutions?
Anyone who has a child struggling with their mental health knows that access to care in this country is incredibly difficult to find, long waits, no providers, differing theories, scary side effects to pharmaceuticals, no beds, mistakes, ambivalence, it feels like so many barriers. This may be true in other countries also “In the United States, for example, only about a third of people with severe depression take an antidepressant. In South Korea, where antidepressant use is the lowest among the countries analyzed, the suicide rate is the highest in the developed world.” Business Insider
Not seeking help which ends in suicide is terribly sad, but suicide is very different from committing mass murder!
So perhaps struggling with an undiagnosed mental health condition AND gun availability in the US is to blame for our current woes? But where do these kids get their guns from? It seems a gun is just a tool for a job, the bigger issue is why these kids want these kinds of weapons and what their mindset is for acquiring them, if they couldn’t find a gun would they then source a different weapon or would they just not go ahead with their plans?
When you have a child with challenging behavior, as a parent you are obligated to solve the problem. Of course, this makes total sense, but if you have spent any time on my blog then you know “trying” is only half the battle (our children are NOT homicidal btw which seems prudent to clarify!), accessing effective treatments are a whole other challenge, we have spent many years creatively finding solutions to our children’s medical needs and I assume the parents of at least some of the kids who have committed violent acts, did that too. Did the people they sought out ever think that seething anger and retaliation was a driving force in these kid’s minds? Did the parents see this in their kids? Did no one recognize it as a significant threat at the time?
When you have a child with a challenge of any sort, you the parent accept the responsibility to help your child through that challenge, be it cancer, diabetes, loss of a pet, ownership of an iguana, all of it (rightly so) falls to their parent(s). It’s what we signed up for but consider this, with many of those challenges, your community is apt to rally support in your favor, “awww, Larry is undergoing chemo, I am so sorry, please let the community come together and organize your dinners” or “Oh gosh, we heard Emily lost her precious dog, we are so sorry for your loss, please come to play at our house!” If your child has a mental health disorder, especially one that manifests in atypical behavior (which many do), then not so many folks are eager to empathize (unless they have been there themselves). Believe me, no one is excited to have your child over for a playdate when they curse like a sailor or grab other children’s toys to hit them with, so not only will you feel isolated, you are often the one who gets the blame for the out of control behaviors your child exhibits. You may be told “you are so easy on him” or “oh gosh, if that were my child I would…” and my personal favorite “that kid needs a good whooping.” Super helpful advice for desperate, probably already tried that, exhausted parents. If you suspect your child has violent tendencies, who do you confide in? What if your child refuses to talk about it, or is really good at convincing others about their lack of intent? Can you commit a person if they verbalize a threat or if you are concerned their anger may become a threat? I think this boy was already known as having intent but what expectations for commital do we have if no real action has occurred?
In this world you, YOU the parent are the one to resolve the issue but it is possible you might actually fail because maybe there is no fixing “this”, what if you never find an answer, what if you are unable to fix your child’s behaviors. What if there are no resources, no pills, no counselor to fix it, what then? What if every last thing you try, still fails? What if you know these violent thoughts exist in your child, but no one can help, no one is listening, no one follows your journey?
Some people will actually decide that perhaps this mental health thing you talk about is not even “real.” Perhaps it’s you, perhaps you are the problem. What then?
In almost any society if you are able to control your child, you are seen as a good parent. Congratulations, you are great at doing your job. Except we need to remember, some children have mental health challenges and some children don’t. The odds are greater that some children are predisposed to being thoughtful, rational, helpful, cheery, and hard-working in school while some children are going to have a mental health challenge or delay which makes those things harder for them to pull off, and truthfully it’s kinda random. Many parents whose children naturally succeed believe they are the reason their children perform as the productive, engaging members of society we desire them to be, and on some level they are right. Their children are mentally capable of performing as others in society, they are able to learn and follow the rules as they see them played out by others, these lessons are hardwired through consistent modeling by parents and their peers. But what of those who are unable to give that control to their children? What happens when a child is unable to follow the social cues, or cannot make sense of the lessons being modeled around them, what becomes of the child who seems incapable of being in social situations appropriately, is it that the family has failed, or is it something bigger, should we not be thinking that perhaps their biology has failed?
I recently read this about Adam Lanza and while this cites many factors, ultimately the blame for his attack is laid back at the feet of his parents.
What of Klebold and Harris, the most infamous school shooters in American history, mentally ill or fueled by something more sinister? “Fuselier and Ochberg say that if you want to understand “the killers,” quit asking what drove them. Eric Harris and Dylan Klebold were radically different individuals, with vastly different motives and opposite mental conditions. Klebold is easier to comprehend, a more familiar type. He was hotheaded but depressive and suicidal. He blamed himself for his problems.
Harris is the challenge. He was sweet-faced and well-spoken. Adults and even some other kids described him as “nice.” But Harris was cold, calculating, and homicidal. “Klebold was hurting inside while Harris wanted to hurt people,” Fuselier says. Harris was not merely a troubled kid, the psychiatrists say, he was a psychopath.” and if you want to understand this dynamic deeper – use the link to read the entire article. It is enlightening, not all kids who appear sweet, kind and empathetic are, some can just play the game well. Even Ted Bundy was thought to be “an introvert and very timid by behavior as a child..” although he also had some other more sinister traits.
Could Klebold and Harris have been stopped? Harris, probably not, his act was so refined and his calculation very determined, adults trusted him, they saw him as a “great kid” he knew the game. He knew that people thought well of him and so when he wanted to do what he did, his outward appearance would not have indicated to his parents (or a mental health professional) any clues to what he was contemplating. Klebold was different, his issues more obvious and yes, perhaps his parents could have gotten him more help than they did, but jumping from managing a kid with depression to the idea that they will be a mass shooter is a really mind-bending feat and I doubt any parent believes this possible of their child.
We can also ask, is this a new phenomenon? Have we simply managed to surpass genetics and biology to breed a new level of psychopath and perhaps this is why school shootings now seem to be more prevalent? But from what I have found it seems probably not, before his infamous 1969 massacre, Charles Mason had long been a target of conversation on violence: “Based on fresh testimony … Things he did in elementary school eerily foreshadowed his bloody deeds a quarter-century later.” But no one thought he would become a mass murderer, or if they did, it seems they had no idea what to do about it.
As I sit here trying to make sense of another senseless shooting and wondering where I need to move to get away from it all, it makes me wonder how many other parents are also searching, digesting, dissecting everything they are reading or hearing – some perhaps even wondering if their child is capable of this type of mass atrocity? What is society missing, how do we stop this, what can we do for our kids to make them mentally healthy? Because having active shooter drills and armed police in school is not helping anyone’s anxiety over this, not one little bit. The reality is, many of our kids are struggling with their mental health but it does not make them mass murders or potential killers. … as I was writing this – this article popped up in my Google search
The New York Times, “U.S., There Is No Clear Profile of an American Mass Shooter By Daniel Victor published FEB. 17, 2018
Mental illness Experts say the people willing to kill strangers don’t all have a certain mental illness, and in many cases never sought professional help. They are often paranoid, resentful or narcissistic, but not always to the extent that they had been found to have a disorder.
Dr. Michael Stone, a New York forensic psychiatrist, found that about half of the 200 mass murderers he had studied had no clear evidence of mental illness before the attacks. About a quarter displayed signs of depression and psychopathy. It’s not clear that access to mental health care would have prevented violence. Elliot O. Rodger saw several therapists before he killed six people in Isla Vista, Calif., in May 2014. His therapists disagreed on the nature of his mental disorders. Adam Lanza, who killed 20 children and six adults at Sandy Hook Elementary School in 2012, had received years of counseling from psychiatrists and psychologists. Though he had Asperger’s syndrome, a mild form of autism that does not suggest violent behavior, he had never been found to have any mental illness that would.”
(If you want to read more about Mass Murders in the US, you can find links and information here on Wikipedia.)
Ultimately you cannot know what you cannot know and hindsight is just that, it gives us a reason to pause, reflect and see the error of our decisions but only after the fact.
Do we need better access to mental health care in the US, yes, as a parent I believe we do but I am not sure it will stop these kinds of atrocities and that’s terrifying to contemplate but there are enough children who do need (and want) help to navigate the situation they find themselves in, and for that reason alone, access should be easier to find.
Consider: (NAMI) “Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.”
Having had a need in the past to call around trying to find services (covered and not covered) and not getting called back, or not being eligible for a program, or facilities not taking new patients, (or not being able to guarantee the safety of a child that the option for care is so scary a parent sees it as no choice at all), I believe we do. Management of mental health is difficult to find, especially if there is a desire for more than just medication management.
However, I also understand there isn’t just one thing we can do that will turn all this around, and it’s highly unlikely that one thing alone caused this homicidal rage to happen with this boy. It also seems more complicated than most doctors or therapists can understand because the suicide rates keep climbing, and school shootings keep happening and amongst my FACEBOOK “friends” kids seem to be getting sicker (mentally as well as physically). Maybe it is all the above or none of it, maybe it’s histamine, or mast cells or cytokine storms, or it’s “just” depression or anxiety or bipolar, or it’s autoimmune, or it’s access to guns, or it’s lack of community, or it’s a prevalence of personality disorders, or perhaps it’s GMO’s or plain old jealousy, perhaps America really is imploding, society turning on itself grabbing whatever we can while the whole country goes down in flames.
Access to care is only part of the problem, perhaps we also need to feel part of a community. A shared responsibility to help those in our communities who are struggling, not to judge, but to support. The kids with no friends, the kids who seem to struggle more than their peers, those who don’t fit in, those kids who other kids call “the weird kids, the oddballs, the losers”. Maybe as adults, we can reach out more to those parents, the ones who seem isolated, those who we know are struggling with children and health; take them a meal, maybe by allowing everyone the chance to be a valued member of the neighborhood we avert a crisis. Of course, conversely not everyone wants help, neighbors prying into our business, more judgment, advice that is way too simplistic for our situation. It can be a minefield but it should not stop us trying. I am an idealist at heart, every person is valued, every problem has a solution, work hard, be honest, be open and the world won’t hurt you, but then again, I have been told many times I am naive…
Below are some articles for further exploration but not suggestive of cause and effect by any means. Encephalitis, autoimmune, vaccine injury, misdirected autoimmune responses, Lyme, mold, untreated bacterial or viral components all could be causing varying levels of neurological dysfunction and in an ideal world we would move from “mental health diagnoses” to seeking the cause or trigger of neurological disruption and look for opportunities to resolve rather than manage mental health disorders, although this may just be wishful thinking or naivety on my part of course 🙂
*addition: Charlotte-Mecklenburg, as has already been established, finding and accessing treatment can be difficult at best. Someone texted me this article this morning. This man may have lived if there had been a coordinated plan of care and someone had helped him utilize community resources. We cannot be scared of people with a mental health diagnoses but we absolutely should know how to help people find managed care for their illness. If we adopt the thinking that “mentally ill people are dangerous” we are on a very slippery slope. When 1:4 adults are struggling with mental health challenges it would be asinine to think of every one of them as being a danger to our community. Where does that end? Are depressed people dangerous? Angry people? Prescription drug users? We could drive people further away from reaching out. Profiling is never a good idea, it generally ends in messy court cases and more difficult laws. When someone is in crisis, call a CIT (crisis intervention team) just like you would call a hostage negotiator or SWAT in other situations, allow the trained professionals to assess the situation calmly and get that person the help they need.
Mental Illness... refers collectively to all diagnosable mental disorders — health conditions involving significant changes in thinking, emotion and/or behavior distress and/or problems functioning in social, work or family activities.
Anger: I am personally more scared of someone with anger issues than someone with a mental health diagnosis. No one mentions “angry people” when discussing gun controls – we should be asking why are angry people allowed to purchase high powered weapons or even handguns but how would we even measure that? Where do we draw that line? “The attribution of violent crime to people diagnosed with mental illness is increasing stigmatization of the mentally ill while virtually no effort is being made to address the much broader cultural problem of anger management. This broader problem encompasses not just mass murders but violence toward children and spouses, rape, road rage, assault, and violent robberies. We are a culture awash in anger.” Anger Causes Violence
“1 in 6 Americans Takes a Psychiatric Drug. Antidepressants were most common, followed by anxiety relievers and antipsychotics” this was up from 2010 “An earlier government report, from 2011, found that just over one in 10 adults reported taking prescription drugs for “problems with emotions, nerves or mental health,” the authors wrote in a research letter published today (Dec. 12) in the journal JAMA Internal Medicine.” Scientific America article By Sara G. Miller December 13, 2016.
Gun control and challenges: Follow the money. “Most Americans support stronger gun laws — laws that would reduce deaths. But Republicans in Congress stand in the way. They fear alienating their primary voters and the National Rifle Association. Below are the top 10 career recipients of N.R.A. funding – through donations or spending to benefit the candidate – among both current House and Senate members, along with their statements about the Las Vegas massacre. These representatives have a lot to say about it. All the while, they refuse to do anything to avoid the next massacre.”
Youth Vaccination Rates by Country “There are countries where failure to take your child for immunization against certain diseases could lead to prosecution by law.” Do these countries have more or less types of these violent crimes? What are their autism rates? Is it vaccine injury? Is there even any correlation?
Genetically Modified Crops – Statistics & Facts “Genetically-modified crops, also known as GM crops, are plants used in agriculture which have been modified by using genetic engineering methods. The genetic modifications are done in order to create crop varieties with desirable traits, such as tolerance against herbicides and specific pests.” Do other countries fare better or worse than the US population as far as violent crime?
Crime by Country. Is it enough to just look at our own society? How do our crime rates compare with other countries?
Healthcare by Country: How does the US compare to other countries?
Is diet related? “ Dietary requirements for choline are high during pregnancy because of its several uses, including membrane biosynthesis, one-carbon metabolism, and cholinergic neurotransmission.” We know diet can affect our mental health, think of the Feingold program successes or this American Psychological Association article highlighting “…study of 120 children and adolescents, consuming fast food, sugar and soft drinks was associated with a higher prevalence of diagnosed attention-deficit/hyperactivity disorder (ADHD) (Pediatrics, Vol. 139, No. 2, 2017)” demonstrating a link between food and mental health.
A Viral component(172852)? “The hypothesis that viruses or other infectious agents may cause schizophrenia or bipolar disorder dates to the 19th century but has recently been revived. It could explain many clinical, genetic, and epidemiologic aspects of these diseases, including the winter-spring birth seasonality, regional differences, urban birth, household crowding, having an older sibling, and prenatal exposure to influenza as risk factors.” Or here “Viral infection, inflammation and schizophrenia“ Perhaps it is a variety of factors: The microbiome, immunity, and schizophrenia and bipolar disorder
It boggles my mind, that we still have only have two major clinics treating our kids (at least publically) for this neuroimmune issue we have termed PANS and PANDAS, which begs the question – why? What is it about our kids that says to doctors and medical professionals “hmm, best not dig too deep on this one, give them XYZ medications until the parents move on and then we can all move on”?
Are my kids not worth the trouble? Do my kids not deserve to get the same respect and reverence as a child with say diabetes? Seriously, what is it about our children that makes them seem not worth going to bat for?
It’s an interesting conundrum really when you think about it. Parents bring in a child who is ramped up, distressed, OCD with intrusive thoughts, or TICS that are debilitating or complex, low tolerance to stress, learning abilities shot to bits, challenging behavior, depression, super high anxiety and very often suicidal at a really young age, and it is typical for the family to be told: “hmmm, could be ASD, could be bipolar, could be ADHD, we don’t really know but let’s move you into mental health, perhaps some OT and we will see you periodically to do errr yeah nothing all over again”.
Most doctors first, of course, run rudimentary blood work, a CBC, CMP, maybe thyroid, cholesterol, even an MRI and perhaps an EEG, but what about digging deeper for the reason for this chaos when nothing obvious shows up? Why is no one looking for the complex clues? I like to think it’s a mandated time thing, not a – not wanting to dig deeper thing. We are waiting for them to say, “why is this child off the charts? What happened to this kid, why are they acting out, hitting their siblings, cursing at their parents, running away from school??” but they rarely do.
I don’t believe the majority think this is just bad parenting or a “bad” child thing either. Although there are certainly some that wonder if our kids just came out this way. “Sorry chaps, terribly bad luck, you just got a badly behaved child” or they think this is a genetic predisposition that is exacerbated by who knows what… but why, for the most part, don’t they show a spark of curiosity for chasing down the trigger?
Maybe the conversation in their head goes “whoa, I have no idea what this is but it looks complicated and confusing, surely psychiatry has a drug to dampen that down?” Or is it “whoa, I think I know what this is, but I know it is confusing and drawn out to treat, I know no insurance wants to cover the medications that help and there are no clear markers for what I am looking at, probably best to let the family move on to someone better who can spend the time looking deeper?”
I don’t know really, but I am on a mission to at least try and make it easier to access medical treatment where we live. As many of you know I am in the South and we are very limited here in terms of treatment options. However, after a full year of campaigning with some very, very awesome and cool parents, I am proud to say things are really looking up. One of our representatives has taken an interest in this campaign and we are hoping for an Advisory Council bill sooner rather than later.
Calm down now, it isn’t as sexy as it sounds, it is simply a bill that would allow for 18 volunteer professionals in this state to come together four times a year to brainstorm how to get the latest and most up to date information on PANS/PANDAS into the hands of every doctor, ER, school nurse, educator and ergo parents, in the state. Five states so far have some form of legislation in this manner, another is very close, and 31 states (ours included) are on a mission to do the same.
In addition, those same very, very, awesome and cool parents have given up their precious time to beg, cajole, email, mail, ask and present on this subject to anyone who will listen. It is working, people are listening, we feel like we are winning. It feels good most of the time but today, I had my most liked/highest retweet ever, it said:
“Hate to be a downer, but life with PANS is hard. It’s hard on the whole family. it’s.so.hard to see opportunities lost, kids & parents feeling so inadequate, feeling odd/different, feeling like a failure. All because egos got in the way of a medical dx 🤨#PANS”
Up to now, I was sure my biggest tweet would be down to my sparkling repartee or stinging wit, but no, it was this. I thought wow – I post and retweet studies and statistics and advocate for treatment and care, and I love to retweet those who do what they do to make stuff happen. I follow and retweet all my heroes and all my legislators, I @ and hashtag all day long, but this, this is what gives me my most positive reinforcement Twitter moment ever (I am like Pavlov’s Dogs).
I guess today wasn’t tough just for us (#schoolrefusal, another day school seemed too daunting to even go). As PANS/PANDAS parents we ALL try so hard. We are ALL fighting for better but sometimes I know there are moments that we all just long for normal (not even going to say “whatever that is”, because truly in our heart of hearts, we know what it could look like and we know that’s not what we have). Anyway, tonight as I sip my wine, I revel in the glow of my 10 likes and 8 retweets (hahaha move over Ellen DeGeneres (Verified account) @TheEllenShow with your 77 million followers – I got 10 LIKES – beat that baby). Tonight, I am a Twitter rock star … (#itsthelittlethings)
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