Neurodiversity

Mental Health in America

MENTAL HEALTH in America

(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?

Autism Rates Across the Developed World “Most of us Americans are aware of the  autism rate among US children, but have you ever wondered how our number compares against the world’s leading nations?

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 factorsThe microbiome, immunity, and schizophrenia and bipolar disorder

 

 

How Many Times…

How many times …

I had reason tonight to go back over a series of blog posts about a program we had completed in 2011. As I was reading through the Brain Balance blog roll I realized we had actually finished that program with hope in our heart and a skip in our step. Okay perhaps we were not quite that enamored but certainly, we felt like we were in a really good place. When I wrote any of those earlier blog posts, I had no idea that those brief periods of respite (that we celebrated so much) would last a few months and then cycle right back around again. In reality, by the end of 2013, we had cycled into a far worse place than we had ever been before. If you have read this blog from the beginning you will know that that was quite an achievement.

By September 2013, a truly awful milestone had been reached. So even though we had enjoyed slightly better behavior, slightly less stress, slightly calmer days and nights, and definitely more cognitive ability during those 12-18 months after the BB program, it didn’t last, because in our world recovery has never lasted.

Why even write the blog? I don’t make money doing this. I lose sleep because I only find time to do this late, late, late at night. I don’t have a million subscribers or even a YouTube channel. I often ask myself what’s the point, why do I keep writing this? Living in the chaos that stretched into years, I knew I would forget the nuances, the little things, the truly chaotic nature of what was going on and when? Although it probably would be better for us all if I had just forgotten a lot of what happened and moved on. Initially, I truly hoped someone would read what I was writing and say “I wanted to contact you and let you know, I know what this is, I know how to help you” but as desperate as we were that sadly never happened. We spent years hoping for the cavalry and by the time I started writing this blog we were really heartbroken and lost about what was going on with our beautiful, cute, adorable son. It was only many years later it eventually occurred to us WE ARE THE CAVALRY. We have spent years on this hamster wheel, praying to get off never really knowing how but we never stopped trying. I, like millions of other parents, refused to give up. When we went from one doctor to another, from one mediocre treatment to another, we never gave up.

When I first learned that we had a spectrum disorder at 18 months, I thought to myself “well, we are not doing this, he’s going to be fine” and being who I am, I got on with the business of healing my child. I really thought, for sure by the time he was 3 we would have this thing resolved. I wasn’t worried. I had it in hand and was egotistical enough to believe that by the time he was eligible for early intervention, we wouldn’t even need it. Later, when the Easter Seals combed over paperwork the Arizona Early Intervention program had sent when we moved, I assured our caseworker that we would be done before his 3rd birthday and a place in the local school district was unnecessary. Just help us get settled I had said and we will take it from there. Yet when he started developmental pre-K on his 3rd birthday, screaming relentlessly as I left him at the school, I allowed them to placate me as they reassured he would be fine and I thought, “Okay, I am a little disappointed we didn’t get to where we needed to be already but by kindergarten, we WILL be sorted.” It turned out that kindergarten actually went pretty great. We figured we were making progress, we congratulated ourselves because what we were doing was working. A little later, when we again began having challenges, I really still had great hope. As part of that hope, we switched to a private school for 2nd grade, I thought, “HA! I had missed a part of our puzzle, I believed I had figured it out. It was the school that was the problem. I naively thought, “the new school will make it better for us all” and for a while it did. Around this same time, we had completed Brain Balance and then chose to re-enroll in another round of OT about 6 months later. It was actually going well in the small Christian school he was enrolled in.  However, we all know how this story goes and by the end of 3rd grade, we found ourselves right back to square one. It was a perfect storm of both a challenging teacher and what we now know was a defunct immune system.  These autoimmune triggers can wax and wane depending on environmental situations, bacterial exposures, viral loads and even just from the etiology of the disorder, we didn’t know this at the time. Those behaviors were actually a symptom, not a side effect of what was going on. Those behaviors controlled all of us because we never truly knew what we were really dealing with. Even though many, many, many times we allowed ourselves to believe we were on the winning side of all that was going on.

Anyway, nostalgia night, that’s really all this post is about. I have been reading back through my blog and I see how many times we truly believed we had cracked the code. Even now – as well as we are doing – I know to err on the side of caution. I know from past experience this recovery could just be a fake out, this could all be smoke and mirrors. What we have going on may just have hit a down cycle and that alone might be the reason for our calmer normality. Next week, next month, even next year we might very well be right back where we started, but until then we choose to believe the cavalry finally arrived. Ever the optimist, I am choosing to believe that this time, this is THE time we finally have it figured out.

PANS, PANDAS and Lyme Disease – what’s the connection?

PANS, PANDAS & life after a diagnosis of Lyme Disease

So in the 3 years since I put away my keyboard and started focusing on other things, a lot happened in our lives. In August 2014, when I wrote this post, I had no idea what was even possible for us going forward. We had settled into the uneasy idea that our underlying issue was simply developmental trauma disorder or another genre of attachment disorder. We were sold on the idea that the emotional trauma from being placed for adoption at birth had altered his ability to reason rationally. Therefore, the residual pain and anger over this rejection were driving the outrageous behavior we were and had always been seeing. Everything I read about the different attachment styles matched much of what we were challenged with at home. It seemed to fit the best of what we had heard so far.

Following that path of reasoning, we found and paid a searcher $1500 who set about finding his birth family. It took less than a month and we had a real, valid, biological connection for him and several months later we headed to his birth country for a family reunion. While this genuinely touched his heart and shifted his perceptions about his adoption and his birth mother, it didn’t help stabilize any of the behavior. The rages, the uncontrollable depression and the gnawing anxiety remained constant. His birth mother was overjoyed with the reunion and we still gratefully maintain the connection with his birth family. After we returned from that trip, it was interesting because we did see part of his personality shift. He became less aggressive toward me, but instead his anger became more directed at himself. It did give him some peace over his identity but he still struggles with not looking like us. Being part of a mixed race family has its own group of challenges, none insurmountable, but it definitely adds an extra layer to be aware of. Anyway, once he finally knew who he looked like, he knew she cared for him, he knew that she thought about him often, he talked less and less about being rejected and more and more about just feeling hopeless and joyless.  The birth family connection had not lifted his depression at all, but he does has a deeper peace and understanding in regards to his birth and adoption which was important to us all. He truly knows that he is loved.

Despite that reunion, we were still struggling to manage. He was still deeply sad and depressed, he constantly expressed wanting to die, and he was irritable and angry all the time. His self injurious behaviors and obsessive thinking continued without provocation. That same year, he underwent a tonsillectomy and adenoidectomy because of extremely large tonsils and constant strep infections that he struggled with since being a baby, but we also prayed it might help his behavior.  It helped a little but once again had to take stock, steel ourselves and figure out what else might be going on. We still wondered if there were some residual anger related to his adoption and so arranged for him to go to and stay at a treatment facility in Colorado hoping that they could tease out more of his true challenges. In the meantime, (because we always try to be two steps ahead) we also ordered a Cunningham Panel, (Moleculera Labs – AN AUTOIMMUNE NEUROBIOLOGY COMPANY) but those results were put aside while we focused on Colorado.

We headed out west in the summer after speaking extensively with the facility he would go to. We were confident that if anyone could tell us if this was an attachment disorder, it would be here.  Less than a week into their program, we were called into the office and given their professional opinion, we were not dealing with RAD. Perhaps an anxious attachment scenario but not true RAD. We were told to take him home and pursue the bipolar angle more thoroughly. We were still very confused but at least going to Colorado helped us gain some clarity in our situation and we left there feeling confident that the attachment part could be put to rest. I will be forever grateful for the work The Institute for Attachment does, especially for the foster and adoption community which we are still very much a part of, but that was not where our personal resolution was to be found.

We returned home with the intention to do the bipolar work up. Take the meds, accept the diagnosis and move on but all the time my mind was fixated on the Cunningham Panel results. Two of the test results had been at the really high end of normal, or the really low end of abnormal, but that told us something didn’t it?  We met with our long term integrative neurologist and explained what we learned in Colorado. This doctor then confirmed, that based on the Cunningham Panel, he now thought we were dealing with P.A.N.S. or P.A.N.D.A.S. (along with mitochondrial disorder).  There were no positive (ASO) strep titers so it was a P.A.N.S. acronym for our diagnosis. As an aside, this latest diagnosis brought our list up to a whopping 16. Yes, 16 – we had so many diagnoses, there was barely room on an 8.5 x 11 sheet of paper. Along the way we have been classified as: (in this order) PDD-NOS, Autism, sensory processing disorder, ADHD, bipolar 1 rule out, depression, mood disorder NOS, anxiety, borderline personality traits emerging, auditory processing disorder, epilepsy (temporal lobe complex partial seizures), tourette syndrome, ODD, OCD and developmental trauma disorder. Now we were being told it was an postinfectious autoimmune encephalitis. We actually didn’t understand that this is what P.A.N.S. meant at the time but of everything we had heard up to this point, the P.A.N.S. diagnosis actually made sense. We left that appointment still not really knowing what to do or what the treatment plan needed to be but we were one step closer to being on track.

We had the diagnosis but now needed a plan of action:

Neither of us knew what we should do next. My husband and I just kept saying, what do we do with this new information? Thankfully by this time, B was recovered from the tonsillectomy he had in 2015 and his behavior and outbursts had continued to improve. He had more control and had actually been able to return to school. Cautiously, he had started back in 7th grade after being out of the public school district for over 2 years and he settled right back in. As he returned to school, we were still considering what all these behaviors could best be explained by. We relooked at that Cunningham Panel, thought seriously about the P.A.N.S. presentation and considered the mitochondrial disorder. I spent many days and nights researching P.A.N.S. and everything I read just kept confirming our situation.

We decided we would find the best P.A.N.S. doctor we could, and make an appointment. We of course waited an extraordinary amount of time as is always the case for any doctor in our world, but finally the time came and we took ourselves off to Washington DC.

We got to DC in September of 2016 (remember this is 12 years after this journey began) and she quickly and easily confirmed the P.A.N.S./P.A.N.D.A.S. diagnosis. Citing the periodic limb movement disorder as a big clue, the constant strep, ear infections, mycoplasma pneumonia bouts (3), coxsackievirus x 3, scarlet fever, asthma, allergies, sleep disorders, high liver tests, low iron, low vitamin D, the list went on and on. We had all the markers and behaviors for P.A.N.S. We thought HALLELUJAH Our child has a chronic autoimmune disorder. Not something typically celebrated but we were really celebrating finding a doctor who validated that there was something medically wrong and this “something” actually made sense. Both our children were diagnosed with P.A.N.S. that day.

Pediatric Acute Onset Neuropsychiatric Syndrome (P.A.N.S. – the MacDaddy of P.A.N.D.A.S.). My daughter’s strep, OCD, separation anxiety, thyroid challenges, ANA tests, rheumatoid symptoms all added up to the same issues her brother was having. Different, less violent presentation but all adding up to the same thing. We had officially confirmed that additional diagnosis on our list… not only had we reached that 16th diagnosis, we had now gotten it confirmed TWICE. We thought surely there is a prize for this, but turns out it’s just a large doctor bill, a prescription for antibiotics and a request to return in 6 weeks.

In true us fashion, the first antibiotic was short lived (we are allergic to everything), a rash developed quickly and so we moved to a different antibiotic. Six weeks later we went back to the clinic, agreements still of a diagnosis of P.A.N.S. and discussion of IVIG. IVIG (intravenous immunoglobulin) being the gold standard treatment for children with P.A.N.S./P.A.N.D.A.S. We felt like the nightmare finally had an ending. However, this doctor was out of state and therefore out of network and it turned out the IVIG was going to be around $18,000 per child, and we had two children who needed it. Additionally, this wouldn’t be a one time deal, this could mean multiple infusions of IVIG to get them back to homeostasis. It just wasn’t happening. Our fortune was long ago spent on the plethora of doctors we had already seen.  To get to DC we had cashed out the last of our life insurance policies, the well was to dry to even contemplate picking one child for IVIG, not that we could but even that wasn’t an option. We returned home a little deflated but with another prescription and an instruction to return again in 6 weeks. Six weeks later we are back at the office. It began as a typical appointment like every other; however, during our discussion, somehow we ended up cycling back around to the idea that this may possibly be bipolar. We were momentarily thrown into confusion. The antibiotics were working, slowly yes but the symptoms were alleviating, the tonsillectomy had proved wildly positive over the long term, school was going reasonably well and his rages had decreased by at least 50% but here we were, back entertaining the idea of him being bipolar 1. My husband and I were a little dumbstruck but the doctor went on to explain that after all the testing came back and with the history we provided, it was no longer certain that we were dealing with an autoimmune process and she didn’t want to miss a diagnosis of bipolar. Honestly, we did understand. We get it, doctors are in a precarious position, when they are right we admire, respect and adore them, if they are wrong – we sue! I get it. Truthfully, I would never sue (ha – so many opportunities, so little time) but I can absolutely respect a doctor for covering all bases. Anyway, as we got ready to leave, we were told to stay on the antibiotics and return in 6 months. SIX MONTHS. My still suicidal, self harming, fast becoming anorexic child, plus my other one who we now knew was equally as sick, had to go home and do nothing but one antibiotic for 6 months. We felt like we were being dismissed and the idea of waiting for 6 months, while doing nothing, was just not an option. My mind had already been kicked into gear (remember 2 steps ahead), as part of the testing this doctor had done lyme testing. We had noticed that the Western Blot returned with a couple of positive bands, not enough to be called positive by the CDC but it made us curious enough to explore further.

Because of that testing, I had ordered a DNA Connexions kit – it was easy and could be done at home.  The results had come back right before we had left for our trip. Both kids had burgdorferi DNA in their urine samples. “Borrelia burgdorferi is a bacterial species of the spirochete class of the genus Borrelia. B. burgdorferi exists in North America and Europe and is the predominant causative agent of Lyme disease in the United States.”  [wikipedia]. We had asked the DC physician about this during our visit but they don’t treat lyme so they were not super informed about the impact this might have on our children. We had also asked about the mechanism of amantadine as we had seen huge growth in our son with this antiviral after the tonsillectomy and adenoidectomy but the doctor had no basis to enlighten us further on why this might be. Basically, we were still grasping at straws and clinging to hope that it was still an infectious process and not bipolar, but really we left that doctor’s office in dismay. The cavalry felt like they had galloped right on by. After I had a good cry in our hotel room, we headed home and settled back into a routine, I posted online in a P.A.N.S. group about our disappointing outcome from that last appointment (Facebook is truly alive with parents in our situation) and someone private messaged me about a lyme doctor in New York. She was supposedly the best. Cared about her patients, ran thorough testing, was respectful and responsive and above all, really smart about lyme.

If you have followed along this far, you already know what happened next. We got to New York in February 2017, the doctor took one look at the Western Blot, examined the children, took a very detailed history, did a bunch of neurological testing and voila, we pretty much had our answer – LYME! Well, after IGeneX and Galaxy testing we had confirmed lyme but really, we left the doctor’s office that day with answers. Answers that had taken 12 years to find. How in the world, when this testing is so easily available did it take us 12 years to get here? We were back to a P.A.N.S. (triggered by lyme) diagnosis, we happily erased the bipolar once again from our minds and formulated a plan to treat the lyme and get our kids well again.

Anyway, fast forward several more months, we are still wading through blood draws (we needed 33 different tests), sleep studies, MRIs, and EEGs, some of these had been done but much of it never had. My kids are sick, really, really sick. The NY Doc started the kids on a combination of clarithromycin and doxycycline and we have just been continuing to make slow steady progress.  We are supposed to add a drug called Mepron but the side effects scare me and for giggles, we have just picked up a prescription for low dose naltrexone.

This is our life right now, antibiotics, immune stabilizers, nasty antiparasitics. I won’t even begin to mention the mold testing and clean up, yes, that happened…

But what do I say  about the treatment for lyme? I say surely there has to be better way, a gentler way. So in the spirit of always being me and knowing the summer holidays are stretching lazily out in front of us, I look to fill 10 empty weeks with no plans and no desire to do anything and  I start to research more about lyme. Late one night in a popular facebook group, I stumbled across someone who is in the midst of treatment for her chronic lyme, at a clinic in Andover , MA. This looks interesting I thought to myself, a no drug therapy to resolve lyme and it only takes 12 weeks. SIGN ME UP! Seriously, only 12 weeks – not 12 years – 12 weeks!. Soon phone calls were being made, plans were laid out, appointments were rescheduled and blogs are now being updated. In 7 short hours we hit the road headed for Andover MA.

Of course, the phone calls were made last week, I don’t move that fast. To convince the children to buy in, I ran away from home. Seriously, I came home and told them there was a program in MA that could end this nightmare for all of us and they shockingly balked at my suggestion of spending the summer doing one last treatment. Weeping and wailing ensued (mostly from me) and I left the house declaring dramatically, I wasn’t coming back if they wouldn’t go. In reality the minute I left we were exchanging texts and apologising profusely to each other but to make a point I wandered around Southern States buying my chickens their treats veeerrrrry slowly. I finally returned home and the kids declared grudgingly they were onboard, and that’s when we started to plan this epic trip of all trips. As of Monday morning 8.30 am we will be at the new clinic hoping and praying that this TRULY FINALLY IS THE ANSWER we have been looking for. Ever the optimist, I believe it is 😀

My reason for updating the blog today is so that I can chronicle our trip to MA, talk about the therapy and hopefully declare the positive results we are getting as the weeks go by. We plan on being in MA for the duration of the program which is 12 weeks. We are towing our little 17′ Jayco swift and that’s what we shall be living in for the duration. I found a campground that is willing to rent us a monthly space for $900 which we can just about swing, the clinic is very reasonable for a 12 week program in our world, so, bon voyage our little corner of the world, tomorrow a 13 hour and 17 minute drive to MA so we can report to the clinic Monday morning at 830 am sharp. Check back for updates.

So it isn’t just me then…..

SPOILED ROTTEN: Why do kids rule the roost?  BY ELIZABETH KOLBERT

After last week’s post it’s nice to see I am not alone.  I was expecting to see a picture of my house attached to this paragraph:  “Children, according to “Life at Home,” are disproportionate generators of clutter: “Each new child in a household leads to a 30 percent increase in a family’s inventory of possessions during the preschool years alone.” Many of the kids’ rooms pictured are so crowded with clothes and toys, so many of which have been tossed on the floor, that there is no path to the bed. (One little girl’s room contains, by the authors’ count, two hundred and forty-eight dolls, including a hundred and sixty-five Beanie Babies.) The kids’ possessions, not to mention their dioramas and their T-ball trophies, spill out into other rooms, giving the houses what the authors call “a very child-centered look.”

I am going to make a real effort this weekend to get the house in order, starting tomorrow morning.  It’s time to lose the crap and experiment with interaction of the human kind. Wish me luck! 😀

Making excuses…

I am a member of many groups on Facebook (many, many groups), mostly all related around the topic of how to parent both a difficult to diagnose child and children with difficult diagnoses. I have to say this: Today, it struck me that we all make lots of excuses in regards to our own behavior as well as our kids. So now, I am wondering if we stop making excuses and look at how our behavior negatively affects our children’s behaviors (myself included) and just own up to our own slackness, things might be a little clearer.

Lots of advice gets asked for and in turn shared around the forums, but today I realized, most people don’t really want advice, all they really want is the information on the stuff that is not too hard to do. What we all want is that magic pill, we are looking for that one parent to post who says “here, this is the easy way, do this and ~voila~ all will be good in the world, all will be right with your child.”

Today there was a thread responding to a lady who has tried “everything” to help her ADHD child calm down. She said that the meds are not working and he is still having a hard time. There, along with the “go to your doctor, change his meds, add exercise, occupy his time better” and other snippets of advice, was the topic of nutrition, as it invariably is. The response to that particular advice was, “I can’t remove dyes because my child has sensory issues and refuses to eat most things, if I eliminated food choices he would starve, it’s well known that children with sensory issues will starve rather than eat!”

Reading it, I thought to myself, that was a little harsh of a reply considering we all know she hasn’t really “tried everything?” Of course she hasn’t tried everything, she herself said that he is eating food dyes which have in studies been proven to have a negative effect on behavior.” This isn’t a crime, it’s certainly not compulsory to do the Feingold diet or even a modified version if that’s not where you think the benefits will be. She doesn’t have to try any of the diet interventions if she doesn’t want to. For me, I live in the realm of, it’s her child, her choices, her life.  I don’t live in her house, or walk in her shoes, I have no idea of her life circumstances, finances or assistance. I actually have no reason to judge her at all, so on that note pretend this post isn’t even about one person, it’s about all of us.

Truthfully, how refreshing would it be if someone asked for advise and then responded by saying, “I can’t be bothered” or I don’t want to.” Should it irk me (you) if instead they say “it’s impossible because … [insert excuse here].” It’s kinda annoying right? Its getting to where I kinda want to call them on it to be honest!

So, to be fair and to show I am a good sport and in charge of my own truth – in true full disclosure on that very topic – with some soul searching (OK didn’t need to search too deep), my own true confession time.  Here goes: I have known for a long time my parenting skills are somewhat suspect in respect to my kid’s behaviors, or rather my parenting skills may actually enhance their poor behavior choices.

It’s always there, nagging away in the back of my mind, what I do and say has power over what they do and say! Of course, I too would like to think it’s all down to biology, nature versus nurture and all that. I am fairly sure that for the most part we parents are convinced that, even though we are not winning every parenting award out there, we are as diligent and competent as any ‘perceived good parent.’

I don’t beat or even spank my kids, I only buy organic foods, we have eliminated nasty things like GMO’s or arsenic fed chickens, there are no dyes or chemicals in their bath and hygiene products, they even use a fluoride free toothpaste, they certainly never eat dyes and chemicals EXCEPT that (hanging head), I have been known to let them cheat, only every once in a while mind you, but occasionally I will allow them to eat something that has wheat/dairy or corn in it, any of these things totally causes a ton of behavior issues in this house, not to mention upset tummies and days of complaining about that, and I KNOW this, but I do it anyway [another big sigh, commence hand wringing and shaking head :(].

Worse than the food thing, my biggest infraction has to be that: I spoil my children! “Gasp” yes, I spoil them. Honestly, my kids want for pretty much nothing. In this house, usually if they ask, they shall receive. I will make a half hearted attempt to have them do chores, save their pocket money, be more helpful around the house, I ask for (never demand) respect, I always insist on good manners, I model good behavior and my children are well aware of the social etiquette of please, thank you, m’am, sir, etc. But then I find myself negotiating with them over a simple request to take a shower.  It becomes a tactical negotiation, “can I just finish watching this?” … “oh ok, but soon as this is over switch it off and do ….” to which of course 30 minutes later they are still watching TV and the shower/dishwasher/trash cans or whatever I requested, is/are still sitting waiting to be completed, emptied or brought up from the sidewalk. I forget, I sit down and start getting on with things (like this blog) and I don’t stay the course, and inevitably I end up doing it myself – well not the shower part but the actual chore type requests. I choose an easier path for me, I admit it, but of course I can see and I KNOW, I am also short-changing them in the long run. Allowing them to shirk chores effectively or enabling the art of negotiation gives them certain life skills I am sure, but not ones that are conducive to good citizenship or good parenting sadly.

So what to do, what to do. Certainly in our house one is better than the other, she has more goals, she has more reasons to save. The boy, cares for nothing mostly. If he doesn’t get it easily, he doesn’t want it, which is hard to battle around. More reasonably, I need to step up, I need to take on the task of staying on track with their chores, I am tired, I am fed up and it’s easier to do it myself, but realistically I might be less tired, less fed up if I wasn’t the one picking up the wet towels rather than allowing my kids to think we possess magical towels that drag themselves to the laundry basket. The Boston Globe published an article on why it’s good for our kids to do chores.

Anyway I ran off course as I often do. Really, in the grand scheme of things it’s impossible to do “everything” in regards to helping our kids behave better, to be less spinny, less obnoxious, less anxious, less depressed, less ADHD. Trying to do “everything” just adds to our stress and maybe even sets us up for failure. For my failings, I know I could be better at getting him plenty of exercise and that along with brushing up on my own core parenting skills ie., being less indulgent, focusing less on stuff and more working towards goals that build their self-esteem, self-worth and self-value, could go a long way to raising a well rounded respectful adult – but honestly if you said that to me, I truly would be offended. So yes, of course I haven’t done everything but the next time someone suggests something to me, I will either say, “you know what thank you, yes I will try that” and I really will try it or I will say “nahhh you know what, I just don’t want to do that or I am not willing to see if it makes a difference in our lives” and honestly, what I am really saying is that the effort I need to put forth for the reward is not great enough to me personally to even try, and you know what, that’s ok because I don’t actually have to try anything!

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