You are here: Home / Archives for PANDAS

PANDAS

Heat regulation in bipolar disorder, mood disorders and dysautonomia

by

Heat regulation, bipolar, mood-disorders

It’s been a hot one around here already, and apparently, we are going to hit an unprecedented heatwave this summer, or that’s what B keeps telling me anyway.  In the scorching embrace of summer, our bodies are pushed to their limits as the sun’s radiance engulfs us in its fiery glow. Amidst these oppressive conditions, we find ourselves susceptible to perilous conditions related to heat exhaustion. I began to get more interested in temperature challenges after hearing about a bipolar phenotype referred to as “Fear of Harm disorder”.  This disorder highlights heat regulation problems associated with bipolar and other mood disorders in adults and children.  I want to unpack this a little more and look at the link between extreme temperatures and the delicate balance of our physiological systems. Stay with me here as this might get complicated.

Fear of Harm hasn’t yet been universally accepted by the medical world yet (once again, can we all pause and take notice of how our medical establishments are hesitant to acknowledge anything that can’t be controlled through clear definitions and pharmaceutical regulation? Does anyone else share this observation? No, me either, just curious if you did. Anyway, off on a tangent..) Let’s discuss FOH first and the diagnostic criteria behind that diagnosis.

Unspecified Bipolar

This diagnosis is classified currently as an “unspecified Bipolar” and refers to a “Thermoregulatory Sleep Dysregulation Disorder” but commonly known as “Fear of Harm.” This is allegedly a complex and debilitating condition characterized by mood disturbances, fear of harm to self or others, thermoregulatory disturbances, sleep/wake disturbances (this has been an ongoing issue), aggression (link: he was 9 and worth a read), and significant impairment in functioning. That’s what got me interested in this proposed diagnostic criteria for Fear of Harm, clearly recognizing many of the symptoms, and offering my own as well as other possible potential causes, and the implications of the disorder on individuals’ lives.

[embeddoc url=”https://lovingthespectrum.com/wp-content/uploads/2023/07/Fear-of-Harm-Diagnostic-Criteria-Long-Form.pdf” download=”all” viewer=”browser”]

Since I learned about FOH (Fear of Harm), I’ve been actively participating in webinars and joined the only Facebook parenting group dedicated to this disorder. I’ve been immersing myself in personal stories, trying to understand how it relates to our situation.

However, today something alarming happened—my mother fainted in Walmart. To be fair, this isn’t the first time it has occurred. I’ve witnessed it happen multiple times, and as I reflect on those instances, I notice a pattern related to temperature and extreme situations. Today, it was incredibly hot and humid, and she was in an overcrowded grocery store. On other occasions, it happened during a minor medical procedure and once during a blood draw. It appears that heat and stress, trigger fainting episodes. Interestingly, my sister seems to experience the same issue.

Given that B has consistently shown distress and discomfort in hot temperatures throughout his life, often excessively sweating, it seems worthwhile to explore whether there is a connection to FOH.

Why this makes sense:

Since he was 8 months old, he has been plagued with an inability to sleep. We learned quickly to not put a blanket over him as we went to bed. Lately, he has been articulating his complaints of heat at night and then being too cold in the mornings. He does live in a camper so I was attributing a lot of complaining to that. Anyway, fuel for my ADHD, I am constantly ruminating about these things and wondering how it all fits together. More to the point, what can we do about it? We had settled pretty much on a diagnosis of dysautonomia for him and vasovagal syncope for mother, but is it really that simple? Does heat regulation really impact bipolar and other mood disorders?

So here I am (as I often do here) unraveling my thoughts around the multifaceted consequences of temperature dysregulation on our bodies.

What happens when we get too hot?:

    1. The Role of Thermoregulation: At the heart of our body’s defense against thermal stress lies the remarkable mechanism of thermoregulation. Our body tirelessly strives to maintain an internal temperature within a narrow range, allowing vital biochemical processes to function optimally. When exposed to excessive heat, this delicate balance is disrupted, giving rise to a cascade of physiological responses.
    2. Impact on Cardiovascular System: As temperatures soar, our cardiovascular system leaps into action, attempting to restore equilibrium. The body responds by diverting blood from vital organs to the skin’s surface, facilitating heat dissipation through sweat. This redistribution of blood can strain the heart, leading to increased heart rate (B regularly hits 150) and increased blood pressure. Although in my mother’s case, it seems more like a fast reduction in blood pressure. Regardless, the resultant cardiovascular stress may trigger symptoms like dizziness, palpitations, and even fainting.
    3. Altered Fluid and Electrolyte Balance: With perspiration being the body’s primary cooling mechanism, the loss of fluids and electrolytes becomes a critical concern. Heat exhaustion disrupts the delicate balance of sodium, potassium, and other essential minerals within our cells. Electrolyte imbalances can impede nerve function, muscle contractions, and cellular communication, causing fatigue, weakness, and potentially life-threatening complications. Our bodies run on electricity. “The elements in our bodies, like sodium, potassium, calcium, and magnesium, have a specific electrical charge. Almost all of our cells can use these charged elements, called ions, to generate electricity.” University of Maryland Graduate School, Amber Plante  Our whole family takes Vitassium Capsules to keep up with our electrolyte needs (if you have dysautonomia and rely on electrolytes give them a call, they offer discounted pricing for those of us with higher needs) –  Electrolytes we take daily: Vitassium Daily Salt Pills for Dysautonomia Management.
    4. Disrupted Central Nervous System: Temperature dysregulation profoundly affects the central nervous system, which coordinates vital bodily functions. Elevated temperatures may impair cognitive abilities, memory, and attention span, making it difficult to concentrate or make sound decisions. Additionally, irritability, confusion, and altered behavior may ensue, indicating the brain’s struggle to cope with the excessive heat. With that in mind, I bought him a cooling blanket to see if it helped any. He would give it 3 stars and said it does help but he still struggles even with the air-conditioning at full blast. Everlasting Comfort Cooling Blanket for Hot Sleepers – Dual Sided Bamboo Summer Blanket Reduces Body Temp in Under 5 Mins
    5. Gastrointestinal Challenges: The gastrointestinal system, responsible for digestion and absorption, can also suffer the consequences of heat exhaustion. Elevated temperatures can lead to decreased blood flow to the digestive organs, impairing their functionality. This may result in nausea, vomiting, and diarrhea, further exacerbating fluid and electrolyte imbalances.
    6. Musculoskeletal Strain: As the body grapples with heat-induced stress, the musculoskeletal system is not spared. Muscles, tendons, and ligaments may experience cramping, spasms, or even heat-related injuries. Dehydration and electrolyte imbalances can compromise muscle performance and increase the risk of sprains, strains, or heat-related muscle damage. This is why I personally continue with the Vitassium Electrolytes – I often have spasms in my arms and legs while I sleep. B always has a bad back, the AMAZON list of back stretchers and pain relievers is plentiful. One day I may list them all in a post but this is already longer than I wanted.

[embeddoc url=”https://lovingthespectrum.com/wp-content/uploads/2023/07/DYSAUTONOMIA-and-syncope.docx” download=”logged” viewer=”microsoft”]

Now, if you are still with me, I am assuming that we have a basic grasp of Dysautonomia, Vasovagal Syncope, and Thermoregulation dysfunction and their potential correlation with similar fight-flight-freeze symptoms, and we are left with important questions: Why does this happen? and Who else is pondering the same? How many of these symptoms overlap, and who determines clarification? I actually know the answer to that last one so consider that rhetorical.

Personally, I find it hard to believe that mental illnesses, mood disruptions, anger, frustration, depression, and other related disorders are simply random occurrences. There was a major controversy last year when it was revealed that serotonin may not play the role in depression that we once thought. This revelation makes sense to me, especially considering the high levels of dopamine and serotonin found in B’s spinal fluid during spinal taps. However, we still don’t have clear answers about the reasons behind this or the potential consequences. Nonetheless, it seems that B’s depression doesn’t align with the conventional understanding of low serotonin levels, or at least that’s my assumption based on the information we currently have available.

Then there is still Bartonella, GLUT1, and NASH, etc., etc., etc. which begs the question, “Which came first – the chicken or the egg? The bipolar/ mood disorder or the heat dysregulation?”

This psychology today article does align more with my thoughts about depression and other mood disorders and it’s worth reading in its entirety but to highlight:

  • Serotonin may not explain depression, but research on other brain pathways may provide answers.
  • The wiring and rewiring of our brains (neuroplasticity) is influenced by our lifestyle and may affect depression.
  • Our inflammatory state is affected by things like diet quality and sleep quantity, and has been linked to depression.
  • The gut-brain connection and our hormonal state are influenced by lifestyle choices, and are connected to brain health and depression

How can we find more answers when it seems like so few people are looking outside of what we already think we know? I don’t think I am the only one either (have you been on Reddit lately?). Anyway, I also saw this Twitter thread that someone had posted to Facebook and read with interest. Is it finally becoming time for psychology and mental health to focus on triggers not just symptoms?

So, is there a link between heat, bipolar, mood, and nervous system dysregulation, Smart money says yes, but solutions? In the relentless battle against the sweltering heat, our bodies valiantly attempt to maintain equilibrium. However, when pushed beyond their limits, the consequences of temperature dysregulation may be more than we realize beyond heat exhaustion. Heat exhaustion may just manifest as a formidable adversary, disrupting the intricate harmony of our physiology.

Maybe the best we can expect is to understand the multifaceted impact of heat exhaustion and empower ourselves to take proactive measures. Can we address heat regulation and positively impact bipolar, and other mood disorders by staying hydrated, seeking shade, wearing appropriate clothing, avoiding excessive physical exertion in high temperatures, and safeguarding our mental health? There is a webinar on the Children’s Mental Health Resource Center’s website  coming July:

  • July 2023: Cooling Strategies & Cooling Plans (register)
    • Cool, cool, cooling for the hot, hot, summer. Families and practitioners alike, come learn about how to use simple at-home cooling strategies to manage Fear of Harm symptoms all summer long. We’ll go over how to build a plan to integrate these thermoregulation techniques into daily life. Each goes a long way to reducing overheating and making sleep, moods, and all of daily life more manageable.

CMHRC hosts monthly informational webinars on the 3rd Wednesday of each month, from 7:30-8:30 pm Eastern time via Zoom. These events are free and open to the public and may offer more ideas, strategies, and solutions for those of us who need them.

Drop your comments below, help me out and follow me on social media, and don’t forget to read my Amazon affiliate disclaimer:

FOLLOW INSTAGRAM, FACEBOOK,  PINTEREST & YouTube

Disclosure: This blog post contains affiliate links from Amazon.com. As an Amazon Associate, I earn from qualifying purchases. This means that if you make a purchase through these links, I may earn a small commission at no additional cost to you. I only recommend products and services that I personally use or believe will be beneficial to my readers. Your support through these purchases helps me to continue providing valuable content on Loving The Spectrum, rest assured, I still have to work a day job :D. Thank you for your support!

Dr Richard Frye Presents in this CME Series

by

Dr. Richard Frye Presents Understanding The Overlap of PANS and Autism –

An Overview of Research on Antineuronal Antibodies in Patients With Autism

Continuing Medical Education Credit (CME)

[Read more…] about Dr Richard Frye Presents in this CME Series

Mold Remediation

by

Mold Testing as well as Mold Remediation

(Finding Mold is Only Half the Battle)

Mold testing and mold remediation are never far from my mind. Now we have left Florida behind and are happily back in our own beds we should be elated, except the mold remains a constant headache and we must deal with that situation sooner rather than later.

Now I am back, I am determined to resolve the mold in our house that has caused some health challenges. This has been an ongoing issue for almost a year now but has become more pressing because right before I went to Florida, I had a dermatology appointment to have an area on my forehead biopsied. This area has been raising, scabbing and healing for several months but it is (or it was) time for it to go. I say was, because while we have been away, it has gone anyway. No trace of where it had been. All I can think is that staying in a house with filtered air potentially [Read more…] about Mold Remediation

PANS, PANDAS and Encephalitis at School

by

Prepare to send your child with PANS, PANDAS (Encephalitis)

Back to School…

This can be a terrifying thought, but school begins exactly 4 weeks from now and we all want to be ready.

My best advice for anyone going through this battle? Understand school is rough for a lot of kids, let alone a child with encephalitis. A kid with PANS (PANDAS) has to battle fuzzy thinking, poor memory, dysgraphia, the need to go to the restroom 27 times a day, poor focus, loss of executive function skills, tics, compulsions, obsessions, separation anxiety can make school seem almost impossible. This may have been a child who was on the honor roll or an average student, it doesn’t matter, this disease can impact any of our children without warning. It’s nothing they did or didn’t do, and it certainly is not their fault but now they have to manage in a system that doesn’t quite understand what happened to them or how to help them. The goal for a parent now is not only for their child to remain in school but also to help them gain some traction in their studies.

Do you have an IEP or 504 in place?

If you have a child with PANS (PANDAS) and are worried about the upcoming school year, call the district offices now and schedule an appointment to talk about obtaining or adding to a 504 plan, or an IEP or even to request that school perhaps begins with homebound or intermittent homebound services already in place as the best option. You have to educate yourself now to make sure that the plan is already in place before your child walks back through those doors for their first day back to school. My favorite books for a child with PANS (PANDAS) in a school setting are

      

I think both of these books are superbly laid out but for our team table talks “PANS, CANS and Automobiles” proved slightly easier when we used it as a visual aid in our meetings. My yellow-highlights throughout each section helped the team build on an already comprehensive and goal-oriented IEP. The “Handbook for Educators” has been purchased over and over as well as it has proved a perfect resource to leave with members of our IEP team. We have been lucky as his team has continued to try some creative strategies for our kiddo struggling with post-infectious autoimmune encephalitis.

How to Navigate the often Complex and Confusing IDEA System of laws and make it work for your child.

In terms of IEP versus 504 requirements and understanding the laws that go along with those requests, we first purchased Wrights Law books in 2014 and in 2018, after we attended a live Wrights Law presentation, we got nice new, updated versions. We find we need to refer to these texts often.

     

 

This particular book is smaller and easier to read than the two above but a great little real-world reminder with real-life situations that other parents have encountered and what they were able to do about it.

I would love to hear your thoughts on other resources that might be available, please share creative ways you found to keep your child in school and learning while recovering from encephalitis.

#PANS #PANDAS #postinfectiousautoimmuneencephalitis #PAE #school #IDEA #IEP #504

Life after treating Lyme

by

What’s life like after treating Lyme?

January marks month 7 on Laser Lyme protocol.

Where are we now? It’s been an interesting few months, new moons, full moons, Christmas, Halloween, New Years, quite the plethora of reasons to expect hyperactivity, tiredness, and general backsliding. To keep that in check, we still remain true to our NELL protocol, but with the kids back in school, hubs back to work and my commitment to campaigning for legislative changes here in the state, it could easily slip away from us.

That aside, where are we now? Are there regrets over that long summer in the camper in NE? Have we seen any further progress? How are we maintaining?

Well in true and typical fashion nothing is very easy or predictable but we are still sitting around 80 & 85% – we haven’t made any real progress forward in the last few months really but the good news is – we haven’t gone backward. That alone is worth celebrating. We have continued to follow NE Lyme Laser protocol because it is working for us (although we don’t do the exercise and oxygen every day, or the footbath every week, and we have also not been to a chiropractor since we got back), but we do take the drops religiously every day, 3 times a day to keep the Lyme at bay. We have also chosen to work with a nutritionist (Real Food Rebel) to try to address some other areas we know we have challenges in. We completed hair testing and in light of that Brenda at Real Food Rebel has determined a targeted supplement regimen for us. Now we follow a program for healing their digestion challenges. My kids continue to do “ok-ish” on both of these programs combined. The rashes are going or gone, skin is becoming clearer and overall the kids are functioning at home and at school, which is helpful for us all. One little bump in the road is that we are having to remove the amantadine that proved so beneficial in the beginning. If you read back through old posts, after much trial and error (actually 15 different trial and errors) our doctor had prescribed amantadine – just to try and affect some positive change in impulse control. Starting amantadine is what we now refer to as a turning point for our family. Initially, we didn’t see much progress on just 100 mg once a day but once we went to the twice-daily dosing schedule, we started to see big changes. Later a tonsillectomy and adenoidectomy proved equally as beneficial and finally, we got to a point of stability which then enabled a return to school – so life changed drastically from those two interventions for sure. Anyway, around October or November last year an intermittent arm/hand tremor started to became an everyday occurrence and it was decided the time had come to remove this NMDA antagonist/antiviral/ dopamine agonist drug. Tremors can be a side effect of this medication. Never the less, it is bittersweet (it helped so much but no one wants their kiddos on long-term pharmaceuticals) to let it go because we had seen that huge progress using the Amantadine (rationale for use).  It can also be tough to take this particular medication away so we are titrating down very slowly. We know that irritability, depression and suicidal ideation can be an issue with amantadine (both on it and coming off), so we are being cognizant that we might see positives and negatives in those areas before we are completely done.

As a parent, navigating all this information is overwhelming sometimes, I had heard the terms “NMDA antagonist” and “dopamine agonist” before all this started but it wasn’t my go-to in any conversation and I probably couldn’t have used either in a sentence. It was never anything I thought I would need to know, but now these terms and definitions are added to the ever-growing medical vocabulary tucked inside my memory banks. I feel like these definitions must be firmly solidified in my head because, during conversations with medical providers, we need to be semi-knowledgeable enough to agree with treatment plans which sometimes have to happen on the fly.

So what’s next?

MOLD

It turns out that life after (or with) LYME often centers around mold, and this is now the new rabbit hole we have decided to chase down. I am exhausted and would really prefer to snuggle under my duvet and ignore any more LYME, PANS, Mold or infectious disease processes, seriously I really don’t know whether to laugh or cry at the thought of starting a new project all over again. My house has been tested 3 times in the past year, and we have high levels of Aspergillus penicillioides amongst other fun stuff. We only found this out after much convincing to test from friends who all agreed more had to be going on. I really didn’t believe there was mold in my house because A: We have no active leaks and B: We had completely renovated the house 5 years ago when we moved in. I was positive there was no mold, but to stop the questions, I ordered an ERMI test from Mycometrics . No one was more shocked when the results came back really high and Aspergillus was the worst.

We set to cleaning every room with a combination of water and Everclear, we also threw away hundreds and hundreds of items that might have been contaminated by mold. We painted rooms with low VOC, mold resistant paint, and we even purchased an HI TECH machine along with 2 very large unattractive Dri Eaz air scrubbers, but the mold still remains somewhere in this house. Sure, our ERMI scores have gone down significantly but not yet low enough to be considered “acceptable” to live in for someone with a Chronic Inflammatory Response Syndrome (CIRS), which we seemingly have. So – as exhausting as it is – we plan on using a different company (Conflict Free Mold), to take new samples. This will mean I can afford to do every room individually. Prior testing was one sample from multiple rooms combined on the same cloth, we did it this way simply due to cost. Unfortunately, this means that while I know I have mold and what type, I have no idea at all where the mold is concentrated or where it has spread in the house. So, pith helmet on, flashlight in hand, crawlspace here we come… not really, I will purchase a kit, and send off 10 samples (one from each room) and see if we can finally pinpoint where our problem area or areas are.

This journey was never going to come down to just one thing I suppose. It’s been caused by many things stacking against us for a long time. Lyme may be one of our triggers but the post-infectious autoimmune encephalopathy we are struggling with now, is the end result of many, many, many things, or at least it is for our family. This may help explain further – Moleculara.  The longer this goes on, the more we find out, the harder we must work to resolve it. We want what everyone else wants – our kids to be as healthy and happy as possible in this life. Mold is toxic, gene SNPS create issues, bacteria, viruses, unhealthy diets, allergens and environmental toxins aggravate an already stressed immune system but we still want the best for them. So, for now, all we can say is:

“Mold!! – Challenge accepted.”

 

Subscribe for the latest updates on our Journey Back to Health. What to expect when encephalitis becomes an unwelcome visitor in your home!

We promise to never sell, barter, share or trade your information, “Namaste”.

Subscribe to Our Newsletter