#pandaspans

[pandaspansawareness]

Disabled Rage

We talk a lot about female rage which is great (rage that stems from a lifetime of being faced with misogyny), but we should also be talking about disabled rage (rage that stems from a lifetime of ableism, being misunderstood, and unable to get the appropriate care.)... For years I have struggled with a constant internal sense of anger that has destroyed my mental health and has caused issues with adrenaline surges and a fear of seeking healthcare. Here are some examples:

Tourette's specialists refusing to believe those of us with Tourettes when we say suppression harms us, and trying to silence people with the condition as they believe that they know more about TS than the people who actually have it.

POTS specialists acting like forcing yourself to walk more and exercise will cure you when POTS often co-occurs with ME/CFS and similar issues that cause post-exertional malaise meaning that being pressured to walk more and exercise can use what little cellular energy you have left to the point where your body cannot regulate the autonomic nervous system at all and it all just gets worse. Since using a wheelchair and exercising less my POTS has been less horrific to deal with but so many "POTS coaches" and doctors refuse to listen.

The "OCD cycle" making me feel like a failure for being unable to stop my rituals because I literally thought that my thoughts could cause the end of the world and that the aliens in the afterlife would be angry at me. I felt so guilty for not being able to stop this "OCD cycle" that I purposefully didn't get treatment for an ankle infection that had grown almost 10 times its size and had gone all purple because it made me believe I deserved the pain.

The medical system denying the existence of Chronic Lyme despite over 700 peer-reviewed scientific articles and studies showing Lyme and co-infections can persist despite antibiotics and therefore be chronic. If you believe in antibiotic resistance and post-infectious inflammation there is zero reason not to believe in chronic Lyme. Due to this denial, we are forced to spend thousands on private healthcare as even the NHS won't treat us. I would be de@d without long-term antimicrobials.

Autism "specialists" who know hardly anything about Autism and refuse to listen to Autistic people.

Natural and alternative interventions being seen as "quackery" even when they are evidence based when they are essential for those of us who react badly to medications or can't afford medications. I wouldn't be alive without some alternative interventions, and yes they are evidence based with scientific studies backing up their usage.

Hospitals being inaccessible with no room for wheelchairs in the waiting room, extremely high reception desks where they can't see a wheelchair user over them, toilets with the red call string tied up where disabled people ironically can't reach it...

Constant medical gaslighting, having doctors dismiss and belittle serious issues and deny referrals to the point you either have to spend thousands of pounds on private healthcare to save yourself or self-diagnose to save yourself as you have no other option and have people ridicule you and say "sElF DIAgnoSis IsN't VaLID" as if it's a choice - it is traumatic to have no option but to diagnose yourself because the medical system is in shambles and won't help you. Diagnosing myself in the past when doctors wouldn't listen not only reduced some of the trauma caused by doctors, and saved my life. It is a privilege to be able to get a formal diagnosis.

Not being able to exist online as a disabled person without being fake-claimed or harassed by strangers...

This is just the tip of the iceberg. I don't know if myself or others like me will ever find peace.

[bloodonvalentine]

i feel like something i never talk about on this blog are my experiences living with PANDAS. it's probably because it's not like, incredibly relevant to this blog, but i want to start talking about it.

it's such a poorly understood and rarely spoken about disorder and it has completely changed my life. i was like. somewhat normal until age 10 when i caught it. (yes this is a disorder you can catch, it's formed due to contraction of strep a)

this disorder has made my life a living hell.

im not going to go into detail, but if you look up PANDAS, you'll understand why. the only reason we even considered it as a possibility when i was getting diagnosed was because of the development of motor and vocal tics, which i had never experienced before 2017.

it's hell to live with, and i always say i got the short end of the genetic stick, but this is just a whole other level of bad luck.

anyway, thanks for reading my rambling. if you're interested in hearing more about it, lmk and i might make a blog for my personal experiences or something idk

bonus cat

[seaseachronix]

Guys, I’ve been thinking I have Bartonellosis, I have all the symptoms, fever, anxiety, depression, rage, and also blurry vision and vision problems, anyone else think so?

[bncclinic]

Understanding PANDAS Syndrome: Symptoms, Causes, and Treatment

Discover essential information about PANDAS Syndrome, a pediatric autoimmune neuropsychiatric disorder linked to streptococcal infections. Learn about its symptoms, causes, and effective treatment options. For detailed insights, visit our dedicated page on PANDAS Syndrome.

Contact us: (03)9848 9100

Visit: https://www.adhd.com.au/pandaspans/panspandas-syndrome 

[placentamom]

Sharing this personal post to help raise awareness & also as a heartfelt thank you to everyone in my birth/placenta world for the love & support this last year as I balanced my practice & the immense needs of my family. 💗 A year ago today I was blindsided when the word PANDAS came our of our pediatrician's mouth. I had only heard it one other time & thought only children with autism could have it. I remember feeling rocked to my core, but kept it together as we drove home. Chepe was sleeping & I didn't want to wake him up, but when I walked in he asked how our appointment went. All I could muster was, "not good, they think it's something called PANDAS." From that moment on our life changed. Now we know it changed before then, but that was the moment we couldn't deny our gut feelings that something was wrong any longer. The storm we have weathered this last year has been at times more tormentous then I can even put into words, but we have weathered that storm together for Lily's sake. No, it may not be over and we are definitely different then before, but we are ok and that's what matters. Thank you to everyone that has been there for us to be sure we all were OK. To be sure that Lily is OK. We so appreciate you helping us make it through ❤️. #thankyou #pandaspansawareness #pandaspans #pandasawareness #autoimmune #autoimmunedisease #autoimmuneencephalitis #savingourpandas #placentamom #sacramento #placentaencapsulation (at Sacramento, California) https://www.instagram.com/p/B0Ei0gsgn1X/?igshid=9b973t0iqp8b

[doingitthehardway]

go back to what makes you happy.

It has been a brutal year. so brutal in fact that I am just now realizing that in order to survive what comes next I will have to save most of my energy for taking care of my youngest son Quinn who is currently is going through a spectacular bout of anxiety and OCD. Autism is one thing but we are currently in the process of having my son diagnosed with PANS or PANDAS which is basically and autoimmune reaction that causes significant inflammation in the brain which then leads to OCD like behavior, anxiety, tics and in our case stuttering refusing to interact with anyone, and bouts of aggression. 

http://www.pandasnetwork.org/understanding-pandaspans/what-is-pandas/ 

So in amongst all the work, the therapist appts. trying to learn the best way to use an autism advocate, trying to sell my home and move to a better school system, the psychiatrist appts, the neurology appts 3 hours away, I need to keep a hold of something that is mine.  I have done an Ironman or half Ironman every year for the last 7 years. Is it 7? it might be 8.... hold up a sec. https://www.athlinks.com/athletes/60869575/results looks like it was 7 years. 

 Doing endurance sports makes me happy, makes me feel accomplished, it makes me feel successful. Autism, PANDAS parenting does not for the most part give me a feeling of success, it is a long road with no markers or road map and no promise of upwards development.  It is accurate to say that my family is in a state of almost complete lockdown. We are unable to go anywhere with Quinn due to unpredictable behavior, random rages and his super high anxiety response to anywhere other than our house or my truck. 

The last few years I have set big goals for myself and managed to somehow squeak through and make them happen. In retrospect this is basically a miracle. Every year the last 3 years my life has become gradually subtly ever so much smaller year to year month to month day to day. We used to go to at least 2 restaurants. Now its a big deal to get a slurpee at the 7/11. We used to be able to go to the doctors office. The last trip to the doctors I ended up using ativan to calm my son and we still ended up with screaming when the Doctor tried to use the stethescope. 

My older son and I were able to travel by ourselves to Atlanta and visit with family over Christmas for 4 days. We had an amazing time. It made me realize how completely small my families life, my life has become. The littlest things were an adventure, going to a farmers market and having the chance to talk to vendors instead of worrying where my son was or when he would melt down and run to the truck. During this visit I took the opportunity to run.  The previous week I hadnt run at all. Which to be honest is a pretty good indication of how bad my mindset was. The weather the first day was 68 degrees. I headed out with literally the least amount of clothing on I could pull off with out getting an indecency charge by the local PD. It was slow but wonderful. I used to think I was relatively speedy, then 2 things happened, 1. I got older and 2. I raced Ironman for too long.  Anyway the runs have been a blast and on a lighter note Ive managed to keep running not far not fast but every day since then.  

So that leads me to my current state. Its January 1rst. Im trapped at home with a son who needs significant medical help, my to do list is 5 pages long, literally. Now is a time to set big goals right? All those memes say, push as hard as you can for as long as you can then push harder, just do it, never give up, more is more, harder faster longer.  Guess what? No. Just no. More is not more. Sometimes things need to be simplified and brought down hopefully in order to let some joy come out and some mental and physical recovery happen. But I cant just give up. So I will do this. I will go back to what makes me happy. I will just run. I have some small goals but I think I will keep them close to the vest right now.  Lets lick our wounds and look forward and hope, wish, pray, even though I dont, that the next year will be kinder to my family and myself. 

[let-bi-gongs-be-bi-gongs]

@pandaspan @tiddy-kitty

Making this released a curse onto my soul

[pandaspansawareness]

A Poem To Those Who Don’t Accept My Tics

People say it’s a disorder

Like something in me’s out of order,

They want to banish it out of me,

But why can’t they just try to see? 

They see it like the spawn of satan, 

Is the one making me twitch, 

But what we really need to straighten,

Is the fact that it’s not just a glitch. 

This ‘glitch’ you speak of helps me,

Why can’t I just tic free?

Why can’t we just accept this unique form of diversity? 

They want me to be ‘fixed’,

As if loving me and having tics can’t be mixed,

They want me to be ‘normal’,

As if I constantly have to be formal,

But can you imagine,

How boring that would be?

You may not know the strength it took,

To accept myself as I am, 

But you look at me like I'm some sort of crook, 

Who just couldn’t give a damn. 

I refuse to make you comfortable,

In your ableism,

I’m ungovernable.

You must love me as I am, 

If you truly love me like you say. 

Do you love me as I am,

Or just as you want me to be? 

I want to be free, 

Not from my ‘disorder’, 

But free to be me,

You were out of order.

Why won’t you just accept me as I am?

Why do I have to change for you? 

Why can I not just be loved with my condition? 

I refuse to be ‘cured’

Just to be seen as ‘acceptable’. 

You likely don’t know what I've endured,

The judgement is what’s unacceptable. 

The problem wasn’t me. 

By Romy. W

[wewilliamlambert]

PANDAS/PANS Awareness Day 2019 T Shirt

PANDAS/PANS Awareness Day 2019 T Shirt

https://teespring.com/en-GB/pandas-pans-awareness-day-2019 https://teespring.com/en-GB/pandas-awareness-day-2019 https://teespring.com/en-GB/stores/pandaspans-awareness-day https://teespring.com/en-GB/stores/pandaspans-awareness-day-2019

Every year on 9 October, patients, families and healthcare professionals come together to raise awareness and spread understanding of paediatric autoimmune neuropsychiatric disorder associated with Streptococcus (PANDAS) and paediatric acute-onset neuropsychiatric syndrome (PANS).

What are PANDAS and PANS?

PANDAS and PANS are autoimmune disorders, meaning that they are caused by the immune system attacking a person’s own tissues. In the case of PANDAS/PANS, the immune system attacks structures in the brain called the basal ganglia, which are found at the base of the forebrain [1]. These structures are thought to be involved in movement and behaviour; therefore, symptoms of PANDAS/PANS include motor tics, obsessive compulsive disorder (OCD), deterioration of handwriting, mood swings, sleep disturbances, restricted eating, irritability and anxiety.

[lifewelllived-blog1]

I guess the title of my blog still holds true.  A life well lived.  

For example, I didn’t feel like life was too well lived lately.

Let me back up a little.  My older son was recently diagnosed with an autoimmune disorder.  Pediatric Acuteonset Neuropshychiatric Syndrome.  http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/

It’s basically an autoimmune encephalitis.  (Brain swelling/inflammation)  This is on top of Asperger’s, ADHD combined type, and Executive Function Disorder issues.  Never mind some of the other things, medically speaking, that he is dealing with.  

It all fell on me like a ton of bricks.  I don’t often breakdown. I don’t slow down or let myself cry.  i had no choice today.  I had an appointment with the youth pastor and confirmation coordinator today to discuss “the boy’s”summer.  All I could do was just cry.  (God was working through KSBJ today.  EVERY song that came on was HIM whispering something in my ear.)  

I couldn’t keep it inside anymore.  For 8 years I haven’t let myself go or I just kept stuffing/putting things on an indefinite hold.  It hurts and it’s hard.  

I never asked to go to Holland.  All I ever wanted to do was go to Italy.  (http://www.our-kids.org/Archives/Holland.html)  I didn’t ask for this and neither did “the boy.”  

The stress, fear, loss of control, life as I had planned.....hit.  

I’m not angry at God, but I do hurt.  We didn’t ask for this.  He doesn’t deserve this.  I’m jealous sometimes.  Other moms and dads have “typical” kid issues.  Surly, teen/preteen behavior; stinky bodies, competing in a sport, etc. ( We tried that.  Did NOT stick. )  We have all of the above issue, and more.  We as special needs parents, grieve this loss.  EVERYDAY of our lives.  We don’t look on our children with lack, we just wish it was better or different for them.  

Imagine, watching a darling/silly/funny 12 yr old act like and decisively younger than his peers.  They look at him strange.  With love, but strange.  It hurts.  I want to take it away.  Make it better.  (Thank God he doesn’t see/get it all the time).  

Watching other kids mature and start navigating the “normal” teenage process.  He still wants to watch Elmo with his brother.  

Many people would say “He’s happy, healthy, he can talk to you, etc”  Yes, he can.  

But this is my moment and I know all of the difficulties that lay behind all of that.  I know what it’s like to deal with night terrors, the tics, the obsessions, listening to the same thing 5million times in the course of the day.  

This is also watching him with his friends at church and knowing he can’t always go on all the activities.  Too many mitigating factors.  It sucks.  I want him to have those experiences but they are someplaces we just can’t go yet.  

BUT, I did run across a devotional for him when I was looking this afternoon.  It’s from Jon Foreman of Switchfoot.  The scripture from Psalm 119:14 ....first part  I praise you because I am fearfully and wonderfully made; “  Stop and think about that.  “The boy” IS fearfully and wonderfully made.  God does have a plan that I don’t understand, for him.  I don’t have that knowledge.  I can’t see it. I have to trust.  God knew this was coming along, HE knows what is going to happen, HE has it covered.  I don’t.  And....HE will cover it all.  He is made perfect in HIM.  He is flawless and has so much value to offer.  So much to give.  Believe it or not.....it brought me comfort.  That God made him......HE crafted him in HIS own image.  HE saw perfection in him.  

I don’t ever have all the answers.  I often jump in when I should be “jumping out” of the picture.  It’s a never ending struggle and it’s comes with its peaks and valleys.  Today was one of those valleys.  BUT, at the bottom, I could see a few rays of sunshine.  Today.....they came in the form another mom and an incredible youth pastor reaching out with Christ’s love and compassion.  Thank you.  

[let-bi-gongs-be-bi-gongs]

@pandaspan

[farwiayas3-blog]

We need to mandate insurance coverage of PANDAS/PANS - ... - https://goo.gl/Me1DHg - #Auto_Insurance, #Coverage, #Insurance, #Mandate, #PANDASPANS

[pandaspansawareness]

Everyone working in the mental health sector should know about PANS/PANDAS/BGE.

PANS is a clinical diagnosis and is caused by so much more than just Strep

1 in 200 people are thought to be affected

It is often misdiagnosed as Tourette Syndrome, OCD, Schizophrenia, Bipolar Disorder, ED’s, Autism, ADHD, ODD, etc.