ParentingPANS

Respectful parenting with a PANS dx

[Nele @NeleHelena]

Are you also ignoring your life this hard because you really tried and looked for help, but no one wanted to help, so you just ignore everything and escape until the fragile life you still have falls apart even further. 1/2

[Hannah Cox @HannahDCox]

I’m not into astrology, but the point behind this is correct.

I was told to challenge men on first dates on something kind of important and see how they react.

Egotistical, self-absorbed, angry men will NOT like it. But women are so agreeable that they often don’t see that side of their male partner until months into dating when they’re attached.

So I asked my now husband on our first date if he was REALLY 6’0 like his dating profile said, knowing height gets many men in their feels. He laughed and said “I think so? I’m pretty sure.” I told him no, he was 5’11, I could tell as a tall girl. And the next day he called me laughing and said he retook his measurements and I was correct. ✅

[Ellie Leonard🇺🇦 @RedPencilScript]

Just over a week ago my 14 year old had a 2+ minute seizure. She went to the ER by ambulance where she was admitted for a 24-hour EEG and MRI, along with other testing.

Today @Aetna denied covering any of it because it wasn’t “medically necessary.”

[Stella Chadwick | Functional Medicine @stella_chadwick]

A UTI can make an elderly person delirious, paranoid, even psychotic - and no one questions it.
It’s standard medicine.

But a child develops OCD, rage, food refusal, hallucinations after strep or a virus - and suddenly it’s “just anxiety”?

Really?

We’ve known for decades that infections can mess with the brain. That inflammation can hijack behaviour. That immune cells talk to neurons.

So why is it still taboo to say a reactivated virus, strep, Mycoplasma or chronic inflammation could cause neuropsychiatric symptoms?

Why is psychiatry still acting like the immune system doesn’t exist?

In our clinic, we see it all the time:
➡️Kids misdiagnosed with “mental illness”
➡️Underlying infections ignored
➡️Immune dysfunction missed
➡️Told “it’s all in their head”

But here’s the thing:
It is in their head.
It’s just coming from their immune system.

Until medicine wakes up, children will keep slipping through the cracks - mislabelled, misdiagnosed, and misunderstood.

Link to blog in comments 👇

#Neuroinflammation
#PANDAS
#PANS
#FunctionalMedicine

[Candace D. @DiaryofaSickGrl]

It cracks me up how so many healthy/abled people think they’re honorary doctors just because of their health! 😂 You know who *actually* has had to learn more to survive? The chronically ill/disabled. The people gaslit by their doctors that have had to take so much of their care and treatment into their own hands.

[Naomi Fisher @naomicfisher]

So much of what we do to children is justified by predicted future disaster.

If we don’t make them sit still, they’ll never stop bouncing.
If we don’t make them do phonics, they’ll never learn to read.
If we don’t impose consequences, they’ll never understand why it’s wrong to hurt others.
If they don’t get used to doing things they don’t like, they’ll never hold down a job.

Like this, we justify spending their childhoods making children do things they don’t enjoy and don’t see the purpose in.

We justify pulling them away from the playing they are desperate to do, in order to fill in worksheets. We teach them concepts they find confusingly difficult, but which for a child a few years older would be trivially easy.

We make rules which make no sense, and send them to detention when they fail to measure up. When they protest, we tell them that we know better.

‘The alternative would be worse’, we say to ourselves. ‘It’s for their own good’.

We see their distress as signs that they just don’t understand, and console ourselves with the thought that they’ll thank us when they’re older.

They’ll ‘get it’, and they’ll be grateful that we didn’t allow them to run around in circles and roll in the mud, but instead insisted that they memorise their number bonds and walk silently down corridors.

What if it’s not true? What if children could be children now, and still grow up later? What if playfulness and spontaneity didn’t need to be squashed, and they could spend their childhood doing the things which have purpose to them now?

What if we knew that a childhood doesn’t need to be spent rehearsing for adulthood, but valued it for the unique time that it is?

If we accepted that, we’d see their distress quite differently. We’d find it less easy to dismiss.

For then we’d ask ourselves, is really worth it? We’d see our children’s unhappiness as feedback on the life that they lead - and challenge ourselves to do better.

[Candace D. @DiaryofaSickGrl]

MCAS has affected my life in ways nothing could’ve ever mentally prepared me for. You couldn’t have prepared me for the isolation of avoiding triggers so I don’t go anaphylactic. You couldn’t have prepared me for years of watching everyone else eat and drink normal foods while I can only have a few very specific ones. Nothing could’ve prepared me for the feeling of my tongue and throat swelling over and over and over for years. Nothing could’ve prepared me for giving up traveling more than a couple hours away from home…I could go on and on…

But what you couldn’t have prepared me for most of all, is the selfishness and ignorance of others while battling all of this. And the way that people always expect me to be perfectly positive while battling something soul crushing and mind numbing for years.

[Nele @NeleHelena]

There are so many people, traumatized by healthcare.

And there's so little we can do. Therapists operate in the same system that caused the trauma. They are subject to the same systemic bias. Chances are you first find many therapists that add to the trauma

1/

[Chris Alvino @ChrisAlvino]

And it's even funnier bc it's the same thing being said by THOUSANDS of women in the replies. The issue isn't that women are lying, it's that men DONT FUCKING LISTEN TO WOMEN, and that, is why they fail

[Naomi Fisher @naomicfisher]

‘School hasn’t changed! Why are so many more young people unable to attend? Don’t they just have to learn to put up with it?’

I’m often asked all of these questions. So here’s a quick answer.

School has changed since most of us over the age of 30 were there. Starting in 2010 with Michael Gove, there was a deliberate shift in schools to a ‘knowledge-rich curriculum’.

This meant, more focus on learning information and facts. Less focus on play, creativity, problem solving and social and emotional skills. There was a philosophy which ignored child development and instead focusing on how to get more information into children and more test results out. More standardised tests have been introduced starting in primary school. Phonics Screening, Multiplication Tables, Spelling Punctuation and Grammar ‘checks’ AKA tests.

Secondary schools have become more controlling. I hear regularly of schools where children walk along lines painted on the corridors in silence. I hear of frequent use of detention and isolation. Parents tell me quietly and say that they can’t complain openly because their children don’t want them to make a fuss. There’s a lot of focus on exam results, and education has become about retaining information.

All of this has a huge impact on children’s day-to-day experience.

More pressure has been introduced throughout the system. There are fewer options for those who don’t enjoy academics. Teachers are stressed, parents are stressed and it all results in stressed children. When they start to say they can’t go to school, the answer is more pressure. When parents complain they’re called vexatious. The answer is fines and threats. No one is listening.

So, no, I don’t think this is the ‘real world’ and they ‘just have to learn’.

I do think that something has changed. Schools have become less child-friendly, and the children are telling us so.

[Naomi Fisher @naomicfisher]

I’m hearing from ever more parents of primary school aged children that their children really don’t like school. They say that it’s boring, that they have to sit for long hours listening. Parents say that young children are taught things which they, their parents, have never needed to know. Things like ‘fronted adverbials’ and the difference between homophones and homographs.

Which wouldn’t matter if the children were interested and curious, but this isn’t why they are learning those things. They’re learning them because someone has decided that this is the best way for young children to spend their time.

That these – fronted adverbials, for example - are the most important things.

Parents say that their children are stressed about school work before they’ve even turned seven. They say that children wake up at night worrying that they’ll be put in the Red Zone or taken off the Sun and put on the Rain Cloud.

They say that when they tell school that their child doesn’t want to come, school tells them that maybe home is just too nice. They suggest that rather than improving their experience of school, parents should focus on making their experience of home worse so school seems better in comparison.

Huh?

How does that make any sense?

We’re losing a generation of children. They’re learning that they don’t like to learn, at the stage of their lives when they should be bursting with curiosity and excitement. By the time they are nine, some of them are already saying that school is ‘just something to get through’.

Here’s my take. Education shouldn’t be about ‘information in’. The first priority should not be covering content or passing tests.

That is something which can happen later, but first?

We need to inspire children about learning.

When our young children think that they are stupid. When our six-year-olds learn that learning is irrelevant and difficult. When our eight-year-olds believe that they are bad because they can’t sit still and concentrate?

Those things last a lifetime.

This is the foundation of education. If we get it wrong now, we’ll be dealing with the consequences far into the future. Our children need change.

[Emily May @emilykmay]

I am frustrated by the idea that disability has to be sanitized and positive. If your disability feels integral to who you are and you wouldn't change a thing, I believe you. But plenty of folks would love to not be impacted by disability. Disability is unchosen and difficult.

[Candace D. @DiaryofaSickGrl]

People expect me to operate as if chronic illness is only a tiny part of my life when it has affected every aspect of it.

[Candace D. @DiaryofaSickGrl]

Many healthy/abled people wrongly believe that they have earned/deserve their health and therefore could never lose it. Many people who exercised, ate right, were good people, had faith, (checked whatever “boxes” you think they’d need to) have lost their health to no fault of their own. It can happen to anyone at any time. And people need to learn that and stop treating chronically ill/disabled people like they’re “less than” or deserve it.

[ParentingPANS @ParentingPans]

@DiaryofaSickGrl Doordash gift card

[Amy ❯❯❯❯❯ @absolutelyamyyy]

Honestly being part of the chronically ill community is such a weird experience.

It is horrific being in this situation where your life has been ruined thanks to your health.
But the people you meet who are also chronically ill are the only people who can even begin to comprehend your life, but they’re the most lovely, supportive people. And the last people who deserve to understand what you’re going through.
So much love to my chronic illness warriors🫶🏻

[Sky @TheSkayeth]

California’s water was stolen.

Most people think droughts are natural disasters.

But behind the scenes, one billionaire couple quietly stole California’s water supply—draining regions, fueling fires, and making billions.

Here's how they did it: 🧵

[Emily May @emilykmay]

if you are in a loving, reciprocal relationship with a partner that pulls their weight, you do not give a shit if they occasionally forget to take out the trash.

if you are overwhelmed and drowning because your partner has not been pulling their weight for years, they say they'll get better, and then you wake up in the morning and everything they said they would do *still* hasn't been done....it can be a breaking point.

[Tim Urban @waitbutwhy]

Update: It turns out that the laws of physics are a thing and opening a single window in my office barely moves any air in or out, which is why the CO2 barely budged. But now I've discovered (with help from @Liv_Boeree) that when I also simultaneously open the front and back door of the house, a draft blows through the house and literally 2 minutes later, the office CO2 level has dropped from 1000+ to like 550.

Even after I close the doors and window, CO2 stays low for a few days before slowly creeping back up. Then I open the doors again and it drops back down. I think of it like flushing the air toilet. I realize now how obvious this is and can't believe I spent the last 20 years never flushing the air toilet in my living spaces. (The fact that it takes only a couple minutes is huge because I can do this even when it's super hot or cold outside and leaving windows open isn't feasible.)

Wanted to share in case any of you also forgot about the laws of physics and have been breathing stale air every day.

[Drop seeds not bombs @helenaddy]

Too many women have the experience of the man in their life walking past a full trash can, a pile of shoes, and a sink full of dirty dishes to ask, "Is there anything I can do to help?"