Guilbault Girls

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Guilbault Girls Giving Value to Families Through Education, Resources and Experiences One Story At A Time! well you can do that by simply sharing our show to the masses.

“It takes a village to raise a child” ~African Proverb ~

Welcome to the Guilbault Girls Show where you will have the opportunity to hear from mothers, fathers, siblings, and individuals themselves about their journey of living with a disability. We also have special guests on to share the many resources that are available to those living with a disability and their families. So, get ready to lau

gh, smile, cry, maybe even get a little angry when you hear some of these stories of their day-to-day struggles, but let’s not forget their many triumphs. I know when I was a new mom, and my child was diagnosed with a disability I felt lost and alone and wondered what comes next. I learned from the ones that came before me and I want to be able to continue to share that knowledge and support to others. As they say it takes a village, and if it weren’t for our village we wouldn’t be where we are today. So, will you help be that village, help us spread awareness, help us change mindsets, help us teach other's to be kind to one another…. If you would like to support the Guilbault Girls on another level, consider becoming a Supporter of the Show! Your Funds will allow us to keep sharing valuable, heartfelt stories and resources! https://www.buzzsprout.com/1827471/supporters/new

If you would like to be on our show, be sure to contact us today and don’t forget to subscribe to our Guilbault Girls Podcast and YouTube show, and make sure to follow us on Facebook and Instagram at Guilbault Girls! Facebook: Girls, Instagram: , YouTube: Girls, Email: [email protected], and www.GuilbaultGirls.com. We’d also like share our story on a deeper level with you. Our daughter, Faith Guilbault directed a documentary with BYkids, about her journey of living with a disability. You can view "Faith's World", which aired on PBS April of 2020 on the following link: https://www.pbs.org/video/faiths-world-ozblht/

20/12/2024

Feigin & Cherry’s Textbook of Pediatric Infectious Diseases, 9th Edition equips clinicians with foundational knowledge on PANS/PANDAS. PPN established as an authority in evaluation guidelines & treatment recommendations. Read the summary at pandasppn.org/feigin-and-cherry.

18/12/2024

Spring of 2021, our 7 year old daughter came home from school acting like a different person. She was shy and fearful all of a sudden. Believing it was a mental health issue, we started working with a therapist. But as the weeks passed, her symptoms—crippling anxiety, obsessive thoughts, and behaviors—grew worse, unimproved by traditional therapy. Our therapist and her team suspected PANS/PANDAS. By summer, our child was at times unrecognizable....
Read the rest of the story here:
https://pandasnetwork.org/what-do-you-do-when-the-child-you-love-starts-to-disappear-before-your-eyes/

18/12/2024

"The human spirit is stronger than anything that can happen to it."
I don’t know who said this, but they are right, I have to believe they are right.
This journey is tough, but so are we, so are our children.
Be proud of standing in the storm.

18/12/2024
17/12/2024
05/12/2024

Longtime friends of PANDAS Network, Dr. Madeleine Cunningham and Dr. Chandra Menendez (U of Oklahoma Health Sciences Center), just revealed that patients with PANDAS/PANS who show symptoms of tics and OCD have high levels of an autoantibody called anti-dopamine receptor 1 (anti-D1R) while those with related condition characterized by sudden uncontrollable movements have high levels of the anti-dopamine receptor 2 (anti-D2R) autoantibody.
Read more here: https://pandasnetwork.org/dopamine-receptor-autoantibodies-in-pandas-pans/
Read the full article here:
https://insight.jci.org/articles/view/164762

17/11/2024

There is no single test. First and Final answer.

Learn more about PANS/PANDAS
www.aspire.care

04/11/2024

The PANS Rating Scale is available as a pdf and Google Sheet. The Google Sheet is protected. We created separate tabs, one for each month, to easily track each month! You can download it as an Excel spreadsheet onto your hard drive or save a copy to your own Google drive.

https://aspire.care/symptoms-diagnosis/symptom-tracking-tools/

04/11/2024
04/11/2024

Parents of children with disabilities are calling on the governor to pause a policy being implemented at the Maryland Department of Health.

03/11/2024

After 11 days in the pediatric neurology ward, this was the message we got: 🏨
‘Something’s not fully right with your daughter, but that’s not our scope. Goodbye”.
Despite bad EEG results.
Her symptoms just didn’t match any typical neurological disease. 🧠

It turned out she had Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), which is not a strictly neurological but rather a neuroimmune disorder.

Ironically, the doctor who gave us the diagnosis months later was a professor of immunology working in the same hospital where we got dismissed. 👨‍⚕️
She was literally around the corner, but she was never included in the process…

PANS is a complex disease because:
- It has multiple causes (genetic predispositions, environmental influences, and interactions between them)
- It involves many mechanisms (immunological, neurological, psychiatric)
- It affects many functions (behavior, mood, sleep, sensory processing, motor and cognitive functions, and many others)
- Different constellations of symptoms are present in each patient
- It’s difficult to diagnose. 🧐

People suffering from similar complex diseases, such as
- post-COVID syndromes
- ME/CFS (Chronic Fatigue Syndrome)
- Chronic Lyme
- some autoimmune disorders
get dismissed by the modern healthcare system, just like our daughter was.

Medical fields are like silos.
Specialists focus on their areas of expertise and operate in isolation from each other. They don’t communicate or collaborate with specialists in other fields. 🧱
So when the patient’s symptoms don’t fit neatly into a disease category they are experts in, they often abandon the investigation, instead of getting other specialists on board. 👩🏻‍⚕️👨🏼‍⚕️👩🏽‍⚕️

It’s a systemic issue in all developed countries. 🌎
It needs to change, as the number of people suffering from complex diseases is growing fast. 🚀

My advice: 💡
- Don’t stop digging. ⛏️
- Find a doctor with a more holistic approach. You may have to travel far and spend a lot, as we did, but it’s worth it. ✈️
- Follow the research. If you need help understanding research papers, use AI tools to help you summarize and simplify research findings. 🔎

This is # 12 of my series.
Follow me for more.







03/11/2024

Our daughter had a sudden onset of 14 out of 16 of these symptoms (and that’s by no means a complete list)

1. The neurologist said, ‘It’s behavioral,’ and sent us to a psychologist.’ 😈

2. The psychologist said, ‘It can’t be purely behavioral’ and sent us to a psychiatrist. 🧠

3. The psychiatrist said, “It’s more than psychiatric,” and referred us back to a neurologist. 🩺

But PANDAS/PANS is neither behavioral nor psychiatric, and it’s not a strictly neurological disease either. 🐼

It’s a NEUROPSYCHIATRIC disorder - the psychiatric symptoms have a purely biological basis. In this case - the immune system mistakenly attacking the brain. 💣🧠

The only way to treat this disorder is to address the immune component (treating underlying infections, modulating the immune system, and reducing neuroinflammation). 🦠

Psychiatric meds and therapy can help, but only as supportive measures. 💊

When psychiatric meds are used as the sole treatment, the child’s state can decline further because:

- Without addressing the root cause, neuroinflammation can cause irreversible changes in the brain. 🔥

- Due to the nature of the disease, some psych meds can make some PANDAS/PANS symptoms worse 🌩️

When…

- The child’s symptoms come suddenly, especially right after a strep infection 🗓️

- There are many different unrelated symptoms at the same time (unlike, e.g. Tourette’s, which presents as tics only)

- Some symptoms are completley beyond the child's control (involuntary movements, tics, urinary issues, dilated pupils, restless sleep) 🚽

… consider PANDAS/PANS and address the autoimmune part as soon as possible to give the child the highest chance of recovery.

This is # 6 my series.

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MyIntent FAQ

What is a MyIntent Workshop with MyIntent Maker Karen Guilbault? It’s a fun and interactive workshop, where you will find your WORD of Intent. Perhaps it's a virtue you want more of or a challenge you want to overcome. You'll also have the opportunity to have your WORD stamped into a bracelet as a daily reminder and conversation starter.

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