“She can’t brush her teeth anymore or get out of bed without help.”
“He has seizures upon waking, had to quit school, and is terrified of his own thoughts.”
“I can’t do this anymore. My child wants to die, and each night, he prays for God to kill him.”
“Our child’s life has been replaced by rituals. Nothing can be done, said, or thought without a ritual.”
“He is afraid to eat anything and says his brain hurts all of the time.”
“My husband is about to divorce me because he can’t deal with our son’s PANDAS diagnosis. He says that I baby our son too much, so that is why he is acting out.”
“Mommy, please make it stop. I want to feel happy again.”
“I just want to die; my life has no purpose.”
“I have a useless brain.”
“I don’t have hope for my life anymore.”

These are some of the quotes I’ve compiled over the years from conversations with parents and children with PANS/PANDAS (Pediatric Acute-onset Neuropsychiatric Syndrome & Pediatric Autoimmune Neuropsychiatric Disorder Associated with/ Streptococcal Infections).

Every time I read them, I cry. These conditions are a living nightmare for both the patient and the caregiver.

Dr. Michael Daines, associate professor of Pediatric Allergy and Immunology, summarizes the impact of these conditions quite well.
He says the following:

“It’s got a huge impact on the family and on siblings. It’s like throwing a hand grenade in the middle of the dining room table.”

Read that quote again and think about it. Imagine you are eating dinner quietly and peacefully with your family, and all of a sudden, a hand grenade is thrown towards your dining table. What would happen?

Absolute chaos is what would happen. And using the word chaos is quite generous. What occurs when children and young adults experience the symptoms associated with PANS/PANDAS is chaos times 10000. It is quite literally an explosive and destructive force that robs children and families of their stability and peace. Normality is replaced with inexplicable suffering, fear-filled gasps, and terror of the unknown.

The stress and frustration are amplified due to a lack of proper diagnosis and understanding. Within the medical field, there is a lot of discussion and a good amount of division surrounding PANS/PANDAS. Some medical professionals deny entirely that these conditions exist, while others argue that conditions like PANS/PANDAS should only be referred to as XYZ. Three other names you may hear are BGE (Basal Ganglia Encephalitis), Autoimmune Encephalopathy, and Autoimmune Encephalitis of the Basal Ganglia.

Regardless of the division, lack of understanding, and name differences, our kids need to be seen and heard, and they need to have access to appropriate medical interventions. Although there is still so much we do not know, what we know is that these conditions are destabilizing on every level, and affected families need support and validation.

**Since March is Autoimmune Disease Awareness Month and Brain Injury Awareness Month, I’ll be sharing about AE, PANS PANDAS/BGE, and related topics/conditions. Through my posts, I hope to validate, offer support, and equip families facing this darkness.

More Information

What is Autoimmune Encephalitis (AE)?
Autoimmune Encephalitis is a type of brain inflammation that is triggered by the body’s immune system mistakenly attacking healthy brain cells. It can be triggered by viral infections, toxic mold exposure, injury, underlying infections, tumors, cancer, and other unknown causes. 

Autoimmune Encephalitis symptoms can be “progressive (worsening over time) or relapsing-remitting (with alternating flare-ups and periods of recovery).” Some people heal completely while others never experience a total recovery.

It can be hard to diagnose because symptoms can be confused with a number of neurological, physical, and even psychological conditions.

AE is an autoimmune condition that has many similarities to a brain injury. It is often referred to as “Brain on Fire.” PANS PANDAS/BGE fall under the category of Autoimmune Encephalitis. 

“PANDAS is unique in that it is known to be triggered by a specific infectious agent – Group A streptococci (the cause of “strep throat” and scarlet fever.) If detected early enough, PANDAS may respond to antibiotic treatment of the strep infection. In other cases, immunomodulatory therapies can reduce brain inflammation and restore the child to full health.” Dr. Swedo

I hope you found the information and thoughts shared in this post helpful. Please join me in raising awareness by sharing this post with others.

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*As always, nothing in this post or in other posts on chemicalfreegal.com is intended to be medical advice. The information is shared solely for educational purposes.

Blessings,
CFG