What is PANDAS/PANS?
“Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) occur after an infection, most commonly a strep infection. Brain inflammation occurs when the body’s immune system mistakenly attacks healthy brain cells, leading to autoimmune processes that affect central nervous system function. An affected child generally has a sudden, dramatic change in personality, displayed as obsessive-compulsive disorder (OCD), anxiety, tics or other abnormal movements, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more. Read our detailed “what is PANDAS” beginners guide to learn more.” https://pandasnetwork.org/
Detailed list of SIGNS & SYMPTOMS
At Keep the Faith Foundation, we are committed to raising awareness, supporting families, and advocating for better diagnosis and treatment options. One testimonial is with Susannah Cahalan where she documents her harrowing experience. Please watch A Conversation with Susannah Cahalan who wrote a book Brain on Fire about her experience with Dr. Souhel Najjar.
Our personal experience, our daughter’s symptoms:
Recognizing symptoms early is crucial for timely intervention.
- February 3rd, 2017 is when our daughter symptoms started unexpectedly and suddenly
- Severe sinus headache and infection
- A couple of days later, severe vertigo and loss of ability to walk (Vertigo: that was only reasonable explanation at the time, but later we discovered it was not accurate.)
- Loss of vision on and off at the same time
- Extreme fight or flight behavior at any given time. Could happen anywhere at any time.
- Extreme separation anxiety from either parent or even sibling, grandma and friends.
- Hearing loss on and off or extreme/painful hearing when the microwave was used, bathwater running and even closing the car door
When did healing start?
- First we had to find out a “name” for what condition our daughter had. Almost a year and a half into her symptoms, we had nothing to go by just our descriptions of her symptoms. The traditional doctors gave us nothing, except more pharmaceutical drugs and typically misdiagnosed as psychiatric symptoms. This couldn’t be more further than the truth. We knew our daughter and that there was something very wrong that even the doctors didn’t know.
- Our daughter’s first daycare owner called us one day and told us to watch a 20/20 documentary about PANDAS and she said “I think is what might be going on with your daughter.” God Bless you Nicole! She was right and got us started on the healing journey, we now have a name for her condition…. PANS or PANDAS!
- I reached out directly to the contact listed on the PANDAS site at the time and she got us connected to a neurologist in the Houston area. Now there’s a directory listed on the website.
- We met a PANS/PANDAS friendly neurologist in the Houston area, Dr. David Doan. He was/is such a blessings and worked with us so urgently and patiently to get our daughter the right care and treatment options. Our first appointment with Dr. Doan was in August of 2018.
Things that helped us:
- Keeping a daily/detailed calendar of symptoms, events, medications and supplements as much as you can. It was extremely difficult to do while we were in the storm but between my husband and I, we tried to document as many things as possible.
- Ice chips seemed to help during an episode to bring the body’s temperature down and cool off a bit.
- Keeping things that we’re familiar to our daughter likes stuffed animals, games, or a blanket were extremely helpful. Especially if we were in the car just going to the doctor or a store. Her episodes could occur at anytime so we had to be prepared to get everyone home safely without causing an alarming amount of attention while out in public. I could see things getting escalated really quickly without people knowing what was happening.
- In a moment of clarity or even when in an episode, taking extreme caution so that nobody gets hurt but at the same time trying to get your child to draw or write what they see or hear was of great advantage to us later on and helped us to better manage her safety. In one of my desperate moments to help my child, when she was next to me one minute and started to walk away from me at home the next. I just held up 2 fingers and asked her how many she saw? She held up 8 of her fingers! I then had our daughter draw what she was seeing and I was just shocked and then understood why she was terrified of us, her own family! You see, her autoimmune system was misdirected and she was not seeing clearly and was seeing us at times as friendly and not so friendly things or monsters with double, triple the arms and legs! She would also later on tell us that our voice was also distorted to her. Can you imagine a 7 year old, what your mind is telling you is not real but you can’t make sense of it and all you see is a thing with 6 to 8 or more arms or legs coming at you!
- Medical adhesive remover. This was a life saver when we finally found out about it and not from a children’s hospital.
- Buzzybee pain management (https://shop.paincarelabs.com/collections/buzzy%C2%AE)
- We found a rubber nozzle (from Home Depot) to hook up to the bath tub that would muffle the water noise.
- Wheelchair or something similar
Simple steps you can take now:
- Avoid GMO and bioengineered foods
- No High fructose corn syrup
- Eat Gluten free as much as possible: https://www.hotzehwc.com/2018/08/7-reasons-gluten-is-bad-for-your-brain/
- Avoid Dairy
- Avoid Corn
- Decrease sugar overall
- Avoid fast food as much as possible.
- Anti-inflammatory Diet: Consuming anti-inflammatory foods such as turmeric, ginger, and omega-3 fatty acids