People ask me about my personal experience with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) all the time. What I want to share with others is that even when it feels like the worst crisis ever, there is still hope.
I’ll be sharing with you today some of the things that have helped me in my PANS journey as well as thousands of families I have worked with, because when you take a step towards science-back solutions that calm and regulate the brain, you’ll get to where you need to go.
The story of how my son’s life changed.
My story starts with my son, Max, getting bitten by a tick at 22 months and we didn’t know it at the time. This happened back in the winter of 2000s and up until the present, we don’t know enough about ticks but the good thing is that I had already been working with families regarding this.
After getting bitten, we noticed the drastic change with our son. In the winter of December 2006, Max started getting a fever and as a mom, I was worried and alert and so, we took a holistic approach in treating him. After that, his personality and eating habits changed. He became a poor sleeper and that worried us a lot.
He started acting out and he was always angry and irritable. It was such a big turn from being so pleasant and engaging to being so cranky and difficult. But thanks to our naturopath, we were able to identify what was sort of triggering Max which is dairy. After removing dairy products in Max’s food, there was a bit of improvement.
Max got bitten by another tick within six months and thankfully, we knew about it this time as compared to the first time. And so, we started doing treatments but his state just keeps on declining. This affected his sleep so much, affecting his health even more.
My journey isn't the same as everybody's because I already knew this was a case of Chronic Lyme Disease but now I call it PANS. Luckily, we were able to meet with Dr. Charles Ray Jones who has treated more than 15,000 children from all over the world for tick-borne diseases.
This is a marathon not a sprint.
We've been doing a lot of things all at once. We have to keep in mind that healing is a continuous process. You can’t just do a single thing and disregard everything else. The same way that you can’t improve the immune system without treating the infection or calming the brain.
We have emphasized in our previous episodes that the brain is not going to heal if you don’t calm it. In line with this, there’s a need to have behavioral support and parenting support.
Working with therapists, psychologists, or behavioral experts who can provide guidance on behavior management techniques, coping skills, and strategies to address issues such as impulsivity, emotional dysregulation, and anxiety is an option.
Parenting support is particularly important as it provides parents with the tools and resources they need to provide the best possible care for their PANS kids. It can include teaching good communication skills and offering emotional support.
Also, you have to really monitor what’s happening with your child and the effects of the treatments you’re doing. For us, we’ve noticed that the worst thing that actually ever happened to Max was undergoing integrative listening therapy. That completely destabilized him and brought on the worst flare ever.
Homeschooling and alternative schooling.
Homeschooling served Max very well. In fact, he is already completing high school. The good thing is that he is now more regulated and calm. Of course, this wouldn’t have been possible as well if not for our practitioner – Lauren Lee Stone. If you haven’t listened to my podcast episode with her, I suggest you check it out.
Although homeschooling is beneficial especially when your child is dealing with flares or an intense treatment regimen, it should be noted that homeschooling is not for everyone. Personally, it allows us to do treatments and reduces the stress because if the brain isn't calm, no healing is possible.
Why do we put such a stigma on mental health?
I have always wondered why people put so much stigma on mental health. If the issue was anything else like cancer or other disabilities, people won’t find any problem with it. But when we speak of mental health disorders, people feel like there’s something wrong with you or it’s contagious.
Life comes with many challenges along the way which is why you have to find your tribe and stick with them. Don't feel like you have to save everybody and explain yourself every single time.
What helped improve Max’s condition?
Herbs and supplements have significantly helped Max detoxify and improve his condition, having several infections at once.
We’ve also done neurofeedback and PEMF consistently for better improvements. Max has also been using the PEMF device on his own usually, which is great because when you use it, it improves the user’s state from being in an overstimulated state to being into a parasympathetic state.
Many people wonder if their child is misbehaving because of PANS or because of a behavior problem. We have to get rid of old ways of parenting when our kid is different. Of course, these treatments, tools and resources are not going to work if you will not put your faith in the process. You have to believe that everything’s going to be okay.
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