Natural PANDAS Protocol
Updated: Mar 15, 2019
If you've been following my blog for any length of time, you know that I prefer to go the natural route when it comes to medical care and treatment. This is, in part because of my own experiences as a nurse in the medical field, and because of my own experience being a patient. You can read the full story here.
I want to reiterate that while I am a medical professional, and firmly believe in working closely with a trusted medical provider, I also am a firm believer in our ability as parents to make educated decisions for the better of our families. Use this protocol with discretion, and of course bring any of this to your care provider. Our provider is very open to alternative methods and has been willing to try them as long as we are seeing improvement.
This last June, our oldest daughter A was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus) syndrome. It put so many pieces together for me regarding her struggles with defiance, rage and anxiety. THANKFULLY I had a gut feeling this was the culprit all along and so was mainly relieved to have an answer than I was shocked or overwhelmed.
I began researching like crazy because at first all I was hearing was "no cure, the only thing you can do is take antibiotics and IVIG and hope for the best." Well, that isn't good enough for me. Often these kids would take antibiotics for years and as soon as they got off all of their symptoms would return. Many physicians only believe in treating the symptoms (anxiety, rage, depression, OCD, Tics) with mood stabilizing medications, but it doesn't do anything to treat the underlying cause. I began researching how to heal inflammation in the brain that leads to a flare in behavior, how to heal the gut and how to deal with the underlying infection as naturally as possible. So far, we have not had to touch antibiotics and have seen tremendous improvement!
I felt it would be beneficial to detail out the protocol we are using and WHY in case other families are interested.
A very important piece is addressing diet. Previous to our PANDAS diagnosis, we had eliminated all gluten, dairy, food dyes and all corn products after figuring out she was highly sensitive to corn. A lot of these foods not only cause inflammation in the body, but also can lead to neurological dysfunction (aka behavioral issues). I will detail how we have done this in a later post!
Lauricidin: The culprit for many kids is either a virus or infection or BOTH. In order to effectively treat the neuropsychiatric symptoms, you have to treat the underlying infection or virus causing the release of cytokines, which leads to brain inflammation. We use Lauricidin which has been shown in numerous studies to effectively kill all sorts of viruses and bacteria, including strep. Follow the instructions on the label and wean up slowly. Many of these kids have terrible detox reactions when the bad bugs start to die, we built up very slowly over a period of a few weeks and have been staying steady ever since.
Vitamin D: One of the biggest issues with these PANS/PANDAS kiddos is inflammation in the brain, and traditional treatment can call for steroids to help reduce the inflammation. However, Vitamin D has been shown to be highly effective in reducing inflammation, preventing infection (which is a big issue for these kids), and acting as a steroid systemically- without the steroid effects. This is the kind we use.
Inulin Powder: This is part of the Nemechek Protocol, which was discovered and formulated for kiddos on the autism spectrum, however, many PANS/PANDAS kids suffer from the same issues: gut imbalances that leads to microglial activation, that leads to inflammation in the brain, that leads to neurological symptoms. Inulin powder is a prebiotic fiber that helps to feed the good bugs, and redistribute them to the lower intestine where they should be. For more detail, check out the Nemechek Protocol book here. We give 1/8-1/4 tsp daily in applesauce, but it is tasteless and you can give it in whatever suits your kiddo best. This is the Inulin powder we use. It's a huge bag and should last us forever.
Olive oil: Another main component of the Nemechek Protocol. Olive oil is high in Omega 9 fatty acids that block the brain damage that results from excessive omega-6 fatty acids. This is another important component, responsible for healing brain damage that occurs from the virus/bacteria attacking the brain. Olive oil is highly adulterated, so Dr. Nemechek recommends the California Brand. You can get it at your local grocery store, or on here .
Fish oil: Fish oil has been shown in numerous studies to help restore cognitive function, boost mood, decrease hyperactivity and is the third "pillar" of the Nemechek Protocol. We use Nordic Naturals Omegas because of the purity of the brand, but also because it contains no corn fillers or soy.
L Glutathione: For some reason this supplement popped in my head one day and it took quite a bit of digging and researching to figure out why this would benefit my PANDA. Bear with me because the pathway is COMPLICATED but put a lot of pieces together for me. Natural Killer cells are a specialized form of white blood cells. Think of them as the special service of your immune system. It is their job to locate and extract cells that have become stressed or infected with a virus, bacteria and even cancer. Kids with PANDAS/PANS have a misdirected immune system, where instead of attacking the bad buys (bacteria/viruses), it attacks the basal ganglia in the brain and causes significant issues. Studies have shown that LOW Glutathione led to decreased activity of the NK (natural killer) cells, which leads to a decreased function of their innate immune system. NK cells do not function without glutathione, which is significantly decreased in children with Autism and other neurological disorders like PANS. NUTSHELL: Increasing glutathione directly impacts the body's immune system function. You can grab yours here.
I know this is a lot... We have had to make some significant financial sacrifices in order to provide these things since none of it is covered by insurance. Its hard and there is no way around that, but it sure beats the alternative of rages, meltdowns, tantrums, hyperactivity and brain damage from a disease.
Take it however fast or slow you need. I will say that starting slow gives you a good idea of what supplement is helping the most. We have found that making small adjustments every now and then provides even greater gains.
Keep up the good work, and don't forget to take the supplements you need! Taking care of a kiddo with lots of medical needs is hard work!!
To your wellness,