A day in the life of a PANDA
I have been researching and processing all of the test results for the last week and a half or so, and was very surprised at the range of emotions I have felt. Relief- initially, because we finally know whats wrong. Sadness...deep sadness that we didn't know sooner, even though we were trying. Sadness that somehow along the way we lost a part of our little girl. But the emotion that has surprised me the most is anger! When you are problem solving and researching, it gives you something to do. You are actively looking forward, instead of processing what is happening around you. Once we had an answer, I was flooded with anger. Anger at how messy our life has been the last 3-4 years (honestly, I can't pinpoint exactly WHERE it started although I have some ideas.). Anger at how long it has taken to find answers. Anger at how hard it has been. Anger that it will be a slow and steady healing process- not an immediate like I was hoping for. I'm not quite into denial, and I've dappled in bargaining, but mostly I'm sticking with the sadness and anger for the time being. And that's okay. I've had enough grief processing in my life to know this too shall pass and I can embrace the feelings as they come.
Once I recognized these emotions, I found some online support groups of parents who were also struggling with these issues. I was utterly AMAZED at the number of families who have gone undiagnosed for 5-20 years! 20 YEARS! Unbelievable suffering. Watching your kid slowly lose control of themselves is akin to walking through hell. The rages. The look of terror they feel at being in their own body. The inability to control themselves. The defiance. HARD is an understatement. I was also surprised at how much I needed to know that I wasn't alone. That other people knew what we were experiencing and I could learn from them was a tremendous comfort and relief. This is a whole new territory to me so I by no means have it figured out.
Here are a few things I have learned: The conventional approach of PANDAS seems simple. IVIG to get rid of the autoimmune response, antibiotics to kill the strep, sometimes antidepressants or SSRI's. But NOTHING to reduce brain inflammation (other than ibuprofen which simply tackles symptoms not the underlying cause). Nothing to address gut health, which is severely impacted due to microglial activation and cytokines gone haywire. Nothing to support the regeneration of neurons that have been damaged by the "fight" against the basal ganglia. Addressing each of these underlying causes is PIVOTAL in healing from PANS/PANDAS.
I have always tended towards natural treatments, so I began researching effectiveness of alternative methods- since conventional methods do not provide a cure, and usually require lifelong treatment with lots of reoccurrence of symptoms.
Here is what I have found!
#1: Many in the alternative health community and even PANDAS specialists are leaning towards just calling it PANS- meaning not just derived from Strep- but any number of outside factors that influence the immune system leading to neurological problems. This is a really good thing!! The research suggests that you can develop any of these neurological symptoms from a number of viruses and bacteria.
#2. Reducing inflammation is key. not only for how your kiddo is going to feel in their body, but in recovering brain function. Check out the Nemechek protocol for a step by step approach to healing the gut and reducing brain inflammation. It says it is for developmental delay and autism, but upon more research, it looks like a good fit for ANY neurological insult or issue. We also have been using copaiba essential and frankincense. Copaiba has an amazing ability to provide a healthy response to inflammation. We have been using this 3 times a day, rubbed on the inside of our kiddos mouth (oral mucosa). It helps TREMENDOUSLY and immediately!
Along with reducing the Nemechek Protocol for reducing inflammation, we also use Vitamin D. Vitamin D acts as a steroid, meaning that it reduces inflammation by reducing cytokines which tend to be a big problem with ANY autoimmune disease, and certainly is an issue with PANDAS. It has been shown in studies to help regulate the immune response in general, reducing the likelihood of infection as well.
#3 Detoxifying heavy metals. I was immersed in information this last week on how heavy metals influence the immune system- and in a very bad way. See this study here and here. Heavy metals cross the blood brain barrier, which protects the brain from harmful bacteria and illnesses. These heavy metals excite the microglia, leading to a whole cascade of inflammation in the body, often resulting in autoimmune diseases (like PANS).
I don't want to lose readers here, but I would be remiss if I didn't share this information. The majority of vaccines contain viruses, bacteria, heavy metals like aluminum, ethyl mercury, and polysorbate 80. Polysorbate 80 opens up the blood brain barrier, allowing heavy metals and any accompanying viruses and bacteria to enter the brain. And they do not leave. These heavy metals interfere with healthy neurological function. I am still doing research on some of the best ways to detoxify heavy metals without redistributing them into other tissues of the body. So far, TRS seems to be the safest and most effective method with families experiencing tremendous results.
#4 Heal the gut. I have seen some conflicting information on how to heal the gut with PANS/PANDAS. Some doctors recommend super high doses of probiotics, some recommend pre biotics or both. In the Nemechek protocol, he is very adamant about only doing inulin for prebiotic fiber and no probiotics. Prebiotic fiber decreases an acid in the gut that reduces cytokines (inflammation), redistributing the healthy bacteria to where it needs to be in the intestines. I am sticking with this for now and will update on the results! The inulin powder we are using is derived from artichoke, you can find it here!
#5 Know the culprit: You can't adequately treat something if you don't know what bug is the trigger. For PANS and PANDAS kids, it seems that food, heavy metals, and viruses/bacteria can all cause a flare, or a negative immune response leading to a worsening of behavior. For our little, Strep seems to be one of the underlying causes. So, we are treating that currently with Monolaurin (you can order it here). It has been proven in many many studies to be effective not just in killing strep species, but viruses as well. I have seen some anectdotal evidence that people have reversed their HIV with this supplement- which blows my mind! We have also added the oregano leaf tincture as an added gut support to kill the strep bacteria.
During flares, we increase her drops of copaiba per day, and have recently started L- Glutathione to help reduce the inflammation in the brain, helping eliminate oxidative damage to her neurons and basal ganglia. So far, I've noticed a huge difference in her mood, impulse control and pupil size!
#6 Take care of yourself! It is extremely difficult to manage the day to day with a kiddo who struggles so much. Do not wait until you are snappy, exhausted and mad at the world before you ask for help! Invite friends to come over and play with your kiddo so you can clean interrupted or simply take a shower. Go on date nights. Make it a priority. Don't put it last. For me, self care looks like taking time to invest in my business, teaching, and doing things with friends and my husband.
Please don't hesitate to ask questions! I want to see people get better from this! It may be 2 steps forward and one step back, but as long as we expect that, we should be okay ;)
To your wellness,