What is the psychological and physical impact of the pandemic on children with PANS/PANDAS and their families?
Massachusetts General Hospital is inviting you to take part in a 40-60 minute survey assessing how PANS/PANDAS symptoms are affected by the coronavirus pandemic. This survey is completely anonymous. It will ask you questions regarding your child’s experiences with the pandemic, your relationship with your child, the severity of your child’s PANS/PANDAS symptoms. Please click the following link if you are interested:
What PANDAS/PANS Families Should Know About the Coronavirus
We know PANDAS/PANS families are worried about the Coronavirus because of their own personal journey watching a pathogen wreak havoc on their child’s immune system.
The Coronavirus, or COVID-19, the name of the disease caused by the virus called SARS-CoV-2, is giving the rest of the world a sampling of what strep and other pathogens have put our children through for years. The race to find the culprit, a cure and quality care is underway on a global scale.
Many schools nationwide are closing, ‘social distancing’ is in practice and sporting and Broadway theater events are canceling. Times are changing quickly. A glance at the numbers, which are updated daily on the Johns Hopkins Coronavirus Resource Center COVID-19 Dashboard that tracks the global pandemic shows 1663 confirmed cases of COVID in the US, with 40 deaths, and more than 128,000 global cases with 4720 deaths as of March 12. The good news— if there is any— is that children are not at increased risk compared to other age cohorts. The World Health Organization mission to China found that 78% of the cases reported as of Feb. 20 were in people ages 30 to 69, according to a China CDC report.
But what does it mean for children with PANDAS / PANS?
PANDAS Network asked Dr. Kenneth Bock with Bock Integrative Medicine in Red Hook, New York his perspective on what families should know in regard to PANDAS/PANS and the Coronavirus. To learn more about Dr. Bock, visit Bock Integrative Medicine.
1- The CDC claims that CHILDREN are NO more susceptible to the virus that causes COVID-19 compared to the general population. Limited reports from China suggest children with confirmed COVID-19 may present with mild symptoms, but acknowledged that certain populations of children may be at increased risk of severe infection, such as children with underlying health conditions. Would you put PANDAS/PANS kids into that category?
Clearly they have underlying health conditions and immune dysregulation and inflammation, so we have to put them as having underlying health conditions. That said, some are immune deficient, but exaggerated immune responses are causing inflammation.
The good news is that children with the Coronavirus seem to get more mild illness, as a general rule, which is comforting, and I don’t think anyone knows exactly why. I think anytime you have immune dysfunction, it puts them in a different category. It’s not a reason to be scared, but parents just need to be more aware.
2- Are PANDAS/PANS kids typically immunocompromised?
Some kids with PANDAS/PANS may have low IGG, so some immune compromise, and some have normal levels and evidence of autoimmune antibodies. Some may have immune dysfunction or dysregulation.BUT what CDC is really talking about is ‘immunocompromised’ as in patients undergoing chemo… or with cancer…kids with severe immune deficiencies. PANDAS/PANS kids don’t fall AT ALL in that sphere.
3- The recommendations from the CDC and other sources for keeping children infection free include:
- cleaning hands often with soap and water or alcohol-based hand sanitizer,
- avoiding people who are sick and
- staying up to date on vaccinations, including the influenza vaccine
What specific recommendations do you think a child diagnosed with PANDAS/PANS should consider?
1-Immune support— a healthy diet, avoid inflammatory foods, because COVID -19 provokes inflammation so avoid sugar, eat whole foods, lean protein and fruits and veggies.
2- Get adequate rest, plenty of sleep
3- Moderate exercise is immune enhancing
4- Good hydration
5- Moderate the stress, because stress can be immunosuppressive
Mitigate stress best as possible with kids.
Everyone, elderly and kids, especially kids with some immune dysfunction or dysregulation, needs to be doing things to help support and balance their immune system and give more resistance to viruses.
Because we don’t have a cure or specific prevention and we can’t make any claims,but in my mind the best you can do when you don’t have a cure or vaccination or prevention, is to do a general approach that supports the immune system.There are certain nutrients that I think are important and nearly everyone should be doing now so if the virus enters the body, you want the immune system to be in the strongest place to deal with the virus as best it can.
What would you recommend?
Good probiotics to regulate immunity, (A daily probiotic containing bifidobacterium is known to have antioxidant properties as well as free radical scavenger abilities while Lactobacillus Rhamnosus is shown to increase interferon-gamma further supporting the immune system.)
Vitamin C, a higher dose— 2000-3000 a day for kids as long as they don’t get diarrhea. Vitamin C, it’s inexpensive and an important one; Vitamin D, Zinc, high quality Omega 3 fish oil, Vitamin A— 10,000 for a kid. (It is important to note that since vitamins A and D are fat soluble, if they are taken for prolonged periods of time, checking blood levels should be considered.) These may just be short term needs, perhaps. Those things can help the immune system, but it’s important to monitor levels.
There are things to help the body when it encounters the virus like Transfer factor, a small protein (peptide) that can bind to specific antigens on an infected cell signaling T cells to eradicate it by mounting an attack against the virus.
There are also several specialized supplements that provide additional immune support including immune enhancing polysaccharides, such as mushroom extracts, and IAG larch arabinogalactans, which can complement the immune modulating activities of the peptide transfer factors. Herbal products such as astragalus, curcumin, and resveratrol, as well as beta-glucans, and olive leaf extract, may also add additional support for the immune system and some may have anti-inflammatory effects as well.
I never like to tell parents or friends what they should take when they ask, and I don’t like to prescribe when they’re not my patients… but I do believe its important for people to be taking some of these things.
There are others like mushroom extracts… which are used a lot in cancer and in Japan, but that’s expensive, so not everyone can take these things.
I’ve been doing this a long time— 37 years, and maybe I’ve missed a few days (of work), and I attribute it to the way I live and the things I take.See Dr. Bock’s blog for more information.
4- While it’s clear there is a lot of research underway, the CDC claims there are currently no antiviral drugs recommended or licensed by the U.S. FDA for COVID-19.
There is probably a huge amount of research being done certainly in vaccines and antivirals. Olive leaf extract and selenium can help the immune system and be anti-inflammatory. Lauricidin/Monolaurin, Olive leaf extract combined with beta glucan- they are not antivirals, but may have some type of antiviral-type properties. I used them in Epstein Barr situations and the flu. But I would use them more at the first site of things, not as prevention.
5- Is there anything proactive our kids or families can do to stay safe?
One thing to recognize is that the elderly and people with heart disease and diabetes, COPD and lung problems, and severe pneumonia, or profound inflammation of the lungs— those are the bulk of the people who may be sick and die, NOT OUR KIDS.
In terms of preparation, IF you have a prescription, make sure you have enough for a month.
If you get exposed, most people are going to be okay, and not get severely sick. Take things to promote healthy inflammation responses, and that’s the best you can do.
I think being smart, not going to big gatherings, not going to music concerts, being at home and watch movies, at least for the next couple weeks. Use common sense, and make tough decisions, including canceling trips or work events because you have to take care of yourself and your family. I don’t want parents to freak out. This is mostly a benign illness in the kids. Don’t do things just because you have a ticket. You can’t make decisions based on just business and dollars, you have to think health first. We will get through this
6- If a child has a pending doctor visit, should they hold off at the moment, since there are issues around public transportation, flying, etc.?
We stopped people from traveling to our office from international locations and have opted instead for phone and video consults, although at the moment, we are still seeing some people in the office.
If you’re sick, stay home; If you’re really sick, go to places best equipped— and that’s the hospital emergency.
7- Speaking of hospitals, what are your recommendations if a child gets flu-like symptoms and ends up at the hospital / emergency room, is it necessary for them to reveal they have PANDAS/PANS?
I think parents should tell (the medical team) everything— the doctors should know if a child has an autoimmunity issue. Don’t hide it… But they are not immune compromised like a cancer patient undergoing chemo.
8- Is there anything else you want to share with our families regarding the Coronavirus?
The major thing I want to tell them is not to be hysterical, and not to panic. If they do a lot of the things we talked about, they’ll have their kids and their families in the best shape. The great news about the kids is it looks like it’s affecting them much less, and that’s very promising.
To learn more about Dr. Bock, visit Bock Integrative Medicine.
For sources to stay informed, check out the following:
Pediatric Multisystem Inflammatory Syndrome Fact Sheet
Coronavirus COVID-19 Global Case Dashboard, JHU
CDC Fact Sheet, Prevention, and More
CDC Household Plan of Action
CDC Clinical Course of COVID-19
World Health Organization (WHO)
European Centre for Disease Prevention and Control
Talking to Children about COVID-19
When to Call a Doctor, How Testing Works and More, UCSF