COVID-19 – Advice for PANS/PANDAS children

There is so much noise out there at the moment about COVID-19 that it must be incredibly hard for parents of children with PANS/PANDAS to know what to do to safeguard their children.

Leslie Mello, one of our fabulous Brainstorm Health® Practitioners and fellow parent of a PANDAS child (who has since been through our programme), has put this advice together for you:

While we hope that you are weathering the COVID-19 storm as well as you possibly can, we’re really aware of how much excess anxiety this must be causing for those families supporting children with PANS or PANDAS.

I have worked through the information available from Public Health England, the Government as well as what has been released within our clinical communities. Together Stella, Coriander and I have put together these high-level pieces of advice specifically for those patients of ours who have a PANS/PANDAS diagnosis.

We hope this will help give you handy advice to follow in helping to give your child’s immune system extra support during the COVID-19 outbreak.

[NOTE FOR EXISTING PATIENTS: Please continue to follow the Health Plan you have been given by your Brainstorm Health® Practitioner. Add in any of the below if you feel it would be helpful, but do ensure that you note any changes in symptoms and keep track – so we can review any actions at future follow-up appointments.]

Some notes to read before delving into this post

• If you are not a patient of ours and are new to us – please know that you should always be working with a professional practitioner before starting any new supplements with your child. (Book a Discovery Call if you’re interested in working with us).
• We cannot give you the actual doses for the supplements we talk about below without going over your child’s health / symptoms with you personally beforehand.
• Below are GENERAL guidelines and you can dose at half the recommended dose for your child’s age range and slowly work up. (But again, seek advice from a practitioner before starting new supplements).
• Much of the advice below is endorsed by leading doctors and paediatricians who specialise in PANS/PANDAS – so they are coming from an integrative approach and all recommendations are considered safe. However, please check with your own doctor before implementing any recommendations if you are at all concerned.

Is your child more at risk with an autoimmune condition?

People with autoimmune conditions may be at higher risk, but this is mainly linked to the fact that many people with autoimmune illnesses are on immune-suppressing drugs (like rituximab, alemtuzamab, leflunomide, etanercept, methotrexate).

At the moment, COVID-19 is a LOW RISK illness for children and babies (thankfully) so we are not overly worried about PANS/PANDAS children at the moment except for the fact that exposure to this virus may trigger a flare (as it may with any viral infection).

If your child has an immune-deficiency of any kind, please follow the advice of your child’s immunologist. 

What should you do to help support your child?

The goal is to continue to help balance their immune system like you would when faced with any other cold or flu virus. Keep the foundations in place – maybe be a bit stricter than you would normally be though, especially with sugar as this is a strong immune-suppressor.

Help manage their anxiety around Covid-19 as we know from experience that our children’s anxiety can be triggered by things like this (especially those with contamination fears).

Foundations for good health

Here’s a handy reminder of some solid foundations for good health for you:

• Fresh, whole foods (Lots of veg and low-sugar fruits, organic whenever possible, grass-fed meats)
• Stay hydrated with water and/or herbal teas
• Reduce the stress response by whatever means possible – stress has a physiological affect on our biochemistry and we can ‘hack’ this with simple techniques like breathing or even crafting!
  • There’s a great App called Oak in the App Store that is popular with kids and adults alike and acts as a breathing coach – the visuals help you keep on track. We highly recommend it and as it’s free (with in-app purchases)
  • Heartmath is the high-cost solution, but one that kids also like because it gives them actual feedback about their breathing and how calm their system is. (£159 for the kit which includes a sensor, and then you download the app for free) https://www.heartmath.co.uk/
• Manage anxiety as much as you can. For our PANS/PANDAS children anxiety is usually higher than normal – and for those of us who have children with contamination fears and OCD about hand-washing, the current climate can be extra challenging.
  • CBT therapy has been shown to be an excellent supportive therapy for OCD, phobias and anxiety. If your child is working with a CBT therapist at the moment – see if you can get extra appointments (and see if you can do them virtually!). For those of you who do not have access to CBT, I can highly recommend the books by Dawn Heubner, including What to Do When You Worry Too Much
  • Encourage any crafts, art or music your child likes as this will occupy their brain and distract them. If you are self-isolating this may be a time for the whole family to learn a new craft or do a fun art project together.
  • Get outside in nature if you are able to – I know recent strict guidelines may make this difficult if you don’t have a back garden and can only rely on your local park. Playgrounds should be avoided per government guidelines about unnecessary social contact. (as at 19 March 2020).

What about extra supplements?

You can’t ‘out-supplement’ a compromised diet or lifestyle but many of our kids need some extra support. Again – we cannot recommend specific doses – we can only list the most commonly used supplements that have good evidence in supporting immune health.

If your child is an existing Brainstorm Health® patient and is already on any of these supplements, PLEASE do not increase doses without booking in a follow-up consultation with us first. If you want to add any of these supplements, do so one at a time and watch for any changes. Most are considered absolutely safe to use but should be checked with your child’s doctor especially if they are on any other medications.

We have listed our favourite brands below – and you can find most of these at The Natural Dispensary or Amrita. Existing patients – please give your Brainstorm Health® Practitioner’s name to register and you will receive a discount from these online stores.

If you are not a patient of ours and want to look elsewhere – you can try to find supplements on Amazon too. (Note that these companies are all seeing a huge demand in their products so there may be some delay in shipping.)

• Vitamin D – it is best to test levels but we can assume we are all a bit low right now (just coming out of winter here in the UK at the time of writing this post). We like Nutri Advanced Vitamin D3 drops with K2 (note that if it causes a bit of hyperactivity, you may need to up your magnesium a bit). Get outside in the sunshine whenever possible in the meantime. It’s not very strong in the UK at the moment but every little helps.
• Vitamin C – if your child has oxalate issues please use a low dose of Vitamin C (no more than 500mg per day while you are most concerned about viral issues). Otherwise you can give more. We like Altrient liposomal Vitamin C which is a gel that you put into water and then have the child swallow. Or you can also use Camu Camu powder or Pure Encapsulations Capsules Buffered Vitamin C (you can open and stir into water if your child cannot swallow the capsule).
• Zinc – we recommend Zinc Balance by Jarrow – the capsule can be opened into a drink or out into food if necessary
• Glutathione – this is a real power-house supplement. We love the watermelon flavour of Tri-Fortify Glutathione by Researched Nutritional. This is an expensive supplement but great protection if you are worried and want to give the body an extra boost.
• NAC – if you can’t get the glutathione, NAC is a precursor and you can use Biomedica NAC powder instead
• Milk thistle containing silybin has been shown to directly help with suppressing the enzyme that feeds COVID-19 and it is also great at increasing glutathione in the liver. We like the one by A.Vogel but any good quality product with the active silybin can be supportive.
• Methyl folate or folinic acid have also been shown to dampen down the enzyme that allows COVID-19 to take hold. We always like to balance this out and would suggest the B group transdermal oil which contains methyl folate as well as other helpful B vitamins to support methylation and the nervous system and is highly absorbable and bioavailable. You can buy these oils via our online store. If you prefer to give folinic acid then the product by Kirkman is very good.
• Selenium – think about adding one or two Brazil nuts to a smoothie to get their daily dose of selenium. Otherwise you can buy Nutrisorb Selenium by Biocare.
• Black Elderberry (Sambucus Nigra) has been shown to have anti-viral action against other corona viruses but should be saved for when the child has signs of an actual infection. We love Pukka Herbs Elderberry Syrup as it is made with raw honey an also has thyme for extra anti-viral protection.
• Probiotics – please follow any of the protocols for probiotics as some of our children cannot tolerate probiotic supplements yet.
• Omega 3 supplements are good anti-inflammatories. Please use whichever you’ve been recommended. If you don’t have one on your child’s health plan yet, we can recommend you start with Cytopan Vegan Omega 3s (made from algae).
• Over the counter multivitamins for kids can have a lot of sugar and artificial fillers. If you want a good, natural, bio-available multi to top up all their levels, you can use Wild Nutrition Food-grown Multi.

NOTE: due to high demand, you may struggle to get hold of these at the moment (time of writing). Do not worry – many people are trying everything to protect themselves. Just know that there is no one “cure” that will help on its own. It’s about doing whatever we can at the moment, reducing fear and increasing rest and resilience. Many items may be back ordered, so even if you get the items in a few weeks – it will be helpful in the future.

Other than Supplements, what else can you do?

There are a few more things you can do to help fight the COVID-19 virus and weaken it as much as possible – but again please don’t worry if these are sold out. These are not essentials – just nice to have in your arsenal:

• Any colloidal or nano-silver nose spray – silver has been shown to disable viruses and the nose is where viruses tend to enter and replicate before we become infected
• Use some essential oils like:
  • Eucalyptus and peppermint – can help open the airways (e.g. it’s the stuff in Vicks Vapo Rub or Olbas Oils);
  • Sage has anti-viral properties;
  • Lavender can be soothing – use in a diffuser or simply put on a tissue nearby to breathe in from.
  • There’s a great recipe called Thieve’s oil if you want to make up a batch you can follow this recipe – and add vodka to a spray bottle (for a natural disinfectant).

Please follow safety guidelines with essential oils (e.g. don’t put neat on skin, ingest or put near eyes) and keep your pets safe as many essential oils can be toxic to them.

• Epsom salt baths will help relax your child, support their magnesium levels and their detox pathways

What if your child is flaring up right now?

Our advice is to treat this flare as you would any other and try your hardest to have honest, but calm, conversations with your PANS/PANDAS child about the virus – explaining that children are the safest in this outbreak.

This may be a good time to write down a Flare Strategy Plan – pooling all the resources you know work with your child, organising them to manage different levels of flare – so that you are prepared (e.g. use of NSAIDs, Curcumin, reducing inflammatory foods, distractions, etc.)

Extra safety advice: the risks of using NSAIDS

Research on other coronaviruses like SARS has shown that ibuprofen, along with some blood pressure and diabetes medications, may increase risk complications. This is due to their influence on a specific enzyme pathway (ACE2) that is used to control blood pressure amongst many other things. The risk to your child is relatively low so if you have been using Ibuprofen we don’t want you to worry too much.

We know many parents rely on NSAIDS to bring down inflammation rapidly when their child is in a flare. Although not ideal, using these short-term can outweigh the risks. However, please reconsider using them if you suspect your child has Covid-19 and contact your medical professional for further advice.

If absolutely necessary to reduce pain or a very high fever in your child, you can use paracetamol, but we highly recommend supplementing with NAC or Glutathione to help restore the levels of Glutathione that can be lowered with paracetamol use.

I repeat: if you rely on Ibuprofen during a flare, it is safe to still use SHORT TERM as long as you know your child does not have Covid-19.

Closing note for you as a parent…

Remember to support your own health and sanity during this very stressful time. PANS/PANDAS parents often are forced into ‘home isolation’ when their child won’t go to school, and are scared about potential infections all the time – so we are actually already prepared for this outbreak and maybe now the world will know how it feels for us most of the time.

As you can imagine we are dealing with a high-volume of enquiries at the moment, so unfortunately we are not able to respond to specific questions relating to your child at this time. Please do watch our Facebook Page for updates and general advice that we are giving to our audiences as regularly as we can.

I hope the above serves to at least help you to weather the storm that is coronavirus at the moment.  Whilst its general advice, I hope it has still helped.

If your child is an existing patient and you are truly worried and want targeted advice, please do book in a 30-minute call with your Practitioner and we will do our best to help.

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