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.]
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.
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).
Here’s a handy reminder of some solid foundations for good health for you:
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.)
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.
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:
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.
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.)
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.
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.
Sign up to our newsletter to get more updates and hear more about the work we do here at Brainstorm Health®.