The TSA has received lots of questions from families with children who live TSC, about covid-19 vaccinations for children aged under 16 years old .

With the vaccination roll-out well underway, this is understandably a very confusing time for some families. Those talking to the TSA say they feel ‘in limbo’ about whether their children should be vaccinated and if it is safe for them to be out-and-about.

We have worked with the NHS TSC specialist clinics to better understand the situation for these parents and their children. We hope that the information below will help people to make informed decisions about how they can move forward with more clarity and less anxiety over the coming months.

The TSA hosted a special ‘Covid-19 and children’ Q&A session with Dr Jill Cadwgan (Consultant in Paediatric Neurodisability, Evelina Children’s Hospital). You can re-watch the session in full below. Please note that this event took place Tuesday 13 April 2021, and some information may be out of date:

No. There is no specific evidence to suggest that TSC broadly makes adults or children more likely than anyone else to catch covid-19, and TSC does not necessarily mean that you are at greater risk of developing severe symptoms.

A small number of children living with TSC may be considered ‘clinically extremely vulnerable’ to the worst affects of covid-19. If this includes your child, a shielding letter will have been sent to you, or your doctor may have told you that you fall into this category.

All children aged 5 and over will be offered the first and second covid-19 vaccine dose. The two doses should be given 12 weeks apart. Parents or guardians will need to give their consent for their child to be vaccinated.

In December 2021, the vaccine offer was extended to 5–11-year-olds who are considered vulnerable to covid-19 (or live with someone who is immunosuppressed, such as someone taking everolimus). If this applies to your child but you still haven’t received an invite, please speak to their GP or TSC specialist consultant.

third dose of the covid-19 vaccine is also being offered to children aged 12 – 15 if they have a weakened immune system. It is therefore likely that a small number of children who have TSC, or live with someone who has TSC, could be eligible for the third covid-19 vaccine dose. If you believe that your child is eligible for the third vaccine dose, you may wish to speak to their GP or TSC clinician.

In February 2022, the Joint Committee on Vaccination and Immunisation (JCVI) advised that individuals aged 12 and over who are immunosuppressed, as defined in the Green Book, should have an additional booster dose in the spring, six months after their last vaccine dose. This is because immunity from vaccination declines over time. If you believe that your child is eligible for booster dose in the spring, you may wish to speak to their GP or TSC clinician.

For more information on vaccine safety, dosing and eligibility criteria, please see the green book.

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£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

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