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What parents of kids with Tourette's or PANDAS / PANS need to know

Parent, (of a child with PANDAS / PANS, Tourette's, OCD, Anxiety, ADHD, Autism etc)

- please keep advocating for your children, they need your support more than anything and it's vital that they access the correct support, please don't give up.

- Accept them for who they are and love them unconditionally and be there for them when they are struggling. - Trust your intuition, you know your child best.

-Let your child know that they are not a 'bad kid' and that this isn't their fault, that you understand that they are struggling. - Listen to your child and what they need, if they say something is bothering them or causing issues, please take it seriously. - Validate how your child feels, sometimes we may struggle with emotional regulation or anxiety, but understand that what your child feels is very real for them even if other may not understand why something causes such strong feelings to arise. - Please never tell your child to stop ticcing or stimming, suppression can be harmful and people cannot control their tics and don't mean what they tic. - Please don't be ashamed of being with your child in public, stick up for them and teach them to advocate for themselves and be confident in who they are. - Find a doctor who will listen, and don't give up. Don't be afraid to question doctors if needed, you know your child best and you know what they need. - Take time for yourself to recharge where possible, you can't pour from an empty cup. Raising a child with a neurological condition can be exhausting, stressful and traumatic so you need to look after your own mental health as well. - Connect with other parents through support groups to share your experiences and connect with adults who have the condition that your child has so that you can learn more from a first hand experience.

- Do not put up with parent blaming, some parents are told that they just need to discipline their child more, that their kid is just badly behaved or that they are just fabricating it or making it look worse than it is. If a doctor starts pointing the finger - find a new doctor!

- Do not discipline your child for tics, rage attacks or OCD compulsions, allow them to take responsibility for the aftermath, for example tidying up after a rage attack but let them know it's not their fault, they are struggling. These are symptoms, not behaviours.

- Some parents would go to all lengths to help their child when they are desperate, you are doing the best you can for your child right now, give yourself some credit.

- It's never too late to receive treatment for PANDAS/ PANS, it is easier to get back to baseline the earlier you treat it, but no matter whether you child is 3 years old or 30 years old, they can recover, there is hope.

All parents make mistakes, you are learning along this journey with your child, just do the best you can and meet your child with love, you are doing your best. It can be hard to support a child with a condition such as PANDAS / PANS, Tourette's, OCD, Anxiety, ADHD or Autism etc, but just be there for them and advocate for them the best you can, do what you can to give them their quality of life back. You are not alone, your child will be grateful for your help, they just need to be accepted and embraced for who they are so they can grow up to be empowered adults and love who they are and can have the confidence to advocate for themselves and have their needs met.

Here's a shout out to all of the parents of people with Tourette syndrome, PANDAS/ PANS or related conditions who positively advocate for their child and support them. Raising a child with Tourette's or PANDAS / PANS can be incredibly difficult - the meetings with school to try and get vital support, filling out paperwork, the appointments with countless doctors, therapists and specialists, not being listened to by services who are supposed to help, spending countless hours through the night scouring the internet for answers trying to find ways to support your child, fighting tirelessly for a formal diagnosis, being overwhelmed at the symptom overlap and how your child seems to have symptoms from a variety of different neurological, neurodevelopmental and psychiatric conditions because TS is not just tics and PANDAS / PANS encompasses a plethora of different complex symptoms, trying to explain to teachers, people in public and even other family members about the condition, feeling incredibly helpless seeing your child tic with such intensity that they beg you to make it stop and the gut wrenching worries about what the future holds, seeing your child taken over by OCD rituals or crying at their intrusive thoughts, seeing your child as a shell of who they once were, your happy, carefree child seems lost (but they will return), trying to help your child having a rage attack and being clueless on what to do because your child has flipped and is seemingly a different person during these episodes, trying to help your child with daily tasks such as dressing, washing etc because their tics and rituals make it virtually impossible to function and they may struggle to be independent, crying once your child has finally gotten into school and praying that they don't face any more ignorance or bullying and sometimes even mourning for the child you have seemingly lost and wishing that things would return the way they were before the onset and even feeling fearful during phases when the symptoms are milder in case it all returns. Tourette syndrome and PANDAS / PANS aren't just conditions that take a toll on the individual, but it impacts the whole family, and parents / carers and other family members may require support too, a listening ear or just the words "I understand, I believe you, you're not alone" can make a difference. The scenarios listed here may not apply to everyone, some pertain more to PANDAS / PANS and some more to Tourette's, but we all face struggles no matter what they may be and parents are worthy of support just as much as the individual with the condition.


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