Help with tourettes

[Gemz855]

Hey im after some advice please. My daughter is 11 and has physical and motor tics, shes had these since she was 6/7 years old, her tics became worse when she was 8/9 years old and have been relentless since she has quiet periods but then has really bad episodes, we have been to the gp they made several refferals after watching video evidence of my daughter and her tics but refferals to community paediatrics, university Birmingham, neurology, have all been rejected, in her last year of Junior school she had major tic attacks and the school intervened and made a refferal to compass where my daughter had CBTA therapy with a tourettes lead specialist however starting secondary school her tics have become high end again and im stuck as i dont no where to turn or who to ask help, i applied for DLA as there are a lot of safety aspects where I have to monitor her especially outside abd walking to school etc but DLA declined the application and said she isnt eligible, I need help with getting her a diagnoses

You could go to a speech therapist or a psychologist as they can diagnose your daughter according to her condition and symptoms. If not a full diagnosis, at least they would tell you her condition and which therapy/ management plan would be suitable for her.

I'm sorry you're having such a difficult time getting the right support. We've been a similar as you, high school had made it all a million times worse.
I made a referral through school to their mental health in schools team and the worker we had was amazing. We got medication through the paediatrician he was already under for sleep disorder. It's been life changing If I'm honest.
Do you have an emotional well being hub ? We went there as well who referred us on. It's exhausting accessing help.
I don't know why you would be refused dla, you don't need a diagnosis for it just different care needs to other same age children. Do you have any letters or supporting evidence to help a reconsideration?

Thankyou would that need to be a refferal from the doctor or is that something I can enquire myself for her?

Awww its awful isnt the stress of trying to get a diagnoses, yes we are now experiencing this with secondary school she is very social and a bubbly character but the anxiety of her tics coming back ten fold are tiring her out and making her a little reserved, im not sure about an emotional wellbeing hub I will look into that thankyou its abother little bit of advice that im open to. So the dla refused because she can walk and function and doesnt have mental health issues so I have contested it and requested a mandatory reconsideration so see what that comes back with. Yes on my original dla form I attached a doctors letter to state dates refferals were made and the dates the refferals came back as rejected, I attached the end of observation report from the tourettes specialist from Compass and i attached emails from her junior school when they made the refferal to compass for therapy as she was having really bad uncontrollable attacks in school so the school intervened to get support for her so the dla had all the evidence provided to back up my claim but still said no. I have to walk her to school because her arms jerk and she made contact by accident to another child she was mortified but ran off in embarrassment it broke my heart luckily the other kid understood and I worry about her being by the road, the doctors no all of this I have lots of recordings on my phone of her tics at home and outside. Its just really frustrating as the doctors have said they cant diagnose but they can clearly see what shes got and that's involuntary physical tourettes.

I'm really sorry for you, it's shouldn't be such a fight to get the right help. I also spoke to someone from Suffolk family carers who helped with an action plan as well, does your county have anything like that?
I really feel for your daughter being embarrassed, my son is the same. He's in year 10 now and sadly would rather be naughty and get sent out to avoid displaying tics in school and being laughed at. His school staff are rubbish too and he's punished for sniffing and burping as part of his tics when he shouldn't be.
It's such an uphill battle xx