I just want to help DS

[Headbangingbrickwall]

In summary, ds11 has been showing signs of tourettes with constant physical and verbal tics for maybe 5 years now, was mild but worse now than ever and annoying him that he hits himself in frustration. Over the past year, OCD symptoms are rituals and compulsions are his every day, touching stuff, missing a step, ducking under every door handle, chewing clothes. There are so many symptoms to list from OCD/tourettes/ADHD on the NHS site, it's annoying him every day, I have videos, I can't emphasise enough how much it bothers him day to day makes him feel weird twitching, clicking, squealing, doing his rituals.

Yet we go to the GP and Ds sits there still for 15 mins with no evidence of any of this. I explained how bad it is now, he just didn't believe me! Ds can't explain why he didn't do anything there, maybe he's masking. At home and outside, the tics are involuntary and he can't help them. At school I think he's masking too for fear of being weird, his teacher is massively frustrated he doesn't pay attention well in class.

We did get a referral from gp to a paediatrician to decide if he needs further help, it could be a wait. If he is masking at school, and when we see a professional, how do I help him?! He's hitting himself multiple times every day in frustration. We waited for symptoms to fade, don't pay them attention but things are worse. Do I need a private paediatrician or someone else? I'm not saying he definitely has any of these conditions, but his daily life is suffering for sure. Can anyone help please, who do I turn to?

Hi OP, hopefully you wont have to wait long. You may be referred to a child psychologist who will do CBT with your son.
If there is a number on your hospital letter, could you phone to see if there have been any cancellations. Definitely keep on recording the episodes. I hope your son gets seen quickly.

Did you show the dr the videos you've taken? And maybe keep a written record to show frequency and type of tics across a day to take back to dr.

Thank you so much both, I will start a daily record to show frequency. The Dr didn't see the videos! I'd gone through my (long) list of symptoms and concerns, he commented how still he was sitting throughout and I said but I can show you, he said I don't need to see them. We got the referral despite his manner, but it's the 1st time I felt like I've not been believed how badly this affects him!

I'm afraid if you want any genuine help you will have to pay for a private psychiatrist.
If you are in the UK mental health support is non existent.
I can only speak from experience that my now older teen DD had similar for years on and off in intensity and later turned to self harm.
Some of these features can be a part of ADHD or ASD.
We saw someone privately and she started medication which helped the OCD hugely. She was older though than your DS.
She was given some tools to help with the OCD but being honest it was the medication she said sort of switched it down to low so she could move past it.

Have you tried CBD oil? We used this and it stopped DD's tics completely after about two weeks.

But also yes to it being a feature of what later transpired to be ASD and ADHD, but after the early use of CBD the tics never reappeared.

Tourette syndrome support group U.K. on Facebook

Tourette's action is the U.K. TS charity

My son has Tourette syndrome, it is very difficult to get help in the U.K. as very few NHS trusts have a neurologist to help (it is a neurological disorder but often CAMHS are involved and have no clue what to do or a GP or consultant doctor have no route to refer to a specialist.

Lot of support from the fb group and the TS charity

@ilovebagpuss my worry is self harm, he's seeing himself as weird and not normal and already had low self esteem. He has hurt himself before (no outside influence of social media). I'll look into a private psychiatrist....any tips finding or choosing?

@LetMeEnfoldYou no I haven't even considered, but I will certainly look at it now, thank you.

@whatsinanameeh I'll look at those both, thank you!

@whatsinanameeh I've just looked at the FB group....reading down I could cry, that's my Ds, exactly. Thank you so much, I'm going to look through more later.

Have a chat with the school sendco. They can fill out something to support you if they agree he needs support. You can take this to the appointment.

They may be asked to complete (you too) a connors questionnaire which screens for likelihood of adhd. Is he still in primary? Because it'll help if it's done by people who know him really well.

And take the GPS comment about sitting still there with a pinch of salt.

My ds has a genetic condition which is physical but also has asd. For some reason so many of the doctors/ consultants who are seeing him for his physical disability seem to need to comment in the report that he also has autism but communicated well with them that day. Even when all he says is yes and no in the answer to questions 🤦‍♀️

I am West Mids and was just lost at sea with no help. I googled the local area for private psychiatrist who would see teens.
I emailed a couple and got one reply.
Thankfully we were able to pay on credit card and see a wonderful man who we see every 6 months now as he guarantees the prescription although NHS fund it it's a shared agreement.
I'm not pushing drugs as a cure all and we did explore psychotherapy and a few helpful steps for intrusive thoughts etc.
For us there was no massive trauma or issue to explore through therapy. I do think it's possibly ADHD but we didn't push for diagnosis at that point or tourettes we just treated the symptoms.
Anyway just about to start college happy and stable so there is light along the way.

I must add I searched for actual accredited psychiatrists as only they can prescribe.
I went full stalker mode and found my chap also worked for the NHS occasionally and had excellent reviews at that hospital.

I understand. My son has peaks and troughs of symptoms and at one point said he'd rather be dead so he wouldn't have TS anymore. But also, he's gone through months of low symptoms where his real personality has come through. Those low times are hard though, as mums we are broken hearted when our child is hurting. Many of us are desperate for help, I hope you find some support and signposting in the fb group x

I made an appointment for DD who had developed motor tics (already has an ASD diagnosis) and the nurse just said can't you just take her back to where you got her diagnosed - we went private due to a 4+ year wait, and then she rang us up later and said DD could have a blood test to see if it was linked to a nutrition deficiency and that was it. Blood test came back with "no further action required" on it and I've heard nothing since. I love the NHS and what it stands for but it's no wonder people go private, but it used all of my spare savings and I can't afford to do it again and then get treated like you shouldnt access NHS services afterwards.

I just want to say a massive thank you to everyone on this thread, I've contacted sendco though not reply yet, diary keeping is proving difficult because it's constant but I have got more videos as evidence showing the upset and frustration. I need some time to go through all the information and options, although the symptoms have been building for years there's suddenly a diagnosis that could fit and it's eye opening.

@ilovebagpuss I'm going to pm you, but please don't feel obliged to reply!