Hand hold please. Think my son has Tourette's/OCD

[Clarpster]

Have had to name change for this. My 10 year old son developed tics over a year ago. He suddenly developed loads of really obvious jerking movements at school one day. He'd been clearing his throat and coughing for ages before that which was being medically looked into so I hadn't realised was a tic. He's also very anxious and scared of things. It all seemed fairly harmless, he was referred to Camhs and had an initial assessment about a month ago. He had started to put his fingers down his throat, which the assessor said was still a tic, just a more complex one. He described it as a tingling feeling in his hand and throat so he had to do it. He describes that feeling with a lot of his tics. Everything has escalated since then and I feel helpless and gutted.

A few nights ago he massively overreacted to being told off for being a bit mean to his younger brother. He told me that he couldn't stop thinking about hurting and killing him and was slapping and punching himself in the head to try to stop the thoughts. He found it extremely upsetting and told me he's an evil person who can never be trusted to touch his brother again because he might hurt him. He said he had a tingling feeling in his hands to grab him. He then had a feeling in his fingers to swear at him and was sitting on his hands and rubbing them to stop himself. He came out with this whole list of crimes against his brother, which were mostly non-events such as being a bit too rough whilst playing and making him cry then not telling me the truth so he didn't get into trouble. He started talking about how he thinks he has been accidentally swearing at him - his fingers have unintentionally been in the position of a swearing gesture towards his brother whilst picking things up. This was an obsession a few years ago where he couldn't stop worrying about accidentally swearing at people whilst going about daily life, he talked and cried about it every day and couldn't sleep. I thought he was over it now as it hasn't been mentioned for a while and was just a silly childhood thing.

Then last night happened. I feel awful typing this out. He was watching tv and suddenly turned and told me he had just put his finger in his bum and then in his mouth. Told me he was tired and his body made him do it and kept trying to make him do it again. I've never even heard of anything like that before. I acted really calm about it and focused on washing hands/mouth etc and casually talked about it. If I say anything too much he does it more. He then poured out all of these thoughts he's been having since the incident last week. He keeps having a dream about a particular imaginary person and every time it happens he wakes up and has to grab his crotch really hard otherwise he has this painful feeling all over his body and head and his head feels like it will explode. He said he keeps thinking he wants to have sex with me. He was so upset and ashamed but I'm so pleased he managed to tell me. I tried to explain a bit about how these thoughts aren't really things he wants to do because he finds them so upsetting. He told me he wants to run away because he has told me horrible things and this is why he says he hates his life. During all of this he was lying on the bathroom floor crying and I was hugging him. He kept getting his foot near the radiator so I told him not to because it was hot. I could tell that he immediately wanted to do it. I also made the mistake of telling him nothing he could say or do could embarrass me, I looked after him as a baby am had to change nappies, and he immediately turned to me and said he wanted to poo and wee on me.

God I can't believe this is actually happening. He calmed down eventually with LOADS of me distracting and changing subject and went to bed. I told him I would call CAMHS in the morning and he was happy for me to do that but said he can't ever talk to them about this because it's too bad and embarrassing. He doesn't really understand what CAMHS is or why he was there so I told him a bit about how they hear this stuff lots and it happens to other children too so their job is to help.

He hasn't had a letter yet about an appointment for any treatment but the woman at initial appointment said he would receive help for anxiety. I think this is now way beyond that. Do I just call up the receptionist and ask to speak to somebody to fill them in on what's been happening? We've only been there once and I don't know what I'm supposed to do. She was very focused on his tics having an anxiety trigger, which they do when a new and obvious one develops, but there are always others there in this background and I don't think I made that very clear.

Another thing I forgot to mention is that he has these intrusive thoughts but no 'rituals' or typical OCD behaviour in an attempt to stop or control them. His tics seems entirely unrelated to his thoughts, he describes those as uncontrollable urges. Is that normal? I am so worried about him right now.

Poor boy. I have no advice but just didn't want to leave your message hanging, I'm sure people with more experience will be along in due course. I think it's so great that your son has been able to talk to you about it though, and the way you handled it sounds perfect to me. It must have been so hard for him to open up. Sounds like it could be some kind of interaction of his anxiety with puberty, so instead of a disturbing thought just passing through it gets kind of latched on to and ramps his anxiety up even more? Hopefully CAMHS will be able to help.

Thanks for the reply, I have been worrying all morning. He seemed fine this morning, I think he is slightly ill which is making it worse. Nighttime and bedtime seem the worst times anyway. Not sure about puberty - he has a medical condition which means he is nowhere near puberty yet and may not go through it naturally. He's only just lost his first tooth. My poor baby I think his brain is coming up with the worst things he knows about. He knows the basics about sex but it's quite obvious he doesn't have a good grasp of it when he asks questions. He knows that it's rude from the way kids at school say things and I suspect has latched onto it for that reason. I asked a bit more about the crotch grabbing but he really does seem to mean just applying pressure to the whole area. I started to worry that he has been abused with the common link between those actions and thoughts. He 'confessed' loads of silly things to me when I questioned him but just got exasperated and annoyed when he understood where my line of questioning was going so I don't think it's that. I suspect he has been having violent thoughts about hurting us, it seemed like there were other things he hadn't said before last night. I'm worried that future urges might involve hurting himself.

Called Camhs this morning and it was a bit frustrating. The woman I needed to speak to was just going into a meeting where they will be discussing my son and the plans for him. But her original ideas were that he had some general anxiety and only had tics when anxious. And then there was the idea that in his 'early years' I have basically ruined him. I can see where she is coming from with that given what I told her in the initial assessment, but I think they are barking up the wrong tree. They don't know about any of this new stuff. She said I'll get a call back when they're done so I imagine there could then be another wait until they have a meeting to discuss the updated information. I hope they'll tell me what to do when he's in the middle of it and hitting himself in the head telling me he hates himself. I feel really lonely in that moment because it seems like a sudden, urgent situation and I don't know what I'm supposed to be doing to ensure I don't make things worse.

Hi there - did you hear back from them?

No, I didn't. I called again a few times to check I was definitely getting a call back today but got nothing. Perhaps the woman had appointments, I don't know. I'm going to have to keep calling them again tomorrow. He's already started saying it again. I feel so weird and down and on edge - I just want it all to go away. I've brought down his fidget spinner and cube to give his hands something to do when he gets the urge but I know he's still thinking about it and fighting himself

 to you and your DS.

Definitely keep chasing CAMHS tomorrow.

Tourettes Action have a helpline you can ring as well:
www.tourettes-action.org.uk/9-helpdesk.html?8

This also lists some useful coping mechanisms - distraction seems like a key one so I think you are doing the right thing:

tourettealliance.org/an-introduction-to-comorbid-ocd-intrusive-thoughts-13/

I don't have direct experience of OCD or Tourettes to offer you any personal advice, but I wanted to reply as it's rubbish you have been left without any support by CAMHS (but sadly not unique - our experience with them wasn't useful - however it does vary a lot from area to area).

Oh my disappeared from the first line.

Thanks for that, I looked at those links and may call them if I'm struggling. It all feels very scary and urgent to me right now even though I know realistically that nothing has changed. I feel in this state of panic where he might do or say something totally crazy at any moment and I can't predict it. It's like I don't know him anymore. And I know that isn't true, I am making sure I don't show it at all but I feel like I'm living in a surreal world where my normal suddenly involves removing his hands from his mouth while he's screaming and wailing for me to stop him and then walking around waiting for the next bombshell. I don't want him to have to go through this. I had really hoped to get more replies from other people with children in this situation, surely it's not that uncommon? I don't know. It all seems horrible and bleak and I'm not helping anybody by thinking that. He doesn't even have a diagnosis of anything. But I think it's pretty clear that there is an issue now. I'm scared that he's saying and doing things and it's secretly because of the thoughts in his head or his urges and I can't tell what's silliness and what's something else. I am watching his interactions with his brother with fear, like he's some kind of monster. His brother is only 2. And I feel like a terrible mom for doing it. I KNOW it's not his fault and I feel trapped in this panic reaction where I am analysing everything he does. I can't even ask him about it without triggering it. I hope I wake up tomorrow with a more positive outlook because I am no good right now and this is only the beginning.

Oh my I hope you both get the help and support you need. It’s awful to see them struggling with things like this. My son now 14 has suffered from what we’re diagnosed as childhood tics from being a toddler. He would develop a tic and do it repeatedly and then suddenly it would be gone as quick as it started but then there would be another different one and another and another. Sometimes he would do two or three tics in sequence. Some of the tics he displayed were clearing his throat, widening his eyes, protruding his neck, raising his shoulders, making a huffing sound he also would repeat the last few letters of the last word in each sentence for example he’d say” are you going to work erk erk” or “I want to play ay ay” The tics got less as he got older but they seem to be coming s little more again now I feel stress worsens his. At the moment he is twisting his neck as if he is stretching it or he squints his eyes, he says he can’t help it there’s just s feeling making him do it. I don’t know if it’s related at all but a few months ago he said that he was hearing voices and also kept having a sensation that everything around him was going very fast although he knew it wasn’t. I think the constant changes that kids go through plays havoc with their physical and mental health and the worry it puts us parents through certainly does nothing for our mental health. I hope this helps you feel that you and he are not alone.

Thanks for that. Are you worried about the 'things going fast'? My son has described that to me in the past but it was years ago now. He also went through a period of telling me that he could see people's heads going big and small and was alternately terrified and finding it hilarious. He was hospitalised but nothing was ever found. A doctor told me it was "bullshit" he has said it a few times since but it's not really been a problem.

He's had lots of simple physical tics and I found those a lot easier to deal with as they don't cause him any distress. He's currently doing throat clearing, sniffing, blinking, stiffening muscles in his neck and flexing his hands. I barely even notice those ones anymore! I just don't know whether these strange and complex ones are tics or something else altogether.

I’m not worried really as I took him to the doctors about the things going fast thing who wanted to do blood tests for the likes of diabetes but my son point blank refused to have bloods done he’s petrified of needles but since we spoke about it he has only had it one more time since so I think talking about it helped him. I suspected something neurological initially seeming like epileptic activity but now I truley believe it is all hormonal related and probably a very common thing in kids. The tics i was told they could give him tablets for but they said the tics weren’t so bad and didn’t warrant such a strong medication. The more severe tics that your son is experiencing although they are more alarming to you they sound to me like they are much of the same thing. They don’t know why they do that particular thing they just can’t help it. I think it seems worse because it’s quite a sensitive and private area and can seem to be something more than it is if that makes sense. The thoughts your son is having with regards to violence and sexual tendencies is probably much in the same as my son hearing voices although my son has never elaborated on the content they didn’t upset him infact he found it quite funny especially after we did a little research and found it quite common in adolescents to hear voices it is just their own voice in their head seeming to answer questions and say random things but it’s all them but again having no control over the content. I would still pursue getting answers help from GP/CAMHS but please please try not to over think it all, easier said than done I know and I should listen to my own advice but there will be a light at the end of the tunnel.

I changed my user name btw just slightly 😁😁

I think this board is quite quiet so there may well still be somebody along with direct experience - it can just take a while. Even for very "common" stuff like ASD and ADHD it can take a while, so I don't think a lack of responses necessarily means your son's experience is extremely rare. May be worth seeing if you can find an online Tourette's forum somewhere too - you may find adults who remember having these feelings as children and what helped them?

Keeping everything crossed you can get hold of CAMHS today. I know they have a bad reputation but my DBIL works for CAMHS (in a residential unit rather than in the community) and is lovely - but I know from him how very under-resourced the service is in general.

Thanks for the messages, it's lovely to know that strangers are taking the time to reassure me. The Camhs woman called me back today - I think she thought I was calling to get an update on their plans for him. I did try to explain to the receptionist that that wasn't the case but she must have misunderstood. I filled her in on all of it and they are taking it seriously. I feel calmer about it knowing that there is a plan in place. She said they are going to offer a short term course for tics which will be about habit reversal and not go very deep. I think that will be first so hopefully build up a bit of trust and help him deal with his reluctance to speak to them. He's also going to be offered psychotherapy. I'm unsure about this because she again mentioned early years experiences and I'm not sure that's right. She has said that I can go to the initial appointment, see what they suggest and then refuse if I don't think it will be beneficial. Wouldn't that just make me look uncooperative? And when I filled her in on what's happened over the past week, she has said that she's going to refer him to a psychiatrist and see how quickly somebody can see him. Just speaking to her was reassuring. She said that distraction is a good technique so to keep doing that. I asked whether this could indicate certain things (OCD etc) and she gave me a diplomatic answer. But mostly that I have to wait for another professional to look more in depth and she can't diagnose anybody

Just in case anybody is still reading - feeling crap again. He went to his dad's and it made everything worse, as it always does. His dad has been shit his entire life so he usually comes home and cries that he misses him on a day he's seen him. I think it would be better if he never saw him again but that's out of my control. The latest is that his dad apparently does nothing when he's there. He got a new girlfriend and moved in with her after two weeks. So now my son sits on a games console in a strange room with a stranger while his dad falls asleep next to him or plays on his phone. All he wants is for his dad to give him some attention and play a game with him but they apparently only have one game controller - clearly and unfixable problem He's told him he can't take him out anywhere because it's too cold, then dropped him back early because he had things to do. I can't get into it all now but he has never been a good dad. Always puts himself first.

There were lots of tears at bedtime, telling me he misses his dad and parroting all of his dad's excuses so I won't be annoyed at him. Then the odd behaviour started up again - he wanted to bite things and started licking something. Then told me that he keeps seeing things out of the corner of his eye so he knows ghosts are real and a big light flashed in his eyes in the way up the stairs. Then went back to telling me that people's faces were changing and one half of my face was big. I told him that seeing things out of the corner of his eye is just his imagination and the same for the heads changing. He had scans done when he first started saying that, so I know there is no physical problem with his brain causing this.

He's asked me to speak to his dad and basically beg him to give him some attention can't do it himself because he would never say anything negative to his dad. Probably out of fear of him not liking him anymore. He feels he has to earn his affections. But he doesn't want me to tell him about any of the stuff that has been going on. I'm so tired of this and angry that ten years on I'm still trying to force his dad to step up and at least pretend to be a decent dad for the few hours he sees him while dealing with all this other stuff. I never knew it was possible to hate a person this much. I'm so worried about him and trying my absolute best to fix it while his dad continues make sure he knows he's his last priority. I don't think telling him about my concerns is a good idea. I think he would attempt to 'help' him and make everything worse. He doesn't manage basic parenting so I can't see him handling one of these episodes.

The fingers down throat urge actually started during a crying session over his dad, he'd come back from there and said he missed him. I informed his dad the next day in a neutral way, laying out my plan, thinking it might make him realise how badly he is affecting him. He put on a sympathetic voice and said "yeah well I can't do anything about having to work can I but he's just a kid, he can't understand that" as though he would forgive our son for getting upset with him because he is unable to currently understand that his dad just HAS to put everything before him he seems to think that we are thick and believe his excuses about having to work all the time. I told him that children do not have to understand why they always come last and an adult should never expect them to, he swore at me and hung up. As if I would ever agree that my son is the problem for not understanding that his dad is right to treat him the way he does. And the way he put on this voice as though he's being really reasonable and understanding and will forgive the kid for lacking the capacity to understand. If he could just understand, he'd obviously be happy to be treated this way

didn't want to read and run.

Your poor DS - there's a lot to untangle for him there.

Hopefully CAMHS will try and do this for him. It is possible a lot of what he's doing is anxiety / rejection related (my DS's anxiety always has some kind of outlet, which can change. We've gone from driving excessive (as in every minute he had to take a drink), hand washing and fear of germs, to physically being sick every morning etc).
But I'm no expert, and your DS clearly needs some expert input now.

Also it's such a lot for you to have to deal with on your own, and quite understandably you are feeling really angry towards your DS's dad.
Don't be afraid to seek support for yourself too if you haven't already - it might really help to talk it all through with someone neutral if you haven't already.

Caring for a child who is highly anxious / has additional needs can be very stressful; unless you have been there I don't think anyone else can truly appreciate the strain that the worry can put on you.

(Oh just noticed I wrote 'driving' rather than drinking! I can confirm my 9 year old can't drive yet!)

Just wanted to send too, that sounds like a really shit situation with his Dad. Poor lad and poor you.

I really hope CAMHS can give you an appointment soon. As others have said, the anxiety around his Dad can't be helping but there is a limit to what you can do about the situation there? Do make sure you look after yourself too. It's a very difficult situation to be in and must be putting huge pressure on you.

I do feel panicky and sick about it. I can't relax, I can't continue on with normal life when he is so far from okay right now. He specifically mentioned his dad during the initial Camhs assessment. Things aren't great at other times but it's so much worse when he's seen him. I wish he had just disappeared for good when he was young rather than this long drawn out process of being let down and made to feel worthless. I described the situation with his dad and a lot of the problems I have had and the nurse told me it sounds as though he has a personality disorder! So I don't really know what to do. I can't fix his dad and that is one of the main things in his life upsetting him. It sickens me to think that the person causing him damage is his own parent - one of the people he should be able to trust the most. The nurse specifically mentioned some work around his anxiety and relationship with his dad but that they are basically sticking a plaster over it if his dad continues to behave in this way. And he will, that's who he is. I spent many years trying to get him to step up, thinking that if I could just make him see what he was missing out on and how much he upset him he would do something about it. I've decided not to speak to his dad today anyway, I just don't want to speak to him right now. I have a few days to try to talk to him but I don't know what to say. I'm not sure how to phrase this without his dad getting angry at me as though I'm telling him what to do and without telling him things my son doesn't want me to. He definitely won't just accept me telling him that our son is upset and has asked me to speak to him because he wants to do more with him. That will end in him making sarcastic comments to me and swearing at me. I hate that my son is asking me to fix this problem for him and I can't! I've just lumbered him with a shit dad. Any ideas of how to bring this up in a way that isn't going to be confrontational? But also doesn't somehow try to share blame between him and my son?!

The other issue is that he's always been quite 'difficult'. Not naughty, but I am regularly exhausted by dealing with him. No idea how much it is to do with anxiety. But an example from today - picked up from school, asked what was for tea, tantrummed about response, asked if he could go to a friends house, tantrummed about response, told to put bag and coat on hooks,
tantrummed about it etc etc. And I can't always tell how to respond to these things. It's just normal daily stuff and constant battles - he already knows the answers to all of these things and the rules of our house are very clear and consistent but it's still an issue every single day. There is a point where he needs to be disciplined and I don't know how to go about that without making things worse. Doing my calm explanations doesn't work because he won't take no for an answer and expects constant treats and surprises and nice things. He's never just content. I don't know why he's that way because I've never spoiled him like that and he has never learnt that asking and tantrumming won't get him what he wants. I'm scared to set him off by being firm as I was firm with him last week and it set off this huge overreaction and sequence of horrible events. I have no idea what to do for the best. The only time he's happy is when he's sat in front of a screen or has somebody's undivided attention. He doesn't do anything else alone and won't ever physically be alone, which I think is to do with being scared. It's all so exhausting.

That sounds tough. It might be worth starting a separate thread on that as there are probably techniques a bit more broadly than just tourettes /ocd? Hang in there. You will get answers xx