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Original poster

OCD/Tics - my 6 year old boy

131 replies

babypup · 14/12/2015 12:47

Hi,
Not sure quite how to write this or what I expect in terms of outcome, but I feel I need to share, get insight from other Mums, and basically let out a big cyber scream as I feel so incredibly helpless and lost.

My son is 6 (will be 7 in April 16). On his 4th birthday he started having eye blinking tics, these have come and gone over the last 2.5 years, with excitement/stress being a causal factor each time. These have concerned me as a stand alone issue, but I just came to accept it as 'his thing'....they never really morphed into any other tics, just the blinking. he has gone through phases of excessive urination and adjusting socks too. But they came and went with no issue. I worried they were other tics but now I'm starting to feel the whole thing might be OCD related.

Personality wise, he's always been a worrier. Likes to feel in control, know what's coming next but nothing particularly bothersome. He's bright, does well at school, has lots of friends etc.

About 4 months ago I noticed he liked things to be a certain way at bedtime. He wanted me to check his bed was tucked in tightly at the bottom, that his wardrobe doors were closed....but once completed he accepted that and went of happily to sleep.

Now, in the last 2 weeks our world has erupted with him in a way I cant even explain. He has been invaded by what he calls ' bad thoughts', these are linked to thinking about peoples privates, bad language. He wants to talk all day about his thoughts, confess the thoughts, it's like his mind has just exploded. In tandem with this the simple routine of tucking in his bed and closing his wardrobe doors is no longer enough. He now need to check these things 10 times, sort out other things in his room, worries about nightmares, won;t go to sleep and if one thing is not in order he goes absolutely crazy and screams.
During the last 2 weeks when this has escalated there have been some changes at home so I do feel there is a correlation, but am conscious that the roots were there before.

So, I'm guessing OCD, have booked an appointment with a private therapist/done lots of research. But I'm devastated at what seems to be the utter disintegration of the child I knew at warp speed. I'm frightened about what all this means, whether I can get this under control and what to expect. I am trying to hang on to any hope that I can find a way to help my little boy come home to me again as he's gone.

If anybody can relate, or has any words I would appreciate it :( :(

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babypup · 30/12/2015 18:13

Lovely to hear from you and love the new MN name antimobiles. I hope you all had a good Christmas. I know what you mean about fear, it paralyses me and stops me enjoying things as I should. I took J to Frankie and Benny's for lunch today and his blinking tic was very bad, I was aware of a few people looking at him as it is quite alarming. There was a girl who was autistic a few tables down and had very loud vocal tics, I felt awful for her family as too many people were staring. It really makes me wonder....how some parents can be so judgemental and openly stare at a child. Anyway, onwards we go, let's see what 2016 brings. I do hope for a better year for J. If I wasn't in the midst of a marriage break up after 10 years I make feel like I had slightly better coping mechanisms. Being a single mum is scary, but seems even scarier because of his condition and all the uncertainty and fear it brings. Urgh. I better wo'man' up and find my stride xxx

OP posts:
IsurvivedXmas · 30/12/2015 20:30

I'm so sorry to hear about your marriage breakup. That is a hell of a lot to deal with all at once. Let's hope 2016 is kinder.xx

SealSong · 07/01/2016 23:56

How's it going, OP?

Original poster
babypup · 08/01/2016 06:33

Hi Sealsong. Ahhh, much the same right now, the only real change is that melatonin has helped with getting him to sleep at bedtime. I spoke to CAMHS yesterday, they said they still hadn't reviewed out case due to Xmas hols, and the only ones being prioritised were self harm cases, which I understand. She explained initially we may get contact via phone from a triage nurse, and from there it could take a while before we are seen face to face depending on the nurses view of severity. We saw a private therapist on Wednesday who has agreed to meet Josh Wednesday coming to start some play therapy and possibly cbt. He has good days and bad days, but never a day without thoughts and rituals xxxx

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Original poster
babypup · 08/01/2016 19:51

Oh dear....we now seem to have hand licking as the new thing he can't stop thinking about so has to do.....regardless of what he has touched prior (I can leave this to your imaginations...) This just seems to be getting worse and worse :( xx

OP posts:
SealSong · 08/01/2016 21:56

Sadly there can be unhelpful delays with CAMHS due to how stretched they are. The private therapy sounds like a good option provided it is a properly trained and registered therapist...CBT is likely to be very helpful.
Do let us know how you go on.

Original poster
babypup · 08/01/2016 21:58

Thanks SealSong. I checked him out and he is BPS registered and chartered. He is a Consultant Clinical Psychologist. He spent time working with children with social and emotional and behavioural difficulties so I'm hoping this sounds like a decent person? What do you think? Xx

OP posts:
Whycantweallgetalong · 09/01/2016 14:59

Hi OP, how is therapy going?

SealSong · 09/01/2016 16:10

He sounds ideal, to be honest, provided you meet him and are happy with him as a person also. I would get him to explain the approaches he plans to use, also to keep you involved in the therapy (if it's CBT) as that's what's most helpful with young children.

Original poster
babypup · 12/01/2016 18:51

Tomorrow we have our first appointment with the private clinical psychologist, as still no word from CAMHS which is disappointing :( He still seems so anxious with visible tics and increasing stress over his own thought processes. The longer it goes on unaddressed the more the associated anxiety about what he's thinking eacalates so it's a real viscous cycle for the poor wee man. I will report back on what the clinical psych says. I'm keen to keep this thread updated so that mums in need of info in the future get to follow a whole journey. Hugs to all who have contributed thus far. It means a lot xx

OP posts:
Idefix · 12/01/2016 19:41

Will have my fingers crossed that things go well tomorrow. Reading your posts has really reminded me of how lonely it was when we were going through this.

I think adding to the post is a great idea.

Toomuch2young · 12/01/2016 19:47

Sorry to hear about your little boy. I am an adult with TS and I hope the psychologist you get for your DS is really helpful. Flowers

Idefix · 12/01/2016 19:53

Just read the post on the 30/12/2015 babypup, my first vocal tic began just before his third birthday and lasted or 21/2 years - he barked Sad

It was very interesting that when he started he was obviously very small and people use smile and say how cute...that didn't last as he got older people were v judgey, making comments, huffing, staring.

I think sadly these people are incapable of empathy and just don't get how beyond a child/adults control a tic is.

SealSong · 12/01/2016 20:40

You can ring CAMHS and ask them where things are at re the referral. Hope the first session with the therapist goes well.

Original poster
babypup · 12/01/2016 20:59

Tonight was just awful, I swear the melatonin is not working as well after only 3 weeks. He circled and repeated rituals for nearly 2 hours, and was shouting saying I wish you were not my mummy anymore, I hate you etc. I thought I was fairly robust when it came to facing challenges but I can honestly say I am near breaking point myself now, every minute with him is utterly exhausting and draining. This is harder then hard....for want of a better expression Sad x

OP posts:
PJ67 · 12/01/2016 22:58

Really sorry to hear that you're both having such a difficult time. Good luck tomorrow.

Original poster
babypup · 13/01/2016 09:10

Thank you PJ67, it's a tough time. Last night was a real battle. Melatonin is not as effective as it was 3 weeks ago, I'm surprised at how quickly he seems to have got used to it. Also, whilst it eventually gets him to sleep it doesn't keep him asleep. So typically, he wakens about 3 or 4 for at least an hour shouting out and insisting we start checking things again. It's exhausting. His blinking tic, which was bad for 3 months at age 4, and has resurfaced on and off since but never for an extended period of time, has been at full force for the last month solid....this is a first in terms of continuity for a long time. I just feel so disheartened, every minute he talk about 'thoughts' and tries to engage in some convoluted discussion about things that are irrelevant. His ability to accept any change in routine is crazy, it's like he is controlling everybody in the house and we can't do anything. Urgh, sorry for ranting, but I just don't feel we are getting anywhere with this, probably just a bad 'coping week', but I have to say my head is down. I'm really struggling to manage any type of normal life for him or I xx

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Original poster
babypup · 13/01/2016 11:51

I rang CAMHS again today. This is the third time they have told me his case is being reviewed tomorrow at the Thursday meeting. So each time they have told me this before it hasn't happened, and we move to another week. Losing faith in them as they haven't even looked at the referral sent to them on the 19th December yet marked as urgent. Why they keep telling me it's up for review the follow day then isn't looked at for another week is bizarre to me :(

OP posts:
Idefix · 13/01/2016 15:47

How did the appt go? Hoping that it was productive.

Original poster
babypup · 13/01/2016 17:27

The clinical paychologist we met today spent time with DS. Confirmed its definite OCD. DS opened up well to him, he is keen to talk about all the thoughts as it clears his head. He said Josh does have a tic, but he didn't spot evidence of Tourette's but will keep his eye on it at the weekly sessions. He said one tic doesn't equate to Tourette's, and given Josh has had the same one tic on and off for nearly 3 years he doesn't think full blown Tourette's is in the frame, but obviously can't say how things will progress. He explained the process of the weekly sessions and that next week he's going to talk to Josh about feelings, as he thinks Josh is intellectually very advanced but his emotional terms are not as advanced. He described him as a great kid who is very smart and he thinks he can help. That's all I need to hear right now. Financially tough as this will cost 400 per month for weekly sessions, but worth every penny if it brings my boy home again x

OP posts:
Toomuch2young · 15/01/2016 08:11

I am pleased to hear that the psychologist is helping and that Josh will open up to him. Sounds like you have found someone really good and experienced. Such a shame that it isn't being readily provided on the nhs but at least you have been able to manage to find someone to help.

Original poster
babypup · 15/01/2016 11:24

CAMHS got in touch, they have offered us an appointment on the 26th with a Psychiatrist. No triage, straight to see the Psychiatrist. Now I'm not sure what to do, do I just stick with the Private Therapist or not, help lol! x

OP posts:
SealSong · 15/01/2016 21:27

I'd suggest stick with the private therapist for now, have the appointment with the Psychiatrist then decide what you want to do from there. It may be that the private therapy is working well by then and you decide to stick with that, or if not CAMHS might offer some other possibilities. Keep your options open.

Toomuch2young · 15/01/2016 21:39

I would take the CAMHS appointment. If it goes well you won't have to continue to pay £££, you can always go back private when the Camhs runs out, and they can offer lots of doors to other services.

PJ67 · 15/01/2016 23:33

That's good that you have an appointment at last. I would go along with both for now. A psychiatrist won't do so much in the way of cbt but more of an assessment and consider whether medication is necessary. They may of course offer cbt with an nhs person then you can decide about stopping the private one. Hopefully this means things will start to improve for you both, you must be so stressed.