OCD/Tics - my 6 year old boy

[babypup]

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 :( :(

I am another OCDer and have a 6 year old with some tics and some signs of intrusive thinking occasionally. I am more or less recovered (though like with anything you can't erase a behavioural repertoire so I am not complacent).

I would want him seen medically asap because of the speed of deterioration, strep is a known exacerbant but just to have an overall check of his physical health and well-being, which I think is always a good idea when facing a new diagnosis to ensure there is no underlying physical reason.

The throat may or may not be related to the OCD type symptoms, but either way thorough treatment of the throat - including swabs to see what is the cause - seems indicated, along side a CAMHS referral. I would start with trying to get both of those things happening from your GP appt and take it from there.
Re waiting to see CAMHS, once the referral is in you will be able to ring up and speak to a duty worker, and that may speed up being seen particularly if there is further deterioration or worsening symptoms.CAMHS can be slow for non-urgent stuff but I wouldn't class this as non-urgent because of your sons distress levels.
Try not to beat yourself up, you're doing a great job, it's not easy.

Hi everybody, I promised I would update so wanted to check in.

We saw the GP last night, he spent some time with my son and did say he thought his case was quite severe, he seemed to have a lot of disturbing and confusing thoughts and needed to see somebody. He has put in an urgent request to CAMHS so I am waiting to hear from them. He has prescribed melatonin to help him sleep.

He checked his throat but says it's just a virus, no medication needed and it seems to be subsiding now and is less red.

The OCD patterns remain, whats even harder now is that he continues to be dominated by thoughts that were once mainly at bedtime to all day long. he says everything is freaky....it could be the garden, a coffee cup in the car, the LCD radio screen in the car, or a song on the radio. All day seems to be taken up with an outpouring of fears....not just the OCD part, now extreme anxiety.

I have identified a Clinical Psychologist privately who can see him early January. I just have no clue how we are supposed to get through the next few weeks if CAMHS don't see us. The melatonin might help him fall asleep, but it's the constant daytime anxiety we are dealing with now too. I fail to see how we can function much longer in this pattern.

I will keep you all updated xxx

How depressing, went up to get Melatonin prescription, as it's off licence in our area the pharmacy won't take delivery of it until Wednesday....not particularly helpful at the moment :(

babypup you have my sympathies, it sounds very difficult for you at the moment.

I just wanted to say that when my dd was extremely anxious she had some very unusual thought patterns that I found really frightening, (eg, one day in the supermarket she couldn't decide which tin to buy because the others would feel left out). I used to feel very panicked by them but I think that they were a symptom of the extreme anxiety she was suffering at the time. As I said up thread she was compelled to share all these frightening thoughts with me and some days there was no let up. Once her anxiety levels improved the thoughts seemed to have less power.

I too had OCD postnatally and was tortured by fear and awful thoughts. I've since made a full recovery. HTH

Waitingforsherlock - thank you. It is very hard, you are right.

It truly is exhausting at the moment, for him and us. He put his head in his hands today and said 'I wish I could switch of my brain and have Xmas not spoiled by my thoughts'. Horrible hearing your previously upbeat and gregarious wee lad come out with that.

At the moment, we are temporarily (god willing) trapped in this hell. It's likely to be the New Year before we are seen, and of course that won't bring any immediate changes. I am so tired and depressed (selfish I know) listening to the continual outpouring of admissions, fears, random things....OCD has literally taken over everything. I am angry at this insidious, vile cycle my poor child is locked in.

Sorry for ranting, I just feel so angry and bloody useless and feel like my heart has snapped in two xxxx

Really glad that your GP is putting in an urgent referral to CAMHS. Now you can ring their duty worker if you need to (in office hours) and if you are raising concerns as to how severe it is that may speed up the process.
You are right though, you're unlikely to get seen before Christmas.

Keep us posted

Glad the GP took things seriously babypup. This must just be so stressful for both of you. I would definitely phone CAMHS first thing Monday morning and check they have the referral and ask if you can phone every day to check for cancellations. Hopefully they have some spaces for urgent referrals so maybe he'll get seen before Christmas.

I rang today and spoke to a lovely girl. She said that they usually review referrals on a Thursday so t will likely be done on Wednesday this week to avoid backlog over Xmas. That said, she was honest and told me it wouldn't be before Xmas :( God it's hard, I was hoping just the melatonin would make bedtime easier at the very least, but as the prescription is not on our formulary it had to be specially ordered and I won't get it until Wednesday, which begs the question as to why my GP thought that would give us some short term immediate help. 5 more nights from hell ahead, it's totally soul destroying at the moment. I'm trying to stay positive but it's very hard ladies xxx

Babypup have rtf and glad to see you have had some help and more to come.

Your op brought many unsettling memories back to me of my own ds at this age. I clearly remember the fear of anticipating how much worse things can become.

I am not best place to advice on current thinking on treatment but wanted to let you know that ds is now 17yrs old and virtually free of noticeable tics and ocd. Ds started with just facial tics which extend to vocal and large physical tics such as arms/legs kicking out. As others have said stressors tend to exacerbate symptoms as does direct attention to the behaviours.

We didn't go down medication route although this was offered but focused on strategies to cope. Magically facial and vocal (throat clearing, screeching/squeaking/barking) disappear when playing trumpet, riding a horse etc.

Ds does still are melatonin to assist with sleep, as mind "churns" and keeps him awake otherwise.

Sorry for all the typos, not on top form at the moment in bed with an ear infection

Meant to say very interesting to read about the strep theory, Ds was constantly getting tonsillitis from age two when tics started.

Stay strong, you sound like a wonderful mummy

Idefix, thank you for your post and for sharing. I'm delighted your DS is doing well, it does give hope.

I don't feel like a great Mum right now, I feel bad that my patience is diminishing. I find the constant talk of negative thoughts so draining. I spend all day trying to distract his thought process to no avail. It can be disheartening. In my world you know things are bad when the 'evening glass of Pinot' is on hold. I haven't had a glass of wine in 3 weeks for fear I might break down in tears rather than singing Xmas songs! Got to find some reasons to laugh I guess xx

I think without it being a deliberate choice that we made with ds we did use the love of routine to ease things.
Somebody up post mentioned the radio/white noise these may be worth a try.

We used to read to ds, Rupert Bear annuals- they have a very rhythmic singsong pattern which helped to lull ds into a "neutral" mindset. Also cd of stories helped give same effect.

Hopefully the melatonin will help, we found it to be very quick acting.
Remember you have done nothing wrong and that this is a incredibly difficult situation to cope with. It is very hard to stay calm and positive in the face of constant but firmly believed in illogical fears.

I really feel for you op, there is a deep, grieving sadness when realising problems such as these and having face them, but it does get easier. Have you looked at some of the web pages for ideas.

www.handsonscotland.co.uk/topics/unusual/tic.html

www.ocduk.org/tourette-syndrome

A glass of wine maybe no bad idea in my books, if it gives you a wee boost.

Could you ring round pharmacies further away and drive and get it from somewhere that has it is stock?

babypup thanks for continuing to update. Yes I think you try what foragogo suggested. Whereabout are you? I could try ringing some for you.

Hiya. I checked if there was a faster way to get the Melatonin, but in our health board it's off formulary and order only, so nobody in Fifecan get it sooner. It's been a tough 24 hours, he just seems so depressed. I have been told he wished I was dead so he could have some peace, he has been thinking about his childminder being run over, and his puppy being dropped in a pool of lava.....how horrible to hear! Anyway, trying to keep going, nothing significant is going to happen until January so I need to toughen up :( xxx

Have only just read this thread. You sound like a lovely mum and like you are doing all you can.

I hope you hear quickly in January and you aw able to have a nice Xmas. 🎄

Hi ladies. That was a tough hour and a half getting him to sleep. Dad chats with him for half an hour once tucked in - describing that we will do tomorrow and talking about fun stuff to keep his mind in a good place. I stay upstairs in my room after goodnight kisses, as he prefers not to be alone upstairs. Despite this, as soon as we say goodnight it all starts....fear that he left his playrr toy box open, I explained it was shit but he still had to get up and check. Then the 'just right response' phase starts. He says a word and demands you repeat it, if you don't he goes ballistic. It goes on and on and on. It just seems to be getting worse daily no matter what we do. I am truly exhausted and feel utterly defeated. I am scared stiff of the future let alone the here and now. I am ashamed to say this, but I'm going to and know full well I may be slated for it....mothering him feels like a prison sentence right now. I can't smile, feel nothing and can't remember the last time I felt remotely happy. How selfish making any of this about me I know. Our lives are controlled by this hideous illness and I feel like running away. Will it always be like this xx

It's so hard to hear your DS saying things like that, and upsetting of course to see him so distressed, but hard as it is, they best thing at the moment is to try to be nonchalant when he comes out with those statements, e.g. "do you darling? -change subject - shall we read a book / what would you like in your sandwich' etc ....you can offer him acknowledgement at other times that you know he feels unhappy and it sounds hard, and cuddles and love of course, but I would not give the actual thoughts too much attention as that can cause children to seek that negative attention (I am not meaning that he is doing this for attention, not at all)
What is most likely happening for him is that he has noticed the everyday odd intrusive thoughts that we all have but usually barely notice and if we do notice tend to dismiss quickly with 'that's ridiculous' and think no more of it. But sometimes people notice the intrusive thoughts and get worried that they are having them, that it means they are bad or that those things might happen. Of course they are not bad and those things won't happen, but that's the nature of the anxiety, and it can build up to acute and distressing levels.
What CBT will do is to help your DS understand that getting random odd thoughts is normal and do not mean he is bad / the things will happen, and the CBT will also help him reduce the behaviours (checking, repeated behaviours etc) that he may be doing to try and cope with those anxieties.
CBT can work very quickly, particularly with young children. I would hope that CBT is offered to your DS.
They may want to consider medication also, I would be open minded about that, but still ask for the CBT if it is available. He is at the younger age at which CBT is used, but I can't see why it could not be used and adapted to his age and development level. I've known it be used for 6 and 7 year olds.
Sorry for the essay!

The other thing that CBT should offer is support for you in how to respond and manage the behaviours. Most CBT with young children involves the parents as well, which is necessary and helpful.

It sounds utterly exhausting at the moment. I hope my post has not come across as a criticism in any way. I think you're doing really well, it sounds so hard. Things will get better I promise.

Babypup, just reading your thread now, what you & your poor wee chap are going through sounds utterly unbearable & heartbreaking.
You sound like an amazing mum dealing with such a tough situation.

Hang in there, wld keeping him as busy & active as possible help in the daytime do you think, are there any activities he loves, especially with it being the school holidays now.

Thinking of you. X

Babypup, I hope you get a good nights rest.

Thank you to all for you posts last night. Sealsong, don't apologise for the essay, the content of your posts are so incredibly valuable to me.
Today has been all about distraction, we went to the Edinburgh Winter Wonderland. Josh ice skated for the first time and had the whole rink in stitches laughing, he is such a trier! He went on the dragon rollecoaster, helter skelter and enjoyed a huge hot dog. It was nice to see him smile and feel normal. Don't get me wrong, there were still admissions, rambling and the odd comment about wishing we were dead but not wishing we were dead! But it just felt a bit better today so I will take that. Dreading bedtime as I know it will ruin a good day, wishing we had the melatonin but only 2 days to go. Hopefully that will bring relief.
Ladies, I think you are all wonderful for staying around this week, your posts make me feel so much less alone. Thank you all from the bottom of my heart xx

Aah! Sounds like you all had a lovely day. What joy seeing dis smiling and playing like any 6yr old again. Take everything one day at a time for now and just relish each moment. Hoping bedtime might be a bit easier on you tonight. He will get better. He will.

Xx

Thanks Antimobiles. Bedtime was not too bad, but I stayed with him. I have noticed he is finding extra things to check each night, a new thing nightly to add to the list. Not sure why that is? But overall today was a small win I think xxxx