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 :( :(

[orangepudding]

I would take him to the GP so a developmental paed can examine him and make any diagnosis if needed. Hopefully that will lead to help.
This time of year is very difficult for neurodiverse children. My son has asd, adhd and some tics too, he is particularly unsettled at the moment and more symptomatic due to the changes in timetable that happens around Christmas.

[Pidapie]

Hello! So sorry to hear you are having such a hard time with your son. I have only today heard of something called PANDAS, and I recommend you read about it so you can ask GP for a test. I will be going for one myself. I have had OCD and Tourettes (tics) since I was 9. Definitely sounds like he's got it - with me it varies what is the biggest problem, whether it is tics, intrusive thoughts (sounds like he has them) or OCD rituals and actions.

There are ways to control it - several different ones. If he can get counselling to help with the anxiety and stress (these makes OCD worse). I have also found hypnotherapy to be helpful when it's been very bad. However now due to Tourettes completely taking over my life, I have started medication (aripiprazole) for it, that has transformed my life. Obviously not trying to say your son has to take medication for it, I'm just trying to list things that I have found helpful.

A "silly" little thing you can do when he struggles with intrusive thoughts, is to tell him that under no circumstance must he think of white polarbears... It can force his mind to think about polarbears, which surely isn't a very bad thought :)

Hope you find some help x

[babypup]

So from my description you think he may have OCD and Tourettes despite only having had one tic thus far Pidapie? Yes, I have heard about the connection between STREP and OCD/Tic sudden onset. However, as his Tics have been around for a few years I wasn't convinced this would be regarded as sudden onset? I'm sorry to hear you have struggled with both these conditions, it must be very tough.

Orangepudding, thank you also for your words. All the activity at school I think is quite overwhelming for him, yes.

[Clobbered]

How is he coping at school at the moment? As it's so close to the end of term, would he be better off at home for the last few days, if you can manage it?

[babypup]

Hi Clobbered. So far he seems OK at school. This is the weird thing. But when he comes home he describes many intrusive thoughts that plague him during the day. At present the school have not flagged anything. It seems to be something he saves up then unloads onto me of an evening or during weekends. Bedtime is the worst. Not sure if this points to anything or means anything, or if I have just jinxed it and the phone will ring any minute and his teacher will be on the line. x

[orangepudding]

Its really not unusual for children to hold it together at school and let it go at home. I would have a word with the teacher to tell them what's going on at home.

[Tirfarthoin]

DS, also 6, has had some tics for a number of years now too and following a lot of internet research (and a GP who just raised an eyebrow and suggested that unless the school think there is a problem he doesn't think there is one either) I have come to the conclusion that he has Benign Movement Steriotypies and some sensory processing issues. DS also has some interesting thought processes though I'm actually quite jealous that your DS tells you what he is thinking as its like drawing blood from a stone with DS. For a while he believed that he was in an X Box game being controlled by a boy in China - this meant that when the boy pressed X (for e.g) DS had to jump, the result was some wild and unexpected movements! For us the these phases with DS do eventually evolve and we move on to his next fixation.

So, based on my experience I think that your starting point may well be with the school as IME the GP will want to know what they think first.

[Pidapie]

Oh sorry, I didn't mean to say he's definitely got Tourettes, but for me it started very mildly with 1 tic, and then got progressively worse. It'd be worth keeping in mind I think. I also keep it in when at work etc, and then it all comes out when I come home. About the PANDAS thing, I wouldn't know enough about it to be able to give you much of an opinion about it - only read about it this morning. But I will be looking more into it, figure there is nothing to lose for having a test done, if there is at all a chance it could be linked :) Good luck!

[Antimobiles]

OP, so sorry to hear what you're going through. yes it's awful, even more very difficult to discuss with people in roll

Very similar experience to Pidapie . DS started blinking a lot aged 5yrs. The blinking eventually stooped of it own accord and we thought that was it, then came the adhd issues, then repetitive thinking, and intrusive thoughts. Ds has been diagnosed with Tourettes, ADHD and mild OCD.

I'm not saying this is what your ds has, but just pointing out the similarities. My advice would be to see your GP, and seek a a referral to CAMHs who are the overarching body that oversees these types of disorders OCD, tics etc in children. They work as a multidisciplinary team and so they would be better placed to provide a more holistic care approach.

Pls do not hesitate to PM is you have anymore questions.

[Antimobiles]

People in RL not 'roll'.

[babypup]

I'm sorry to hear about your DS Antimobiles. And I appreciate your input so much. I guess it looks like a real possibility that my DS also has tourettes and OCD then. I just thought/hoped it was possible that it may not go this far down the path. I thought maybe it was possible he has OCD and the odd tic. I guess like everything it's a spectrum, and everybody is quite unique in how they present. I have to admit I am massively worried about the future. I hoped I could possibly intervene and maybe help this, but maybe the path is already mapped out for him. Antimobiles and Pidapie, may I ask over what period of time these symptoms all developed please? My DS has had one isolated TIC on and off for 2.5 years, and is now showing signs of OCD x

[Antimobiles]

Babypup you are very kind. It's scary isn't ? I didn't accept ds1 had Tourette's till about 2yrs later. I fact I didn't get him diagnosed, it was too awful to believe, having no experience of it. DS2has been diagnosed. DS1 started blinking around the age of 7yrs, ds2 aged 5. Then it disappeared. I thought, 'great! Put that all behind us". Then one day when Ds1 was about 7 and half, he started grimacing. Several other tics followed in quick succession, one would go on for months, disappear, only to be replaced with something else. At one point he had 5 different tics all going at once. Then from the age of 10, I started noticing he wasn't doing some tics anymore, up until now (14yrs) he has no tics so they can just grow out of it.

When ds2 started blinking, and had no further tics we thought we had got off lightly, but then developed what I now understand as 'co mobidities' of Tourettes, the 'Tripatite condition', tics, adhd, ocd. He is now 11yrs. He suffers by more from the adhd and ocd with anxiety, phobias. This year has been particularly tough.

From my research they save the tics usually peak in early teens, whilst some say by age 10, certainly was the case with ds1. It's the OCD part and ADHD that is the greatest worry.

The constant worry is as you said, about the future? Will he grow and have a normal independent life? Hold down a job? Be worry /anxiety free?

[Tirfarthoin]

Try this article for information on differentiating tics in children

[babypup]

Antimobiles thank you. It's so good to communicate with somebody that not only understands the patterns and behaviors, but gets the constant worry about the future. I almost feel a sense of mourning at the moment, I want my son back and feel so helpless. He has only had one tic for 2.5 years now, but it comes and goes and we go 6 months with nothing then boom, it;s back for a week then goes again. Almost like he was growing out it. I had feared tourettes previously, but had talked myself down from that due to the lack of variation in his tic patterns. I knew about the comorbidity with OCD, so when that raised its head a few weeks ago I feel like that must be that then! He must have OCD and tourettes, it's like all my fears have come true and I have gone way too far down the road with it in my head probably. I love your story about DS1, to think he has come through all that and simply outgrown it is hugely encouraging, and must help you when you worry about DS2? I understand why DS2s comorbid issues are more problematic than the tics....in the last few weeks all I can think is how I would take a good dose of blinking over all these obsessions. Its destroying the whole houses ability to function. Bed times are absolutely awful! xx

[lljkk]

imho, don't leap to conclusions until you get expert opinion.

fwiw, some friends had a long chat one day about all the weird ticks their sons had had for yrs. They never sought medical help, their sons outgrew it all, eventually. I listened quietly.

As it happens, we have a paediatric neurologist on the family... I told him about this conversation. He said he thought tics should be checked but it was also true that they were almost always benign and not permanent. It sounds to me like your son's invasive thoughts are the main problem he has right now. He's not encouraging himself to think that way as a form of attention seeking, is he?

[Antimobiles]

It's like you can never completely rest, because you don't know what tomorrow morning will present? Hand washing, darker thoughts? It a continuous roller coaster, and family don't understand. I was told I was imagining it all, when I mentioned the 'blinking' to family, they simply looked at me and said, 'so, everyone blinks'. Eventually I stopped discussing it with them. Yes, bed times are scary, because that's when ds wants to "offload" all his thoughts. I just want to reach into his head and remove whatever is wrong.

[Antimobiles]

Like I said, pls approach your GP and get a CAMHs referral. That is always a good starting point, but it's nice to speak to other people who are going through very similar circumstances.

[babypup]

Thank you lljkk. I appreciate your perspective. Yes, the invasive thoughts are the main issue. It became very bad during a period of change in the family, and is heavily linked to bedtime which he always challenged. He thinks of any reason not to go to sleep, headaches, a scab on his foot etc. The intrusive thoughts and obsessions are new though, but I have wondered if they have helped him serve a purpose at bedtime or if this is what triggered it x

[lemondust]

I have limited experience but it's another 'grew out of it'.

DS1 had a series of tics from age 5 or so. Shoulder shrugging, blinking, gulping.... Each was around for a few months then seemed to slowly disappear. But it was always replaced by another one. It did start to become disruptive at school as one of his teachers would get cross with the shoulder shrugging one.

He also had a pattern at bedtime. I always had to look out the window and close drawers, wardrobes etc.. He also had a special sequence of things he had to say before I left the room.

Generally he is a lovely, happy boy with loads of friends but he is also naturally anxious. Things like sleepovers are a no go.. But now at the age of 11 he tics have largely gone. He still likes me to check his room but some nights forgets. He still says he phrase but as it involves saying how much he loves me - we both smile about it. I would definitely say in his case it is getting better. I think he will always be a worrier but I hope I can guide him through that.

Sorry your son has become worse recently but try not to think it's a downward spiral. This could be a bad spell and as things settle at home so may he. Best of luck x

[Antimobiles]

Lemondust I'm so happy to hear your DS is getting better.

[babypup]

Thank you all so much for sharing and taking the time to respond. It honestly means so much to me. Bedtime tonight took 2 hours and was very distressing. It started with every reason he could think of to shout out (which can be typical behavior I know), then progressed to crying, frequent toilet trips and then having to shout out eh had checked everything again. I feel so exhausted and am about to do the microwave pasta pot at 10pm. I too agree about wanting to reach into his head and take whatever is in there out. I am trying to be positive, I have to be I guess. He is the most handsome, bright, quirky wee chap and I feel blessed to have him. You just want them happy, the tics I could handle, but these thoughts and emotional anxieties seem to make him so sad.....urgh, it hurts in the pit of my stomach! xx

[IMurderedStampyLongnose]

Aww OP,I am afraid I have nothing to add,but I just wanted to say you sound like such a lovely mum,and your little lad sounds great.I'm sure he can't go far wrong in life if you just continue to love him like you seem to. for you.

[Waitingforsherlock]

Hi. Have a look at the 'What to do if'.... books by Dawn Heubner, (easily googled). They have some good CBT based ideas. I would def suggest a trip to the GP too as you need to know what you are dealing with.

IME this type of behaviour is much worse at night when the child in question needs to offload all their fears in order to be able to get to sleep. When stressed my dd has all sorts of OCD type behaviours but has not been diagnosed with OCD. The intrusive thoughts and near compulsion to share them is familiar too. Try to keep your own feelings in check about the content of the thoughts and reassure your dc that we all get those types of thoughts sometimes. So distressing for both of you. Best of luck.

[babypup]

Thank you everybody. Your comments and advise are really wonderful. I have an appointment tomorrow with a child therapist in Edinburgh (private as a CAMHS referral takes so long and I feel I want to intervene/get advice more quickly) The initial appointment is just for me, to describe the scenario and gain understanding of her experience with OCD and how she might approach things. If I leave feeling confident, I will take the wee man in for a session of 'Theraplay' so she can get a feel for whats going on from his perspective. I would much rather be seeing CAMHS but it can take 20 weeks up here :( xx

[Pidapie]

Not read the whole thread now (too sleepy) but saw you asked me a question so will reply anyway. Many, many children have tics during their childhood, that disappear when they get older. It is very normal. So I would definitely speak to a specialist, and hope it goes away. However it is often paired with OCD, so it could be a likely thing. But for some people it is not a problem - I know someone who's only tic is blinking a lot. It doesn't bother him or anyone around him in the slightest. He never developed any other tic (he's in his late 30s now).

For me personally, I thiink I had 3 different tics from age 9-16. It varied which one was the "main" one, and they came and went, though most of the time they were there. Hormones make tics worse, so teenage years might be worse - though they were not worse for me. After around 16 I got more tics, not tic'ing more often, just a wider variety. Then I got pregnant and it absolutely exploded with tics, and after my son was born I could no longer cope, and felt awful with it. I got medication, and it is now under control, and I have my life back. Thankfully you do not need to worry about this, since he's a boy. Which is such a good thing, I promise you. Pregnancy hormones and Tourettes is not a good combination.

OCD comes in various shapes and forms, it can be a huge spectrum, and it can vary from day to day. For me, I have 1 of 3 as the "main" problem, and then it changes every now and then (could be months or years between each time it changes). At the moment intrusive thoughts is the main problem, other times the rest of the OCD, or the tics. This might be the case for your son, but would be impossible to know at this early stage. There are things that can help, and both CBT and hypnotherapy has helped me deal with the intrusive thoughts in the past. I currently haven't got the funds for private therapy, so will have to deal with it on my own, but I now have a better skill set to cope. I would be careful calling it hypnotherapy with a child though, as they might not understand that it's a deep state of relaxation, as opposed to thinking you're a chicken on a stage. But it could be worth looking in to, if you have the money for it. I went to a lady in Essex that specialises in OCD, had 12 sessions and came out free from intrusive thoughts. The thoughts didn't come back for several years, so for me it was worth the money.

Sorry this is a wall of text, I just want to help you :)

As a short term solution - could listening to book readings help him go to sleep? You can find many books read on to cd's, my sister used to listen to them to go to sleep when she was younger.

Sending strength too