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 :( :(

That's great you have an appointment set up already. Do still get on the waiting list for CAMHS so your son has access to more professionals.

Thanks Pidapie for your detailed message. It's really great to get an understanding of somebody's experiences. I really appreciate you taking the time to do that and hope you continue to stay well.

Orangepudding - yes, my plan is to attend the private appointment tomorrow, but I also have a GP appointment in the morning and will ask to be put on the CAMHS waiting list to allow me to access the wider team.

I just went to his nativity play and my heart just broke the whole time, he sat there blinking away, but despite that, he just had such a sad look on his face, as though he can't find reasons to be happy and escape his own thoughts. I want my baby back x

I hope you find something that can help him soon, good luck x

OP , the nativity play rally highlights it doesn't it! I remeber this well. There are a range options for treatment out there so don't over fret about it, although I know it's easier said than done. You are taking all the right actions. And please do post again and let us know how you are both getting on.

God what a night :( I tried to positively challenge his thought process on why he needed the toothpaste to be the right way up in the holder. He screamed, cried and went into a complete rage. He then kept shouting out random things and looking for my verbal response to be exactly right every 2 minutes. I tried ignoring his calls and he screamed at the top of his lungs and said he was so angry he would punch me. He then kept circling from his bed, to the toilet for a wee, then checking his wardrobe doors ten times over and kept shouting 'I don't know why I am doing this mummy'. I am exhausted. The warp speed progression of this has astonished me. 2 weeks ago I had a wee boy who liked his bed tucked in a certain way and his wardrobe doors checked, then he would nod off to sleep. Last week I noticed he was less content with these routines and needed to check. This week I have a child in visible distress with rage, consistent instructive thoughts and who is pacing repeating behaviours and terrified. Does OCD happen this quickly. I can't imagine what next week will bring given the speed of downward spiral thus far. I have a little boy who seems like he might be about to fall off the edge hear. Everything terrifies him or gives him anxiety, even a cartoon. He blurts it thoughts all day long and seems visibly depressed. What on earth. I can't understand this. He had a terrible stomach bug one week before this started, and today he has a sore throat and looking at it it seems all white and infected. No clue if such things can trigger sudden worsening of symptoms. He has some small bedtime preferences a few weeks ago, now he is a kid that seems like he needs immediate help. I am terribly confused and concerned this evening. My little boy seems to be lost somewhere and I can't get him back xx

OP take him to A and E, it sounds like he really needs medication ASAP. So sorry to hear what he's going through. Please remember there is medication for this, your little boy is not lost, he's going through a difficult time but he'll come through this.

Thank you for replying. He fell asleep after a very strained few hours. I went up to see his sleepin soundly and just broke down looking at him. He looked so normal and peaceful. His bedroom door was not right against the wall so he must have moved it to try and prove to himself or me he could do it. My heart just breaks. I don't know if this is normal onset of OCD or different. He definitely had developed some OCD tendencies before, but this degree of downward spiral seems off to me? He has aggression, is clearly scared and just seems to be going from one thought to the next, worrying about worrying almost. Do you think medication is required? I just assumed this was what OCD was and he would do CBT xx

Op glad to hear he's now in bed. CBT is usually recommended as treatment however in circumstances where it's so bad and unmanageable sometimes medication is recommended. The problem is your ds is not receiving or received any medical assessment or treatment yet, hence why I said to go to A and E. Explain what is going on, and they should be able to assess him and give him medication until your appointments come up.
Is there anyone else with you supporting you, e.g parents? It's very hard I know.

Just thought to add, i need to correct what I said previously, it's not definite that A and E will give medication, I suppose it will be based on their assessment, but they are your surest bet at the moment.

I'm sorry to hear your son is going through such a tough time I had tics and OCD as a child, from the age of 9 and still have some OCD traits and tics as an adult. One thing I was going to mention, has your son had any big changes in his life recently, at home or at school? My tics and OCD started when my parents separated. I remember having to have my ornaments on my bedroom side in a certain order, I used to scream if someone sat on my bed and creased my covers, I used to do certain rituals, check things an equal amount of times, wish every night that my family were never going to do and repeat phrases a certain amount of times in my head, it was truly exhausting at times and I used to have dark thoughts/nightmares often, to the point I would end up talking to my dad until midnight about how I felt, otherwise I couldn't sleep, I was constantly tired and exhausted. However, in my late teens everything got better, I do still have tics and certain OCD rituals, but things are a lot better. I do think it's important to seek help for children who are struggling with these conditions, it drove me crazy, but I had no medical intervention/assessment and I'm fine now, I think I learnt certain coping strategies, which helped. My son has tics and has done since he was two, they only seem to happen during screen time, otherwise they're not noticeable, if he's stressed/anxious they can become quite noticeable though, but they seem to come and go in different severities, he doesn't show any signs of OCD yet. There is help out there now though, such as CBT and other routes you can follow, speaking to his school nurse/family doctor will help you with the right course of action. Remember tics/OCD do tend to get better and he may like a big majority get better in time. Sorry for the rambling!

Ah OP your situation sounds tough, feel for you & your boy. OCD onset is usually more gradual but not impossible for it to happen more quickly, especially in times of acute stress or physical ill health. PANDAS hypothesis (which remains contentious & unproven) suggests sudden onset of problems can be linked to strep throat infection. Definitely ask the GP to check for any infection and medicate this as appropriate. Id be surprised if you find anyone prepared to medicate a 6 year old with psychiatric meds. NICE recommend talking therapy as first line as you suggest, although your son will need CBT to be adapted appropriately to his developmental stage. As others have said, CAMHS will have specialist knowledge in this area and MAY view your referral as a high priority due to your DS age and severity of symptoms.
Lastly, support him (as it sounds like you have) around intrusive thoughts. If he tries not to have them they will bounce back more strongly (see previous post re polar bear, the more we try not to think about something, the more it is on our mind) so encourage him to let them just come & go (much easier said than done I know).

Best of luck OP

Hi Ladies.
Yes, 3 weeks ago dad started working away, but he has seen him regularly and seems to understand. So nothing too severe as such but appreciate this could feel severe to him. I talked to him earlier in the evening and asked if he was sad or upset about anything that might have caused the bad thoughts. He said no, but it could be an underlying issue. I don't have support in the evenings no. And that's the hardest time, although mornings are swiftly becoming equally stressful as he wants to discuss events the night prior when he gets up. It feels pretty relentless and I can't seem to snap him out of thoughts. It's constant all day every day, distraction doesn't work. I'm walking on eggshells as everything gets related to a bad thought or a worry of some sort. It's very doom and gloom for a wee 6 year old, it's such a shame. He's the most handsome, wonderful, funny kid...that's turned into a worry fuelled, depressed and aggressive emotional wreck in a few weeks. I question if I'm coping as well as I could because the behaviour scares me so much x

Wired that strep has been mentioned twice on this thread and his throat is bright red and covered in white puss. I have heard of pandas but understood it be 'unproven'. I disregarded it, as parents of course we want to be the ones that can cure tics with a solid course of Amoxicillin, but didn't view it as a possible reality so never explored it. It just seems so strange the sudden worsening and the throat link. But I do believe there could also be other factors at play. I trained in psychology (never went into practise) so am naturally cautious of theories and tend to base myself firmly in reality. Maybe I am missing something with this though? Xx

OP, how has he been today?

Really feeling for you and your DS babypup,
I hope your appointment went well today.
A couple of things, your DS is clearly unwell with his sore throat, exhausted too I imagine by what is happening to him and Christmas. Could you keep him off school until next term to try and get a safe routine established. It does sound as if he is holding himself together for school and falling apart later with that effort.
Re drugs, my DD 16 recently had Gabapentine as a sedative at night to help her with a sleep disorder, there were some side effects but it resolved her sleep problems, something like that would certainly give respite for your DS on a short term basis so don't think it would have to be anti psychotic meds. Interestingly my DH had a bad accident when DD was 11 and that resulted in 3 months of panic and intrusive thoughts. DD used to repeat the words Mangos or Pineapples to get scary images out of her head, she came up with the idea herself - non offensive nice fruit, like the white polar bears I guess.
You have my sympathys, it is so scary when you can't help your child.

Hi girls,
Thanks for checking in. He was very anxious on weakening today. He seems to find random things 'freaky' to use his word. Almost like everything is scary now. I'm assuming it's a by product of severe over anxiety about his thought processes. Like he is now over aka lysine everything and worrying about worrying. For example, 'mummy turn the radio off that songs freaky, mummy look I just drew something freaky, that bird tweeting is freaky'. This was all before 8am. He went to school and enjoyed his Xmas party, but was bombarding his childminder about bad thoughts and things being freaky before and after school. When I collected him the thoughts and fears started pouring out as usual.

I went to the GP and told him my concerns about the short-term, how can I get this stabilised and under control. He was less than helpful. Said if he was going to push for an urgent referral to CAHMS he would need to see him for himself. I have to go tomorrow at 5.30 with DS. But as I explained to said GP, you can't expect to anything in a 5 minute appointment! So frustrating.

I also attended a private appointment with a Psychotherapist and we spent a full hour detailing the history, development, but most importantly the frightening and severe development we were witnessing. She agreed that whilst CBT would be useful medium-long term, right now it sounded like he needed assessment and quicker intervention possibly in the form of medication. She is not qualified and said there was a Clinical Psychologist at the clinic that she would speak to in hope of him seeing us, but she couldn't guarantee how quickly this would be. Basically, she acknowledged we needed quicker help.

So, tomorrow I need to take him to the GP and hope he somehow displays enough to 'convince him' as parents we are justified in our request to have an urgent CAMHS referral. What a joke. The only other avenue is the hope that the private appointment may be quicker. Very frustrating to see a child in need and nobody willing to intervene. He is only 6 years old and this just seems very wrong.

Right now his Dad is in his room with him chatting, hoping to keep him calm and distracted and better able to fall asleep. Knowing my boy he will keep talking to midnight so it could be a very long night ahead!

I want to say thank you again for all who have listened and contributed thus far, it really helps me to feel less alone and get my thoughts out....it helps me more right now than you will ever know xx

Gosh, sorry about the typos! I got a new iPhone today and it's hard to work and had weird settings

It is a start Babypup.
How about trying a music or white noise CD to help distract at bed time as well as talking.

And you could ask the GP tomorrow for a private referral.
You can then book it yourself the same day, just get the email/fax number of the consultant and send it back to the GP so they can send the referal through straight after you have booked. This works in Cheshire.

Babypup thanks for the update, been thinking about you and your little boy. I'm glad to hear you've been to se the doctor, less impressed with the seemingly lack lustre response you got but I suppose he does need to see DS before he can refer.

Lets keep figures crossed and hope the private route is quicker for the intervention he needs now.

Pls continue to keep us posted, we're all wishing you well AND you can continue to bounce ideas or your frustrations on here.

Hi there i just read all your posts and i have tears in my eyes, as very close to home. I have ocd and three boys and my biggest fear is that i may have passed it on to them. So far there is nothing too worrying in their behaviour and i just wanted to tell you that there is hope for a normal life once yiu get this under control. My ocd was much worse as a child and teen and is very much bought on by stress, but i largely manage pretty well with it all and am more or less symptom free now as an adut, apart from during periods of stress. I really hope yiu can get through this crisis soon and begin to show him coping strategies for the future.

Thank you all so much. I will keep you updated. Tonight took 2 hours for him to sleep but was calmer. He keeps shouting out looking for a 'just right' response....we have to say the word he wants. Very tough. But he did settle with less fuss and anxiety compared to last night (terrible compared to normal but at least a less stressful eve). No toilet trips and circling to check doors. Jut the shouting out and getting angry if we didn't answer the way we wanted. He got tonnes of attention and explanation though so I'm hoping that doesn't make it worse, but my feeling is that eliminating some anxiety can't be a bad start. I will let you know how we get on with the GP tomorrow at 5.30 and if I hear back from the private clinic. You are all wonderful, thank you xx

I'm really concerned that you mentioned above that your DS has a red pus-y throat, plus what sounds like a rapid onset of the tic and OCD type symptoms. Is your son having his throat issue treated? Have you discussed with the GP that this might be related to the onset of the tics and OCD symptoms?
I'm a child mental health practitioner in CAMHS and what your son is experiencing is very concerning.
Your GP does need to see your son in order to be able to refer him to CAMHS but do make sure that his throat is being attended to, and if your GP won't consider whether there is a link between it and the tics / OCD type symptoms then if the situation continues as severely as it is I would consider going to A&E to be honest. CAMHS is the right organisation in relation to the tics / OCD type symptoms but wouldn't be able to offer an opinion on whether the onset is related to the throat issue - a medical Dr with the right knowledge preferably a Paediatric Dr needs to assess that and your son may need medical treatment before psychiatric treatment commences.

In relation to supporting your son in the meantime, just do whatever you need to do to help him cope but avoid trying any CBT techniques or trying to challenge his thoughts or behaviours - he is too unwell for that and it would just cause him severe distress. You need specialist help from that.

Good luck

There is an interesting paragraph about PANDAS in the article I linked above. It is an article aimed at GPs so it may be worth printing it and bringing it with you to the apt tomorrow.
Good luck.

Sealsong....thank you for your note. What you have mentioned is so useful, even in terms of managing short-term and not trying CBT or challenging the behaviour. I had tried this but it just didn't work....it just gave him more to worry about and think about. That is great advice based on experience, thank you so much!
I know, the throat issue does worry me. DS's tics have been around since he was 4, very slight OCD behaviours since August....I just assumed in that basis that the PANDAS link couldn't hold as he had history. His tics haven't worsened with the OCD onset, just remained the same. The severe worsening just seems very odd though I agree. He has a lot of somatic issues such as headache and stomach ache, and his dramatic fears and aggression are new. But maybe the fear is cause he's scared of his thoughts and the aggression is when he can't complete his riautals? He had a terrible stomach infection a week prior to this OCD rampage, and from reading I understand that strep can sometimes attack in other forms? The sore red throat I only noticed this week, so assumed again it couldnt be related to onset of symptoms of OCD as they started raging 2 weeks ago. Am I discounting this possible link too easily based on timings and history? I just assumed it hit normal kids with no history of tics of mild OCD, and always after a sore throat. I'm worried I am not being vigilant enough now. Oh I wish we could get to see somebody in the know. The fear of what's happening toy child is made worse by trying to battle to get somebody to help me and take it seriously xx