Daughter with OCD

[pleasehelpme2017]

Hi

My 13 year old daughter has had OCD symptoms since last Autumn (and this is the third time in her life that it has happened - once when she was about 5, then when she was 10, but on both those occasions she "got better" much more quickly than this time, it is now August and nothing has really changed apart from the fact that she is "managing" her symptoms better iyswim).

Her symptoms all center around hygiene - extremely long showers (though she has managed to curb them a bit), she uses almost one bottle of shampoo per shower, extreme toilet paper usage, lots of clean toilet paper in the bin, she often wants clothes that have hardly been washed to go in the machine, no one is really allowed in her bedroom, no one is allowed touch her, she does not sit on the sofa, she has become more withdrawn and spends all her time watching sitcoms, she has lost touch with a very close group of friends from her primary school, her hands used to be cracked and bleeding but she is managing those better as well, though she does wash her hands very carefully and for a long time.

Additionally, at school she has had to drop out of PE for the time being as she was refusing to take part. She hates anything with an element of performance to it - she also hates music and drama, and has been very uncooperative in the music lessons. She was offered the chance not to do music either for the time being, but did not take it, preferring to stay in class but not taking part . She is clever and would do very well at the core subjects, but is not reaching her potential. Teachers say that she sits and listens but talks very little (as in re. the subject, asking and answering questions) in class. She tells me that she does all her homework in the library when the others are doing PE, but I am not sure that this is true, and I did have an email from the Maths teacher saying that she is not achieving what she is capable of, and saying that she had had a long time to do a particular piece of work but had not done it. When I asked her about this she said it wasn't true and that she is doing a lot. I think she gets very embarrassed about stuff and then says things which are not strictly true. Anyway, it is not that I am worried about her academic achievement while all the OCD stuff is going on - she has just finished Year 8 so she still has time to settle into what she really likes and hopefully work hard.

Her head of year also told me that she spends break times walking around and around the school building - following a particular circuit again and again, but that she is smiling more than she used to and is friendly with some of the kids in her year.

We got a referral to our local CAMHS through the school as she refused to come to the GP with me, however they discharged her after meeting her once as she said that she is fine and that she does not want to talk about anything. They said that given that the treatment used is CBT, the patient has to actively want to participate, and that she can't be forced to come.

So we/I are left not knowing what to do. I wrote to the Tavistock in London but they said that if our CAMHS had discharged her, they would not be able to take her on, as they operate parallel services. They suggested that I contact the Maudsley who have a dedicated OCD department which I will, but what difference will anything make if dd refuses to acknowledge what is going on or talk about it?

It is very painful to watch her living the shrunken life she is living. At times she is relaxed and happy, but she is often also angry, rude and unreasonable about stuff. And very inflexible. She wanted me to order a particular book for her which I did. I don't remember her saying that the book had to be ordered and not bought in a bookshop but she must have. Anyway, the order was then cancelled by the website, so today, as I was near a big bookshop, I bought the book for her (also thinking that it would be a good change from all the sitcoms she is watching). I brought the book home and she was shouting at me about how she hadn't wanted me to buy it but to order it. That she is going to give me the money for it and then I have to order it. I said no, the copy I brought home is brand new, and that in any case, if I order a copy, it will also come form a bookshop.

So I guess my questions are, if you have or have had OCD, what helped/helps you? How can I help my daughter?

My other question to anyone who might know is regarding autism. Some of the ways in which my daughter reacts to things sometimes make me think that she may be on the so called autistic. Are there links between OCD and autism? I was reading about this and the article suggested that OCD relating to anxiety is a separate issue, whereas obessissive autistic traits are different. But it wouldn't only be the OCD which makes me think that she may have autistic traits.

My H and I are on the brink of divorce and there is complete silence between us that has been going on for months. I am hoping that once the process has been got through (god knows how long this will take or how difficult H may try to make it), dd will feel better without that tension (even if unspoken) in the air. But I think that I am relying on this thought too much, and that tension or no tension, she would probably still be exhibiting the same symptoms.

She is lovely and H and I love her very much.

How can I love her in a way that will make her feel better?If you have had or have OCD, what kind of behaviour from other people helps?

I hope I haven't offended anyone with any of the above.

[pleasehelpme2017]

on the so called autistic spectrum

[pookyandponky]

Hi. I am sorry you are going through this. It's very hard. I'm a teacher and have seen similar before.
If you are in the U.K. I would suggest contacting the Cardinal Clinic. It's private but in my experience much more helpful than CAHMS.
Most local councils have a group for supposrting parents in your situation.
I hope that you and your daughter get the help that you need soon.

[OnMyShoulders]

I'm sorry, that sounds very difficult for you all.

I have OCD. My earliest childhood memories are of OCD behaviours. I'm not sure what to suggest re supporting your DD going forward, but personally, I really hated anyone drawing attention to it. Even now, very few people in my life even know I have OCD and I go out of my way to conceal the behaviours from those who do, even my DH. Any kind of lighthearted joke, reference to it or attempts to hurry me along etc cause me massive anxiety. My behaviours have changed throughout my life by I don't believe the OCD will ever go. It is also worse if I'm stressed/worried, so if you can, let her be. My DH sometimes gets frustrated with me, but no one with OCD does it to annoy anyone.

[Dappledsunlight]

Hi OP, I sympathise with your situation and am very sorry to hear about what you are all going through. I hope you get the help you need for your daughter. I do not have experience of OCD but my daughter has anxiety issues and recent conversation with CAMHS has suggested possible autistic traits which has really got me thinking. The CAMHS worker suggested GP route to ask about getting a possible diagnosis. This was suggested as anti depressants do not seem to work, which suggested another diagnosis was at the root. You may need to think about how she was as a young child, ie did she demonstrate such traits then or are they linked to anxiety around puberty for example. Good luck as I know such situations can be so hard to deal with emotionally.

[Pigletpoglet]

Hi there, my daughter is autistic (diagnosed aged 9), and has had OCD symptoms in the past. There is now some research about undiagnosed autism in girls. Diagnosis rates are 1 girl for every 4 boys - autism presents quite differently in girls and isn't as easy to spot. Undiagnosed autistic girls are at much higher risk of mental health issues as teenagers - including anxiety, depression, OCD and eating disorders.
It's probably worth doing some reading around autism in girls, to see if anything sounds familiar. We were incredibly lucky with the diagnosis process - very knowledgeable psychologist, perceptive speech and language therapist etc. The most useful thing I did was to write a referral 'letter' that I took with me to the GP in the first instance, and sent on to the paediatrician and the psychologist. I wrote examples to illustrate lots of autistic traits that I felt were apparent in my daughter. This made sure that I didn't miss anything, and wasn't fumbling for examples in appointments.
Here's a couple of lists that you might find useful as starting points:
taniaannmarshall.wordpress.com/2013/06/22/first-signs-of-asperger-syndrome-in-young-girls-pre-school/ [about pre-schoolers, but an awful lot was still applicable to my 9 year old!]
everydayaspie.wordpress.com/2016/05/02/females-with-aspergers-syndrome-checklist-by-samantha-craft/ [a very detailed list - she says to look for 75-80% ticked off, but I would say probably far less than this would be cause for concern]

Oh, and my daughter's OCD has been completely absent since her diagnosis...

[GrandDesespoir]

Hi, pleasehelpme. I had similar symptoms at a similar age (and still do, to some extent). My parents did not know how to deal with them, and ridiculed me (not out of unkindness, but just incompetence, I think). I really don't know why it started, but I recognise a lot of the things you describe - not wanting to be touched, not sitting on the sofa, etc. There is a feeling of everything being contaminated, and at the root of it all is, I think, a need to control. Obviously your daughter's feelings and experiences are not identical to mine, but being given control over my environment would have helped enormously. If I was forced to "contaminate" myself, I would simply find a way round it - for example if I was not offered a clean towel which noone else had used, I would simply not dry myself. That may explain the very dry skin which I used to suffer from too.

Please understand that I'm writing this from personal experience, not from any medical or psychiatric training, but I think your daughter needs to feel "safe" to be (what she considers to be) clean. That means having the means to do so - such as her own towel and enough time in the bathroom - and not to be made fun of if she doesn't want to touch door handles / light switches, etc. If she is like me, she will only exert more energy into doing these things secretly if they are drawn attention to in a negative way. You can also help by making her feel clean at home - so don't touch things after using the loo without washing your hands, otherwise she won't want to touch them. Don't force her to be touched, but if she feels safe she may touch you. Above all, don't shame her.

My symptoms are much better now, but this probably has a lot to do with the control I now have over my environment, as an adult. I know what is "clean" and that no one will have sullied anything.

I hope that helps. I could probably say more if you have any other questions. Will she talk to you about the issue? The anger you mention is very closely connected to anxiety which is of course closely connected to OCD. She may have been upset about the book because it could have been touched by lots of people in the bookshop, and that is why she wanted you to order a "clean" copy.

Oh, one more thing. I never feared that something bad would happen if I touched something "dirty" - I would simply feel contaminated until I washed my hands. There was no rationalizing this feeling away, but some therapy may well have helped me.

[imjessie]

My sister had OCD from age 10/11. She has never been cured but is considerably better than she was . She is not at all on the spectrum . It was triggered by one event in her puberty .

[imjessie]

Blimey maple , that is hard for you if your dh doesn't get it . I guess I was lucky that we grew up with lots of money and no one was checking the water bill etc . My sister was always showering and washing . She used to ask me if she was clean literally 9 million times a day . It was awful 😞

[Stripyhoglets]

Similar experiences in past. Camhs actually worked with us as parents to help my child as child won't engage directly with camhs. It's helped a bit. You have to refuse the rituals as doing them makes the compulsions stronger, or refuse to do things like buy the book from a certain place etc. It's tough though.

[Notmybuilderdotcom]

Hi I have OCD which China started in my teens. It has got better over the years but came back with a vengeance about 5 years ago.

The only thing that has and is working is cbt and exposure response prevention. Basically getting 'contaminated' and sitting with the anxiety till it passes - and it really does get less and less each time but is incredibly hard and emotional to begin with.

My therapist said that anxiety in most people is caused by a change in responsibility (mine started just before gcse exams) - which then caused you to try to control other things in your life, almost like displaced or subconscious worry - could it be your daughters triggers have been around starting schools or something ?

I think your daughter will be embarrassed about the condition hence not wanting to engage about it and being angry - she'll know it's not normal behaviour but her anxiety will have her in such a grip she won't be able to do anything else. I can't recommend cbt highly enough, even if you could get her to just one session it might be a start.

[TheWeeWitch]

I have suffered from severe post natal OCD following the birth of both of my babies. I'm just feeling like I'm coming out of it now that DS2 is almost 1 year old. I can relate to many of the behaviours you describe. I was excessively washing my clothes and the baby's clothes, washing my hands many times a day, I couldn't bear to sit on the sofa or touch the floor and, tragically, I often couldn't bear to have wonderful grubby funny DS1 touching me unless he had a bath and clean clothes on . I had to keep the bedroom and the bed and the baby's cot clean at all times - I needed that clean safe space to retreat to when it became overwhelming.

I can say that the single thing that helped me the most was feeling that both my health visitor and my lovely mummy were on my side. OH too, to a certain extent, but he mainly stepped in to be there for DS1 and to keep the household running for all of us. They didn't exactly validate my behaviour, but they were incredibly supportive of my "needs" (obsessions) and let me know that if I needed my safe clean space, and if that was were I needed to be sometimes, then it was fine. They were instrumental in gently encouraging me to get out and about and this is what brought me back to reality and back into myself.

So, I know it's different for your daughter, because mine is clearly hormone/ baby related, but I feel that one of the best things you can do is to be supportive but realistic. Encouraging her to discuss her fears with you, allowing her non-judgmental space to tell you why she needs to be clean and what she imagines the germs will do to her may help her to work through the feelings. When I talk about my behaviours I know that they are ridiculous! It doesn't mean I can help it, but the talking does open me up to the possibility of doing things differently

[pleasehelpme2017]

Thank you all so much for your helpful and kind posts. I will respond in more detail tomorrow as I am too tired now, but thanks again .

[Thefutureisbright2017]

Piglet may have something. My first though was that the OCD is just a symptom of ASD. She shiws other signs of autism too you are describing. CAHMS can be pretty poor spotting it too when concentrating on the behaviours. Look into getting an ADOS assessment.

[kateandme]

the beahviours can seem very autistic.very ritualised very one thinking.almost transe like in some beahviours.ocd is awful.the behaviour are symtoms of her thoughts.
keep trying to get her to talk.
in her head whether she says she is ok or not she wont be.she will be petrified but cant tell you as she at this moment just.cant.stop.
but she can it takes one moment one person to help her step away from that tap and an incredible amount of will power to sit and wait,wait out the panic.it will rush and feel like a train hitting her telling her to over and over do her rituals.but it takes that moment a while later when nothing bad has happened for her to believe possibly....thoughts are not facts.
in her mind washing could be to save you.
it could be as big is a certain time in the shower stop you dying that day.
if she touches the certain route it will stop her dad leaving or getting cancer! it can be that big the thoughts surrounding these beahviours.so for someone to stop can just seem impossible.
she literally might feel the world on her shoulders.
once inbedded though the harder they become to step back from so don't give up trying
ask her if she can explain why.what does she feel in her body when she does or doesn't do it.does it last.does it work.
tell her you want to keep her safe and you don't want to change her just want to help keep her safe.
that you don't pretend to understand this but you want to help her be free from anything that might feel hurtful or scary.
that no thought is silly
that no one will judge her
that you all have thoughts you all have fears so perhaps we can talk it through together.
do you have any irrational fears.perhaps share them with her.let her no they can be taught to pass.
like clouds in the sky thoughts can be taught to pass.becasue
THOUGHTS ARE NOT FACTS they are the mind telling us storys.they turn into emotions they scare our body and self into acting.but you can be help.with time.and support.

[wannabestressfree]

@MapleLeafRag are you in the uk? Look At watersure tariff if so. Please don't let your husband do that to her- it's cruel. Buy a job lot :)

[MapleLeafRag]

Thanks - its not the amount of money and I bought a 9-pack last night.

I'm going to ask for my earlier post to be removed (as its too identifying), but I will keep reading this thread.

[user1499590110]

OP I was almost identical to your daughter at her age. i'm 30s now and can see what i went through in a different way.

i remember doing nearly all those things you list, and more. it was a horrible time in my life, and your phrase 'living a shrunken life' nearly brought tears to my eyes. im not expert on mental health, and actually, although i went to CBT sessions in my early twenties, (at my own instigation), i never followed through with them as the therapist told me things i already knew and i didnt find it helpful. that may not be the case with your daughter though, and maybe that sort of support would help her.

as basic as this will sound, and i caveat it by saying it is only my experience of OCD and how i learnt to recover - it really came down to loving myself better (get the sick bucket!! :) ) it's a term i dislike, but in this instance it really rang true for me. all those things that your daughter is doing, she will not enjoy doing and will feel very trapped and exhausted. the book incident - i bet every penny that she feels terrible about snapping at you about it, but she probably didnt want the book 'intercepted' and therefore touched by anyone, and whilst your comment that the book would come from a book store anyway is likely true, that doesnt factor in to your daughter's thinking because she probably knows her worries are irrational but has to live by these horrible, life constraining rules that in her mind she feels bound by.

obviously i do not know how i would react at 13 had someone tried to teach me to love myself better, and maybe it was something i could only learn as an adult, but i would give this a go at least. and by that i dont mean spoiling her excessively or letting her get away with things a 13 year old shouldnt because she had OCD, but i mean starting to instil in her a feeling that day to day, she should give herself some care - painting nails, favourite dinner, little things like that. one thing that would have been hugely helpful for me would have been to have watched my mum or dad show these traits - it wasnt until being at university and later on in working life i noticed that people put fun and enjoyment of life first MOST of the time. obviously there are exceptions! but my parents, although they had money and we did nice things, they were often very anxious about things. im not saying that you are like that at all, but simply sharing my experience that perhaps if you emphasise self care with you, it will be something your daughter will learn to copy. today, touch wood (!) i do not suffer much at all with OCD. but i have really really suffered in the past and remember so much the things you describe in your post.

you sound like a very understanding mother - my mum didnt really have the same patience, or, if i interpret it correctly as an adult, didnt really understand what i was going through and 'just wanted me to be happy.' so i had very little support with it, barely any actually.

i dont know if any of the above helps, but your post resonated with me a lot so here are my thoughts (a bit rushed, so apologies for any glaring spelling errors!)

[pleasehelpme2017]

I wanted to say thanks again for everyone's messages. Apologies for not responding individually to all the points raised but I am taking them all in.

[TheWeeWitch]

to you and your daughter OP x

[EddyF]

I am really sorry you are going through this. I could have written the exact post about my 18 year old brother, incl the autistic traits. There was a period that the OCD symptoms were so bad, we were pained and stressed to the core. My brother would spend hours upon hours doing obsessive things. Example, one day he stood absolutely still in the landing from arriving from school around 5.30pm to around 8.30am the next morning. My mother was in tears all night. She would disturb my brother by telling him she's calling an ambulance. He would then become hysterical and tell her she's the reason why it's taking so long and has to start again and that if she made the call, he would never trust her again.

I cannot tell you the stress and fear we all were in, esp my mother. She thought she had failed him (difficult relationship with our narcissistic father)

This was about 4 months ago with OCD being in the grip of my brother for nearly a year. We could not see a way out. He went from A+ GCSE results to failing every single AS level at college (U's)

Where we are now: Things have improved so much. Still a long road ahead but from where he was, a good improvement. CBT via CAMH ( they saw him pretty quick after Mum's pleading). He did not corporate that great in the beginning (and even says it didn't help) but it did!

I don't have much advice on how to get through day to day with dealing with somebody with OCD. It is absolutely horrible and I would not wish it on my worst enermy. I wrote on here because I wanted you to know that with good quality CBTwith preventive exposure, there is a chance.

Some sufferers of OCD grow out of it but for most, they need the additional support of CBT.

My brother was discharged from CAHMS at 18 and they wanted to refer him to Medsley (spl) to continue his treatment. He refused. Saud he felt better. Many rows with mum. BUT he actually is a lot better but there is the constant fear of it returning full blown. He still has it but nowhere near the nightmare we went as a family a yea

[EddyF]

A year/few months ago.

Sorry for the long text but I wanted you to know it can get better. Your post sent a shiver down me because it just took me back. You feel hopless and worried every single day.

I havdnt read this thread ( never thought I would say that!) But in case it hasn't been mentioned, the OCD forum is very good for information from people who have OCD.

Also the book: Break Free From OCD - Overcoming Obsessive Compulsive Disorder with CBT by Dr Fiona Challacombe, Dr Victoria Bream Oldfield and Proffessor Paul Salkovskis.

[kateandme]

eddyf your post sent me to emotional mess lol. I'm so so glad your borther is finding things easier.
you cant force them your right but somehow its getting them through the door nudging (hard :) ) to help is essential.just to talk it through with someone who can put lines in the squiggly mess of thoughts. but its that point of being able to trust they can keep you safe or trust that you can stop.
id say always encourage to keep going or if you spot the triggers/symtoms again just kindly go to him.let him no your there always and does he think he needs help feeling safe again with a bit more therapy.
I no it must have been so hard to see what you did.its clenches my memorys too,you got me right in the gut! but it can change and wow its beautiful isn't it.

[MapleLeafRag]

DH doesn't get it at all and has really humiliated DD about it today. It has escalated in that now DD doesn't want to use the toilet at school, but has this urge to pee in any case, and she barely drinks anything the evening before school, or at breakfast.

DH refused to let her leave the dining table without drinking down a glass of drink - both times there was a stand off - DD gave in eventually and the rushed off to wash her hands. The second time, she was crying when MIL skyped him and he held the screen in front of DD's face so MIL could see her crying, then called her a baby. Cruel.
I feel like a rabbit in the headlights - I want to tell him what a bastard he's being, but I can't bring myself - as I think he's really angry with me (ironically for seeking medical help for DD).

[Lily2007]

That sounds like ocd with a fear of germs to me. Don't think any of it is autism, obsessions in autism are quite different and don't cause distress. Obviously you need experts to diagnose. A lot of the lessons she's avoiding may well be fear of germs to, in PE there's a lot of sharing, the book will be as you've touched it I would guess or other people touch in a bookshop.

CBT is recommended route but does need her to engage. Not drinking enough is quite dangerous.

As a temporary stop gap maybe a moisturizing hand gel to take to school if she would drink, use toilets, do sports but otherwise not. General rule is to stop behaviours one by one easiest to hardest. Moisturizing soap and creams help with the skin. Stress makes it worse.