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Has my daughter got OCD? Please help :(


Guest linzvonc

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Guest linzvonc

Hi...

My daughter is 6 (7 in October) and for the past year has been showing signs of anxiety....she was referred to CAMHS but they didn't think she needed any further help....she has always been a little quirky but extremely well behaved.

Recently upon picking her up from school I started to notice she would be very upset over minor things (not minor to her i know) and she has had 'confessional behaviour' for over a year.. recently this has gotten worse. She can cry over her teddies not being in the correct order in bed at bedtime, if they fall over she can get stressed, she doesn't like us changing plans last minute for example, if we are going to a park and we stop off at the shops, she has to know every detail and its obsessional. If she is having a bath she has to know if we are washing her hair or not and we can be asked this question despite answering it countless times. We also find she interrupts constantly when we are talking no matter what..we have asked and explained repeatedly not to do this as it is bad manners yet it is relentless. She interrupts to tell us the most random of things. She also seems to not be aware of things happening around her ie her younger half brother is on the autistic spectrum and we are going through diagnosis with him currently. He can have really bad meltdowns and even through all of the screaming and crying she will still walk in and repeat something over and over again to us even if we acknowledge it. Also she doesn't have many interests and when asked what she wants for christmas/birthdays she is vacant and says she isn't bothered. She will copy her older step sister and say she wants the same things for christmas without knowing what they are, just to give us an answer it would seem. She has also been seen at parties putting her hands over her ears and seemed to be in pain at concerts/plays because of the noise.. Adding to this is the handwashing. This can be intense at times. Other than that she is extremely sensitive to seams on socks and tight jeans etc.

Recently the confessional behaviour has taken over our house. I left work to care for my son and as its the school holidays my daughter is with me constantly. I seem to be the main person she 'vents/confesses' to. It starts the minute she opens her eyes and continues all the way through the day. It is things like;

'Mummy I think my hand went near my lady bits'

'Mummy I had a bad thought about cutting someones head off'

'Mummy I keep thinking I don't love you but I do'

'Mummy can I itch my nose?'

and this list is endless. I couldn't possible list them all but you get the idea. Adding to this is the handwashing. This can be intense at times.

We had a mulit agency meeting with school as we originally suspected Aspergers..but the school seemed to think this behaviour was 'attention seeking' from me as they see zero evidence of it at school. They had a handful of examples to use which were things like confessing to 'dropping her pen' and things like worried about strangers killing her following conversations with me about safety around strangers. There were photos uploaded onto the school website of my daughter covering her ears during a group exercise involving instruments. The school 'senco' observed our daughter and was 'unconcerned as she appeared completely unfazed by any noise or change in the classroom.'

Anyway, I have seen the GP repeatedly and we now have been re referred back to CAMHS & The Community Paeds. My son has speech therapy and the therapist commented on how intense and severe my daughters thoughts seemed to be.

I am absolutely lost and bewildered. I have tried reassuring her and this doesn't seem to help. I have tried talking it through but aside from it being unsustainable it doesn't seem to help matters at all. I really do not know what it could be but I am still learning about the Autistic Spectrum with my son and lots of things stand out for my daughter.....yet anxiety & OCD seem to really tick the boxes too.

I just want to help her but I don't know what to do.

Thank you in advance.

Linz

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Hi Linz, welcome to the forum.

Im sure you will appreciate no one on here is expert enough to diagnose your daughter, but she and consequently you are obviously very distressed about what is going on. There are lots of people who have the experience of school being fine and struggling at home and I hate 'attention seeking', poor little mite is obviously very upset.

Im glad you are going back to CAMHS. Do you think it might be a good idea to write a diary for a day or so, so you have something to actually show them? Its hard to recall everything when sitting down with someone. Its interesting the speech therapist picked up on a problem and I would definitely mention that as well.

I hope your appointment doesn't take too long.

There are lots of people on here who know how you feel, so do let us know how you get on.

Carol

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Hi Linz

The diary suggestion above is a good idea and one I may try myself too. I would insist on not being fobbed off by cahms. My daughter has had 3 sessions and because she has been fantastically improved for 1 week (she has anxiety and repetitive actions) they are talking of signing her off. Sorry I don't have much more advice but hope you get the help needed. X

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Guest worriedmum

Thank you for sharing your story. I agree with Carol's advice... it is so helpful to write all these things down. I typed up all my son's fears, obsessions and rituals and gave a copy to the psychiatrist. It's not unusual for a child's behaviour to manifest itself more in the home than at school. My son's OCD was far worse when he came home because that's where he could drop his guard and be himself. He was still experiencing thoughts and fears whilst at school, but would try not to display it too much there. However when the depression came they did then begin to notice and became more concerned.

Please let us know how you get on with CAMHS. Your daughter is still young and it's possible that this is a phase she's passing through, however with the things you have shared and the anxiety she's experiencing, you are right to be seeking help and support. I recognise some of the things she asks you as being what my son would say. It's heart-breaking to hear your child share such worries and questions.

I think you are doing a great job of supporting her. My son tells me that at his worst, knowing we were there for him, telling him he would get better and this would pass really helped him. He didn't think he'd ever be well and so he found it helpful to hear us reassuring him that he would and that we would do whatever it took to get the help he needed.

Please do let us know how you get on. x

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Guest Sally44

From what you have posted it sounds to me like your daughter maybe on the autistic spectrum as well. She also sounds like she has sensory issues/sensory processing disorder [covering ears, appearing deaf, tactile hypersensitivity], and maybe also a speech disorder. These are all typical of being on the autistic spectrum. So is anxiety, but it maybe that this is OCD or an Anxiety Disorder.

If you imagine that certain behaviours are like the ingredients to a salad, and it is only when you have enough of any number of traits that you get an additional diagnosis. My son was diagnosed first with an ASD, then a speech and language disorder, sensory processing disorder, dyspraxia, dyslexia, anxiety disorder and more recently OCD. So the whole bag.

As her sibling is being assessed for an ASD, and you suspect this maybe ASD too, I would push for her to be assessed by a Speech and Language Therapist for her expressive and receptive speech and social interaction/communication skills. Ask to be referred by your GP to a speech therapist that has experience of assessing children on the autistic spectrum.

The Sensory Issues need to be assessed by an Occupational Therapist with experience of assessing for sensory processing disorder.

And a Clinical Psychologist for possible ASD and OCD.

It is also common for children with an ASD to need routine and to know exactly what is going to happen and what is expected of them and that is what the continual questioning is about. For example when I go out with my son he wants to know how many shops we are going to. How many items I will be buying in the supermarket. He can get very upset at food being moved into a different area of the shop. He gets distressed at sounds [vaccum cleaner] and covers his ears. He gets upset at smells, sock seams, clothes tags, hair washing/brushing/cutting etc.

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Guest linzvonc

Thank you for your honest replies.

We are finding her behaviour so very difficult and we really don't know what to do. We are awaiting referrals to who we need to see but in the meantime the constant confessional behaviour & questioning is really hard to deal with. She appears very aware of what she is doing and at times I wonder if it is attention seeking, but then she will be told not to interrupt or mention these thoughts/actions unless they are scary or worrying her at all- and the confessions/questions of ie 'im looking at a wall- am I allowed to?''things on my feet can I walk around the house?'referring to having had shoes off around the garden. She asks the same questions constantly despite being told the answer. We just want to help her and have tried talking through every thought/action, possible outcomes and what that means, told her to write them down with and without us, explained about an ocd monster after reading through literature about Jolly & Grump, my parents have now started to see it along with friends of mine. We have tried dismissing it jovially but it HAS to be said. She has told me she isnt always worried she just has to tell us. Any ideas greatly appreciated as im starting to feel really upset by it all.

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Guest Sally44

With OCD and anxiety giving reassurance just fuels the anxiety because they are not dealing with it themselves. So with my son, if he asked me something like "are there germs on this" or "are my hands clean" I would ask him "what do you think?" or something similar. If it is the same question over and over I would say "what did I say before". So don't repeat the same answers to the same questions.

I think a thorough assessment by a speech and language therapist would give you alot of answers about her actual receptive and expressive speech and possibility of an ASD. So that could rule in/out the ASD and/or a speech and language disorder. Once that is covered you have a better idea of if it is just anxiety or something else or both.

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Guest linzvonc

Thank you. I have tried that tactic lately, asking her what she thinks and what are the possible outcomes.....she has had her stepsister here and has been rather distracted and they have lessened some what....she has gone back home today so I am preparing myself for an onslaught of confessions! Bless her it is so hard.

Just want to be able to have a conversation with her about anything! It always is interrupted. :(

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Guest linzvonc

With OCD and anxiety giving reassurance just fuels the anxiety because they are not dealing with it themselves. So with my son, if he asked me something like "are there germs on this" or "are my hands clean" I would ask him "what do you think?" or something similar. If it is the same question over and over I would say "what did I say before". So don't repeat the same answers to the same questions.

I think a thorough assessment by a speech and language therapist would give you alot of answers about her actual receptive and expressive speech and possibility of an ASD. So that could rule in/out the ASD and/or a speech and language disorder. Once that is covered you have a better idea of if it is just anxiety or something else or both

In terms of her being assessed in our area it is apparently done via camhs and the community paeds who can then make referrals to salt or whoever they deem relevant.

Thanks though!!

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Guest Sally44

This is a link to a private clinic. You can have the assessments done privately. I haven't used this clinic, but I have had private reports completed by some of the professionals that are registered with this clinic. It is just another option out there IF you find that things are taking such a long time and you want some answers quickly to start getting the ball rolling. http://integratedtreatmentservices.co.uk/

Over the last 10 years I have found it helpful to use both private/independent and NHS/LA professionals.

The difficulty you get with NHS and Local Authority professionals is that they are working to a budget. So they often do not diagnose, or if they do diagnose they don't recommend therapy and they don't make specific recommendations about support in school etc. Private professionals do because that is their job. It is also the job of NHS and LA professionals HOWEVER they are not independent as they have to find the funds to meet the provision/therapy/treatment/specialist teaching etc that they recommend.

That is very important IF your child needs a Statement of special educational needs as that document is legally binding on the LA to provide and fund everything the Statement contains. So, unfortunately, it is not in the LA or NHS interest to identify all those needs to be included in a Statement [or even for them to recommend that a child even needs a diagnosis or a Statement], if they have been given strict guidance by their departmental managers about budget restrictions.

It means that the LA and NHS are often NOT complying with governmental law ie. educational law relating to SEN and the SEN Code of Practice etc.

My son has a Statement. We are currently trying to get OCD and Behavioural Therapy and 1:1 support to be added to his statement. The LA do not want to do it because once it is in the Statement they have to fund it. Obviously we want it in because that is what a Statement and the SEN process is supposed to do ie. identify needs and quantify and specify how each of those needs are going to be met.

It sounds like you are right at the beginning of the process of seeking a diagnosis for your son, and now possibly for your daughter as well. That is very daunting, worrying and upsetting all at one time. BUT you need to know that it can take years and you could be fobbed off for so long that by the time you finally get a diagnosis or any kind of support your child could be failing badly in school, or even refusing school altogether.

For example, we began the process with my son when he was 4.5 years. He got his first diagnosis of an ASD at about 7 years old. So it took 2.5 years. Then he has had additional diagnosis after that, most recently [age 13] of OCD. So don't wait. You need to be pushing and find out how the system and process works.

Edited by Sally44
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Guest linzvonc

Hi Sally

Thank you for your invaluable information! My daughter has an appointment with CAMHS at the beginning of October and we are just trying to get the referral to the paedatrician who does diagnose. I think you are spot on about the NHS, with many individuals being honest with me along the way. However my son has had his report from our first visit stating that it is very clear he is very much on the autistic spectrum, with obsessions and rigidities...He has his formal assessment next in two weeks time. My GP says my son is pretty much diagnosed from what the report states. He has been referred to the autism speech & language so we are optimistic there. We have waited 6 months in between appointments though but think thats wise due to his age in the case it wasn't autism.

In terms of my daughter suddenly all thoughts and confessions have totally disappeared in the past few days....I can't help but wonder if its because she knows she is at school next week and its somehow having a calming effect?! (she loves school)

Thank you so very much.

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Guest Sally44

I know that there is alot of information/dialogue from professionals about how it can be harder to diagnose females on the autistic spectrum.

But if your son is on the autistic spectrum, [and current thinking is that there is some genetic link], then it would be sensible for ASD to be ruled in or out with your daughter too - especially relating to speech and language and social communication, anxiety and sensory processing disorder [as she has a number of behaviours typical of SID]. Children/adults can have SID and not be on the autistic spectrum - however most professionals and individuals on the spectrum say that everyone with an ASD will have some sensory processing issues too.

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  • 3 weeks later...

Hi Linz,

My daughter is 9 years old and the description you have given of her behaviour is so very similar to my daughter. I am frantically searching for help at the moment but not sure whether to go with it.

We have had this problem for about 11/2 years now.

My daughter would have a long winded routine of tucking the teddies in, kissing them, touching the inside of her drawer etc. If the long routine was interrupted she would start all over again. We then went to going to the toilet washing the hands thoroughly, then getting into bed, only to get out again claiming she needed the toilet and doing it all again. Eventually she would go to bed only to wake up when we came up to bed and started again!

She would also and still does although a lot less interrupt when she could clearly see we were having a conversation and with extremely random bits, almost the same as your daughter with her lady bits, and I think I have a bogey on my hands, whats that, which would be a tiny dot of something that I could barely see and not want to go near it etc etc.

She is an extremely loving and intelligent girl who to everyone else seems very normal, doing well at school with lots of friends but when I comes to the bedtime routine its like a different child.

On going to the doctor I was reluctantly given something to help her sleep as I felt a change in the routine could help. It doesn't work completely. Given the full amount she doesn't really know where she is and still fights it. A couple of spoonful were helping in the fact we had to get over the first hurdles or her new bedtime routine and she would eventually sleep and not wake up when we came up. A little rest bite for us but no solution.

The routine has now changed, to going to the toilet, using endless reams of toilet paper and spending a long time there and hand washing.

This is affecting us and her brother who basically goes to sleep normally!

We were referred to CAMHS, but have just received a letter saying that they do not feel the referral requires input from them and suggested EARLY HELP, which I disagree with.

I am not quite sure what to do, we love her to pieces but this is really taking a toll on us as a family.

I lost my sister to Cancer 31/2 years ago and she mentioned whilst shouting at me last night she wishing her Auntie was here.....god knows so do I.

Is it OCD, could it be to do with losing my sister or is it something else. If anyone can help it would be appreciated.

Many thanks

Topcat

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Topcat, welcome to the forum.

Your daughter's bedtime rituals do sound like OCD, especially when you say if she is interrupted she has to start all over again.

I live in Canada and don't really understand the UK healthcare system. Hopefully one of our other posters can give you some advice as to where to turn next.

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Who are the professionals at "Early Help" and what could they do for your daugther and the family?

If it is OCD, then it is an anxiety disorder, and so definately under CAHMS.

When I kept hitting a brick wall I got advice from PALS [Patient Liaison Service at the local hospital], they may be able to help you understand what the options are, and if you still want CAHMS to take up the referral, how to achieve that.

Does your childrens hospital have a Child Psychology Department? Could they be another option for you?

In our are Clinical Psychology and CAHMS can offer CBT. Via CAHMS it would probably be a specialist nurse. Via Clinical Psychology it is a clinical psychologist [so more qualified]. Also CAHMS tend to offer medication. Clinical Psychology don't.

We've been round the process of referrals for different things via different professionals for years. We were initially referred to the Paediatrician, who referred onto Clinical Psychology - who diagnosed an Anxiety Disorder, saw us for a few weeks and then discharged us and referred on to CAHMS. My son went onto medication for about 2 years. We received a further diagnosis of OCD. We were not offered CBT. We had no therapy or advice from any professional until I involved PALS. Now Clinical Psychologtist is going to come into my sons school and give a half day training session to all staff.

So do keep plugging away. I don't know if the system is the same or different where you are. Don't take no for an answer.

This is a link to the NHS's own Guidance on OCD. It will explain what the path way for diagnosis and treatment should be. http://www.nice.org.uk/guidance/CG31

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Thankyou for your advice Sally. I have no idea about Early Help, I was waiting for the doctor to call me back. She didn't call me back until the following day, and I missed the call so will find out more info on that later.

In despair I have tried another technique with my daughter (my own technique!). I am writing down what happens each night to try and find a pattern.

We seem to have a good night when she is trying it on but goes to bed. The following tends to go to pieces. She seems to play on my husband. He was out the other night and she was better. The following night after she read you can kind off tell somethings about to happen. The siting on the toilet starts up, washing hands, claiming her pjs were dirty etc. She wanted Daddy I said no he wasn;t feeling well (he had to stay downstairs...all work in progress). So she started screaming, hitting herself in the chest, which I had to refrain her from, kicking her legs around, hitting her legs...all this on the landing, with her brother trying to sleep. This went on for about 25 mins last night. I kept my cool and told her how well she did the other night and how pleasd we were when she went to bed. It was almost like a switch flicked. She hugged me and said sorry. Went to the toilet for the last time, did her surgical hand wash and went to bed, apologising and thanking me for helping. The house turned into a quiet house again.

The first time I did this it took 50 mins then 30, so not sure if this is early days or progress or even whether it will change again, but until I get help I will try my routine. Although I am convinced when she goes into a leg kicking frenzy she may hurt me one day but will continue anyway.

I will definitely look into the other places that you have suggested as I am not even sure its OCD now. Things keeps changing!

Many thanks

Topcat

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