12 year old with OCD - Help Needed

[Guest Deb]

Hi Ian.

Like Pam said, things are at least moving. It infuriates me to think that you are still having to challenge the attitudes of staff with regard to Cora's behaviour.

I'm so glad that Cora appears to have settled at least a little, hopefully the amount of medication she has been given will be decreased as soon as possible. Fingers crossed that you are on the right road now and that everyday brings some relief for you all.

Thats a hell of a strong family you have, I wish you all the best.

Deb

[Guest ross78]

.HI, I AM A 26 YEAROLD MALE,MY NAME IS ROSS,I AM A SUFFERER OF OCD,DIFFERENT TO YOUR DAUGHTERS,BUT I HAVE A HUGE UNDERSTANDING OF THE ILLNESS.FIRSTLY YOU WILL GO ROUND IN CIRCLES WITH YOUR GP,THEY ARE CARING BUT NO EXPERT IN THIS FIELD,PLUS THEY DON'T HAVE THE ILLNESS OR EXPERIENCE IT'S NASTIES.IVE BEEN THERE.

YOUR DAUGHTER,NEEDS TO TRY CBT,ALONG WITH MEDICATION(MUST BE DISCUSSED WITH GP),TO GET A GRIP OF THE OCD.THE OCD WILL PLAY ON HER FEARS,LIKE ANY SUFFERER.

REMEMBER,OCD IS VERY HARD ON RELATIONSHIPS.ESPECIALLY PARENTS.IF YOU WANT ADVISE I COULD DIRECT YOU.I AM A STRAIGHT TALKER AND KNOWLEDGEABLE.I DON'T WANT NHS IGNORANCE AND POOR SERVICE.DRIVING YOU AROUND IN CIRCLES.AGAIN IVE BEEN THERE.

i can provide a number for you if you would like to talk to me

Take care Ross x

be strong

[Guest holtwood]

Thanks for the replies, and thanks for the message Ross.

We have always been aware that there would be a degree of mishandling and misunderstanding within the official care channels, however at the moment (and indeed for the last 5 weeks) Cora has been out of control. There isnt any question of taking her away and beginning some CBT (either private or self administered) - Cora as we knew her for the moment has gone, and we have someone who spends all her time and energy kicking, punching, biting and spitting on her parents and friends.

We are now told that Cora's immediate care will be at oakwood in Sheffield, that they are happy (for now) to help her, and that the application for one of the secure specialist units never went ahead. Cora is still on massive medication (HaloPeridol, Diazapan, Zopiclone and setraline) which i guess keeps some sort of lid on her behaviour while her anxieties are hopefully reduced. We have forwarded a list of Cora's observed rituals to the staff, since on the whole Cora manages to avoid the situations that she associates with the rituals - eg she has yet to sleep in her bed, preferring to make a bed on the floor or sleep in a chair. I guess that some of the staff can still see everything she does as purely behaviourial and antagonostic, but these people do not know that Cora has been a fine, well-adjusted and well-boundaried girl for 12 years. We also typed out a list of possible 'signs' of this happening over the summer, slight changes in her behaviour that we regarded at the time as insignificent, but can now obviously be seen as a sign she has been suffering (and keeping it hidden) for a few months.

Cora is confronting the rituals and is happy to talk about the problems they cause, but hasnt as yet confessed to the nature of her obsessive and worrying thoughts, which i suppose remains a barrier to any progress. Cora seems also to have hatched her own plan to beat this, referring to a point over Christmas where she deliberately denied herself the completion of a ritual and says that what was 'supposed to happen' didnt happen, so now she can relate to this incident as a reference point. She wont say what was supposed to happen though...

Some of the staff seem interested in looking for a 'trigger' event either in early childhood or the recent past, and we are helping them in this regard even though we have read that searching for such triggers is fairly pointless and offers little help.

We visited last night but she had been in an angry mood, and had been attention-seeking with an outburst of violence. The PANDAS possibility remains open, and the consultant there is trying to link up with the Maudsley as to how to proceed (Cora has not yet agreed to a swab or blood test, and we are not sure if the strep antibodies relent of their own accord over time?). Certainly her sudden and intense switch in behaviour, her regression to early developmental stages (tantrums, attention seeking, persistant impossible demands) and other aspects (hoarding food) seem to fit the PANDAS profile.

[Guest tangoblu]

Dear Ian,

I can't imagine how frustrating and stressful your lives must be right now

You might be interested in joining this on-line group for PANDAS: PANDAS_Support@yahoogroups.com - there are several people with a great deal of information and knowledge on PANDAS.

The strep does stay around in the body after an infection - our son has had high levels of strep regardless of whether he has had a recent infection (since early childhood) - the Maudsley were able to do the specific tests required to check for PANDAS.

We got a referral to the Maudsley so that we could investigate the PANDAS - as it turned out Dr Heyman pointed out that they do not do anything particularly different - other than prescribe antibiotics - but they treat the OCD in the same way.

Some of the staff seem interested in looking for a 'trigger' event either in early childhood or the recent past

We went through this process and the therapist also tried to find a trigger - as parents we try to find some reason why this should be happening to our child - but let me refer you to a post I made AFTER having been to the Maudsley which might help: and in particular this comment made by Dr Heyman:

(http://ocduk.org/forums/index.php?showtopic=887&hl=Maudsley)

They were very pleased with the progress he has made so far and confirmed that he did have OCD and then Dr Heyman made some very important points to us all:

1. Nothing that has happened to him in the past, or that he has done or that we have done is the cause of OCD - he was just unlucky! My father has mild OCD and therefore it is probably genetic (obvious, I know but really good to hear!)

2. Dr Heyman re-itterated that our son (and anyone with OCD) is never likely to do anything bad - i.e. that the bad thoughts he has are not something he is likely to actually to. (Again something we knew but it was good for our son to hear it from an expert!)

3. They agreed that his ASO levels are and have been consistently high and asked him if he would be prepared to have another blood test after the session so that they could look into any other problems he might have physically (which he reluctantly agreed to do!) - plus have a throat swab to check for STREP. All of these tests were the main reason we wanted to be referred to the Maudsley as they are not tests that are possible usually.

I hope this helps.

Hugs

Pam

[Guest holtwood]

Hello again.

Things aren't going well at the moment. Cora did the thoat swab and we await the results, but i guess a blood test is needed to detect the antibodies?

We are hoping it is PANDAS, really hoping. Cora has had 2 days of violence at the unit. Like she did when we tried to look after her at home. I'm worried about what the next step will be - we fear that they will try and move her to the care of social services and a young offenders unit. Is there anything, legal or otherwise, we can do to fight this. We think Cora needs medical care.

The unit she is at is a therapeutic community based model for adolescents, but she isnt doing well and is getting worse. She is still making impossible demands to the staff, and also impossible demands to us when we are allowed our rare visits. The setraline isnt working yet, but it is still early. But we fear they will try and move her out. She claims they aren;t helping her with her OCD, that they send her to her room, and she gets scared. But we have tried to help her at home, staying here, at her grandads, and with a neighbour, and the end result is always the same - total anxiety and violence (very agressive violence and threats to kill).

Cora still denies she has any worries. She makes reference to her OCD, and to being scared a lot of the time, but when we asked her about her rituals she says she just has to do them for no reason. This fear of opening up, and her constant resorting to violence, manipulating and making impossible demands, makes us worry that taking her out of the unit and trying some private therapy would be impossible.

I'm sorry if i'm going over old ground. But i can see only a few weeks away Cora being in a young offenders unit, with minimal medical care and just total 'security' from making people a victim of her agression. Any ideas from anyone???

[Guest tangoblu]

Dear Ian

You must be feeling helpless at the moment - but you do need to take each day as it comes and really you must start to take care your yourself - this is so important as the strain will take it's toll one way or another.

It is very difficult to detach yourself from your daughters angst and struggle but perhaps you could spend a day concentrating on the rest of the family.

I know that this is a very difficult thing for you to do right now but it is important that you tep back and detach yourself to some degree (if you can).

My gut instinct says that you should push to get her seem by someone who specialises in OCD - for two reasons - one for your benefit so that you feel confident that your daughter is getting the right care, and secondly for your daughter's sake.

I know that London is not local to you but would suggest that you communicate with the OCD centre at the Maudsley for support if nothing else.

I just wish there was something more practical I could do to help.

Sending you lots of strength a big hug

Pam

[Guest Deb]

Hi Ian,

I guess if I was in your position I'd be searching through the mental health act to find out what I could.

I'm assuming that everyone involved in Cora's care is going to have to work within these "guidelines" so I'd want to know about Cora's rights and the rights of parents/carers.

For the life of me I can't understand how putting Cora in a young offenders unit is going to help. I can understand that it will contain her violent outbursts but it appears that only her behaviour is being addressed by this method when she clearly needs medical care. You must be at your wits end now.

Did you get any advice from the Maudsley in London?

Deb

[Guest Deb]

Hi Ian,

I had a look around the web and came up with a few numbers and sites that may be useful to you.

Youngminds Parents Information Service Tel:- 0800 018 2138

"This is a free and confidential helpline providing information and advice for adults with concerns about the mental health of a child or young person."

www.youngminds.org.uk

Mindinfoline Tel:- 0845 7660163

"offers callers help on a range of mental health issues"

www.mind.org.uk

Patients association Tel:- 0845 6084455

"provides information and advice on patients rights and access to health services."

www.patients-association.com

I thought perhaps you may be able to get some valuable advice and support from these organizations. Hopefully they will have the answers to any questions or concerns you have right now.

Hope it's of some use to you, still got my finges crossed for you all.

Best wishes

Deb