My gorgeous dd has really really bad OCD.

[gracepaley]

We are on the waiting list for therapy and reading up about it like loons, but we are feeling really bleak about it. It's such a fucking pointless, ridiculous evolutionary blip, and it's turning her into a ghost of herself. Anyone got any cheery stories about recovery to bolster me? Normally more resolute, but just tonight feeling crap about it.

sue - your poor mother - you have really been through it, am so sorry

in case anyone is interested - I read this ages ago - very interesting book the boy who couldn't stop washing

Hello! Hope your day is good GP.

Just back from Tescos with DS - my word does he worry! Hiding upstairs as dh tries to get ds to do his homework.

Re the AD's

I would just like to make sure that the gp wants to put your dd on AD's rather than AP's.

i personally would not agree with either for a child but i know how desperate things can get and you just want something to help them.
we found that the AP's prescribed to my mother for her OCD did infact make the symptoms 3 x worse. just wanted to offer a word of warning.

Keep pushing your local health authority, We get on to ours every fortnight and we are finally now getting close to my mother staying at the Maudsley as an inpatient.

your dd deserves a quality of life and you as her parent deserve support too.

thankyou for the book tip margaret, i will try to find it and read it.

Sue. I am very and even more at reading about your mother. It seems she has had really inappropriate treatment that has made her much worse. I really feel for you and your entire family. It sounds like an incredibly bleak situation. Has she never been eligible for CBT or ERP? And who thought that anti-psychotics were appropriate for OCD? That seems insane.

Sue I hope you can get some help for you and your daughter from the Maudsley, they are meant to have fantastic OCD people there. I hope that whoever is treating your mother realises that you both need/deserve help . HAs noone offered you or her CBT? We have only been living with this for a few months and it has been the most stressful thing I have had to deal with in my life, which has been colourful enough before this. My heart goes out to you, and I wish you strength, and relief.

I am still thinking about the anti ds. The psychiatrist used a swimming analogy - that they were like armbands to held dd learn to swim , but that she would still have to learn to swim - (CBT/ERP).

Take care.
x

The psychiatrist's analogy is very good and how I see it, Grace (I have never actually taken ADs but know a bit about it through psychologist dh).

email me your address

Hi Grace,

Thanks for your message. i just wanted to let you know that i understand how hard it is to support family members with an illness that has no logic. (not that i'm at all logical either!)

I only wanted to offer a cautionary word regarding the medication as many of the SSRI's also have had horrendous side effects for my mother. I know everyone is different and what works for some does not work for others but as my mother or one of us has been on almost every type of AD, AP, or Benzo i feel i am almost an expert on them.

Paroxetine (seroxat) sent my mother into deeper depression (but works well for a friend)

Clomipramine (not recommended for kids anyway) sent my mum almost comatosed.

Sertraline (lustralor zoloft) my mum was rushed to A&E last month with Hyponatremia (extreme sodium deficiency) caused by this medication and if left 24hr longer would have been fatal.

Fluoxetine (prozac) worked on my DP & i used for Dep after miscarriage but didnt work on any family members OCD or my PND after DD.

Aripiprazole (abilify) sedated mother to extreme

olanzapine (zyprexa) as above

Stelazine ( cant remember what this 1 did as was long time ago, but know it didnt work)

Diazepam, temazepam, Lorazepam all sedation effects

Amitriptyline (worked for PND after DD but i became allergic to it. It didnt work for my mother)

There are many more that she has been tried on but i wont go on with the list.
She has been offered CBT but they gave up after 3 Sessions!!!!!! she saw a private psychologist who advised that she would need 2 years intensive therapy, but 1) we cant afford that & 2) neither can the local trust. so she is patched up and sent home to us until she can bear it no longer and then pill pops or laterly (with us having removed every type of bloody pill in her house) she tried to hang herself.

it is the anger that she has been brushed to the side. The anger that my sister and i suffered not only mums OCD but her severe depression and also lost out on our childhood as we looked after her. The fact that if the medical profession cant get an 'instant result' then you're written off.

we have all had counselling at some point but both my sister and i know what our problems are and we deal with them . I personally feel there is not much point raking back over the past 30 years or so, and try to live each day as it comes and not dwell on events that happened in the past that i cannot change.

By the way, myself, my sister and DP are now all free from AD's and my mother now only has Lorazepam and for the first time in twentyfive years i can actually see a little of my mother's personallity coming back. she still has the OCD and doesnt eat much but the drinking is better and dare i say it (quietly) she hasnt said that she is afraid of messing the bed for 2 days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

some of her other obsessions are still there but those are manageable.

There is a little chink of light ahead at last.

although i always wait for the next tsunami to hit (we outgrew tidal waves years ago!)

thinking of you
sue x

me again,

i was talking to my sister today about our various degrees of OCD and she finally admitted that she had kept much of hers hidden.

i knew for example about her bedtime rituals and her CSP but it was only today that i learnt about the
1, only going up the stairs on one side
2, having to repeat phrases
3, counting her steps

So grace i just wanted to tell you that although she still has CSP (mildly) and although she cannot just buy 1 of anything and although i MUST check on my DD if i wake up in the night and i must be the last person out of the house, so i can check a couple of plugs (only tv & washing machine now!!!!!)
we both feel that we have come a long way. Sometimes if the control of fear is taken out of your hands it gradually then become less traumatic if you dont do them.

i dont however suggest that you try this with your daughter at the moment, but some of the problems may (hopefully) disappear with age.

sue

Will do Berolina. x x

Sue - thick emoticon - what is CSP?

They want to try Sertraline for DD. It's the only one recommended for kids. Since her good day on Thurs she has had two days of hell, and we are all utterly exhausted, so it is looking increasingly likely that we will give it a go, along with the CBT.

I am that they gave up on your mum after three sessions only, wtf?

It sounds SO horrible, and that she and all of you have had such attenuated lives as a result. Yes I know what you mean about the counselling thing, but CBT doesn't rake up the past does it. It just restructures thinking patterns.

Really hoping the Maudsley can work their magic. Take care.

Hi grace
To decide what medications to use, i would suggest you go to
emc.medicines.org.uk (used by the medical profession)
this brings up a page where you can enter the drugs name in the quick search space.
it will then bring up a choice.
the PIL is the patient information leaflet which is included in all medication.
the SPC is the summary of product characteristics (basically all the proper info that the drug companies have to provide to get the drug licensed.
Sertraline is registered under two names lustral and sertraline.
look them both up by clicking on the spc name. please read the special warnings, contraindications and side effects as well as the rest.

you can do this with any type of medication.
this will give you a much better idea about the drug and you will then be able to make up your own mind after looking at the info yourself.

if you do decide to go ahead, which i would understand as we have tried everytype with mum, make sure that she is monitored very carefully.

CSP is compulsive skin picking (a form of self harm)

have you been on www.ocdaction.org.uk
there are some sections that might help/be interesting

we were never offered CBT, but i think sis & i are over the worst of ours.

we should hopefully hear within the nxt month re the Maudsley for mum so fingers crossed.

sue

Hello!

How are things Grace.?

Its hard - ds is being good today (he is watching me type this!)

Thanks Sue. The psychiatrist is meeting me next week to chat through all the implications of putting her on Sertraline. I think we will probably try it.

I still think you should be eligible for some CBT, or at least some SUPPORT, for yourself, your sister, and your dd. I can't believe you are expected to deal on your own. I wish I could do something.

Hello Mrs JD - dd has been up and down; she has been stuck in saying "sorry sorry sorry" for hours at a time, but last night, dh sat with her for 2 hours - partly he was trying to avoid some v dull neighbours who had come round - and talked to her about how much he loves her and how proud we both are of her. Something seems to have gone in, and today she is not saying the sorrys so much. But it's a v fragile thing.

We start with the private therapist on Tuesday. I can't wait.

Oh yeh, and I forgot to say, that dd got 95/100 in her recorder exam (obviously taken before Fiona got hold of music, but she still had OCD when she took it.) I am SOOOOOOOOOOOOOOOO proud of her.

I bet you are so pleased with the recorder exam.

Mum actually came to my house today for just over an hour today which was nice. Hard work, but nice, i think she only came to my house 2x last year.

when she is at home she only lives in next road along!!!!!!! so it was kinda a big deal.

DD had 23 worries last night. she wrote them down so she could go to sleep(mostly about her or someone dying) but they were only worries and she hasnt turned them into an obsession so i guess i'm lucky there. Am trying to teach her that she cant control everything and that all she can do is hope and pray things dont happen, but that those type of events are out of our hands. She's that bit older now so they dont seem to be turning into quite such a big deal to her.

i hope tuesday's private session and your meeting with the psychiatrist go well. Good luck.

Quick update. Went to see private cbt psychologist today. She was GREAT. No offensive knitwear, really sensitive with B, really intelligent. Marvellous. She is coming TO THE HOUSE on Thursday, presumably to sticky beak around and check out squalor/stress levels, but I think that's great.

Psychiatrist tomorrow. Still torn.

Sue brilliant about your mum coming over and I really feel for your daughter with her 23 worries. Bless her. Take care.

Oh Grace! What a fab achievement with the exam, and what a huge relief to have a good psychologist on side.

Is the torn-ness about the ADs? You know, I think I might try it, lowest dose appropriate/possible, reiewing regularly. I know it seems a big and horrid thing, but I'm in agreement with the 'armband' analogy here.

I am sorry, I owe you an email! I will spill all, I promise. (It is nothing greatly dramatic).

(And thank you for your address. Should be a surprise on its way soon )

Hello Grace - good luck with the squalor/stress levels tomorrow! Fantastic exam results.

DS went to school in a jumper and his winter coat / trousers etc today. He can not 'deal' with the change - he likes to do what he is used to - he did look funny running in next to kids with shorts and polo shirts - ho hum!!! Going to try to smile about or I will cry and not stop!

I had OCD as a child - teeny occurrences now. Was bleak then but the actual OCD isn't now - I just obsess about using moisturiser. Sometimes it comes back a little when I am stressed. However, because it wasn'tdealt with well/at all when I was young, other stuff has taken its place now and I have difficulty when I feel out of control of things as an adult.

Was very afraid of my parents dying back then, all quite irrational. I'm not a therapist but from my own pov I think if someone could have taught me strategies for dealing with the bits of life one can't control the OCD would have lessened and I would not be doing the things I do today like clinging onto dead relationships and starving myself when things go tits up in any area of my life.

HTH

divided self. Could you not get kinda retrospective help now? Have become obsessed (of course) with people getting help when they need it.

Mrs JD, yes, tell me about it. Have JUST dropped dd at school (1115) as we spent 2 hours stressing about socks this morning. Absolutely resolutely refused to wear summer dress. Just about managed to get her not to wear coat. Don't cry! Unless it helps. I don't know if I have shared this with you but it currently helps me if I pretend I am in a primetime drama starring Tamsin Outhwaite. (Because as well as OCD am in deep marital and emotional shite). THis means that occasionally (V occasionally) I am allowed to stand in the garden and weep in a telegenic, prepossessing way (HA HA HA HA).

Berolina hello hello hello cannot wait to read the big REVEAL in the email. Thank you for your continuing support.
xx

Thanks GP, I have tried odds and ends of therapy but nothing is really hitting the spot just yet. The stuff I do feels safer than the harder routes of change. I accept the logic but effecting change is sooo hard!

Plus,with three children - only two of whom are in full time school, the other at nursery,it is very hard to find time to keep going to appointments. I am a lone parent.

Ironically, perhaps, I do behaviour management consultancy with families and I have quite a tool kit for how to deal with control/loss of control reactions behaviourally but it is very difficult to use this on oneself or on my daughter who Ithink shows OCD tendencies, or rather that they may come.

I think, professionally and personally, one needs to try and offer 'doses' of control to the child,such as limited choices. Add to this honesty and clear, CRYSTAL clear boundaries on as much of daily interractions as possible and you are doing the best one can.

Yeh but have you tried CBT/ERP? SHe says, with proselytising zeal.

Seriously though do believe it is the ONLY therapy for OCD behaviours.

Understand the difficulty of sorting yourself out with 3 kids though.

Hello all!

Yes I want to be in a tv primetime drama - that might be just what I need - if I imagine I'm someone else - I might be in more control - which is something very lacking at the mo!

Thankfully ds's teacher asked why he was dressed up for winter - and says he wants to go to school tomorrow without his coat!

Its hard - thinking of you all xxxx

Hi all
Grace: glad the private therapy looks like it might be helpful. Hope the psychiatrist was of some use today and not just for scribbling notes (sorry i have a low personal opinion nowadays).

hope therapy goes well tomorrow.
p.s i know what you mean about the 'acting'

mum home for 2 nights this week (24hr carer) AND she allowed me to trim her hair. 3hrs & god knows how many "suppose it'll never grow back/i shouldnt be doing this/do you think it will all fall out? i finally finished triming an inch off all over. Thought things went well considering, although had pictured the scissors slipping a few times!!!!!. Shouldnt have felt so pleased as just before we were done she started the old "suppose i'm paralysed by this" AAHHHHHHHHHHHHHHHHHHH

dividedself: Its always easy to know what we 'should' do, just a whole different ballgame doing it. I agree about the control thing though. When things/events happen in our life that we have no control over we cling to the things that we think we can control.

i find when i am stressed that my OCD returns (did it ever go????????) Maybe i should rephrase that, when i am stressed i obsess about more things than normal.

It must be awful watching this illness destroy your children, its hard enough with mum's extreme OCD without it being a child.

Grace: can i assume you are in the stages of what i call 'Emotional battle fatigue' .

by the way DD only had 3 tiny worries last night

How are you? Just on a 'ad break' here in filming this riveting day time drama. Featuring a wild banshee - who is rapidly losing the plot. Oh no I mean glamorous mother of two, amazes those around her with her charm and patience!

Keep at it!