So this is how I'm going to remember ds's first birthday...

[moominmama86]

...by the police arriving and me having to explain that, yes, I'd called them, yes, there had been an argument, no, we're okay now, no, they really don't need to come in the house and check, no, no-one's hurt and yes, I'm sorry I've wasted their time...

I can't believe this. I just don't know how to deal with this crap anymore. My family is falling apart. I just want to run away. I don't think I can do this anymore. I need some help but I don't know where to start.

That's encouraging jimjams (about your friend). Think GP is vaguely aware of situation with consultant. May try and have a word with him. I thought you were pretty much 'locked in' to whomever you're 'lucky' enough to get but I guess a second opinion should be possible. There is also talk of referring her to Institute of Psychiatry but through therapist not NHS so expensive and need to explore other areas first! Will definitely piss off consultant.

moominmama, I'm sorry that you're going thru this. I don't really have any words of wisdom, but just wanted to offer my support. You may have tried this already, but have you contacted any support groups for carers of people with OCD? I did a quick google, and found this and this .... Apologies if you've thought of it already. Hugs to you.

maomoa - don't apologise for looking things up for me! She's actually had some therapy sessions from the woman who runs OCDAction - and thought they were useless. You can imagine how I felt after setting them all up for her! But this is what we're dealing with.

In fairness to my mum it's not really OCD she has - it's what she was first diagnosed with but it's not true OCD as such. So it is difficult to treat, and difficult for her to feel positive about a cure. She feels as if she's all alone - at least I have you lot!

Actually, moomin, I was thinking that the support group might be helpful for YOU and your dad, as her caregivers.

Must read posts properly... Thank you.

Oh, please don't even waste your energy on being embarrassed! Just thought it might help for you and your dad to get some support. Big hugs to you!

Okay, am going to try and talk to my dad and then going to bed! What a day. Just wanted to say thanks so much for all your replies. I don't know what I would do without being able to vent at you all! I am really touched, as always.

I'm really sorry you've had a rubbish day, MinM, it sounds incrediby stressful. I've just a small thing to add to the good advice here. If you can't change the consultant to a better one, is there anyway you could secretly video your mum when she's have one of her bad days, so he could see just how awful it is for everyone when she's on a downer? I so hope something comes up to help you, it can't be doing anyone any good at all.

Moomin, Jimjams is right, talk to the GP. Ask the receptionist for a double appointment so you've got plenty of time and explain everything you've told us, exactly why the current consultant is actively harming your family. There is usually more than one consultant psychiatrist in the area. Point out that you can't carry on in this manner and that if you mother doesn't get the medical care she needs urgently then either you will become ill yourself or you'll have to walk away. And stress that you have a baby to look after so you have to put him first and can't continue to care for him in this environment.

It is possible that a change of medicine might help your mother in the short to middle term; everyone's response to medicine is individual and what helps one person might harm another. It looks as if her current prescription is useless, if not dangerous. Psychiatric drugs have potentially serious side effects and these can include suicidal thoughts; in your shoes I would press for an urgent medication review. The GP may not be happy about acting without the psychiatrist which is all the more reason to insist on an urgent referral to some other consultant. The standard reference book that doctors use when prescribing is available online here: BNF It details what drugs are supposed to do what, possible side effects, potential interactions with other drugs, situations in which you should not be prescribed the drug and loads of other useful information.
HTH

The other course of action would be to write to the complaints people (there'll be a formal procedure) listing all the useless behaviour of the consultant and requesting a change.

I would try the GP first- far less stressful, but if you continue to hit a brick wall it may be a possibility.

Has she ever attempted suicide? How long has ths been going on for? And were there any triggers? Sorry lots of questions- and don't stay away from your bed to answer them- I'm just trying to understand her illness.

It occurs to me that maybe it is important to have fresh eyes lok at this (that's one of the excuses my friend used to swap consultants). If she doesn't have OCD then what does she have? OCD is extremely difficult to treat - although I think with a willing participant behvioural cognitive therapy can work well. But if she has a different condition then maybe there is a better drug or something for her.

Sorry, should have explained, if you do want to use the BNF link then just choose the BNF 47 option (the latest edition) then either search under obessive compulsive disorder or look under central nervous system in the menu on the left.

I will definitely talk to the GP and get something moving. He is a decent guy and knows my mum well but am sure he's not aware of full ramifications of situation. Medication review sounds like a good idea too.

Jimjams - no, she has never made a serious attempt but pretty much every morning tells us how she 'had all her pills in her mouth' but couldn't take them (all I can think is she must have some pretty soggy pills by now...) This whole thing has been going on for about 2.5 years although much worse in last couple of months (since I moved in )

What does she have? Thing is, we don't really know. No-one seems to really know. Her symptoms are that if she hears a repetitive sound it sticks in her head and she says it takes over. Like when you can't get a song out of your head, only to the absolute limit of your tolerance. It just goes on and on and on. So she has the sound of a clock ticking, over and over and over, or a bird sound, or the sound of ds's musical toys. Like a tap dripping, like Chinese water torture, she says. And recently she says she's getting repetitive images too. So it's OCD-related but not textbook, iyswim. And I know that probably sounds like nothing, but it's led us to this. New theory is that it's something to do with the way her brain receives sound at certain levels - but consultant won't even refer her for a brain scan

Plus, a big old hefty bout of depression.

Has she been tested for hyperaucus? Is she actually hearing real sounds? Hyperaucus is when quiet sounds are heard at very high levels. There's a good book about a girl Georgie Stehli whose autism was cured (and I mean cured- which basically is almost impossible in the case of autism) using a technique known as auditory integration therapy. Before the treatment she could hear people flushing their toilets 5 flats away. It's a very common condition in autism (which is related to OCD- my son with OCD is autistic).

Georgi's mother has written two books "The sound of a miracle" and "Dancing in the Rain" (both by A. Stehli) I've read the first one- and would recommend it- it may take you in a new direction.

If you want someone to talk to about this- I would recommend Stella Waterhouse. She has written a book called "a positive approach to autism" - but goes into all the related conditions as well- including OCD. She is lovely- and has the equipment that can be used for auditory integration therapy. She's much cheaper than the other places I;ve looked into- and basically you do it at home (most other places you have to visit daily or twice daily for 2 weeks to a month).

Of course this may be off the wall and no help at all- but it may be worth looking into. I;d really recommend The sound of a miracle- it's an easily avaiable (and moving) book - and explains the technique.

Oh if you ever want to just have a chat with Stella contact me offlist and I'll can let you have her phone number (or its in the back of her book).

Another thing you could try - I've just browsed Stella's section on OCD- is to get urine analysed at the autism research unit . Please don't think I've gone mad with that suggestion- I don't think your mum has autism.

The reason I've suggested it is that some people with OCD have metabolic similarities to some people with autism. Sometimes their lives can be transformed with a gluten and or casein free diet. The Autism Research Unit (ARU) tests urine to see whether the diet is likely to help. No diagnosis is needed- the test cost 50 or 60 pounds and resualts are back within a couple of weeks usually. No GP referral is needed. When my son went gluten free (age 2) within 2 days he stopped obsessively counting stairs. 2 weeks later I slipped up- and gave him some guten (a teaspoon- in some cakes I'd made-wrong baking powder) I didn't realise for a couple of days and he started counting stairs again. Stopped the offending food and he's never counted stairs again.

Other foods that had a bad effect on him included peanuts (headbagning lunatic on those- permanent bruises on his forehead- although I've never heard of anyone being affected by peanuts). But ther common problem foods are MSG and yeast extract.

The symptoms you describe are exactly the sorts of things that are thought to happen when people have excess opioids in their blood (ie need to go on a gluten and or casein free diet).

Paul Shattock who runs the unit is lovely and I'm sure he would be happy to talk to you (or answer an email) about your mum- and whether or not he thinks it is worht testing. They've done a lot of work on adults with gulf war syndrome etc as well- and I think some on OCD. They do not confine themselevs t autism. May be worth a punt. My son changed dramatically on the diet.

Jimjams - you are such a star. I am so grateful for all your suggestions and help.

The auditory integration therapy actually sounds like the program she is supposed to be following with her therapist. It is a series of CD that she is supposed to listen to in certain orders every day, and it was originally devised for children with behavioural or developmental difficulties. Sounds like the same sort of thing? I say supposed however, because she won't do it ('waste of time'. Worst thing is that she (I found out the other day) is telling therapist that she is doing it, and that it's not working... It is all an uphill battle, to say the least!

I am really interested in what you have said about diet. Am definitely going to email the research unit. She did originally have problems with numbers in her head '1,2,3,4' - not counting things as such but it must be related in some way. It is compulsive behaviour, at least.

Oh, it's like swimming through treacle sometimes! Thank you again, you do not know how much your input means to me. I'll keep you posted.

errant smiley!

Ah yes that's AIT- pity she's not doing it!

I think the diet thing may be a better bet- all you need to do is persuade her to provide a sample of first urine of the day. (I have no idea how easy that would be). I don't know how much you know about autism - bust basically many people believe that it is a sensory disorder. The world cannot be interpreted properly - because weird things happen eg someone talks to you- you see the lips moving but don't hear what is said until a minute or 2 later, or quiet sounds become overhwelming, or fluorescent lights send out weird particles etc- so the child withdraws, cannot work out what the hell is going on and so can't learn language etc. Stella Waterhouse's theory is that if this develops later in life then you don't become autistic- as your brain is too developed iyswim but you can develop other related conditions eg OCD. For some people the main thing behind the weird sensory stuff is having leaky cell membranes. This can happen after illness, vaccination, or I suppose out of the blue. if you have leaky cell membrane then large particles of gluten and casein can pas through- and once in the brain act like opiates. Hence the person is effectively drugged and hence the weird things that start happening. I think its defintely worth talking to Paul Shattock- the urine test basically looks to see whether the membranes are leaky, and /or whether strange breakdown products of gluten and casein are found.

Moomin, have just caught up with this and it's had me (self indulgent cow, I know) weeping. Could you not see your Health Visitor and explain that ds is stressed (along with you!) and ask if she can get any balls rolling? Nobody should have to put up with this, especially with a new child. Keep in touch. We're all with you.

xxxx

Moomin, how long has you mum been like this? Is it a recent thing? Have you any brothers/sisters who can share the burden? I can sort of understand how your dad thought you were betraying her, and therefore why there's a stony silence, but surely he's got to address the problem too, at some point? There has just got to be someone - I can't bear the thought of you all on your own with this and your dad not talking 'cos you wanted to do something about it. How does he feel? Does he want to take it further, or is he resigned to the way she is?

More hugs
XXX

Just read your thread moominmama86. I really think the best adivce is to go back to the gp, as eddm and jimjams say. I am no expert in this, but have seen how getting someone sectioned can be a postive step to take.

Several of my close friends have been sectioned at some time. Things got too tough for their families to cope with, and in each case the friends were not taking their medication. The friends came out of the mental institution in a much better state than when they went in and were given better coping strategies and medication they were ok about sticking with.

I'm not going to pretend it was all happy and positive, but on balance, from an outsider's view, it was the only thing to do at the time.
There is no way either of my friends would have asked for help themselves - they needed to be sectioned in order to get help.

It may be that a new consultant, fresh diagnosis and treatment will work for your mum, but if not, please don't think that sectioning someone means all hope is lost. It could be the beginning of recovery.

I agree you need to keep the medics updated all the time(as suedonim suggests, can you video anything?). Definitely tell the medics loud and clear about the changed circumstances at home - you are living there, you have a child and your mental health and ability to care for your child is at risk.

My mum looked after my dad for much of my life - he had mental problems as a result of a big breakdown followed by ESP treatment in the 60's. She also looked after my grandmother who ended up with senile dementia when I was a teenager. We lived in my grandmothers house. I saw at first hand how the strain of caring for mentally ill people affected my mum. I am amazed that she carried on at all. She was lucky in that the medics were sympathetic, but it took lots of effort to get respite care and god, did she need it. My mum to come extent chose to care - she stopped trying to escape. It would have been easy to divorce my dad but she loved him. She refused offers right to the end to put my grandmother in a home. The more she did, the more the rest of the family looked on her as the carer.

She moved to my grandmother's house with me when she was in her mid 40's. At the time she and my father were not getting on. 5 years later my father moved in with us too. Somehow she took on the role of caring for everybody - she had no freedom, no life of her own. Her sense of responsiblity made her unable to leave and slowly she got used to the life she had and did not want to strike out on her own. My father died when my mum was 79 and that was the first time she had had no one to care for. I don't know why I am tellking you this, but I suppose your situation now in some ways reminds me of the one my mum was in when she first moved to my grandmothers. Sorry for rambling - hope you and your dad have made up after yesteday and help each other through this.

Moomin - hope you got to talk to your dad and that he sees that you called the police because you were frightened. What you said about death really struck a chord. Last year FIL had a breakdown following severe depression, he was suffering from paranoia too(he convinced himself he had terminal cancer and that everyone, and I mean everyone was against him) and dh said he felt like his dad had died and this man was an imposter. It was a really difficult time for all the family and we weren't living there so I can only imagine how hard it is for you.

I agree with tigermoth about sectioning. Sometimes you get to the end of the road and its the only thing left . MIL finally lost it at the psychiatrists one day and literally refused to leave until they did something to help. In the end he went voluntarily but only because MIL refused to take him home and the psych was going to section him. It was truly awful and MIL felt so guilty but she was well on the way to a breakdown too. He stayed for about 8 weeks, had ECT (?) treatment and industrial strength AD's. Now he's more manageable and getting better. I realise that you may have to get to see another consultant to get any further, and hope you can get this sorted for all your sakes.

Thinking of you.

I can't believe you guys - have just come back to check thread and seen all the new responses - thanks everyone. You are the ones getting me through at the moment. It means so much.

Dad is still not talking to me He is angry with me about calling the police and for telling him that, no matter how much I can understand his frustration and anger and desperation, I will not stand there and watch him push my mum around. She would drive Mother Theresa to the very limit but even so... I especially don't want that happening when ds is around. Part of the reason my marriage broke down is because our rows were getting very nasty, physical etc and there's no way I want ds exposed to that sort of thing again. I understand his desperation but I can't condone physical force iyswim. Aaarghh - I should be saying all this to him, shouldn't I? But he's a stubborn so-and-so and king of the silent treatment. Think he feels betrayed because I have been his support for the last few months and now he feels I've let him down too, I guess. Last night I said something along the lines of 'I've supported you through all this' and he said 'And now you're going to stop, are you?' Can't win!!

Luckymum - interesting you should say about your FIl and the terminal cancer thing - my mum is v much like that. Absolute paranoia about anything medical (and an ex-nurse to boot!) - convinced everything's terminal and incurable. If ds so much as looks at her the wrong way she swears blind he's got something fatal. A friend of hers once said mum was morbidly obsessed with illness. It's very tiring. And one of the reasons she is terrified of going into hospital is the fear of ECT - she had it about 12 years ago and it was pretty traumatic.

Sorry, am rambling again. Maybe Mumsnet should be available on the NHS - it's better than therapy Right, well this week I am going to try and make an appointment with the GP and see if we can't get something sorted out. And hopefully my dad and I will be back on speaking terms again. I'm usually such a daddy's girl!

Thank you thank you thank you (again)

Moomin - I've just seen this and wanted to say I am so sorry for the terrible strain you are under. I think the advice here is brilliant and it's definitely worth getting a second opinion (it should be possible, I know of people who have swapped NHS psychiatrists due to conflicts and lack of progress) and maybe sectioning (painful as that would be) would at least have the effect of making your mother do her exercises, and follow a program. I'm only really posting to say that my sister is currently in a psychiatric clinic for post-traumatic stress disorder which has crept up on her following some difficult family events. I have been speaking to her and it's like a different person emerging at last. We have been through several years of terrible behaviour and accusations from her, to the point where I almost broke off contact entirely, so I can only imagine what it must be like for you to be threatened like this every day. My sister finally sought help herself and the change has been radical, and I just wanted to say that there is hope, if your mother can somehow get the right kind of help, you could one day have your loving family back. Take care. (BTW I'm only using an alias to protect my sister, not because I am ashamed of her)

Good luck with seeing your GP. Do hope your father comes round to speaking to you again. I am sorry this has dragged on since Saturday - it's the last thing you need. Your father must realise that you have a child to think about, too.