DESPERATE for help

[kc73]

Hi All

I have not posted on this site for over year. I have a daughter who has been diagnosed with OCD since she was 51/2yr and now is 101/2. Most of the time it has been moderate to severe but we have had a few periods of time when she has has good few months. The last was last April-June and she was so much improved that we almost believed she might stay on an up. She went downhill gradually since June, and dramatically since October.

Summary of past treatment: CBT locally, CBT at the Maudsley, medication, and currently play therapy.

Nothing has had a significant impact on her OCD. Not even the Maudsley! After a year they stopped treatment as minimal improvement which they put down to her not being able to engage effectively with the OCD due to her age. She was 9 then. We then had a long gap of no input from CAMHS as the local therapist withdrew input after the Maudsley recommended a break from CBT. But starting last summer, she started to see a play/art therapist at CAMHS. Medication started when she was 6yr but she refused to take it. We tried drops of an SSRI med in her water but it was difficult to work out how much med she was actually taking, plus it wasn't having much effect so it was agreed for us to stop. We would like her to try medication again but she refuses to take it.

Over the past few months the serverity of her OCD has meant she has been unable to function properly on all levels. Certain areas are sometimes worse than others, but overall it includes not been able to eat properly and on occasions has not eaten all day; she takes so long completing all self-care tasks that she is late for school everyday (the school told me her attendance between Sept-Dec was something like 75%) and gets to sleep very late (11pm-1am) She doesn't have baths that often as the rituals take over and it takes so long, even she doesn't want to have to do it. At the moment she regularly spends over an hour on the toilet. Sometimes 2+h. She missing out on social activities. She is distressed everyday for hours. Screaming and crying and wanting us to get involved in rituals such as having to repeat sentences and moving things. We are very well informed about OCD and the dos and don't, so know we shouldn't do what she wants us to do, but that's in an ideal world, so in order for us to function, get through the day, we do sometimes do what she says. The tension in the house is mega. More often now we are losing our patience and shouting. Which isn't positive for anyone.

We have a younger daughter who is 8 and has started to express some v unhappy feelings about family life with her sister and OCD. So we now organising private therapy for her! We have no family life. We are unable to go out anywhere as a family without it becoming unbearable and you swear you are never going to do it again! Sometimes she self-harms but not in major way. The worst has been her sticking pins into her arm.

CAMHS are aware (or should be) how we feel our family is disintegrating. At times I think she should be admitted to inpatient care - but where to? I'm feeling like that right now. On a desperate day last week I phoned CAMHS to speak to our daughters therapist but she wasn't there. There was no one else I could talk to (they said they are not an emergency service) and their advice was for me to take her to A&E.

Does anyone know what we can do? I'm tempted to phone NHS direct (or whoever it is now). I feel bad taking her to A&E as they are so overloaded but I think I might if I could physically get her there! What can we do next? This isn't a life, for any of us. My husband and I are just about keeping our jobs down. I started part-time work last summer after a few years of being a full time mum, and it's this part-time work that is keeping me going.

HELP!

Thanks

KC x

[Guest worriedmum]

Hi KC

I do remember you posting before about your daughter. I am so very sorry things have got to this point. I can only imagine how distraught you all must be living through this day after day. And how awful it must be for your daughter to be under so much fear and experiencing so much anxiety. Everything I would suggest has already been done and she has seen some of the top experts in OCD it would seem (having been to Maudsley) and received CBT and play therapy (which I am relatively new to, as I have a friend training in it). It would seem that her age has perhaps been a barrier to engaging in CBT before now, but I do know our son was able to engage at the age of 10 1/2. He was able to fully grasp what OCD was and what he needed to do to get better. So she might be at an age where it would 'click' more. As you say, perhaps medication is an option but I don't know what you can do if she refuses to take that.

Have you ever tried 'self help' books? I know there are some out there, and they can be useful to work through at home with your child. If she would feel able to engage with you and maybe even set herself some small, achievable goals...where she felt more in control and was able to see small progress.

But if things do get desperate (as they have this week) and also if she starts to self harm, perhaps following the advice of CAMHS in going to A&E or calling NHS direct would be wise, although I say that very carefully as I do not know what is all involved and what type of process that triggers... I would imagine that CAMHS would have a better idea?? However, it would be much better for you to be able to speak to someone there who knows her situation. Would CAMHS send someone out to you to see her in her own environment? Our son's mental health nurse did all his CBT sessions in our home and we had his direct number to call in-between sessions. I would hope that your CAMHS would have something similar set up for your daughter to get help when she really needs it.

I wish there was more I could do or say to help. I am thinking of you and hope that this will soon pass. Make sure you are able to get some time out somehow. I know this must be exhausting for you all. Take care. x

[kc73]

Hiya, Thank you so much for your reply - really appreciated. When our daughter started CBT she demonstrated a very good understanding of the theory behind OCD and Anxiety. I think the therapists thought she was a mature intelligent girl, and that she would engage in the E/RP. However, she couldn't and began to express her fear of not having OCD as she feels she doesn't know what it is like not to have it. She still feels this way.

We have tried self-help books a few years ago and at times she would engage in them but not significantly.

I have written a letter to CAMHS again today (when I phone the therapist rarely phones back, but if I write a letter and attach via email they will forward it on).

As I type this she is on the toilet....she has been there since 17.45 ! (It's now 20.10). She has demanded no one comes upstairs whilst she is on the toilet, and we have tried to accommodate this for the sake of her hopefully coming down at a reasonable time for dinner. But my younger daughter was getting upset as she wanted something from upstairs so I went up and this caused her distress. Then she was demanding the kitchen door was left open (she claimed she could tell if it was open) but my husband was cooking and we told her it would remain shut. This made he even more distressed. I give up. Hubby and I have sat discussing whether when she finally comes of the toilet, whether she should be allowed her dinner or not. We have been told in the past, OCD related anxiety or not, that we should set boundaries of acceptable behaviour, such as times for meals. But if we don't allow her to eat she most likely will continue to have a meltdown and scream and cry and scream and cry! Last night she seemed to be getting ready for bed at a reasonable time....until she realised she had not gone to the toilet before cleaning her teeth. This led to 2 hours of distress as she begged for a solution to reversing the teeth cleaning, feeling utterly awful that she had broken one of her rules. When she gets like this (like many of OCD sufferers) there is no way out. It just goes on and on and you feel like you are going crazy!

It's a nightmare. As you know. This morning we woke her at 06.45. She got into school at 12.30.

I wish we could get a break.

I really do appreciate your reply.

Kc x

[Guest Bushbaby]

Hi KC

I'm so sorry to hear about your daughter being poorly again.

I know exactly what the yo-yo of being well and deteriorating rapidly is like and it is exhausting; both physically and mentally. I really feel for you. I also understand the way OCD morphs and how you have to get your head round it's cunning antics. It makes me frustrated when I get caught up in the rituals when I promised myself I wouldn't, but my daughter also tricks me into helping. It is quite sad that OCD is torture for our girls, but there is a fear of being without it. Other young people on here have expressed the same fears. To me, this indicates they are still poorly and still need control.

I used to think that discipline was essential and routine, but have learnt that my daughter can't totally control what's happening when OCD takes hold and I have tried to break up the routine, so we don't do the same things at the same time, as she falls into I perform this ritual at tea time, ask these checking questions when mum is in her bedroom. I try to mix it up when she starts, although this can make her cross too. Instead of making tea at 5pm, I'll sit down have a cup of tea and a chat with my husband before starting tea, which throws the OCD into confusion. You need stamina to persevere with this.

Have you been back to your GP and told him/her about CAMHS withdrawal? The GP can push CAMHS on what they are doing for your daughter. My daughter was an inpatient for 6 months at the age of 12. She had to engage as there was no escape. Play Therapy didn't work for her and she wouldn't engage until she was captive. It's traumatic, but it did the trick. My daughter isn't cured, but she does know how to help herself...but doesn't always. My daughter also self-harms and it scares me. She says it relieves the anxiety, but it has left her arm badly scarred. Your daughter does need support if she is doing this as it only gets worse. My daughter lost all respect for CAMHS as they relentlessly let her down and often didn't turn up for meetings. This makes accessing support even harder.

What support are school giving your daughter? They should have a care plan in place for her.

Make sure you take some time for you, even if it's just to go for a walk. I might go for a sit down, read a magazine and have a coffee before I get home from work, just to have some 'me time' or I know I will crack. You are important too and you need to regenerate or you will combust. You are doing a brilliant job of supporting your daughter. Don't lose sight of yourself. I know it's not easy to do, but you deserve to be well too and OCD sucks the life out of the whole family. Don't feel guilty about having some personal space. You need it to keep sane!

I do feel for you, KC. It's really hard. My suggestions might be useless, but some have worked for me, but every child is so different. I hope you can access some support soon.

Thinking of you.

Best wishes

Julie

[PolarBear]

It must be terribly difficult to deal with a child who is in throes of severe OCD. The only thing worse will be the pain, frustration and confusion that she has to deal with every day. Making matters worse for you is her reluctance to accept treatment, including meds.

I would hope that, as she grows, her cognitive abilities will catch up to her situation and she will want to engage in treatment. Good luck to you.