Evaluation advice

[peppersnap]

Hi all

This is a bit of a repeat of the post I put in the introducing yourself thread - realise now that should have been more of a general introduction. So am going to post here in the hope of getting some advice.

My 16 year old daughter has been having extreme emotional difficulties over the past couple of years. She had what I can only describe as a meltdown last summer where she started screaming hysterically, whacked me across the arms, sobbed that she wanted to kill herself, and then collapsed. (We were on holiday and flying back the next day). The next morning we came back from the airport and took her straight to the doctor. I managed to get a referral to the local CAMHS - it was going to take months but I managed to get her seen within a couple of weeks. After her initial consultation I pressed for her to see a psychiatrist (the GP had refused to consider she might have serious mental health issues) and after a while I succeeded.

A bit of background - she had already told me she had been self harming (seems to be very common among her friends). The psychiatrist seemed uninterested in this and only commented that if she was self harming at school 'it was a good job her school jumper was red' so the blood didn't show. He also seemed under the impression that I was  neurotic mother. Eventually he put her on a very low dose of fluoxetine, just before Christmas. I supported this on condition that she tell me immediately if she felt worse as I was aware there might be increased suicidality on the medication.

Just after Christmas she told me that she felt that she should have gone to hospital and been committed but she was now feeling better. This scared me as she hadn't told me she'd been feeling worse. She also said that she thought maybe she had Borderline  Personality Disorder.

When I looked it up, a lot of it made sense of her struggles. She has always felt things very deeply - had very strong, extreme reactions to things, primarily emotional but also to noise, heat, scratchy clothing. I found her behaviour very challenging as a toddler and young child. I sensed she was very unhappy but couldn't figure out how to help her. I did buy a book on the Highly Sensitive Child which seemed to describe her. Also her father was (is) a very difficult personality and I wasn't sure how much was to do with his irritability with her. Eventually we divorced after he grabbed her and held her down screaming because the noise she was making disturbed him. He then remarried and treated her with such contempt that at 12 she elected to stop seeing him. I immediately got her therapy which she hated (went through 3 different therapists trying to find a good match for her). She eventually seemed more settled and said she wanted to stop, saying seeing the therapist was actually making her feel worse.

She had another episode at home after being referred to CAMHS but before starting medication - also one at a party. Then last week at school she had another and they sent her home. Turned out she's been self-medicating with vodka for two years (since age 14) as well as self-harming. School say she is too unwell to come back (she has her GCSE's in six months).

Back to the psychiatrist to ask for an evaluation for BPD. He refuses, saying the medication is working (he's now doubled the dose). She's currently off school. The head of year was meant to be meeting the psychiatrist this week but the psych cancelled. They're supposed to be meeting on Monday but the teacher seems to think from their phone conversation that the psych is going to say everything's fine and she should be back at school.

I've contacted her therapist and asked her to speak to the psychiatrist. She says he doesn't think it's BPD (how does he know?) and that she has to get much much worse (be repeatedly hospitalised) before she can be referred for DBT.

She does seem slightly better at the moment but perhaps that's just because the immediate pressure of school is off. At her worst moments, she says she feels constantly empty, her moods go all over the place, she hates herself, she's ugly, she doesn't trust anyone, she can't sleep, she just wants to slit her wrists, and drinking and self harm are the only things that provide any relief. She also says she looks in the mirror and doesn't know who she is. She was always extremely sensitive and quick to react even as a little toddler - she used to hit herself around the head when frustrated, argue and answer back constantly. At three she said 'there's something wrong with me' and then at various stages through her early years she's said things like 'I have anger problems,' 'I can't calm down,' 'I have really bad mood swings, am I bipolar?'

I'm tired of hearing people say that not knowing who your are, being moody and depressed and drinking and self harm are normal for teenagers. This isn't teenage angst, this is agony.

The worst thing is that I feel like she's stuck behind this glass panel and I can't reach or help her... then occasionally - usually after one of these episodes of hysteria - there's a brief interlude where the barriers are down and she is open and receptive. But within a few days the glass goes back up.

Sorry for the length of post, just want to give some background. If it's not BPD then fair enough but surely it's better to know one way or the other? I don't want to miss something important.

I'm also really upset because I confided all this to my best friend and she said she told a social worker friend of hers who said suicide is really rare among BPD and best thing is to ignore it... .

So my question is, should I keep pushing for a proper diagnosis from the pysch? What NHS support is on offer is she is diagnosed? Or isn't? If I get her a private evaluation, does that change anything re the NHS treatment or does it have to be an NHS psychiatrist who refers her? Do evaluations only consider the possibility of a specific PD or is it a comprehensive evaluation that could identify other mental health issues?

Sorry lots of questions but this is all new to me. Thanks

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[emomum]

Hi Peppersnap,

It sounds like you are a Brit like me. I am sending you big hugs as I can identify with a lot of your story and know how hard it is, but you are doing really well.

Firstly let me try to explain some of the issues you are dealing with, CAMHS will not diagnose BPD this is because they will not label this until 18 when they are no longer able to go to CAMHS. However CAMHS is an access point to other help. Sadly for me and my daughter we did not realise she had BPD until she was 20 but with hindsight her psychiatrist at CAMHS had suspected all along but did not share this information which I find despicable. I would have been happy for her not to be labelled but feel that had I known what she suspected I could have started to read books or join groups like this for support. I know she knew as during a particularly bad period I called in a desperate state insisting on help as I was not coping, she then said "All I could do is have her sectioned for Borderline Personality Order and she would have to go to an adult unit, is this what you want" It sounded so threatening that I could not do it. But now realise this is what she had thought all  along. So, in answer to your situation you wont get a diagnosis now and in fact I don't believe you need one so long as you know what you are dealing with, this reason I say is because there is practically no NHS treatment for teens with this condition. My daughter did spend time in an Adolescent unit for 6 weeks on a voluntary basis in Hendon (London) and although she got a diagnosis of PTSD here (which I already knew)the only other thing she learned was how to use disposable razors to self harm more effectively. Although it did give me and my family a breather from all the difficulties.

We eventually moved to Kent and after her 3rd suicide attempt she got referrals and a diagnosis of BPD. To cut a very long story short, the best treatment she has received by far is the STEPS programme. This is American in design and is offered in sessions over a three or four month period. They involve family initially but the work has to be done by the BPD. When I went with her I cried for two reasons firstly I had finally found some specific help for DD and secondly because there was a lady there with BPD who was explaining how STEPS had helped her, she was 49 and I found it so sad that she had suffered for so long with no help and her BPD had got so bad she had a carer. She still struggles with anxiety,depression, mood swings and lies but as long as she does not drink she is not violent. She went back to university in September and although she has had one very bad episode on the whole she is so much better.

I feel I have so much to offer you, as the things you are now going through I can identify with. One of the hardest things was that others (be they friends, doctors, therapists, social workers, police officers and others) just did not get it and I felt as if I was constantly under pressure to minimize her behavior and made to feel I was exaggerating how difficult it was. My lowest point was probably during a family therapy session arranged via CAMHS the therapist told me that Sunday dinners were exceptionally important to family and doing this would enable conversations and ease problems. The sad thing is I believed her advice and on top of lack of sleep due to DD behaviour I then would cook a lavish meal only for it to end in rows. I now know how hard BPD people find family occasions and this can trigger a lot of behaviour.

Anyway hugs and internet support to you xx

[crazedncrazymom]

Hi Peppersnap!

 It sounds like you and your daughter have been through a lot!  It is so stressful to have a daughter self harm and suffer from suicidal ideation.  It's great that you're being so proactive in trying to get her treatment.  What you are describing is similar to what a lot of other parents here are experiencing.  :)octors don't like to diagnose BPD before the age of 18.  So that is probably why you're hitting a wall.  :)oes she have a diagnosis?   One of the things that jumps out at me is that she says there's something wrong with her... bipolar, anger problems and now BPD.  Where is that coming from?  :)o you have family that suffers from or works with mental illness?

We all are working on using skills such as validation, SET statements and working on how we are reacting to our children when they become out of control.  Checking out the TOOLS and LESSONS on the right hand side of the screen.  You will find a lot of good information to get you started.

I'm looking forward to getting to know more about you and your family!

-crazed  

[peppersnap]

Thank you emomum

I'm sorry that things have been so difficult with your daughter but glad that you found a therapy that is helping. Can I ask, is the STEPS program via the NHS? or did you find it yourself?

Yes, other people minimising it is very tough. My ex (DD's father) is a very difficult, controlling personality (in fact I now think he has a PD, poss BPD or NPD or a mix) and in his mind what she needed was more discipline, more rigid boundaries, more judgement and more restriction, more punishiment - grounding etc. Whereas I felt she was struggling and needed more patience, understanding and flexibility. This caused a lot of problems and his behaviour triggered a lot of abandonment for her (going off to spend xmas with his new wife's family, asking her to be bridesmaid at his wedding and then disinviting her and her brothers etc). Of course then she would have a meltdown which he would then punish her for, which would trigger more meltdowns and the cycle just got worse until she stopped seeing him three years ago.

He completely blamed me for that, said she was asking for boundaries and I was undermining by not forcing her to see him (don't quite know what I could have done bar tying her up and physically dragging her there) but he was not willing to have a family meeting to address why she didn't want to see him (ha, wonder why not, a few home truths would have come out). After that I got barrages of emails accusing me of being a bad mother, inventing things, even emailing my family saying I was going mad and stopping him seeing her. (for the record I have NEVER stopped my kids from seeing their father).

At the time lots of my friends supported me but they seem to feel that all her difficulties were a result of her relationship with her dad and that I'm being dense for feeling there's something more going on. I also dread having to tell her father if she's hospitalised as that will start the emails and accusations again. Not that I want her hospitalised, but I do want to get her help.

Lots of family and friends say this is normal for a teen, she'll grow out of it. Not until my sister saw her having a meltdown did she understand what I was saying. Everyone's got opinions on child rearing.; unfortunately hardly any of them understand about BPD.

[peppersnap]

Thank you crazed

No, none of our family works in mental health. When she was younger she would use terminology like 'there's something wrong with me'. As she got older she would say things like 'i have anger problems' but I think that is because there were children at primary school who had ADD and so on and it was described to them like that. There was a room where these children could go to calm down and she wished she could have access to it when she needed to calm down.

Now she's older and there's more awareness of mental illness in the media (Catherine Zeta Jones seeking treatment for bipolar etc) so she knows about that. She has felt there was something really wrong for a long time and has been searching for what it is. She was watching an online talk about how to stop self-harm and that is where she first heard about BPD. They described the symptoms and she said it was the first time anything really fitted (before that she said things sounded similar but never really quite what she was experiencing.) So that's where that came from.

[peppersnap]

So at her therapy session today apparently the psychiatrist turned up and gave her a questionaire to fill in. From the sounds of it it was a BPD evaluation form. However neither the therapist or the psych referred to it as that or shared what her answers meant.

So perhaps they are evaluating her after all? Whether they give a formal dx or not remains to be seen; however at least they seem to be considering it and perhaps, depending on the results, they will offer her more formal support, whether DBT, Stepps, etc. Please keep your fingers crossed xx