Complex mental health journey - to diagnose or not to diagnose

[Chickalily]

I am interested in the experiences of people with BPD and families of teens with complex mental health to work out next steps in how to best support my 15yo. Just a caveat - I am fine and my gorgeous girl is doing much better than she was (despite the slightly dramatic story to follow).

18 months ago, my youngest child (then 14) started having difficulty at the school she loved. There were changes to key teacher relationships then breakdowns of friendships. She insisted on leaving. On leaving, she decided to end the relationship with her ‘soulmate’ friends because they had ‘become too mean’. They were not being kind, but it seemed resolvable. She has a history of being ostracised and bullied.

She then cut all interactions with family and spent the whole summer holidays in bed, didn’t participate in any activities. She spent time studying social media profiles of kids at the next school. She changed her appearance completely overnight (full wardrobe change, pierced own ears 3 times, stopped wearing glasses, bleached hair) to match profiles. Day 1 she met her ‘new best friend’ who turned out not to go to school, had no contact with mother and smoked lots of weed.

My daughter’s mood continued to descend and she started saying I am horrible and reported to school that our household is unsafe and she would need to go to foster care because i opened her blinds in the morning and took her doona off one day when she wouldn’t get out of bed (literally that is what she reported). She ended up being horrible to be around, was so angry and totally unhinged if she was awake. She slept through Mother’s Day, her own 15th birthday, dad’s birthday etc. We were asking GP and school counsellor for help and being told ‘teenagers go through these periods’. Friends kept saying ‘teenagers are like that’. I have an older teen. They do not look like that.

In June she was admitted to ICU. Then again 3 weeks later. 
Since then, she has had emergency services involved 16 times (due to phoning Lifeline) presented to emergency 40 times, had an inpatient hospital admission and has been told she has: no mental illness and needs to get back to school and stop giving her parents a hard time; autism (without assessment); BiPolar disorder; nope, not bipolar disorder; depression, anxiety and now ‘low distress tolerance with poor emotional regulation due to school related trauma.’ She decided she was a drug addict and requested a residential rehab when the hospital became unavailable. I do believe she was using alcohol and drugs to manage intense feelings but not that she has true addiction. We were advised to ‘go with it in case she made reality match her perception’. The program was good but overall it a disaster as she was surrounded by kids who have been in the criminal justice system.

I was told by a psychiatrist to read ‘Stop Walking on Eggshells’ but ‘not that she has BPD because she is too young’. 
We have been trying our best to get the right supports but have found ‘the system’ so difficult to manage, particularly as she has launched from crisis to crisis and always seemed to be half a step ahead, trying to solve her own problems (like choosing an inpatient hospital treatment facility while sitting in ICU) and no consistent support from specialists.

We have moved away as we could not get out of the cycle where we lived . I have quit my job for the time being.
We started well with our fresh start but this week (after 2 kids at the new school were mean and a boy ‘dumped her’ after 4 weeks chatting online) she has started self-harming, calling emergency services, taking any medication she can find and presenting to emergency. We had an appointment with the CAMHS psychiatrist from our previous area who said ‘you do not need hospital, you need to do therapy to learn how to manage life’s disappointments. And we are discharging you.’ Within an hour of that appointment, the voice my kid was hearing started to include threats of violence and she called lifeline to tell them. Needless to say, I came up to find police and ambulance were at the door.

During this recent episode it has become much clearer to me that there is a serious issue that I can’t just parent my way out of.

We are now in an area with very limited services but we have to re-engage with ‘the system’ as she is back to involving police, hospitals etc. 

So, I am wondering:

- Is it worth pursuing more definitive diagnosis? She really feels out of control and does not understand why. I have no doubt people have tried to explain ‘emotional dysregulation’ but it sounds like they are saying ‘everyone feels like that, you are thin-skinned and need to toughen up’. The school also finds it very difficult to deal with the fact that the only diagnosis we have is ‘anxiety’. It does not explain some of the extreme behaviour they have already seen. 

- Is it worth finding a private psychiatrist online? I have contacted multiple and all have waitlists. the CAMHS team has a psychiatrist visit for 4 hours once a month. 
- where would I look for a good psychiatrist who will truly listen and work through things with kid/family and provide ongoing support?

- For people with BPD, what are your thoughts about diagnosis in adolescence?

- For those with BPD - school is a hotbed of relationship issues. It causes so much distress. She just came to say she hurt herself because she ‘asked x to hang out this weekend and she said she can’t but might be available next week’.
- She wants to be at school and can’t handle it at the same time. I want her to put it on hold but being isolated is almost as hard. Thoughts?

- has anyone done DBT online? Is it worth it?

any other thoughts for the journey?

thanks

[tyme]

Wow @Chickalily .

Why I'm saying Wow is not because anything is surprising, but because I have BPD, and I can see through much of what you have written in that it comes down to an unstable sense of self, emotional dysregulation, and her mood/behaviour changes rapidly with whatever is going on in her environment. That is, it can flip from idolising a person to completely hating them in a matter of moments.

There is some truth in saying it is a teenage phase. I can see why specialists are reluctant to label it as BPD. Usually, the diagnosis is given from early adulthood e.g. from 19 years onwards? This is because specialists want to ensure that BPD is not 'confused' with the brain changes in teenagers. 

With DBT, unless your daughter wants to have it and is ready to change, you may as well save the money for later use. Psychotherapy usually doesn't work if there is no 100% commitment and buy-in from the person. For my BPD, I had mentalisation-based therapy in it's entirety. That was about 3 solid hours of therapy each week - both individual and group therapy. It was a not easy at all. It was intense. And many dropped out. I continued this therapy and it lasted just over 18 months. Even when I was discharged, it was still very unstable. I had to sort of be thrown out into the deep end to just be me. 

Over time, things changed, and I'm in a much better place now. 

I also had ongoing DBT and ACT skills learning which was helpful in a way, but MBT was the main therapy. 

Unless you are looking at a good 12-18 months of weekly DBT therapy of both group and individual, then it most likely isn't the whole therapy, but moreso someone teaching a few DBT skills here and there. 

Bottom line, unless she is totally committed, it's unlikely things will change. 

At this time, it's about keeping her safe and letting her know you are there to support her but also setting boundaries. She may kick against the boundaries, but inside, boundaries keep people safe - this was my experience as a borderline anyway.

I could go on forever about this, but I don't want to overwhelm you.

Feel free to ask anything BPD-related. I'm all ears.

[Chickalily]

Thanks @tyme fpr taking the time to respond. 
My daughter is happy to participate in therapy but I do wonder about the likelihood of her participating fully. She has had access to one to one therapy for 9 months but never applies anything from sessions and is still pretty firmly in the ‘it is everybody else’s fault’ camp. She ‘gets over’ therapists when they challenge her thinking.  What has seemed to work is having a therapist who can work through anst experiences and help understand the connection to the way she responds to things.
at the moment I am trying to focus on our relationship. We are best buds now, mostly because I am 100% available at nearly all times. I am happy to do that for now as it seems to be the only thing keeping things on track (sort of, mostly). 
Are there any approaches you think I can take to help her have perspective when she is seeing things from a narrow, rigid perspective (without invalidating)?

Did you have periods of exhaustion and depressive type symptoms? My girl has been in bed for a week. Mainly to avoid contact with others due to the voice she is hearing. I don’t know when to push and when to trust she knows her limitations. It is a bit of a tightrope. 
I would like her to be able to take a moment between a moment of perceived rejection (declined invitation to hang out) and hurting herself. Is there anything you think works? She has one strategy but she doesn’t use it in those moments.

any other thoughts you have about how to help her understand what is happening and work through it, would be appreciated.

thanks

[tyme]

You daughter is so lucky to have you @Chickalily . It's important to maintain that relationship. 

I've learnt from my experiences that the people closest to me were the ones I hurt most. I was grateful for those who kept their standards and set boundaries. I kicked against the boundaries big time, but I needed them. It was what helped me feel safe.

As for approaches to help her with perspective, the BIGGEST hint is, DON'T try when she is heightened. This will only escalate things and make it worse. What worked for me is my therapists always 'invited' me to try things e.g. "I invite you to think about XYZ, however, if you don't feel you can, that's okay". But using this type of language, I was empowered to still be in control. When people told me what to do, I kicked and bucked because I felt they were trying to take control of me. Power and control was huge for me. Emotionally, I was so out of control that I needed to just know I could hold onto some form of control.

As for periods of exhaustion - yes. I didn't leave home for many years. I ended up taking anti-depressants, and after finding the 'right' anti-depressant, only then did I have the energy to heal. It took quite a few months to stabilise though.

I absolutely hear you about the perceived rejection and the space before self-harming. For me, the strategy the mental health team put in place was to remove most of what I could use for self-harm. This way, I still had the choice to self harm, bit I had to go to more lengths before I could obtain the things. This meant I had to wait before self-harming - and hopefully by then, I'd be too exhausted to go through with it. I know this sounds obvious, but only when I reflect on it now, I realise I was saved many times because of it.

Talking to her about this BEFORE she is triggered is probably the best way. 

The main thing - allows allow choice.

Click to read. TW: Self-Harm

Content/trigger warning

This will help her feel in control. I remember my treating team saying, "if you have to self-harm, do it safely." I'd never heard anyone say this. But because they said it, it actually made me stop before doing it. Conversely, if they told me not to do it, I'd have more a reason to self-harm.

(Note: I am in no way condoning self-harm)

Above all, take care of yourself. It can be so exhausting.

[Chickalily]

Thanks so much.

I feel more confident with the approach I am taking and you have given me some great tips.

I will advocate a more considered approach to the medication than the one that’s been taken. The psychiatrist told us to remove the antipsychotic (slowly) but my daughter starts to hear voices within a day of that occurring. We have tried three times and it has taken me some time to work out that the fear that ‘something will go wrong’ is causing the reaction, not the actual change in dosage (as there is no impact if she misses a whole dose). The anti-anxiety medication is the one that has made the biggest difference but is still not quite right, I think. As I am getting the message ‘BPD can’t be medicated’ I have not advocated well in this space. 

Thanks for the tip about control. We parent this child so differently to our other. We cannot direct or appear to try to ‘control’. Everything needs to be facilitated choice-making. Last year it was extremely difficult to do that because she was so out of control. We were trying to have logical conversations with someone who could not reason. I have found other ways to do this and now she is not as heightened all the time, it is easier. It is effortful and I know it is perceived by other parents and by school as weak but it is a disaster when we try to enforce our agenda.

I will use that sentence around the use of strategies for self management as that is one thing I had not found a way to discuss without push-back.

Thanks again.

I really appreciate your responses.

[tyme]

Hey @Chickalily ,

By the way, I should clarify that I’m only answering your questions from a borderline’s perspective. I, too, cannot say whether your daughter has BPD or not.

With medication, it’s true that it does little for the BPD itself, but for me, if I didn’t take the concoction of anti depressants, anti anxiety/anti psychotics, I don’t think I would have been fit to undergo the MBT treatment I had. 

What makes the difference with treatment is the willingness to push past the discomfort to do practice things that feel unnatural. I think this is why it’s so hard.

One thing I know for certain is that BPD is very treatable and the long term prognosis is positive (from my experience anyway).

Key thing as a carer is: strike while the iron is cold - not hot. 

A BPD meltdown is truly a meltdown. This means the individual has moved beyond their reasoning brain and into their emotional brain. This is not a good time to ask them to see things from a different perspective. Rather, let her know you care and when SHE is ready, she can speak to you. Otherwise you will check in in half an hour. Knowing that you are coming back will be the biggest comfort in that you haven’t rejected or abandoned her. However, for me, if you said you would check in in 30 mins, and you came back in 35 mins instead, in my mind, I have ‘proven’ you don’t care because you were 5 mins late. This was when I turned to self harm…

Looking back, my brain was… ‘strange’. I don’t know what else to call it.

I have to admit though that once my brain moved on from this stage, I’ve never gone back.

 The best way I can describe how I felt is I was an emotional child stuck in an adult’s body. My body grew up, but emotionally I didn’t. Hence the meltdowns, the insecurity, the anxiety, the tears…

Hope this helps a little.