Thoughts on neurofeedback/EEG

[RegalBeagle]

Hi there,
I'm a new member. My teen daughter is currently at a residential treatment center. Her primary therapist at home says she meets all the criteria for BPD. The psychological testing done at the residential center says she doesn't have BPD but that she has severe depression with psychosis and general anxiety. Regardless, the treatment recommendations are the same and we're doing all of them: DBT, medication, group therapy, family therapy.

I'm currently considering neurofeedback/EEG for when my daughter returns home (in addition to DBT and her medications). Does anyone have experience with this therapy? I'd love to know if you saw any significant improvement or if you felt it was a waste of time and money.

Thanks in advance for any insight you can offer. I'm excited to have found this community!

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

[kells76]

Welcome, RegalBeagle -- glad you found the group.

Good to hear that your D is getting help.

Does she accept any of her diagnoses? Is she compliant with treatment? Can I ask, if you feel comfortable with answering, is she a younger or older teen?

I'm currently considering neurofeedback/EEG for when my daughter returns home (in addition to DBT and her medications). Does anyone have experience with this therapy? I'd love to know if you saw any significant improvement or if you felt it was a waste of time and money.

From what I've heard (and briefly experienced many years ago), it's non-intrusive and seems to not have a downside. I don't recall feeling any particular "impact" or "upside"; then again, I didn't do it for very long.

What do your D's therapists say? Does either her primary T, or her residential team, or both, think she'd be a good candidate?

Do you think your D would comply with neurofeedback along with the other modalities?

It could be more a question of "we're doing 75% of what's recommended, but she's complying with 100% of it" versus "we're doing 100% of what's recommended, but she's complying with 75% of it". She may have an upper limit of what she's able to engage in -- might be worth talking about with her and the team. Again, depends on her personality, self-awareness, engagement with treatment, etc.

All the best, and again, so glad for you that she's getting care;

kells76

[RegalBeagle]

Thanks Kells for your response, I appreciate it. My D is 13 and I don't know if any of the therapists (at home or at residential) have actually talked with her about the diagnoses. When I asked her if anyone had mentioned a diagnosis, she said no.

At home she's compliant (after she tried running away at a day program and ended up with a police escort to inpatient) with going to DBT therapy. At residential she's probably been 70% compliant. I don't think she's fully engaged in attending to hygiene or participating in all the groups offered. But she will see the individual and family therapist.

What we're most worried about is that she isn't to the place of accepting, desiring or believing that she needs to change. We feel like once she crosses that bridge she could make immense progress. She comes home in 14 days. We're freaked out because we don't really feel like anything will be different and she's not safe at home (frequently suicidal, self-harming, missing school, thoughts of harming us when she's angry - possible antisocial traits).

This journey is exhausting, that's for sure. Some days my heart hurts for how I imagine she must feel inside and for the better life I know she can have. Other days I'm tired of dealing with the extremeness of the situation and angry about her defiance, lying and manipulation. Anyway, glad to be here among people who understand!

[kells76]

My D is 13 and I don't know if any of the therapists (at home or at residential) have actually talked with her about the diagnoses

It's possible that the providers are diagnosing, and listing it on paperwork (for insurance purposes etc), but not telling her on purpose. There can be therapeutic reasons for not disclosing a diagnosis to a client, especially a minor. When DH's kids were in T, the T did "diagnose" (on paper) my older stepdaughter with anxiety, but didn't disclose to her. First, the T thought it'd be counterproductive (i.e. focusing on a label versus skills/coping), and second, it was mostly just to make sure insurance would cover more sessions. There had to be a "reason" for continuing treatment.

That being said, a diagnosis involving psychosis doesn't sound like a "just for the paperwork" diagnosis.

At home she's compliant (after she tried running away at a day program and ended up with a police escort to inpatient) with going to DBT therapy. At residential she's probably been 70% compliant. I don't think she's fully engaged in attending to hygiene or participating in all the groups offered. But she will see the individual and family therapist.

That sounds typical and not the worst. I was in an IOP for an eating disorder back when I was a teen. There were definitely modalities and therapists I didn't like as much, and I had some attitude with them. I really liked group therapy, art therapy, and a couple of the individual T's. I didn't like family T or some of the group leaders. It just depended.

If she's only 13 but is at least engaging with a couple of the T's, that sounds not bad. She may be experimenting with "pushing back" a bit, and if her team is any good they'll recognize when that's developmentally appropriate and when it's counterproductive.

What we're most worried about is that she isn't to the place of accepting, desiring or believing that she needs to change. We feel like once she crosses that bridge she could make immense progress. She comes home in 14 days.

14 days buys you some time to plan.

How long is the program she's in?

Will she go back to seeing her primary T once she's home?

Can you get her primary T and her residential team to talk/share info, so that her primary T is more ready to "catch" her when she returns?

Does anyone on her team think she needs to stay there longer? If it were an option, would you have her stay longer?

Also,

We're freaked out because we don't really feel like anything will be different and she's not safe at home (frequently suicidal, self-harming, missing school, thoughts of harming us when she's angry - possible antisocial traits).

All the T's know about this, right?

Have there been any metrics for her to achieve around these issues, while in residential? I.e., "goal is to decrease frequency of SI thoughts from 5x/day to 3x/week" or something?

The suicidal/harm to self and others ideations seem like they need a pretty intense safety net and plan.

Does she get released with any kind of followup from residential, or recommended treatment plan, return visits for IOP type stuff...?

Some days my heart hurts for how I imagine she must feel inside and for the better life I know she can have. Other days I'm tired of dealing with the extremeness of the situation and angry about her defiance, lying and manipulation.

Both make sense. You're definitely with people here who get it.

Post whenever you are able;

kells76

[I Am Redeemed]

Hi, just wanted to say that I have been doing Low Energy Neurofeedback since early last year for the treatment of depression and complex PTSD. I'm also considering doing it for my son with ADHD.

It's different for everyone. The therapist or technician will first get a "brain map" and then will treat different sites of the brain. I had to fill out an assessment before the treatment started, then after each treatment I would go back to the assessment and rate my symptoms. The program tracked the increase or decrease of the symptoms.

After a few sessions, my clinical depression disappeared. The LENS also seems to be working on the fear centers, and has increased my confidence and decreased the anxiety. It's an ongoing process, though, and I have by no means gotten completely rid of all symptoms.

One thing about LENS is that it helps open or enhance neural pathways. It is used to treat lots of different issues, but as I mentioned, it takes time and is different for each individual.

[RegalBeagle]

Wow, it's so encouraging to hear that you've had good results from LENS, I Am Redeemed.

We're definitely going to move forward with trying it. I just watched a video presentation from McLean Hospital (affiliated with Harvard Medical School) about incorporating biofeedback/neurofeedback into treatment for BPD. If anyone is interested, here's the video: https://www.mcleanhospital.org/video/integrating-biofeedback-tool-treatment-borderline-personality-disorder

My daughter has extreme difficulty identifying her emotions so I think there could be a lot of potential with neurofeedback. And really, there's no drawback/side effects other than that it's expensive and insurance doesn't cover it. 

[RegalBeagle]

Kells, I always appreciate all your thoughtful questions. My D is reassessed every Wednesday to determine if the team thinks she's made sufficient progress to return home. So if they say longer and have good reasons, then we would go with the treatment center's recommendations. She has been there a month so far.

We haven't been entirely happy with the treatment center and communication is one of the problems. So we've been trying, unsuccessfully thus far, to reach my D's individual therapist at the center to ask about behavioral goals (something her regular therapist at home recommended we ask). That's definitely something we want to know more about.

I appreciate your reassurance that some of her pushback could be normal teenage behavior. That's true. I guess we just freak because we think the more she participates the better.

When my D returns home she'll go back to school and have therapy four times a week (DBT group/individual and neurofeedback). The treatment center recommended a day program/PHP but she was already in that twice in the last three months. Her home therapist agreed with us that we should do a hybrid where she goes to school but has increased therapy in her free time.

We're praying for it to work out when she comes home. Because I feel like we've tried everything - she was hospitalized twice last year for inpatient mental health, day program/PHP twice last year, outpatient DBT program, family therapy, medications. The only thing we can think of now is therapeutic boarding school if we can't maintain a safe home with her. We're not willing to continue living in fear, anxiety and chaos indefinitely.

[Cat Familiar]

I had a great experience with LENS. I did it for a couple of years and became friends with the practitioner, then traded sessions with her, as she wanted a “tuneup” and needed help placing the electrodes.

I began doing it after a concussion and I saw great improvement, which continued throughout the process.

What is observable to LENS practitioners after treatment is more neural pathways are functioning. This is a positive permanent change allowing the brain to be more functional.

My husband did the process and when his brain was mapped, she noticed areas that had been damaged by a concussion when he was about 8 years old. Over time, those areas cleared and became more functional.

As he is someone with BPD, I’d say from my observation of his behavior, that he became less emotionally reactive after the treatment. Should he have continued, that likely would have improved even more.

The downside of LENS is that it is not covered by most insurance and it takes a long time for the process to be effective. Once all the sites are treated, it tends to last, but tuneups can help refresh quick processing and uplift mood.

[RegalBeagle]

Thank you so much for telling me about your experience Cat Familiar. We are going to move forward with trying neurofeedback. The place we're going offers neurofeedback, LENS and neuromodulation.

Have you heard if concussions linked at all to the onset of or worsening of mental illness? Just curious because you mentioned that about your husband.

[Cat Familiar]

I don’t know about any research, but from my personal experience, I’d be surprised if concussions don’t exacerbate tendencies for mental illness. It’s very disconcerting when the brain is not operating optimally and the *user* is aware of that.

We’ve heard many accounts in recent years of football players who’ve had multiple traumatic brain injuries during their careers, who have done unfortunate things leading to international news coverage.

It seems likely that many would suffer lingering difficulties with executive function even after recovering from a mild concussion.

[RegalBeagle]

Good point, Cat Familiar. I was curious about the concussion part of it. I'm pretty certain that my daughter had a concussion in 5th grade and it was the following summer after that her behavior started getting so bad. But then again, there could be other reasons for that too including the onset of her period and what she might have been getting into online. I'll be curious to see what the brain map indicates once she gets that done. Thanks again for your feedback!

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

[kells76]

I'm pretty certain that my daughter had a concussion in 5th grade and it was the following summer after that her behavior started getting so bad.

If your D is accepting of a more "neutral" / "biological" explanation for her behaviors (that is, physical brain trauma versus "your personality" or "your emotions"), do you think she would be more compliant with treatment?

Does she recognize that she says and does things that are harmful? Has she ever expressed wanting to not do or say those things?

If the focus is on "the concussion impacted your brain and the LENS is to get your brain back on track", I wonder if she would be compliant, versus if the explanation is "you're getting LENS because of your out of control behavior and emotional dysregulation". True, but not helpful.

...

My D is reassessed every Wednesday to determine if the team thinks she's made sufficient progress to return home. So if they say longer and have good reasons, then we would go with the treatment center's recommendations. She has been there a month so far.

Good to hear. Do they have a "minimum" stay? Some places do.

we've been trying, unsuccessfully thus far, to reach my D's individual therapist at the center to ask about behavioral goals (something her regular therapist at home recommended we ask).

Would you get more traction if your D's primary T were the one to contact the center? Wondering if "professional to professional" could increase the urgency/get more communication. Whatever it takes to get all the adults on the same page.

some of her pushback could be normal teenage behavior. That's true. I guess we just freak because we think the more she participates the better.

Maybe another way of looking at it is: Sure, she could physically be in 100% of the groups, but if she isn't engaging, then it's not worth it. If she's in 50% of the groups but is genuinely trying, then that could mean more. It's possible that the treatment center knows this and gives kids a little leeway so they feel ownership of their treatment. I can't imagine the center being fine with kids not participating in any groups or sessions.

When my D returns home she'll go back to school and have therapy four times a week (DBT group/individual and neurofeedback). The treatment center recommended a day program/PHP but she was already in that twice in the last three months. Her home therapist agreed with us that we should do a hybrid where she goes to school but has increased therapy in her free time.

OK, good to hear that her primary T is on the same page with you. Does your D know that this is the plan?

Is her school ready and willing to do IEP/504 type stuff to accommodate her?

The only thing we can think of now is therapeutic boarding school if we can't maintain a safe home with her. We're not willing to continue living in fear, anxiety and chaos indefinitely.

There are members who have had success with getting their kids into wilderness/therapeutic boarding school situations. If you search for posts by member lbjnltx (let me know if you need a hand figuring out how to search), you can see some of her experience with her D in a therapeutic boarding school.

Have you seen the "Lessons" thread yet? Here it is:

https://bpdfamily.com/message_board/index.php?topic=114267.0

and if you scroll down to Lesson 6 on "Therapy methods and inpatient / outpatient venues", there is a big collection of links to threads on RTCs and programs for teens.

There's also this thread; not sure if it's in the collection:

https://bpdfamily.com/message_board/index.php?topic=298572.0

...

Hoping for the best for you and your family;

kells76

[wendydarling]

Hello RegalBeagle  and welcome

Following up Kell's message, here is lbjlnx's inspirational journey with her young teen daughter.
Residential Treatment:
Journal of 12 month journey

My daughter was diagnosed in 2015 at 26 yrs old, we live in the UK. The best advice I can offer is for you to reach out to Blaise Aguirre, one consultation may provide you and your daughter a path. 

WDx 

[RegalBeagle]

WendyDarling,
Thank you for referring me to that journal. I'm going to read up! Did you do a consultation with Blaise Aguirre? Or did your daughter go to McLean Hospital? That was actually the first place our home DBT therapist recommended. But because we were out-of-state they won't take our insurance and charge $10,000/week. I would love to hear more about your experience with Blaise Aguirre.

[wendydarling]

Hi RegalBegal

We are in the UK, so nope not met Blaise Aguirre in person. Yet.

When my DD was diagnosed, she was in deep crisis, very unwell, I feared we would lose her. The Dr who diagnosed her recommended she read Mindfulness for Borderline Personality Disorder: Relieve suffering from Borderline Personality Disorder, Blaise Aguirre and Gillian Galen, which she did. The book offers positive coping skills and real inspiration to people working to move beyond the suffering arising from their struggles with BPD. DD read the book in one session and felt truly understood for the first time, she had hope and the path was DBT.  DD recommends the book online, she mentioned she'd given her book away and planned to purchase - Blaise Aguirre saw her message, contacted her and sent a complimentary copy.

While you are out of state as you say, perhaps an online consultation might provide direction and comfort you are seeking, to ensure you are on track? It may save you time and cost, long term.

WDx