If you have a child with mental health issues, HELP!

[bethben]

9 hours ago, BeachGal said:

She may have some sort of developmental trauma which affected how her nervous system developed. It sounds like her sympathetic nervous system is activated quite often and she has difficulty moving out of that system. It is physiological. If you can find a therapist who understands the autonomic nervous system, including Stephen Porges’ Polyvagal Theory, that could be helpful. The goal would be to retune your daughter’s nervous system. The Polyvagal Theory is complicated to explain but there are some YouTube videos that simplify how it works in therapy for attachment issues, autism, anxiety, adhd, etc.

To help retune the nervous system, Stephen Porges has developed a therapy called the Safe and Sound Protocol which has helped children who have the behavior issues that you’re describing. I’ll link one of his books and if you go down to the reviews, the second one was written by someone who used the Safe and Sound Protocol to treat her child who was close to being moved into a residential facility. She mentions that she runs a Facebook group so maybe you could join the group.

https://www.amazon.com/Pocket-Guide-Polyvagal-Theory-Transformative/dp/0393707873

https://integratedlistening.com/ssp-safe-sound-protocol-clinical-resources/

 

 

I know she has some developmental trauma.  She's a little hyper aware.  We had her in a school last year where the kids were required to basically police other children and help them behave in the classroom.  She came home very stressed every day because of this program.  She was monitoring classmates constantly.  I have a friend whose adopted child is also in the school. Same issue.  I am familiar with the type of program with the music and headphones.  My disabled son used it when he was little.  It is the most annoying music to listen to!  It made my head hurt.  I will ask about it on her giant brain appointment.  

[PeterPan]

Btw, as part of not having my kids regularly consuming cow's milk, I had to keep them on calcium. My ds is on a pretty stiff dose of calcium, the recommended amount for his age. It has some bonus vitamin D, and D is a mood stabilizer. I also give him magnesium, and magnesium is known to be calming with anxiety, etc. 

[PeterPan]

Van der Kolk's book                                             The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma                                       is going to summarize current thinking on trauma interventions, polyvagal theory, etc. 

I'm with you that the music/sound therapies can be really hard to process for some kids. A similar program helped one dc and didn't help another. I find them fatiguing and headache inducing. There are definitely more ways to do trauma bodywork. Bodyscans are a starting point and the tapping exercise in Levine's Healing Trauma is simple for anyone to do. I was able to release some trauma that way and it's a go-to technique for me when I'm trying to work on something and having a hard time making connections.

For me, TRE (Trauma Release Exercises) were profound. I don't know what is considered appropriate in RAD situations, etc. I had run of the mill life-threatening trauma, including some that was pre-declarative memory. For me the TRE was able to release it, and I could then process it with a counselor. It made a pretty big difference in my level of connectivity to others. 

Edited April 24, 2019 by PeterPan

[bethben]

I will find out Thursday for her full blood panel including allergy testing if she is reacting to anything.  My mom guess is that she is not ADHD, but has a trauma brain.  Apparently the brain people can help to figure that component out also.  Since getting her off all the meds, her teacher has seen the happier/friendlier dd that I know she can be.  She is definitely on the hyper end of things though.  She has also had ongoing ear issues so the music sensory thing makes sense also.  She is constantly asking me if she's talking too loud (usually she is).  

[PeterPan]

1 hour ago, bethben said:

 She is constantly asking me if she's talking too loud (usually she is).  

That can be an autism thing. Has someone been telling her she's being too loud and now she's anxious about it? Have you had her checked by audiology? Our university audiology does a great job and has both your basic audiology evals *and* the APD evals. It's always something to get screened if you can do it affordably.

[Pen]

1 hour ago, bethben said:

I will find out Thursday for her full blood panel including allergy testing if she is reacting to anything.  

 

 

A full blood panel etc = very good to do.  But not every thing can be determined that way.  Not every sensitivity is an “ allergy”, and not every problem even that might have a blood test available will be part of “full” blood panel.  They have to have an idea what they are looking for, and then oftentimes if there’s a test, specifically order the test.  

A “full” blood panel is usually a basic group of tests run at the same time.  Its name can make people think it is much more comprehensive, testing for everything, than is true in reality.

1 hour ago, bethben said:

My mom guess is that she is not ADHD, but has a trauma brain.  Apparently the brain people can help to figure that component out also.

 

Yes.  They should be able to help figure that out. Be sure it’s on the papers you take in not to forget that question.

1 hour ago, bethben said:

 Since getting her off all the meds, her teacher has seen the happier/friendlier dd that I know she can be.  

That’s interesting observation.

1 hour ago, bethben said:

She is definitely on the hyper end of things though.  She has also had ongoing ear issues so the music sensory thing makes sense also.  

 

There are other sound things too.  Brain wave programs, ASMR, etc.. 

and perhaps something like EMDR could be helpful for both your ptsd and her trauma. 

1 hour ago, bethben said:

She is constantly asking me if she's talking too loud (usually she is).  

 

That’s also interesting.  Apparently she does care.  

[Pen]

1 hour ago, PeterPan said:

Van der Kolk's book                                             The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma                                       is going to summarize current thinking on trauma interventions, polyvagal theory, etc. 

I'm with you that the music/sound therapies can be really hard to process for some kids. A similar program helped one dc and didn't help another. I find them fatiguing and headache inducing. There are definitely more ways to do trauma bodywork. Bodyscans are a starting point and the tapping exercise in Levine's Healing Trauma is simple for anyone to do. I was able to release some trauma that way and it's a go-to technique for me when I'm trying to work on something and having a hard time making connections.

For me, TRE (Trauma Release Exercises) were profound. I don't know what is considered appropriate in RAD situations, etc. I had run of the mill life-threatening trauma, including some that was pre-declarative memory. For me the TRE was able to release it, and I could then process it with a counselor. It made a pretty big difference in my level of connectivity to others. 

 

All of this could be of huge help for you @bethben personally with regard to your own ptsd, and also for your dd.

[PeterPan]

Just now, Pen said:

with regard to your own ptsd,

Yeah, I guess that's something I don't like to talk about a lot, but yes I do TRE now after ds has episodes. Also cranial sacral can release some of that. I probably did TRE 40-50 times and at that point it started happening pretty quickly. So like he had an episode on our recent cruise, and that night I went and got a massage and had some TRE at the end to get it out, yes.

The theory is the psoas muscle is storing all that tension, the sensory memories, the hurt. So you set off a reflex that makes it tremble and release, and then you can process and move on. You don't have to know *what* you're releasing, which is why it works for experiences that were predeclarative memory. That also explains why you can hurt and have inexplicable health problems, etc., because that PSOAS muscle is storing so much hurt. Or at least that's the theory. 

[PeterPan]

10 minutes ago, Pen said:

EMDR could be helpful for both your ptsd and her trauma. 

EMDR is good stuff too, definitely. You'd lean more toward TRE if there was trauma pre-declarative memory. Also, you can do TRE yourself, privately, for free. 

Pre-declarative memory generally means before age 3. So the dc maybe was exposed to violent situations, situations the dc's body perceived as life-threatening, whatever, but the dc doesn't remember it to process through other ways. He has sensory memory but not declarative memory. 

Fwiw, my trauma that was before declarative memory was the MOST INTENSE of any of the stuff we released with TRE. Like that was really off the charts, very rattling, stuff I had to talk through with a counselor. And that was after doing a LOT of TRE, so it really took a while to get there and make those connections and have the body be ready to release it. Before that it was stuff like when I nearly drowned, that kind of thing. But that pre-declarative, that was really awful when that came out. 

I just feel bad that kids have these predeclarative memory experiences, that's all, sigh.

Edited April 24, 2019 by PeterPan

[Pen]

Just now, PeterPan said:

EMDR is good stuff too, definitely. You'd lean more toward TRE if there was trauma pre-declarative memory. Also, you can do TRE yourself, privately, for free.

 

I think quite a few people manage to do forms of EMDR privately and free too.  Levine discovered it while walking iirc.

another along these lines are Emotional Freedom Technique—tapping and so on

and we’ve had some threads here or on Learning Challenges on supplements related to ptsd and anxiety iirc

[PeterPan]

1 minute ago, Pen said:

I think quite a few people manage to do forms of EMDR privately and free too.  Levine discovered it while walking iirc.

See I clearly need to look into it harder, lol. I was told about doing it with a practitioner, and I assumed that was the only way. Yeah, Levine is kind of interesting. 

I did some EFT with a practitioner years ago, but I don't think we went very far. It was kind of inconvenient for timing and the stage of my life. Levine's tapping where he has you own the body part and tap is really profound. I released some memories, just inocuous things, that I hadn't really expected. It's one of my favorite go tos just because you can always get alone with yourself for a bit, lol. Steam room, shower, anywhere.

[Pen]

30 minutes ago, PeterPan said:

Yeah, I guess that's something I don't like to talk about a lot, but yes I do TRE now after ds has episodes. Also cranial sacral can release some of that. I probably did TRE 40-50 times and at that point it started happening pretty quickly. So like he had an episode on our recent cruise, and that night I went and got a massage and had some TRE at the end to get it out, yes.

The theory is the psoas muscle is storing all that tension, the sensory memories, the hurt. So you set off a reflex that makes it tremble and release, and then you can process and move on. You don't have to know *what* you're releasing, which is why it works for experiences that were predeclarative memory. That also explains why you can hurt and have inexplicable health problems, etc., because that PSOAS muscle is storing so much hurt. Or at least that's the theory. 

 

I do Seal Breathing if Ican when I have to deal with someone having an episode.  During. 

That and a short mantra meditation daily (or try to remember daily) to help decrease my own reactivity 

[Pen]

@PeterPan @bethben

Some of these could be helpful just day to day, as well as for a mother to handle a rage episode, big neuropsych evaluation, or similar:

https://youmemindbody.com/mental-health/How-To-Do-Self-Administered-EMDR-Therapy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316206/

 

Also, I don’t know if there’s NAMI groups  in Canada, but if so that could be another help for @bethben Or perhaps just online info long distance

 

 

[hippiemamato3]

On 4/23/2019 at 11:48 AM, bethben said:

I am waiting on test results from a full blood workup.  The pediatrician did one and per all blood tests for kids now basically tested for high cholesterol levels, pre-diabetes, and thyroid function along with vitamin d levels.  This is for a very very thin girl.  Stupid.  I went somewhere else who did a full panel of all of the above type tests and we'll see what the results are on Thursday.  I do keep her away from a lot of sugar and make everything almost from scratch.  She is not given food dyes in anything just in case she does react (I don't know since she doesn't eat them).  She begs food from other kids I believe (I've seen wrappers in her lunch box) because "my mom doesn't give me fun food" - per her admission.  But, everything at home is pretty controlled.  So, between the blood work and the psychologist, I should have a better answer?  Maybe I just needed to vent.  

You can be very, very thin and still have high cholesterol, poor thyroid function, low vitamin D or be pre-diabetic. It's not stupid to check all the medical boxes - it's smart. 

Edited April 25, 2019 by hippiemamato3

[BeachGal]

On 4/24/2019 at 9:05 AM, bethben said:

 

I know she has some developmental trauma.  She's a little hyper aware.  We had her in a school last year where the kids were required to basically police other children and help them behave in the classroom.  She came home very stressed every day because of this program.  She was monitoring classmates constantly.  I have a friend whose adopted child is also in the school. Same issue.  I am familiar with the type of program with the music and headphones.  My disabled son used it when he was little.  It is the most annoying music to listen to!  It made my head hurt.  I will ask about it on her giant brain appointment.  

 

Stephen Porges' son mentioned on YouTube that a lot of Disney music has those tones that help to tighten the ear muscles. He got boos from the audience! It would be nice if they'd create a variety of songs people could listen to.

If you were to have your daughter listen to it, maybe have her use headphones if that's okay. Then you can have your peace and quiet.

ETA: I agree with Pen and Peter Pan about possibly trying those other things as well as reading Bessel van der Kolk's book if you haven't already. 

Edited April 25, 2019 by BeachGal