DMDD/Kids mental health thread

[campermom]

Can I find any other moms to touch base with about this? It’s so isolating. I cannot talk to people IRL about this. I find that if I tell other parents what’s going on (coaches, other parents of teammates, etc) simply bc I am needing to be on top of my kid, I need to keep him from rough housing, I need him NOT to be chased and tackled at baseball practice bc in about 3 seconds he’s going to lose his mind on your child.

I find that they want to make me feel better, and tell me that all kids go through this. “All kids go through this”

No. No, they don’t. Not like this. And I can’t even bring myself to talk about the behaviors he can display when he’s dysregulated.

And he looks physically like he’s typically developing, and has average language skills. So people don’t realize how debilitating this disability is.

I’m curious which meds your child started on, what age, how they are doing.

My child is 8. Started on adhd meds at 5, but I knew there was something more. His dx of DMDD came at 6, and we added Depakote sprinkles. Our path became worse so we went on Lamotrigine (Lamictal). Dosage went up, about a year later. This fall was going so well, we attempted to cut it back and it was very clear within 2 weeks that his meds were doing their job, so we went back up. This year he would have speedbumps but could make it a month without Referrals.

In the past 4 weeks, theres something going on w his meds, and I’m pursuing follow up my suspicion about what’s happening but he is rapidly declining. He is no longer himself. Referrals or big issues everyday. Support room for long periods of time. I communicate w staff and we are all on the same page. We are ramping up supports at school it seems like each week. No changes will be made w meds until the next appointment in about a week and a half.

During sports practice last year, his first year trying baseball, I used to be able to run a mile lap last year 3 times and felt comfortable with him being with his coaches. Now, tonight I tried just walking back and forth in front of practice and ended up stopping after 10 minutes bc I needed to be close enough to redirect him. There were only 4 kids at practice but these new coaches are not hands on and there’s horseplay. I did have a conversation w the coach before the season began and told him what he needed to know. It’s a combo of passive coach personality plus my son is in a pretty bad place right now. I’m nervous about him going to practice for 90 minutes without me this weekend, I’ll be at my daughters game and he’s going to be w his dad.

His doctor took over for his original psychiatrist who left the practice and she mentioned she would not have selected this one as first line but it seemed to work so she kept it. I can’t remember if she said Risperdal or Risperdone would have been one she would consider.

I rambled. It’s really stressful right now.

[barefootcontessa]

My son is older but has this diagnosis. He was always difficult but things declined when moved out of state. That was five years ago and things have gotten worse as he has become a teenager. He was hospitalized for three months last year. During that time they settled on a medication plan (also on lamictal) which has taken off the edge somewhat. He is no longer physically violent but he remains verbally abusive, so much so that he is no longer living with our family.

My opinion is that meds can only do so much. This is a personality disorder that requires the child to want to change. DBT is the gold standard and I would try to get your son into something like that.

After over five years of doing everything I could for my son, I have pretty much given up on him. I have other children who have suffered for years as a result of his behavior and the turmoil it has caused. I want to give them the time and attention they deserve. My own well-being has also suffered greatly.


All of this sucks but a motivated person can managed the disorder with the skills from DBT. They have to want to change, however.

[campermom]

barefootcontessa I’m so, so sorry to hear this is been your child’s path. Were there other diagnoses? A lot of times DMDD is diagnosed along with other disorders. Or it’s the initial diagnosis and can morph into others as they age.

Dmdd is a mood disorder, but not a personality disorder. I think you might be referring to Borderline? what DBT is usually recommended for. Sometimes people conflate Borderline personality disorder and Bipolar Disorder. Dmdd was a newer diagnosis from around 2013ish, when kids were being misdiagnosed and over identified as having Bipolar. The research has shown that kids who are diagnosed w DMDD have a higher likelihood of developing depression and anxiety as an adolescent/adult. One of the most prevalent symptoms of DMDD is irritability. It was definitely a baseline for us, that improved w meds. It’s been about 2 years since I felt irritability was constant, but we are back to that.

We have done outpatient therapy, and child centered play therapy. He has counseling at school and had an FBA, his BIP has been in place for 4 years and gets revised. He went from a 504 to an IEP.

Did your child ever did an IOP program (intensive outpatient) where it’s usually a half day in a clinical setting for various groups/individual therapies, and if so, when did you know that was what was needed?

Again I am so sorry this has been your experience. Have you ever found other parents anywhere who could relate?

[waverly]

I’m pretty sure my nephew has this but I am not involved enough to be a good resource on it. It’s been very hard on my sister. He’s had therapy and an eval which was inconclusive. They were reluctant I gather to diagnose at that young age for mood disorders. There is family history of bipolar on his dad’s side, so my mom thought he might eventually get the bipolar diagnosis but nothing yet.

He doesn’t do group sports but is in trouble a lot at school. They found individual sports worked better, horseback riding, wake boarding and mountain biking. He had been doing better for a while so I didn’t hear anything for a while but the school stuff had ticked up at the end of middle school. He’s in 10th grade now.

I try to be supportive but she doesn’t tell me that much probably because like you said it’s better to talk to those with experience and they can be hard to find. She’s also embarrassed by his behavior. I still gather its overall better than the elementary years.

[vasc]

What are his current ADHD med(s)? I’ve been diving into the YouTube channel of Dr. Russell Barkley who talks at length about emotional regulation/dysregulation under the ADHD umbrella and prescribing more than one ADHD meds to provide broader coverage of the ADHD symptoms (all 7 executive functions, including emotional regulation). Think both a stimulant and non-stimulant.

[vasc]

Instagram has also started populating videos to me about Pathological Demand Avoidance, which supposedly is under the umbrella of autism spectrum disorder. The videos talk a lot about it as a nervous system disorder where child feels constant fight/flight from basic demands placed on them (internally and externally). While not quite the same as DMDD, I wonder if there is enough adjacent overlap of the fight/flight symptoms to where some of the accommodations could be helpful? Look up @atpeaceparents on Instagram.

[campermom]

vasc he takes generic Adderall extended release. Dr Thomas E Brown is another good one in this area!

Originally he was on methylphenidate and was later switched to adderall in kindergarten.

At his IEP mtg for eligibility, we all agreed that the adhd is less apparent than the DMDD, but I do believe the meds impact his level of impulsivity. We went with Multiple for OHI, for both diagnoses, as opposed to ED. I did inquire about ED. The team felt OHI was more appropriate. The multiple is bc he also gets artic for speech.

Dad is not administering the Adderall on the weekends, beginning in Feb. The mood stabilizer is undetermined, at this point. Following up on this.

waverly I totally agree about sports. He has done karate a which has been absolute wonderful for him. In fact I never needed to “explain” to instructors his issues bc it was so structured. Except when it went downhill with the sub teacher who took his belt away and he said he wanted to kill himself in the parking lot that night. I still have to hold his hand in parking lots.

[vasc]

Two parter Instagram reel about ADHD meds

www.instagram.com/reel/C41AYY_Mh8R/?igsh=MWx5aWFkd2NvbzRuNw==

Part 2

www.instagram.com/reel/C42zSU5MSlR/?igsh=b3JmM3Fjc2FsM3dv

[vasc]

Would an ED label open the door to different personnel better equipped to handle mood and behavior other than standard resource teachers? My school has an ED self-contained classroom and the teacher is WONDERFUL. But of course YMMV.

[campermom]

Apr 5, 2024 6:51:07 GMT -5 vasc said:

Would an ED label open the door to different personnel better equipped to handle mood and behavior other than standard resource teachers? My school has an ED self-contained classroom and the teacher is WONDERFUL. But of course YMMV.

very good question but no, the category wouldn’t drive services or placement. He gets counseling on his IEP, and at this point he’s still included in the gen ed setting to the greatest extent, and pulled out for social/emotional behavior support when needed. He gets push-in in gen ed. Counseling is pull out. His BIP is also in place.

[campermom]

vasc I have also been seeing some things about PDA which isn’t really talked about in the field, as it’s not really diagnosed, but I can see the automatic response when he is in a rut like 2 years ago when the simplest of issues were met with refusal or discord or problems.

I would be very jealous of other parents. Why can’t I go to the grocery store with my child. Why can’t he play on a playground like everyone else. Why can’t I do the simplest thing like go to target and go the the fitting room without sweating bc I am constantly managing. Why can’t we go to a family pool party without having to leave. But when you say you’re going to kill yourself bc you got in a fight w your sister, we are leaving.

When his meds are consistent and effective as they have been for a long time, I don’t see this kind of resistance. I didn’t realize how much relief I had, until it was gone. Now, life is harder again.

[yogilovemom]

Mom of pre-teen child with official DMDD/ADHD diagnosis but most likely suffering from BPD (borderline).  First post here because I empathize so strongly with you both campermom and barefootcontessa .  Both parents and our child have gone through extensive DBT training.  Our experience is that the child has to be fairly mature to get much benefit from the program (i.e., at a minimum, they need to accept they have an issue that needs to be addressed). Due to the toxic environment it creates for our other children, we have certainly considered many options - so I feel your decision in my soul, barefootcontessa .  We have not (yet) decided to have our child be admitted for residential care - but we are not against it.  For now, our DBT practitioner has suggested we not send our child "away" since they are too young and immature to understand.  I do feel that parent DBT training was helpful.  The biggest things we learned in parent DBT training are:  (i) Parents' reactions matter and (ii) Validate, validate, validate.  The validation is in regards to the child's emotion.  The source of the bad behavior is often not intentional or controllable (though I all-to-much realize how it manifests outwardly - in our case, we often feel like our child is manipulating/gaslighting us even though he's likely incapable).  For our child, the disorder seems to be driven from a fundamental lack of self (the "emptiness" so often discussed in BPD).  For us, we try to both validate the issue, but ignore the reaction as much as possible.  So when our child is acting out at home we will actively say "I understand you are angry.  We will talk about it when you can talk."  Then we will ignore the screaming, throwing, etc. that follows.  We will not "cave" to whatever they want. And we know as we elevate emotions, they will too.  It is exhausting.  And demoralizing.  And campermom - I struggle *often* with the resentment about my child vs. other children.  But I will say, 8 is young.  And there is much hope at that age.  Happy to be a sounding-board.  You are not alone.

[wesleycrusher]

My son (age 11) has ADHD/DMDD also. The DMDD was changed from adjustment d/o, which isn't a long-term diagnosis, but DS has attachment issues from childhood trauma that don't rise to the level of reactive attachment disorder. Psychiatrist says that the DMDD includes attachment issues under its umbrella- all that to say that a lot of DS's behaviors are ADHD (impulsive behaviors) and attachment based, and I relate more to other adoptive parents with children with attachment issues.

So he presents REALLY well in the community and at school. He has ADHD issues at school like not paying attention, but none of the violence or anger he has at home. He has never needed school accommodations. But it can be awful at home. It is isolating and it is embarrassing and people don't see it as DS is so outgoing and friendly.

We had an absolutely horrible fall of 2022 with his behaviors. I cannot even explain how much it impacted me, and my coworkers are amazing people because I would just come into work in the morning and be useless while I tried to get it together (it also helps I work in mental health, so they get it).

DS is doing much better now. Probably the bests he's done. He's had 2 great therapists recently and I can see him using skills. He takes guanfacine, vyvanse and cymbalta. yogilovemom we use the ignore strategy as well. The thing that helped us most was doing the parent training- DS would mee with his therapist and then we would have separate meeting with her. As she said "the calmest person in the room is the one with power" as getting us to escalate is always a goal of his.

[pinkdutchtulips]

Mine just finished her 3rd inpatient stay in a year - DMDD and they didn't rule out BiPolar1. The end of 2023 through the first half of 2024 have been doozies.

She sees her therapist 1x week then 2x week then 1x, etc. She and I do a 'family' session every other week. She's on Vistaril and Vraylar. The key for her will be consistently taking her meds AND keeping up w her therapy appointments. Basically, it hinges on how badly she wants to be better. At her last discharge, they wanted her to do residential inpatient. We're looking at IOP programs w DBT therapy.

We FINALLY were able to get her dx'd at 13 after 5 LONG years. Most people don't understand the struggle and think I can 'parent' or 'discipline' it out of her. She's been resistant to alot of medications bc she KNOWS by law, she doesn't have to take the meds unless she wants to. Baffling and aggravating to me.

eta - She's at her worst when its just her and I. She spent 2 months with her uncle and had zero issues. For the most part, if she's with friends she's fine too but she does have impulse issues that result in poor behavior. I know kids save their emotional unloading for their 'safe' person aka mom but I didn't ask to be verbally assaulted the way I have nor did I ask to have threats made against me physically or against my property. 

[yogilovemom]

For us, disciplining is impossible.  Negative repercussions do not work because my child does not care about anything enough that losing it matters.  And positive reinforcement also does not work because my child does not care about approval.  I *think* these are the core of the borderline emptiness they experience.  But our child also has the instinctual "no" of DMDD.  Anything and everything we ask about is met with an instant "No!".  The idea that we cannot and will not successfully discipline this child has taken us an incredibly long time to accept and attempt to parent-around.  Which is really the core of DBT:  Acceptance, then change.  Accepting that our child's brain simply works differently than both our own other childrens' and most other kids'.  Accepting that our child will not truly change or improve unless they want to.  Accepting that our other children will have very different upbringings than we would have chosen. 

In our case, we feel strongly it's borderline.  And personality disorders are oftentimes fundamentally an insecurity issue. Our child is very clearly anxious and insecure underneath all of the anger and emotion.  So we are *trying* to rebuild a connection to then rebuild their sense of self - trying to meet them in the middle where we can.  Trying desperately to find something to fill their emotional void so that they will have a stronger identity.  THEN maybe they will embrace the issue and work on change.  

The one thing that our child does is take their medication.  We often talk about/wonder about they day they start refusing.  But there is at least a thin thread of trust underneath it all because our child always takes their medications.  For now.  We use Guanfacine, Lamictal and Abilify.  We started many years ago seeking treatment for our child and was highly adverse to any medication at all.  But this protocol has definitely helped.  And I don't think they will necessarily be taking all of these forever, but hoping that they help us to somehow get to a place where they can embrace their disorder and impart change.

It's an absolute emotional rollercoaster.  Hang in there.

[barefootcontessa]

Yogi, your comment about discipline has been our experience as well. It is incredibly difficult to navigate with other children.

My son sounds very much like your child. Psychiatrist does not dx borderline because he is a teen but his therapists see him as BPD. His emotional outbursts are triggered by events. I think he does have an underlying mood disorder but I see BPD as the driving dx.

He did DBT treatment in a residential setting for three months. Both my husband and I have done months worth of DBT parent training. I feel that my son does not want to accept he truly has a major problem and he instead blames others for his issues. As a result, he does not do his diary cards or make any real effort to use his skills. I am constantly questioning why we continue with weekly DBT therapy at the cost of $170 when he does nothing. At the very least, I will be able to know that I did all I could for him.

My only advise is to keep your child away from social media for as long as possible and limit as much as you can. Social media is especially hard on a BPD teen.


Hugs to all who at suffering.

[campermom]

I’ve been reading and processing and re-reading and reprocessing. Agreed yogilovemom, hugs to those here and open arms to those reading who find this and need it, now or some time in the future. Or if those who are just curious maybe have looked up the disorder if they’re never heard of DMDD.

One of the hard parts for me is feeling like people/parents in my community judge me based on my child’s behaviors at school. What they must hear from their kids. Today I sat next to a mom at my other child’s game, whose younger child is in my younger child’s grade. We have talked for the last few games together, before she realized our other kids have been in the same class before. When she asked his name, I could tell by the look on her face that she’s heard of it.

I hope that the whole lovely friendly conversation we had for the hour prior made her recognize that I’m a good person. I’m a good parent. I’m like you.

Only I got dealt a different set of cards.

[CurlyQ284]

My son doesn't have DMDD, but ADHD and ODD. When he was younger and not on meds yet, I remember he saw a kid from school at the grocery store and I panicked and went down an aisle so we wouldn't run into them. He wanted to say hi but I made excuses and dodged them until we left the store. DS had thrown a chair his first week of school, was suspended a couple times, countless calls from school. I could not face other moms at that point in time, I thought there was a chance she would dress me down in the middle of the Kroger because of DSs behavior and when we got home I cried in the bathroom. It was so incredibly isolating, so I feel you on that ((hugs))

[campermom]

Ah, Curly…I will never forget us talking about being the sweaty mom at the playground bc our kids needed so much…intervening. I had just wished he could play on a playground. Like normal kids. You were the first person I’d ever talked to who understood.

[campermom]

I recently learned of the Matthews protocol. Has anyone here tried it? Rdmdd.org
When I first saw the website I assumed it was some sort of profit grabbing site. It’s research.

[campermom]

When did you know it was time for hospitalization?

[pinkdutchtulips]

campermom ... inpatient hospitalization? residential treatment? partial hospitalization program? intensive outpatient?

Sadly this is something I'm well versed in. It's only when she tried to harm herself that she's gone inpatient hospitalization (6 days each stay). We've attempted php and iop without any success. RTC has been strongly suggested but she would have to go out of state bc she will not go voluntarily. All the reviews I've read had me in tears.

Currently she's seeing her therapist 2x week, once a week, then 2x week AND taking her medication (Vistiral). This is the first time we've seen any real positive progress.

[campermom]

pinkdutchtulips I’ll pm. Thank you.

[jg183]

my son just turned 9 but was rock bottom at 7 and did 10 days inpatient. age 5-7 was absolutely unbareable.
I find the information on rdmdd.org the most helpful and also the dr info on there the most informative to share with my dr.
he's on quite a med cocktail right now of 5 meds but is currently very stable and dare I say normal. He is on a variation of matthews protocol plus some ritalin plus some anxiety meds. His official diagnosis is DMDD, ADHD and anxiety.
he was in a specialized behavior class for 2 years for violence but this year is finishing a year in gen ed and doing amazing

[jg183]

campermom, when i feel especially lonely i read the blog posts on rdmdd.org- my favorite are the "where's my cassesrole" part 1 and 2. those were the first times i felt seen. I have read them both so many times

[AAM2012]

I don’t have kids (not by choice.. not that it matters) or any recommendations campermom, but if you ever need someone to talk, text, vent, cry…whatever to! I am happy DM you my number, I 100% mean that, please send me a message.

(((Hugs)))

[campermom]

jg183 I needed to hear this. We are in crisis and I am stuck, bound by my ex husbands decisions. If it hurts or disrupts me even 1% while taking the child down 75%, he will take that 1%.

Thank you AAM2012. I really appreciate the offer.

[jg183]

campermom, the hardest part is finding a dr who will try the matthews protocol and it sounds like your exh wont make that any easier

but in our experience (and many others) until the brain is stable they cant access therapy when dysregulated.
My son could tell you all the right things when regulated but that wasnt very helpful. And at one point we had 10 hours of therapies a week that were not helpful because he wasnt stable. it was so much work