Life with Disruptive Mood Dysregulation Disorder (DMDD)

Hi. I'm raising a grandson who is now 9 going on to 10. He was diagnosed with anxiety and spd. Also Has major nutrition issues. Has been in therapy, did ot for nutrition and spd. Began meds, took them for a while& now has refused them completely. Has been to er behavioral 4 times in a year span. We are now pending an asd evaluation. As I read your article it makes me wonder if that is what he has. His moods are off all the time. Would you be able to tell me if through this next eval they will be able to detect if there is a different disorder? Thank you for sharing your story, I certainly can see we are not alone.

I am SO happy I am not the only parent dealing with this. I don't have an "unusual" child and that's such a relief. I haven't found anyone near me that has a child with even remotely the same issue as my daughter. She's almost 7 years old (dec 13) and We've been through about 5 diagnosis (ADHD, ODD, etc...)and tons of time at the psychiatrists to get where we are. She's just started counseling for DMDD (we got the diagnosis late summer of this year). I'm terrified to start medication, but things are so bad that I'm thinking that we are at a point where I have no choice but to allow it. Parents doing in-patient care, how did you do it? I've almost been to the point of having to admit my daughter on multiple occasions, but I just couldn't bring myself to do it. I'm sure there is serious separation anxiety, anxiety in general, but we haven't quite made it that far. My daughter currently isn't allowed in the public school system where we live because of the outburst and violence toward teachers. She's also a "runner" which makes her a flight risk for the school. "A danger to herself" they say. She sees a tutor for one hour a day, 5 days a week, to attempt to keep up with her schooling. She's violent toward her siblings, but doesn't ever seem to know why and immediately shows remorse. Outings are difficult because I don't want to trigger her with something i didn't know was a trigger(we are constantly learning new ones). It's frustrating. She also doesn't do well with large groups or noises. She can't have too much going on around her. She's been tested for ASD and the doctor said that because she could keep eye contact for an extended period of time, that wasn't the problem. OT has been suggested, but we have to have a referral to get her in to see one. (state insurance). Anyway; it's just amazing to have other parents that understand and can related to what we deal with on a daily basis. It's one of the most frustrating and challenging things i've ever experienced in my life.

How do you get help if nobody is willing to work with you. I have so many people telling me so many different things and a husband who has PTSD and a TBI so he is not very helpful. I feel so lost and I am so tired of the lies and embarrassment my 13 brings. I love her and would never give up but I feel so defeated all the time.

Our son has been diagnosed with DMDD already about 4 years ago. We use medication. I dont want to sound selfish, but we are at a point where are really struggling to deal with it all. We can really use some kind of support group or just anybody who is going through this to provide a listening ear or just provide us wih some guidance in how to deal with our emotions, the school and all the other people around us. Anybody is aware of such an online community?

My 11yr old had been diagnosed 2yrs DMDD, what a bumby road we traveled on to get the proper care and diagnosis. She has been on a few different medications that actually did not work until we found risperdone. It is a 21hr medication so her doctor has her on it twice a day so there is no laps. I cant say that it is the end of all because she has her mood swings every day sometimes multiple times a day BUT I know for a fact if she was not taking the medication she is 200% worse. I lost my insurance for 3 months and was literally the worse!!!! Just last week she had a outburst in the car, she tried to wrestle my phone from me to call 911, I am a horrible mother and I belong in jail because I didnt buy her an ipone, UGH! Nevertheless I almost hit a car, that was the first time that something like this happened and really scared the crap out of me. Her punishment was and is that she will NEVER sit in the front ever again. I must say that she is a daily struggle and causes a lot of term oil in the other with her two other siblings including my husband. I honestly feel like giving up A LOT! I have a few good support members of my family, some dont think that DMDD is real and that she is just spoiled and needs to be punished more. I have a great counselor and doctor. Being completely honest once a week I read the symptoms of DMDD to remind myself it is something she cant fully control. I hope and pray to GOD a lot that she will grow out of this because the teenage years ahead really scare me!

My son is 13 and was only diagnosed w/ DDMD this past year. He's had a diagnosis of PTSD & ODD for years, but we were reluctant to turn to medications. (We thought we had to fight the stereotype of an adopted child from therapeutic foster care who acts out SHOULD be medicated into a passive stupor)
He made great strides in Elementary but as Middle school expected more independence and organization of him, he began a downward spiral of defiance and outbursts. The school focused on minimizing the amount of disruption he has causing the class, they moved him to classes that had less structure so he could "learn" independent working and organizational skills. The reduced workload mentally board him resulting in him working down to expectations and mimicking behaviors of other disruptive children in order to get attention.
He is now in his 1st year of Junior High (8th grade) and as expected with the onset of puberty came ramped up behaviors. He is now my height and 1/2 a foot taller than my wife. He has the intellect of of one slightly above his age in raw knowledge, but due to a late start in school and socialization before being placed in foster care, he is behind his peers in reading, a choppy writing style and common place ideas (metaphors, inferences, etc.).
Emotionally he is around 3 years behind his peers. We tried to have the school hold him back in 1st grade so he would be developmentally better able to handle environmental situations and peer interactions, but to no avail.
We face the same situation now. The school is focusing on his organization and record keeping of assignment rather than making sure the work GETS Home. We can make sure he does it and that it leaves the house with him, but we can't make him bring it home or turn it in. (The grades he gets for the work that he has passed in are A's & B's)
It's the oppositional defiance behavior that has him refusing meet the organizational goals they ask of him. At this point we knew this was beyond us and therapy alone.
The Medications help... to a point, but he is still having almost daily outbursts with teachers and has tried to use his size to intimidate my wife.
He wants to do the same things with the same freedoms of other teenagers. But we don't honestly trust him to maintain control with out one of us around for more than an hour or two.

I just found your blog out of complete desperation. My daughter, age 8, was just diagnosed with DMDD yesterday. This diagnosis was a long time coming. It's been absolute hell for a couple years. I am a single mom two her and her brother who is 12. He is very unsympathetic and really bullied by her when she is acting out. She turns on a dime and gets angry and has ourbursts over the smallest more illogical things and it's totally unpredictable. Both my son and I are walking on eggshells. I live on the other side of the country than my family. I have a hard time making friends because my daughter is always with me. Did I mention she has major seperation anxiety and refuses to stay with anyone else. My sister would take her even if she was acting up but she's the only one and she's 2,000 miles away. I recently broke up with my girlfriend of a year because of it and I was just told by my mother this week that she doesn't want us to make our yearly summer visit if my daughter doesn't "get her act together" beforehand. I feel so incredibly alone and I find myself in tears the last few years because of that. This is why I sought out a support group of parents who are dealing with similar issues and feelings. I am am so tired and feel helpless. This just sucks!

My son was diagnosed at 4 and then 6 for ADHD. I knew he had it before he was even 1. I was diagnosed at his age with ADHD. He attends a school for emotionally impaired children and he was put on half days because of his agression. Psychiatrist thinks he has DMDD and I'm positive he does. He had been thrown out of numerous day care facilities as a small child and had a lot of trouble in public school preschool and kindergarten. He has a genius level IQ. Dealing with this for years and it's draining. Almost cost me a marriage. I'm blessed to say I'm still married and my husband is supportive. Have my MSW also but can't work because of the half days and calls from the school.

Our 13 yo daughter has GAD and DMDD. She spent 89 days at a residential behavioral hospital this fall. She is having daily outbursts and my asking her to using coping skills is a trigger.UGH Her twin sister and older sis, 14 yo are suffering daily and tired of her antics. My husband and I are struggling to deal with her moods. SHe is getting ready to start a DBT group ...any insights for the siblings and moving forward