Life with Disruptive Mood Dysregulation Disorder (DMDD)
Most people don't know what life with disruptive mood dysregulation disorder (DMDD) is like. But if your child is perpetually angry and irritable or you walk on eggshells for fear of triggering terrifying outbursts, these behaviors may point to disruptive mood dysregulation disorder, a childhood mood disorder that can lead a child and his or her parents on a scary and frustrating journey.
The Complex Road to a DMDD Diagnosis
Diagnosing a child is hard. I'm a licensed mental health provider and I didn't even know DMDD existed. (In my defense, I work with adults, and DMDD is pretty new. See the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition changes). One problem is that disorders like DMDD include symptoms found in many other disorders. Children may get misdiagnosed with countless other things before making it to DMDD. They may have multiple disorders happening at once, so DMDD gets missed because professionals stopped looking after the first diagnosis. My own son's journey took years.
Disruptive Mood Dysregulation Disorder and ADHD
There is no debate my son has attention-deficit/hyperactivity disorder (ADHD). Look up ADHD diagnostic criteria, and there might as well be a picture of him next to it. Stimulants and behavior modification weren't getting at everything, though, and ADHD didn't quite capture his intense moods.
For awhile, the doctors thought it was just depression. He exhibited many of the childhood symptoms: irritability, sleep difficulties, and suicidal thoughts (Recognizing Symptoms of Depression in Teens and Children). They also diagnosed him with anxiety. This is common: both depression and anxiety are seen in kids with DMDD and ADHD. He still holds the anxiety diagnosis.
The biggest problem, though, was anger. My son was angry when he was depressed. He was angry when he wasn't. He was angry at home and school. Anything could trigger outbursts that ended with our house in shambles. The outburst that got him hospitalized happened in the car, seemingly triggered when my daughter started humming. My son started screaming, unbuckled himself, and began assaulting the both of us. He didn't stop until we were in the Emergency Room and security guards isolated him in a back room. To this day, he doesn't remember having that outburst or why it happened.
DMDD and Oppositional Defiant Disorder
By the time he was hospitalized, my son had already been labeled with oppositional defiant disorder (ODD). The main indicator was his interactions with authority. His outbursts tended to happen in response to teachers or parents. It never happened with other kids.
What a psychiatrist at the hospital pointed at, though, was the intent behind his defiance. Kids with ODD deliberately defy or annoy others. My son's intent wasn't to deliberately hurt anybody. He suffered from rigid thinking, anxiety, and an inability to control his emotions. In fact, he usually felt deep remorse and shame after coming out of his rages. He's not a defiant kid. He's a dysregulated one.
Treating Disruptive Mood Dysregulation Disorder
One thing that pointed to my son's DMDD was medication. It's a weird system when the way to confirm a diagnosis is to see if the treatment works, but that's what happened. The psychiatrist put my son on a mood stabilizer, and there was an immediate effect. As a mental health professional, I knew the side effects of the medication they prescribed. I was scared. However, the effects absolutely outweighed my fears. We have moments of peace at home now. Outbursts do happen, but they're fewer and less intense. Even better: my son seems capable of feeling content.
Life with DMDD is complicated. You have to work closely with doctors, schools, and family when dealing with a disorder this intense and intricate. It's the only way to get it diagnosed appropriately. It's the only way to manage it, and it's the only way to keep from being overcome by it.
David, M. (2017, May 1). Life with Disruptive Mood Dysregulation Disorder (DMDD), HealthyPlace. Retrieved on 2023, December 1 from https://www.healthyplace.com/blogs/parentingchildwithmentalillness/2017/05/walking-on-eggshells-life-with-disruptive-mood-dysregulation-disorder
Author: Melissa David
So proud of you Melissa!!
Would you be willing to share which mood stabilizer has worked for your son? We are in the same position and the various side effects terrify me.
Hi! Sorry it took so long, but I posted a response about this to another comment above. :)
Thank you! We just started that too. What dose have you found works? Any side effects? Does it help with his anxiety too or is he on something else for that? Apologies for so many questions but we're new to this diagnosis and it's difficult to find real people who are dealing with it successfully. :)
The quick release dose made him SUPER TIRED. He'd drag himself into bed at night when he was previously a kid who never slept. Now he's on extended release, and he does sleep, but more like a regular person.
When not on his stimulant, Seroquel also makes him eat A LOT. This is usually fine because he gets sooooo skinny on the stimulant, but if your child isn't on a stimulant, you definitely want to monitor for weight gain.
Check Facebook groups. I found a great one with lots of families willing to share their stories and advice. Every child is different, but you can feel less alone knowing other people are going through it, too.
What are some good groups to join.
My son has this and has been in two out patienc programs and in a in patienc program and the he is on meds he also had ADHD dmdd and asd and it's like the meds r not working
Meds work different for each kid. It's one of the toughest things about treating mental illness! It can feel so hit-and-miss. At the same time, it's worth talking to the doctors and team about whether he even has the appropriate diagnoses. If you treat someone with asthma with the medications you'd use for diabetes, it'd obviously not work very well and come with some terrible side effects. The same goes for mental illness. Maybe there's something else going on. Hopefully it doesn't take too long to figure out. I know how stressful and hard it is. Best wishes to you and your family!
This was such a wonderful description of what it is really like. Thank you.
I feel like I should comment because I read and re-read this exact blog piece again and again. My daughter is 8 and has anxiety and dmdd. She is hypersensitive to sounds and also attacks her sibling, often in the car. We, too, ended up in the ER and a 5 day hospitalization. Your blog so perfectly captures life with a child with this disorder. Thank you,
jenn if you want to talk, I am here, my DDis 11 and we have been on the same journey! email me anytime! It is so lonely some times...
Hi! Thank you for sharing your story, I can relate. Our son is 7 and we are currently trying to find a dr. that will accept State insurance, so that we can start looking into medication. It breaks my heart to watch him battle these demons. He is such a sweet boy, and deserves to be happy.
If you are willing to share, I am so curious about which medication he is on, the adjustment period and the different side effects he encountered. Thank you
Please keep in mind this isn't a good replacement for doctor's advice, but my son is doing well on Seroquel for his mood. They recently put him on Intuniv for ADHD while he was on a stimulant holiday, and it's super mellowed him out...though it also made him very sleepy for the first few weeks.
Thank you for sharing your story Melissa. Your description and what you have been through describes what life in my home has been like for last several years with my now 9 year old who doctor finally gave him this diagnosis. He was hospitalized 4 times last year just months apart each time. The last hospital put him on depakote, intuniv, clonodine, n couple others that he no longer takes. He came home n things had gotten worse n not better. His dr made changes to his meds but then he was sleeping all the time. More changes were made but then he gained too much weight n was still getting explosive out bursts that we could not control. Finally at my request dr took him off the depakote. She switched him to geodone twice a day, clonpdine 3 times a day, and trazadone, and I am happy to say things around my house are so much better. He stills has occasional oitbursts but they are much more manageable and way fewer than before. Before proper medication he would get so angry, he would run out on to our busy rd n throw rocks at cars plus run in n out of traffic or he would attack us or his brothers or other kids who happened to be in target area. He didn't always show remorse right away but he also rarely remember what he had just done or why he did it.
It is good to know that we are not in this alone. Now to get the school to understand his diagnosis so they to can better serve him and help in school.
It’s so tough! But hearing stories like yours also makes me feel like we’re not alone, and it makes me feel like my son isn’t “unusual”. What they’re going through is rare, but the more we understand kids like ours, and open to others for help so that they can figure out new methods, the better life will be for them (and us). I hope things continue to go well. I can tell you that 8-9 years old was definitely the worst years for my son. He’s doing so much better now (nearing 11), and when I mention things he used to do, he doesn’t remember them at all. He can’t believe he used to have much worse outbursts. So hopefully that gives you some hope. Best wishes!
Dose he take Seroquel in the am
Or at nite
My son is 8yrs old and we were just diognosied this summer. Life is one really big roller coaster for us.Glad i came across you. I look forward to following you.
After reading this I was glad to know that I was not alone in this journey. Roller coaster would be putting it lightly. I have been looking for a support group so that I don't feel so alone when my daughter is having outburst. I will be following you all. She is on a mood stabilizer and ADHD medication
I know exactly what you're going through. I feel so alone at times because I have no one to relate to or pick their brains on the things their child does that may be similar to my child
Check Facebook groups. I found a great one with lots of families willing to share their stories and advice.
Wow it it feels really good to know there are other parents dealing with the same thing just like me. My daughter was diagnosed with ADHD and ddmd a couple of years back. We focused so much on the ADHD and so did her therapist at the time I never really paid attention to the ddmd and what it was all about. She has always had an outburst and it seems like they are just getting worse, she is always agitated or gets annoyed easily, and definitely does not understand sarcasm or when you are just joking with her. She is going to be 7 in the next couple of weeks. She is currently seeing a therapist monthly in which I think I will have to go with taking her every two weeks now because of her outburst. We have tried doing medication for the ADHD but she seems to always have a side effect. So now it worries me to think of having to put her on a medication for the DDMD? I always feel so bad having to punish her when she gets in trouble. I feel like she is constantly getting in trouble even if I give her mornings and different tools to try to help her make smart choices. Do any of you have any suggestions? How do you discipline your child?
I am so glad that I found this. I feel for every child and parent who is struggling with this, yet feel so relieved to find that my daughter is not alone. My baby has always been so sweet and happy until bam one day a few years ago she was just angry. Since then she has just become a ball of anger and sadness. It tears me up. She feels so awful afterwards too and never remembers exactly what happens. It was when she was hospitalized that we were blindsided with this diagnosis. But it makes complete sense now why nothing else was working. She was on celexa which did not work, now she is on abilify which seems to be working less every day.
Glad to be able to re- read this during the holiday "break" . Wish there was more information out there . More research, more knowledgeable therapists and psychiatrists. The holiday season ( no school, family who doesn't want to be around, think he's "fine" until the screaming starts and they can get up and go home), watching my son binge endlessly while others enable with chocolate etc. ) . Parents, keep trying. Keep taking care of yourselves every chance you get , keep holding onto hope that the development of these complex brains and advances in the field will give all of us ( our children, their siblings and parensts) some future
It's 3 AM and as usual, I'm wide awake thinking about our almost 8 yr old and what more can I do? He was diagnosed with DMDD earlier this year. He's in his 3rd school. His challenges started just after he turned 5. I haven't and refuse to give up hope! I will follow your blog... although I wish there was an in-person support group.
Our son was diagnosed years ago with High functioning Anxiety and inability to focus type ADHD (low level). As he has gotten older and involved in different situations we have not seen the anger or outburst subside. If anything they get worse and he has destroyed almost everything of value in his room. This past week his Doc said DmDD thats what he has with high levels of anxiety. The result new meds. Abilify we tried worked with awful side affects. We start a new one tonight. Things that work for us is making sure our son knows that in weekly therapy he must learn to own his actions and not point the finger. We also keep him very active, tight consistent schedule and healthy diet. Very low sugar, no nitrates, GMOs, or perservatives. Fish Oil pills help the brain as well and he takes 4 day. I am glad we are not alone nor is our son because sometimes it sure feels that way!
What was the new medication and did it help? I find that Abilify isn't the best fit format daughter.
Risperdal was the other med and it didn't work at all.
My son is on 30 mg of Adderall for his ADHD zolf for his anxiety 3 pills of Depakote a day and ability and clonidine and he has gained a lot of Wight
My daughter was diagnosed a month before her 18th birthday after having various labels since age 4. No one wanted to label her. Depression. Anxiety. ODD. OCD tendencies. Possible ADHD. No one would say BPD or bipolar. Now that she’s almost 19 she is without a diagnosis again. Why does she need one? Bc no treatments have helped enough. She is irritable. Has outbursts (dare I say tantrums). Is dysregulated. Nothing fits. It is so frustrating.
Hi Susan. I work at the mental health field from an entirely different angle: I’m a psychoanalyst. The issue about the diagnoses not fitting is very common and the reason is that those diagnoses were categorized into different names to help psychiatrists communicate better about their patients. However, rarely do life situations fit textbook categories. I’ve seen this frustration often in parents and patients themselves, and what I tell them is that the most important part is to get the right medical and therapeutical treatments. The name of the diagnosis is not that important and, actually, sometimes it can even be constraining.
My 9 yo son just got this diagnosis. Not completely sure it isn’t bipolar disorder, but this is what the psychiatrist went with. I’m hoping for some sort of improvement.
My nine year old was just diagnosed with dmdd I’ve been to many doctors I’m been doing my own reading up on trying find ways to deal with outburst and he’s anger the doctor put him on intuniv it didn’t seem to be working she upped the dose I’m see how tht works. I had episodes where he pushed me but he doesn’t remember I’m dealing with this on my own I have two other kids sometimes living with my son is unbearable is always moody and irritable he snaps when u just saying good morning he never wants to be bother I get so frustrated bec my son doesn’t get along with no one teacher even had to move he’s seat away from everyone it’s always something he’s getting into fights he has a lot impulsive behaviors. He’s dad bipolar he doesn’t even help me . All I wanna do is try to just be their for my son the best I can I don’t want him to help no one.
Our son was diagnosed with ADHD Combination, a specific learning disability, a speech problem between the ages of 4-7, about age 8-9 he was further diagnosed with processing deficits in addition to everything else. Things had been going okay, but then at age 11 he was diagnosed with autism at a low level and DMDD. Dealing with all of this has been a big challenge. He is on adderall and tenex and the combination seems to work at least at school. At home he is more prone to outbursts especially with his mother. He also is in ABA therapy. We are hoping that meds, private counseling, special day class for school and ABA will be the turning point.
My son has gone from a near perfect baby, to a very aggressive toddler, to attempted homicide and suicidal thoughts at age 4. He’s been on lots of meds since; now age 10. If I say ‘Good morning. Hi, how are you? Did you brush your teeth, or any seemingly benign statements, he yells, calls me names, pushes, tries to trip me, raises his fist in my face, etc. He was hospitalized, but behavior picked right back up at home. I think I’m going to have to place him in a full time facility or foster care. My daughter and I do not feel safe around him. My husband was tempted to ouch him to get him to stop, but didnt. This is leading to a severe fracturing in our family, and I feel that we will be split up over this at some point. The parents are at an impasse right now. So, I seriously need some help here, or I’m not going to stay sane.
I’m so sorry to hear this. Do you have county services in place? I’m not sure where you are, but county services can help with referrals to more intensive treatment. Each kid is individual, so it’s so hard to tell sometimes what might work and what won’t, and you always have to consider the safety of everyone involved. It’s so hard. You’re not alone, though I know it feels that way. Best wishes to you and your family.
My heart goes out to you Christina. I can tell how difficult and desperate you feel. I know what is like to feel powerless and how torn you must feel having to make difficult choices and decisions while thinking about what is best for your family and your son. It is hard and heartbreaking going thru what you are going thru right now. Try to find the support and love from the rest of the family and your community. I found this page online https://www.psychiatry.org/patients-families where you can do research and search for resources in your community. It also has a link for finding psychiatrists in your area. Stay strong and God bless.
My 14 year old son has severed ADHD, DMDD, generalized anxiety disorder, and some autistic traits. He get furious in the morning when we have to wake him up for school. We see an excellent child psychiatrist but none of the many drugs we've tried to help his mood have done anything for him except make him sick or give him high blood sugar. Our daily lives are miserable. I'm always run down and stressed out because of this. I'm sorry to say this, but I really feel like our lives are ruined.
I’m so sorry to hear that, Courtney. I hope you have a good support network of friends and family. If not, your own support group or therapist might help, too. It’s so hard to raise children like ours, and it can feel very lonely. Treatment feels like it’s part science/part art because it’s so different for each kid. Something exists out there that will work for him, and in the meantime, take care of yourself as best you can.
My son was diagnosed with ADHD and DMDD around age 5 1/2. He is almost 9 now. Does anyone find that their DMDD child is able to control themself for the most part around one parent or the other? My son shows these behaviors to me (his mom) on a daily basis and doesn't seem to be able to control his anger and outbursts, but he won't dare do most of these things around his dad. He listens to his dad, is normally very well behaved around him, but when he is at work or not home, the behaviors constantly arise around me. I am mentally exhausted and feel like I am about to lose my mind on almost a daily basis. He is on ADHD meds which help him to focus for periods of time, but they do not lessen his outbursts or anger.
My son is typically not able to control outbursts at all. There are some behaviors he controls, and he does the to pull them out more for me than his dad. Those behaviors are more of the ones you’d see with oppositional defiant disorder. DMDD outbursts, though, are by definition out of the kid’s control. It’s hard to know for certain in every case what’s happening, though. If he has a therapist, it’d be worth talking with that person about the differences you’re seeing. They may be able to pinpoint it.
WOW! God sure answered my prayers today with finally getting an accurate, spot on diagnosis for my 13 year old son. I am so happy to have read all of your comments so that I know we are not alone. Life has been pure hell for years but in the lady year it's gotten really bad with the explosions over very minut things. It is so unpredictable and has become more scary with each episode. We start on a mood stabilizer tonight and we are praying for relief. Our marriage has suffered because life is always in turmoil in our home. Constantly walking on egg shells to not set him off. I look forward to following this blog.
So glad to hear! Sometimes, all it takes is that correct diagnosis. Here’s hoping the meds work.
We have started on Depakote 500mg. It worked beautifully for about a week but then he began having outburts again. We are now at 750 mg per day which we just started on Thursday. My question to everyone is with this diagnosis, what causes the hyperness? He is not ADHD. He is wired from the time he gets up until he goes to bed and he always has been. There are not enough activities in a day to keep him occupied. Does anyone else experience this and if its not ADHD, how can we treat it? I think if we could figure that out then we could see a huge improvement overall.
Oh my gosh, Kelsey, I somehow missed this comment! It’s hard to know about hyperness, but DMDD can look a lot like bipolar disorder with “manic” episodes. That’s why mood stabilizers often used for bipolar disorder (like Depakote or the one my son is on) are often used. So he could just be having something that looks like a manic episode. My son has ADHD, so his hyperness definitely stems from that and is controlled by ADHD meds. It’s different for every kid, though, so keep consulting with the doctor and child mental health professionals!
Please may I share, if traveling with child diagnosed with DMDD and visiting family, give them information about the behavior they might witness or might occur during vacation. The child was in a new environment & different schedule than at home, plus family visited Disney World on Sun, Tue, Thu for entire day. The lad is ten. As I had only seen the boy in his own home environment twice before, I was unprepared for the outbursts and manic behavior. Besides DMDD, he's been "labeled" with other childhood mental health behaviors. I could have been more understanding, tolerant, and patient. I love the boy, not the behavior.
I agree! It's important to prepare family and friends for behaviors they might encounter, and you have to trust the people you're sending your kid with to know how to manage tough behaviors. Not to mention places like Disney World can be extremely overstimulating, so you have to prepare for that, too. Some kids take noise canceling headphones or need breaks in quiet places throughout the day. Not only would be people be more tolerant and prepared, like you say, but it's best for the child, too, if everyone knows what to expect going in and how to handle it.
My daughter is 11 bright athletically talented and has been diagnosed with anxiety, depression, ddmd, odd, and ADHD. Currently she takes clinodine and abilify at night and lexapro and Contempla in the am. Had a terrible outburst on the way home from family vacation which resulted in me having to retrain her in the backseat to keep her from running off "for help" bc she felt like she was getting treated unfairly.. we have 5. Was not in our home state when this happened plan is to go to psych hospital when we get home .. has been there for the last 2 summers for a week each time..was really hoping this year would break the cycle .. guess not. Open to advise or med change suggestions..anything its destroying our family and so painful to watch my child go thru this!
This is so hard. I’ve been in your position, and it’s scary. The psych hospital turned out to be the best bet for my son because they got a longer-term look at his behaviors and could talk to him for more than 15 minutes. Over the summer, a day treatment program or partial hospitalization could be options, too. They combine medication management with therapy, education, and sometimes parent support or portions. Meds are hard all around, though. Finding the right combination is key, and everybody has a different response to individual meds. What works for one kid won’t necessarily work for another. It’s a tough journey, but it’s possible to get to where you wanna go!
Hi i am raiseing my grandson who is 8 and we were told yesterday that he has dmdd and adhd we go monday to see the doctor on what meds he will be on. I need advice on things i can do and all the info i can get .thanks