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 2024, February 24 from https://www.healthyplace.com/blogs/parentingchildwithmentalillness/2017/05/walking-on-eggshells-life-with-disruptive-mood-dysregulation-disorder
Author: Melissa David
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.
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
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...
This was such a wonderful description of what it is really like. Thank you.
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!