Written by Nita T. I am a former single mom and professional writer. The struggle to do this alone is massive and overwhelming. We found a brain-based treatment, a medication protocol, that is a miracle to our journey to stability.
“MOOOM! COME HERE NOW!” my 14-year-old son yelled.
It was early morning on New Year’s Day 2020 when I walked out of our hotel bathroom to see my 12-year-old daughter on the edge of death. She was standing on a flimsy patio chair with one hand on the balcony railing, hovering over the edge.
One slip, one stumble, one wrong move, and I’d be telling a very different story.
I emitted the most blood-curdling scream and ran over. “STOOOOP!” I wasn’t thinking about how it could have startled her enough to lose her balance. She fell into my arms, sobbing.
Her fits had taken a near-death turn for the worse. Her brain was malfunctioning in an uncontrollable way. I knew we had to find real help this time. What we were doing wasn’t working, and I knew they didn’t have the right diagnosis.
Don’t give up
Disruptive Mood Dysregulation Disorder has ruled my family’s life for the past 10 years, although we didn’t know what it was until she was diagnosed by an inpatient psychiatrist a few days after the New Year’s Day suicide attempt.
Dear God: Thank you for saving my baby that day. I had lost so much faith in the system, in God. But that day when we caught her on the edge of suicide, I knew the only way was up. Being able to stop her from jumping was no coincidence.
So if you are struggling with faith or don’t know where to turn: don’t give up.
This wasn’t our first trip to the ER for psychiatric evaluation. She was 7 the first time when her little brain uttered the words, “I want to die. I’m going to kill myself.” She spent nine days inpatient.
Keep fighting for your child
That trip makes me heartsick and there are no positive memories or outcome. It was, at that time, so unnecessary to put her inpatient.
She was so stressed, she got strep throat. I held her for an hour after visiting time, her body wracked with a 103-degree fever. Then they made me leave. Those of you who have little ones saying these awful things, you are not alone.
As that scene on New Year’s Day plays over in my mind, it still makes my stomach sick and I cry. In a way, tears come from remembering the tragedy, but also fills me with gratitude because it was the first moment of our life-changing journey to healing.
I believe there is purpose in the madness. That incident led her to a facility where the correct diagnosis was waiting for us. One of my biggest messages: keep fighting for your child.
Keep looking for answers until you find them
I reflect back on the first go-round at inpatient psych. The reason was a reaction to the medication. But a provider was too lazy to communicate with us. She simply sent us to the ER without even talking to me.
We’ve all dealt with psych providers who are set in their ways or not willing to listen and push the same-old, same-old rhetoric: bipolar, oppositional defiance disorder, schizophrenic. You know the game.
So my advice is, if you have a provider who isn’t listening, switch. Keep pushing for answers. You know your child. You know when something is wrong and when they are wrong. Go with your gut. I can’t say that enough.
Look for silver linings: there is hope
I was helpless for so many years and knew they were misdiagnosing my daughter. Ironically, in 2020 — a year filled with adversity – we found healing.
I had no idea how much hope was around the corner in 2020, in spite of a global pandemic. I learned to look for hope instead of focus on the negative.
Our nearby psych hospital didn’t have a bed. I didn’t really want to drive two hours away, but that was our only option. And yes, I visited every single day, juggling work and sanity while being there for my child as much as possible. Her step-siblings came, too, as well as her stepfather. You can read between the lines there.
The drive gave me determination. The psychiatrist there was different, a gift from God, I believe. And that place was where a psychiatrist gave us the correct diagnosis: DMDD and autism spectrum disorder (knew that and argued the point many times with every single provider we’d had previously) with pathological demand avoidance (which goes hand-in-hand with ASD).
As a journalist, I knew how to research and pored over pages and documents and testimonies about DMDD. I joined every DMDD support page I could find.
You are not alone
We endured everything most of you have: physical assaults, destroyed electronics, damaged furniture and fixtures, holes in the wall, physical ailments due to the abuse we’ve endured, embarrassment, judgment from family and friends, and the general public. The stares, the whispers, the admonishments from others. It is pure hell.
All DMDD parents have been at the breaking point. You are not alone.
I came to understand that all the spankings in the world, time outs, and removal of belongings did nothing to stop the brain malfunction. Physical discipline is the absolute worst thing you can do. In the aftermath of diagnosis, I’ve had to go through my own healing from feeling the waves of guilt over past parenting mistakes.
Keep moving forward
Healing takes time. It just does.
Just as I was at wit’s end, we discovered a medication combination known as Matthews’ Protocol. Nothing else worked, so why not try this. I pushed for it with her provider, who was willing to try anything, too.
She started her on Trileptal, an anticonvulsant. Within two weeks, she was a different child. A few months later, an antiviral called amantadine was added.
At this point my child is at 1500 mg of Trileptal (600 a.m., 900 p.m.), 200 amantadine (100 a.m., 100 afternoon) and 5 mg Lexapro at bed with the Trileptal. Going up slowly allowed us to adjust well. About six months ago we added birth control (for pain) and it helped tremendously with her mood.
Her teachers love her. She’s done well in school. She’s still sleepy a lot. But this year, she tested into honors math for eighth grade. She’s finding her groove in school.
Best of all, she’s happy the majority of the time. She isn’t violent. Therapy is helping her learn coping skills and she’s learning to recognize her body’s triggers. We’ve adapted as a family, too. I allow her to wear headphones in public and she can leave a place if she needs (her ASD is challenging).
Her spirit of joy has returned and that has been such a blessing. I enjoy being with her. Last week when she had a blood draw, she didn’t even flinch. She was anxious, but we didn’t have to have five people hold her down like we typically did in the past.
Don’t look at the past, look to the future. You’ll likely have to walk with your child longer than other parents walk with theirs. She’ll probably live with me when she’s in college. Her emotional progress is slow but steady.
We just keep moving forward.