Exhausted DMDD/ADHD: My daughter was... - CHADD's ADHD Pare...

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Exhausted DMDD/ADHD

LauraDass profile image
9 Replies

My daughter was originally diagnoses with ADHD at 6yo. starting about 71/2 yo she started getting violent, hitting, kicking, scratching, biting and yelling at t he top of her lungs anywhere form 30 min to 2 hours at a time. its like she is a different child when she is in a melt down. Originally she was having at least 3 a week. We have changed meds a few times and now she is down to about 1 a week. The Psychiatrist recently diagnosed her with DMDD (Disruptive Mood Dysregulation Disorder). She literally checks every box on the symptoms. I did some research and requested that they do the Dr. Matthews Protocol which is an anti-seizure med along with amantadine. Unfortunately I have to wait for her to start puberty so I just have to deal with it until then.

Is anyone else going through this and do you know of anything that helps. She does regular therapy and we have already dont PCIT Parent Child Interactive Therapy and TBS Theraputic Behavioral Services. None work. she is very good at manipulating the therapist and saying what they want to hear and then going home and causing havic.

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LauraDass profile image
LauraDass
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9 Replies
Onthemove1971 profile image
Onthemove1971

Thanks for the message. Sounds like you have been through it. Sounds like you are ready to try anything to help her be more successful.

Just curious, is she on a stimulant and non-stimulant? Or what type of medications ( sounds like you have tried a lot) have you tried?

I don't have many answers but would really like to give you a hug and tell you I have been through the screaming tantrums that are so hard to deal with.

Best of luck in finding something that works.

We are always here for you and hope someone can help you.

Take care.

LauraDass profile image
LauraDass in reply toOnthemove1971

Awe thank you so much. I try to look at the meltdowns as its not her it is mental illness that is doing that and just keep hope for the future. Right now she is on Ritalin, Lexapro and Clonidine. She has tried Concerta, Straterra, Intuniv (Guanfacine). They either gave her bad side effects (vomiting headache) or didn't do anything to help. This regimen is okay but definitely a Band-Aid as it only slows it down. She is still going 1000/mph. Thank you for your support.

arrh121 profile image
arrh121

How is she in school? My son had similar challenges like this at home but would always be good in school. We found that stimulants were not helping him and our psychiatrist had him go on a non-stimulant combination (guanfacine ER and atomoxetine) which, combined with some maturity from getting a bit older, has helped improve his behavior significantly. He used to have 30+ minute outbursts but now they pass quickly. It's almost like the meds give him a little extra time to consider his behavior.

LauraDass profile image
LauraDass in reply toarrh121

School she is okay. She struggles with every subject and has an IEP. Cant focus at all, the stimulant helps the focus slightly but not enough to make a big difference. She has issues following directions and doing what she is told, but not bad enough to get into trouble.

marinecyan profile image
marinecyan

You’re doing so much to support your daughter. It’s so disheartening when things that should help, don’t. My son is also adept at not being honest with his therapist and at times I wonder whether it’s worth the money.

I don’t know if you’ve looked into nutritional support at all but my son was very explosive and aggressive until he started taking a very low dose lithium orotate (1mg/day) as well as a methylated folate multivitamin, omega 3’s and a few other supplements. He’s doing so much better and almost never has big outbursts anymore.

We used the book Finally Focused by James Greenblatt as our guide. He also has a website with lots of information if you just Google “Finally Focused”. Nutritional and gut imbalances are common in kids with ADHD and can prevent medications from working.

Hang in there!!

LauraDass profile image
LauraDass in reply tomarinecyan

I will look into this. Thank you so much.

SanityCoaching profile image
SanityCoaching

Your experience is a doppelganger to mine. My daughter has ADHD, DMDD, Acute Anxiety, Depression and OCD. She is now 14, so we have been going through it for a while. I want to tell you that it gets better, and it does, and it also gets worse when its bad. Some of of the anger and resistance is normal teen angst, but turned up to 10 because of DMDD. We have not tried the protocol you mentioned and I am interested in it. DBT Therapy has helped us a lot. Working/living the skills it teaches has been a game changer for us. But she is still veery volatile - the tools just help diffuse it faster and earlier. We are also now now doing TMS which is supposed to help with the OCD, anxiety and depression - I'm praying that if those improve the DMDD will as well. In addition we are changing up meds, which is a nightmare because she has to go off what she's on while slowly increasing the new med - which means there is a window of time when TMS and the new meds are not in effect yet and the old ones are at ineffective doses. We are just battening down the hatches until we are able to get her stabilized again. The upside is that she has learned so much through therapy, DBT and getting older that she is able to know when a mood is coming on and say as much - usually it comes out as "go the h*** away, I'm in a mood". But hey, its better than the alternative. None of this may help, but at least you know you are not alone. I have found DMDD to be the most isolating as a parent because other kids and parents don't understand that the anger is not controllable. They will either blame our parenting for her outbursts or she will be "un-forgiven" for outbursts she may have. I'm sorry your family has to experience this, just know you are not alone.

LauraDass profile image
LauraDass in reply toSanityCoaching

Thank you for this. Yes it is so lonely and traumatizing, that we just have to deal with, with no guide, help or assistance. I feel like even the therapists don't really have any good advise. Her main therapist still says she thinks it is PTSD from when her birth mom suffered from domestic violence while she was pregnant. if it is that then it will just take years of therapy that she is just not willing to do at this point. You should defiantly look into Dr. Matthews, when you read his breakdown of it, its like they are literally describing your child. I have heard quite a few parents say that it is life changing to use the meds he suggests. I do want to do DBT but they also say she is too young. So it is a waiting game.

Her therapist thinks your child has PTSD from when she was in utero while her mother was being physically abused? Oh my gosh. I had no idea that could happen. I am so sorry. Your situation sounds very stressful. I hope you find some solutions.

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