Overwhelmed and in need of advice please!

[Julesverne]

I have an 11 year old son who was diagnosed with Temper Dysregulation Disorder about six months ago. He's been in therapy for years, and his therapist has said numerous times over the last couple of years she thinks he has a mood disorder. The original testing results, which were conducted when he was seven (first grade), were ADHD, anxiety, and they also indicated he was on the autism spectrum for Aspergers, high functioning. The original testing was done by a psychologist. We have tried anti-anxiety medications and medications for the ADHD, but only after a couple years of counseling and behavioral therapy first. I have always been reluctant to try medication; it made me nervous. While the medications seemed to help somewhat, the more pervasive issue/problem has always been the mood piece. He has extreme reactions to things, he rages over what others would see as minor - whether it's food he doesn't like, clothes that don't feel right, something not going the way he thought it would, his brother saying the wrong thing to him, losing at a game, not being able to accomplish a new activity, etc. etc. I had hoped some of these things would get better with age, but it's actually the opposite - his behavior is worse than ever, and it's affecting our entire household. I have two other boys, a 13 year old, and a 3 1/2 year old. The 13 year old never knows what to say to him because a comment which would bring a laugh on one day will cause a major meltdown on the next day, and the 3 1/2 year old is either scared or picking up bad behavior. I am tired and sad. My son is not currently on medications; he has been off since November. According to our psychiatric (I like him very much - he is cautious when it comes to medications and was a pediatrician first), the next step is mood stabilizing medications. I wanted to take a break and see what happened. It is now 3 months since my son has been on any medication, and therapy, behavior modification, consequences, positive reinforcement - whatever we try, it doesn't make a difference really. I feel beaten up emotionally - my son is very emotionally and verbally hostile. From what I've been reading, there's argument over the whole "TDD" diagnoses. I don't think my son is bipolar as he doesn't display the manic episodes. Between the rages and the extreme outbursts he displays a general negative attitude toward things. He's very difficult to be around these days. He does, however, really enjoy sports and loves to be outside throwing around a ball. As long as we don't make anything competitive (within the family), it's fine. So, after this lengthy introduction, I was wondering if anyone had any experience with mood stabilizing drugs, and what your thoughts are on this. I'm not sure how much more our family can take. I love my son so much, and he has such a sweet, caring, and sensitive side that's wonderful....I wish I saw more of it these days. It's like living with a Dr. Jeckyll/Mr. Hyde.....we never know what we are going to get. Thanks for any thoughts/feedback you can give.

 

[InsaneCdn]

Hi, and welcome.

I'm no specialist at anything... but am quite familiar with ADHD, and what you are describing... (in my opinion) either has to be ADHD plus other stuff, OR something more along the lines of Autism Spectrum Disorders (ASD)/Asperger's.

Anxiety is a frequent secondary diagnosis (diagnosis) for "our" kids... things are not going well, and they know it, and it affects them. No big surprise there. Sometimes, there is a primary issue with anxiety, as well... so we've been told.

Has he ever had an Occupational Therapist (OT) evaluation for sensory and motor skills issues? Either or both could be a factor... Occupational Therapist (OT) doesn't generally do dxes but definitely has therapies and interventions to help.

Ever had an Speech Language Pathologist (SLP) evaluation? hearing, language processing, but especially APDs... can be a huge factor as well.

It seems like he does better in a quiet, predictable environment (home), and can't handle one or more parts of school - the noise, the crowds, the motor skills demands, even something as simple as the smells at school.

 

[BusynMember]

Has he ever seen a neuropsychologist? I am thinking it sounds like it could be autistic spectrum disorder (Autism Spectrum Disorders (ASD)), and a therapist would probably miss that. A neuropsychologist pretty much tests (up to ten hours) for everything Insane Canadian mentioned. It is very intensive.

 

[HaoZi]

whether it's food he doesn't like, clothes that don't feel right,

As someone who not only has a kid with Asperger's and a sensory disorder but can also tell you this from her own personal experience, these are not minor things to us, these are (in our world) or can be overwhelming things in our world. You know how little irritations can build up into one big irritation? Try it with hundreds of those little irritations every day, every minute. Sock seam not right, shoe a little too tight on top of that? That's going to irritate me ALL DAY. I can't ignore that like most people can. Now add in that shirt tag scratching at the back of my neck, shirt seam rubbing at my side, that kid over there who is just a little too loud, the sunlight that's just a little too bright hurting my eyes, there's something here that smells funny (maybe it's that kid's lunch?), now my brain hurts trying to tune out all this stuff and I can't tune it out so it has to go somewhere and guess where it's going to go... right to my temper. Or my Obsessive Compulsive Disorder (OCD). Or my this or that.

"Minor things" to a normal person can be like using sandpaper and salt on roadrash on someone with Sensory Integration Disorder (SID), which is very common in Autism Spectrum Disorders (ASD) and Aspergers. Some prefer a higher degree of stimulation, and others require limited stimulation, everyone is different. Extreme pickiness for a variety of reasons is common, and can be due to color/texture/flavor/you name it. Roll with it as best you can, the easier you can make it on him the easier he'll be to handle. Trial and error, you'll find ways to compromise that allow him to be himself without totally giving up nutrition.

Allergy testing is also a good idea, too. If he turns out to be allergic to anything exposure to those things can show up as behavioral as well.

There's no one right way with these kids, you have to find (often through much trial and error) what works right for you and your family. If something isn't working, try the next thing. I know in my house that often means finding something new often because something doesn't work for long if it works at all. Doesn't help that we're both Aspies with our own way of how we want things done, good that our pickiness encompasses pretty much the same foods, lol.

Pick up a copy of The Explosive Child by Ross Greene, I found it a great starter book for dealing with my kid.

 

[TeDo]

A lot of what you are describing sounds exactly like my son with Asperger's and anxiety being the dominant issues. Typical reward-consequence programs don't work. We have been playing the medication game for a while now and have had a couple medications cause very aggressive behavior and made him even more rigid with everything. Our Occupational Therapist (OT) did an awesome job figuring a lot of things out and her recommendations have helped tremendously. From what you've said so far, it sounds like Autism Spectrum Disorders (ASD) and sensory issues are the driving forces behind the behaviors. medications aren't going to help that but the RIGHT anxiety medication can help take some of the edge off.

I would highly recommend you read the book What Your Explosive Child Is Trying To Tell You by Dr. Doug Riley. It will give you a whole new perspective about the behaviors and also some recommendations to try to help deal/change them. We are in the process of finding a GOOD speech therapist to help difficult child 1 with his expressive speech. As highly verbal as he is, he lacks the correct vocabulary to put his feelings into words. You might also want to read The Explosive Child by Ross Greene. Between these two books, I think you'll find a lot of help.

Welcome to our little corner of the world. You have found the most experienced and supportive group there is.

 

[buddy]

At the risk of sounding redundant, your issues hit home for me with my son who is also on the Autism spectrum. the issues I hear you discussing like the meltdowns over food, clothes etc...smack of sensory integration disorder which while associated with several conditions is HIGHLY associated with autism. MY son is on a mood stablizing drug but I have to say I see nothing coming from it...he was put on it because he has an enzyme condition that makes many medications not able to be choices and he has a brain injury on top of the autism which adds to the mood shifts. But what DOES help is therapy for sensory integration, using autism methods to teach and cope and these things are very different from traditional behavior programs. He will likely need to learn skills and coping methods that are very different from most people because as H. said....the daily grind of living with those kinds of processing problems in so intense. I have ONE problem with my back...by the end of the day my bra strap pushing on that are can make it so I can almost not even say one nice word to anyone..even a stranger who would offer me a kind word. I can only imagine that our kids feel that level of frustration (imagine someone poking you hard ALL DAY)....most of their lives.

If you have tried these other roads and you have a hint from past evaluations that autism could be an issue, then why not take the time to investigate and see if this could be a life changer for you and for him? It will never be easy but understanding the issues goes a long way to avoiding triggers and learning different ways to calm. Some therapies can help to reduce the symptoms.

medications can help but I would not stop there... They are not a cure as you well know, even if it is a mood dysregulation disorder. Just some thoughts, sorry if you have tried these things...

(I also agree an updated evaluation, esp. a neuropsychologist to look at the differential diagnosis.... is this autism or not... could be of huge benefit... and add the Occupational Therapist (OT) evaluation/Speech Language Pathologist (SLP) evaluation)

Welcome and glad to share this journey with you... will be great getting to know you.