Odd

[crazylady]

We just got the dx of ODD today. I don't know exactly what to do with dx. Can anyone out there explain their experiences & knowledge of this disorder? DS also may have mild ADHD, Asperger's, OCD & depression. The doctor said that the ODD needs to be tackled first and that may help the other issues. I am lost. I don't exactly know what this means. Anyone out there have any advice, knowledge, ect to pass on? Thanks!

[joensally]

Originally Posted by crazylady

We just got the dx of ODD today. I don't know exactly what to do with dx. Can anyone out there explain their experiences & knowledge of this disorder? DS also may have mild ADHD, Asperger's, OCD & depression. The doctor said that the ODD needs to be tackled first and that may help the other issues. I am lost. I don't exactly know what this means. Anyone out there have any advice, knowledge, ect to pass on? Thanks!

I have to take the kids to something, but will be back . I'll quickly post this link, a very interesting read. Has your son been assessed by an OT? If he is on the spectrum, he likely has sensory processing disorder (SPD). SPD can look a lot like the other alphabet soup you've got there. Not saying it's only SPD, but with a 4.5 year old that's a whole lot of diagnoses.

Anyway:
http://www.neurolearning.com/Library...earning-clinic
Part 2:
http://www.neurolearning.com/Library...ory-processing

[crazylady]

I think it's a lot too! THe dr said that the real issue was the ODD. After we get a handle on that the other issues may subside. It made sense to me. His world is crazy right now and after we get it closer to what he needs somethings will drop off or we will reevaluate where we are. Is this strange? I have no idea. It seemed reasonable when dr said it!

[joensally]

Originally Posted by crazylady

I think it's a lot too! THe dr said that the real issue was the ODD. After we get a handle on that the other issues may subside. It made sense to me. His world is crazy right now and after we get it closer to what he needs somethings will drop off or we will reevaluate where we are. Is this strange? I have no idea. It seemed reasonable when dr said it!

So the doc is saying your son has situational ODD? I'll say this at the outset - I think the ODD criteria in the DSM are among the weakest, and it's very interesting that the doc is giving ODD as the primary diagnosis when it's usually co-morbid with other issues, and any of those others could be the primary diagnosis. ODD is a "condition," but it also describes behaviours that may result from other issues.

I have a lot of questions.
1. What tools were used to assess your son? Did you or a school or anyone else complete inventories, or was this based on some form of narrative report (either verbal or a fill-in questionaire)? How much time did you and your son spend with the doc?
2. What were the qualifications of the doc? (ped, gp, psychologist, psychiatrist?)
3. What strategies and approaches did the doc recommend?
4. Have you seen Early Intervention?

My son has SPD, ADHD, motor planning issues, written output issues and others. He's been seen by 3 OTs, 2 peds, 2 psychologists, a psychiatrist, a developmental optometrist, multiple others. We've been through the evaluation ringer since he was 3 and I also work in the child health field. Here's what I'd recommend from my experience (both what we've lived, connecting with other moms with SN kiddos, professionally, and also reading here - one of the best places of support and info I've found).

1. Take him to a developmental optometrist - vision issues can be huge and cause all kinds of wacky behaviour and problems.
2. Have his hearing checked - see above.
3. Take him to an OT to be screened for sensory issues - see above.
4. Evaluate for allergies - see above.
5. How's his sleep? This is core to functioning. I highly recommend Kurcinka's Sleepless in America - it's a goldmine of info on what we do to work against our kids sleep and the things we can do to help them.
6. What discipline approach are you using? Different kids need different approaches and blanket, standard issue GD may not work with kids with self-regulation issues. Folks here have lots of good ideas.

I'll wait for your replies to the litany of questions above because I've got more ideas .

[crazylady]

WOW! I feel so unprepared! I would love help of any sort. I am so lost & new to the whole process. I don't really know how to be the best advocate for him!!!


I have a lot of questions.
1. What tools were used to assess your son? Did you or a school or anyone else complete inventories, or was this based on some form of narrative report (either verbal or a fill-in questionaire)? How much time did you and your son spend with the doc?
We first went to out ped. HE spent min time with him and said that yes we needed to go to someone with more training in the field. HE referred us to a ped psychiatrist. I went to the dr for 2 sessions doing background and questionaires. Then we did some sort of test, it was take home. My mom did one and I did one. The dr spent 2 sessions with ds. From all of that he said that this was the issue. Now I am in a fog so the dr may have said it differently. We go back to him on the 31st.

2. What were the qualifications of the doc? (ped, gp, psychologist, psychiatrist?)

3. What strategies and approaches did the doc recommend?
He said that I needed to be more scheduled, cut down on our activities, wait a while for preschool, read "How to parent your out of control child"
4. Have you seen Early Intervention?
He is 4. I was told that ei is for 3 & under.

My son has SPD, ADHD, motor planning issues, written output issues and others. He's been seen by 3 OTs, 2 peds, 2 psychologists, a psychiatrist, a developmental optometrist, multiple others. We've been through the evaluation ringer since he was 3 and I also work in the child health field. Here's what I'd recommend from my experience (both what we've lived, connecting with other moms with SN kiddos, professionally, and also reading here - one of the best places of support and info I've found).

1. Take him to a developmental optometrist - vision issues can be huge and cause all kinds of wacky behaviour and problems.
2. Have his hearing checked - see above.
3. Take him to an OT to be screened for sensory issues - see above.
4. Evaluate for allergies - see above.
5. How's his sleep? This is core to functioning. I highly recommend Kurcinka's Sleepless in America - it's a goldmine of info on what we do to work against our kids sleep and the things we can do to help them.
6. What discipline approach are you using? Different kids need different approaches and blanket, standard issue GD may not work with kids with self-regulation issues. Folks here have lots of good ideas.

I'll wait for your replies to the litany of questions above because I've got more ideas .[/QUOTE]

We took him to check his eyes & ears. They are both fine. HE went for massive allergy testing and nothing. I have never noticed any sensory issues. What would I even been looking for? He has night terrors almost nightly but other than that sleeps great! I have tried about every method of discipline I can think of. The reason I started this whole process is because I felt that I needed more tools to help him. Things started for us about 2 but we saw many of them to be standard 2 things.
I'll take any help that I can get!!! I am learning that I really am lost on this!!!

[APToddlerMama]

OP--I don't have time to read through posts but this seems very weird to me that the doctor wants to tackle ODD first... My thought is that the ODD may be more of a symptom of everything else you mentioned that is going on. I would want to start treating everything else and see what sort of impact that had on the ODD, or start working on both aspects at the same time. I can imagine being pretty oppositional myself if I had untreated depression, Aspergers, ADHD, OCD, etc... you know?

What type of doctor are you seeing? I would want a second opinion based on what you have said. I've worked professionally with many kids with ODD and I may be wrong, but it just seems like you need more support for everything else that may/may not be going on. Have you had any evaluations done?

[crazylady]

This is based on the eval we had done. The dr said that ADHD was the 2nd biggest issue.
I am feeling like an idiot

[joensally]

Originally Posted by crazylady

This is based on the eval we had done. The dr said that ADHD was the 2nd biggest issue.
I am feeling like an idiot

Do NOT feel like an idiot. This stuff is really hard and really confusing. I've been at this for 4.5 years with my son, work in the field and do extensive personal research and I was recently surprised by a test result with DS - again, this stuff is complicated and overwhelming. I don't know if you struggled with breastfeeding, but I really did and I equate this process to that experience - it took a long time to figure stuff out, I often didn't do things "exactly right" but we both ended up ok in the end. You have time to work through this, there is no timer going in the background that says you have to figure it out right away. Go easy on yourself.

I'm not in the US - does ped mean someone who has additional training in children, or simply a doc who prefers to work with kids? There is a lot of emerging science on brain development, and there's a tremendous push and pull in the medical community around over-diagnosis and labeling everything as atypical.

Did you get a written report? My tip for you is to get a binder and start photocopying everything you receive. If they give you an inventory (those bubble lists or a fill in questionaire), complete it, copy it and file it. Doctor appts are overwhelming and keeping documents and notes in one place will serve you well.

ODD is the diagnosis of 2010. It is actually much rarer than it's current rate of diagnosis, and a big problem is that the DSM (diagnostic manual used by doctors) criteria is vaguely descriptive. It is totally normal for kids to be oppositional and defiant. Add a layer of another processing issue (like sensory issues, anxiety, OCD, neurological atypicality), and then you've got a kid who is regularly in a fight or flight mode that looks pretty oppositional and defiant more often than other kids who don't have these internal dynamics. So the question is whether ODD is part of his native thinking processes, or is a reactive response to internal discomfort.

I wholeheartedly agree with APToddlerMama re the ODD coming first, and I would also really, really question this diagnosis in a four year old. Also, Asperger's is typically diagnosed at a later age, and is usually arrived at through some pretty heavy evaluative processes.

So now that I'm done arguing with your doctor , some ideas that I hope will help you.

Sensory issues:
Scroll down and you'll see a checklist of symptoms:
http://www.sensory-processing-disord...checklist.html

Discipline:
When I deal with his sensory needs I need way fewer discipline strategies. Not beating the SPD drum, but I've found the same thing with my DD with her anxiety - if I address her anxiety, I need fewer discipline strategies.

I personally love this book:
Kids, Parents and Power Struggles
http://books.google.com/books?id=sT4...ed=0CCwQ6AEwAA

I know a number of mothers with complicated kids who swear by this book:
Transforming the Difficult Child
http://books.google.com/books?id=4Y9...ed=0CDQQ6AEwAQ

Developmental optometry:
Is very different from regular optometry, and my son's vision issues were not caught in a regular eye exam. Interestingly, the behaviours that come from his eye issues look just like ADHD.
http://www.optometrists.org/therapis...fficiency.html
I'm not saying your son has vision issues, but ruling stuff out can be just as signficant as ruling things in. And this is a great example of ADHD-behaviours being caused by something else.

I found this book very healing when I read it last summer. I was feeling rather battered emotionally be the search for answers, suitable schooling etc etc. I highly recommend it, and the link below includes a sizable preview. The author really speaks to the parent and gets to the heart of parenting a child who is struggling.
When the Labels Don't Fit
http://books.google.com/books?id=kPt...page&q&f=false

I don't want to overwhelm you with stuff, but here are other books I've found helpful:
Kids Caught in the Syndrome Mix
http://books.google.com/books?id=DmU...page&q&f=false
Smart But Scattered
http://books.google.com/books?id=J5M...page&q&f=false

Finally, anything by the Eides is groundbreaking. Are you in Washington state? That's where their clinic is and they are amazing people from what I can tell. There's a tonne of their stuff online, including a number of youtube videos. Their book is called The Mislabeled Child and it's on my bedside table .

Oh goodness-Youtube!!

Have a look at this news report:
http://www.youtube.com/watch?v=QDaj4...eature=related

[Heavenly]

Every single one of the things your son is potentially diagnosed with would potentially fit under the diagnosis of bipolar disorder. Bipolar is often misdiagnosed as ODD, ADHD or other similar disorders. I am not saying your child is bipolar but instead of there being a bunch of unrelated disorders it may very well be one disorder causing all those problems.

[fairymom]

As a parent of a child with ODD- and yes I firmly believe that he has ODD, I'll tell you it is something I really wish we could've gotten help with when he was as young as your son. Life w/him NOW would've of been so much easier on him and really there are special ways to deal w/ODD kids that help so much. But my son is now a large teen and we never got the right tools in place to be able to help him! (He is also treated for ADHD). There is no Rx for ODD so everything you learn to help him and start the process will help in the future. With my son treating the ADHD w/the right Rx helps the ODD simpily because then his brain is ordered enough for him to see when he is being irritable and deffiant but there are pleanty of Rxs out there w/side affects that bring the ODD out stronger. For ex- Aderall does not work for my son since one of the side affects is irratablity and its 10x worse for him.

I think your Dr is wise in saying you should deal with ODD first- esp since your son is so young and therapy would be all play. Finding ways to deal with it will give them a better understanding and clearer picture of other things he may need help with.

Good book: The Explosive Child by Dr Ross Greene, please look into it. It has so many tools and really helped me overcome the guilt that I associated with the DX.

OPs- bashing the dr is not always the best way to go. ODD is real and very hard to live with esp as a child grows and grows larger than you- they can get quite voilent and unless you and them have the tools to help them cycle down and out of being stuck on something- dangerous to all around them.

[joensally]

Fairymom, I apologize if my posting appeared to nullify ODD. It is a very real diagnosis and families benefit from proper diagnosis and appropriate treatment. I mentioned my issues with the dsm diagnostic criteria, I didn't say it wasn't real.

IMO, it does a disservice to the children with odd to have kids without it diagnosed with it, same as ADHD, as it minimizes the severity and seriousness of truly clinical cases.

The OP's doctor said that treating the odd would resolve asperger's - this makes no sense to me, as asd involves so much more than odd-type behaviors and often requires significant support on it's own. It is also very unusual for such a large-span differential diagnosis to be provided in so short a time without a team of evaluators.

My main points upthread was that you have to match your treatment strategy to actual cause(s), to properly fit the individual child. My son has been offered the wrong remediation strategies at school and that's been counterproductive. I do very much keep my eye to the future when he's both physically larger and less easy to influence.

I'm sorry your road he been so long and hard.

[crazylady]

Maybe all the confusion is from me! The dr said that none of this is a formal dx. He is stating what he sees. He says the ODD is the main issue and all the others are ones that we need to keep in mind. I was getting quite down since no one on any forum talk about their child having ODD as the main issue. I guess life is not one size fits all!

[fairymom]

I'd never say my son's ADHD is higher or more main over his ODD but the ODD does seem a bit better when he's on a good med for his ADHD- I think partly because he can think a little clearer. But his ODD is always still there, and Ithnk I've been able to better find ways of "dealing" with it. Honestly I do see his ADHD getting better w/age/going thru puberty/maturity- I know adults that were DX w/ODD and still have lots of issues w/it but have found/been taught ways of dealing w/it. I think it will be simular w/my son and ODD. I hope he'll become a lawyer so he can use it to his advantage!

[Lisa1970]

That was basically my oldest son's initial diagnosis when he was 5 yrs old. It was ODD and ADHD. I think it was pretty accurate. We did end up having to medicate him at that age as it was getting dangerous with him running off in to traffic and running away in public and hiding and things like that.

He stayed on the meds for 2.5 yrs. Then went off due to complications. But I think that time really helped because it helped bring him back to us and establish new habits. We still had issues with him and had to come down on the discipline with him. I mean, really come down.

He is 15 yrs old now, almost 16. You would have no clue of his former DX. But looking back, oh yes, he definitely had problems of being impossible. There were times I wanted to run away from home.