New here - What do we do to help our ADHD/ODD son??

[cassiemoun]

My son is 9 years old. He has ADHD and ODD. He fits the ODD diagnostic checklist to a T. Currently, he is on Intuniv to help his ADHD (We did stimulants for 2 years, but found they made him more aggressive, he had a manic-like rebound in the mornings and evenings and I hated seeing him so thin).

The ADHD is pretty well controlled with the Intuniv. He is sleeping well and eating great. But the ODD symptoms persist. It's very intense and is very hard on us all (we also have a 6 yo with ADHD (not ODD thank God!) and an 18 month old).

I feel like our HMO ADHD doctor is just throwing medications at him and I don't have any confidence in this Dr. at all. We need help. He needs help to learn and practice frustration toleration skills, to not be so negative, and to not argue every tiny little thing. My husband and I need to learn to be able to deal with his negativity, defiance and controlling personality without screaming and being confrontational ourselves. I see that we're in a bad cycle and can't seem to change my emotional responses. I feel it so deeply and can't help but take it personally, since he is much, much better in school.

Since I only have an HMO, whatever I do outside of that will obviously have to be paid for with cash. We have an appointment at UCLA in June to have a 3 day long intense assessment, to the tune of $3000....but I don't know if that's where we should put our money. I mean, I am quite certain that this ADHD/ODD diagnosis is correct. I would be really annoyed to spend $3000 and have them tell us something we already know. But it is possible that he does have bipolar (husband's Sister has it) and I would feel confidant in what they diagnosis. They would probably also be able to help us with follow-up and with where to go from there.

on the other hand, We could also put our money into a behaviorist to come from the local Autism Center for Treatment. Though he is not autistic, I feel like he does have a lot of the same struggles that some kids on the spectrum have. He/She could hopefully help him (and our whole family).

Or is there something else we should do that I am missing? Don't say private therapy, because I have paid WAY WAY WAY too much money of so many different therapists (like 6 in 5 years!) and none of them helped one bit. He doesn't need talk therapy, he needs more than that.

Any advice is SO welcomed. Thanks so much for your time.

 

[farfromperfect]

I can't say that I have any advice for you, but it seems like we're in such similar boats. We've forked over so much money to private therapists in the last 10 years and feel nowhere closer to better. However, we obviously need something but don't know exactly where to turn.

 

[rlsnights]

Welcome to the board.

Have a few thoughts for you.

ODD is a description. It is not actually a diagnosis in the sense that it guides treatment. Because there isn't any accepted standard treatment for ODD except to give the parents a bill as you show them to the door. Ok maybe that is a teeny bit cynical of me. Or maybe not.

Anyway, until you know for certain that those ODD behaviors are not really something else like bipolar hypomania (easily mistaken for defiance and entitlement in kids), I would be cautious about using that label. Especially with his school.

If you can download and read The Explosive Child by Ross Green tonight/tomorrow then do that before you do anything else. It will help you by giving you ideas about how to think about what's happening in your home. Don't get too caught up in the A/because basket stuff unless the A basket (safety) issues are not a problem yet. If you have safety issues then those must be addressed first and anything else is gravy. For now.

If you haven't done family therapy or couples therapy in your trip down the HMO therapists list, then that is where I would suggest you put your time and money. You and husband need help. Just like in the plane, before you put the oxygen mask on the kid you put yours on first. Same idea.

I hate to tell you this but 6 therapists in 5 years is not a good trial of therapy. It takes time - often several months - for a therapist to build rapport with a difficult kid. I am not in any way implying that you were wrong to try 6 different tdocs. I have been very frustrated about finding a good therapist for my own kid off the HMO lists. But you may want to start a separate post asking for advice on how to find and choose/evaluate the performance of a therapist for your kid. You need to find someone who knows what they're doing before you bring your kid to see them - not just take someone off the list because your HMO says they are qualified.

1. I understand he is much better at school but has the school ever done any assessment of him? Does he have a 504 plan or IEP? If there hasn't been any assessment done there I would ask them to assess him for Special Education. Tell the school what behaviors are concerning you regardless of where they are most problematic. If he has problems that you think look like autism then say so. If he has been assessed and has an IEP, has has he had a speech and language assessment done? If not then I would call for an IEP meeting and ask that one be done. Kids on the spectrum and bipolar kids almost always have language processing issues. A lot of the time those problems are not obvious to the people around them but they are contributing to your difficult child's frustration and inability to accurately communicate with others and to understand what others are trying to say (verbally and non-verbally).

2. No matter which HMO you have, you are entitled to a second opinion. I suggest you contact your behavioral health provider and tell them you want a second opinion consult and your concerns. They should be able to give you a list of other child psychiatrists (please tell me he's seeing a psychiatrist and not a GP or pediatrician) and a referral.

3. You could pay for that assessment out of pocket. You could also ask your HMO to pay for a comprehensive neuropsychologist assessment. If you haven't done so I would do that before you pay $3000 unless you have that just laying around. The basis for requesting a neuropsychologist assessment is the autistic-like behaviors that concern you, the existing ADHD diagnosis and the family history of major mood disorder. Be sure to mention his gross and/or fine motor problems too.

4. You could follow this link and contact the people running the Pediatric Bipolar Disorder Study at UCLA. Ask them about whether he could be screened for inclusion in this study. They may say he doesn't meet criteria because he doesn't yet have a Bipolar diagnosis but they may also say - oh we have this other study going where we look at diagnosis of bipolar ... and then you will get everything you want for free in the $$ sense of that word. It will take time and pay attention when they tell you how much time they want from you/kid to participate in the study cause it can add up. been there done that.

This specific study involves neurocognitive testing to differentiate between ADHD and Bipolar.

http://clinicaltrials.gov/ct2/show/NCT00961935

 

[BusynMember]

I would definitely go to UCLA. ADHD/ODD is an early diagnosis for kids who often have other issues...mood disorders and autistic spectrum are two of them. My son is on the autism spectrum, but he still tests off the charts for ADHD. The tests are only a guideline.

Like many here, I feel that ODD simply means defiant child and that it doesn't explain the core issue as to WHY the child is defiant. All of our kids here probably meet the criteria for ODD, but it is an unhelpful diagnosis. A mood disorder is hard to diagnoses in a young child and sometimes the diagnosis is wrong. However, I had a bad mood disorder as a child. I was very sad, even suicidal, as early as six, and it impacted both my behavior (rages) and my school performance. It would have helped me a lot if it had been treated as a young one...maybe I would have done better in school...I had a pretty high IQ. As it was, I had no energy or interest in anything, least of all school or homework. By seventh grade, my all right grades had sunk and the depression had hit a dangerous level, and nobody helped me. Back then, they just didn't know how or admit that children can have mood disorders.

Good luck, whatever you decide to do.

 

[cassiemoun]

Child by Ross Green tonight/tomorrow then do that before you do anything else. It will help you by giving you ideas about how to think about what's happening in your home. Don't get too caught up in the A/because basket stuff unless the A basket (safety) issues are not a problem yet. If you have safety issues then those must be addressed first and anything else is gravy. For now.

I do have that book and frequently try CPS with my son...but I am exhausted from the endless negotiations. I will give it another listen - I have it on CD - and have my husband listen to it as well.


If you haven't done family therapy or couples therapy in your trip down the HMO therapists list, then that is where I would suggest you put your time and money. You and husband need help. Just like in the plane, before you put the oxygen mask on the kid you put yours on first. Same idea.

I am going to a NAMI Parent support group in two weeks and hopefully can get the name of a good family/couple therapist there. That's a good suggestion since I am quite aware that my stress is very high and my frustration is bad leading to my ****thank you responses and then feeling badly about my self as a parent....the whole bad cycle.....
I hate to tell you this but 6 therapists in 5 years is not a good trial of therapy. It takes time - often several months - for a therapist to build rapport with a difficult kid. I am not in any way implying that you were wrong to try 6 different tdocs. I have been very frustrated about finding a good therapist for my own kid off the HMO lists.
the thing is....my hmo is kaiser permenante and they only have MFTs or the "children's center for attentional problems" which is who we are working with now. That is run by a peditrition and a nurse practitioner who specializes in ADHD. There is a psychologist there who did the initial assessment. I did request an full n. Evaluation, but when I found out that the dr. That does them was the doctor that we saw for about 6 months and all he did was talk, talk, talk about carrot/stick discipline and despite my very comprehensive reporting, never once suggested adhd or a mood disorder. So obviously, that guy is not someone I trust.

1. I understand he is much better at school but has the school ever done any assessment of him? Does he have a 504 plan or IEP? If there hasn't been any assessment done there I would ask them to assess him for Special Education. Tell the school what behaviors are concerning you regardless of where they are most problematic. If he has problems that you think look like autism then say so. If he has been assessed and has an IEP, has has he had a speech and language assessment done? If not then I would call for an IEP meeting and ask that one be done. Kids on the spectrum and bipolar kids almost always have language processing issues. A lot of the time those problems are not obvious to the people around them but they are contributing to your difficult child's frustration and inability to accurately communicate with others and to understand what others are trying to say (verbally and non-verbally).

he goes to private school, so there is nothing in place there. I did request an evulation but since he gets straight A's and teacher reports on his ***. Are good, the public school denied my request for an evaluation. He is VERY bright. He took a test through John Hopkins Center for Talented Youth and scored high enough on the math portion that he received an award. I suspect his high IQ may add to his challenges. The only thing with school that I am concerned with is he is becoming more and more apathetic about it and see his grades slipping this year. Only a bit though, it's still mostly A's.

2. No matter which HMO you have, you are entitled to a second opinion. I suggest you contact your behavioral health provider and tell them you want a second opinion consult and your concerns. They should be able to give you a list of other child psychiatrists (please tell me he's seeing a psychiatrist and not a GP or pediatrician) and a referral.
I don't think Kaiser will pay for second opinions.

4. You could follow this link and contact the people running the Pediatric Bipolar Disorder Study at UCLA.

I will call about that study on Monday...thx for that link.

 

[cassiemoun]

Thank you both for your replies! It's really nice to talk with people who get it and don't give me silly advice like...have you tried being really consistent with your rewards and consequences? Lol

I have not seen any depression with my son....but like you mentioned he is very bright and that in and of itself leads to some issues......

 

[Josie]

We need help. He needs help to learn and practice frustration toleration skills, to not be so negative, and to not argue every tiny little thing. My husband and I need to learn to be able to deal with his negativity, defiance and controlling personality without screaming and being confrontational ourselves. I see that we're in a bad cycle and can't seem to change my emotional responses. I feel it so deeply and can't help but take it personally, since he is much, much better in school.

My daughter was textbook ODD until she was 10, but only at home. Due to her sister's health problems, we discovered that she had gluten and casein intolerance. When we put her on the girlfriend/CF diet, she is a regular kid. Even a pleasure to be around, when she stays on her diet.

I believe that food allergy was the underlying cause of her ODD. When she is on her diet, she doesn't need to learn to control her frustration because she is not easily frustrated. It is the silver bullet for her. No therapy or medications needed. Before we did the diet, she was taking Lexapro and we were going to add Seroquel to control the violence.

I also found out that I was gluten intolerant and since being on the girlfriend diet, I am way more relaxed, even when A is off her diet and displaying that ODD behaviour. For the most part, I don't get caught up in it and can recognize it as irrational behaviour. Thankfully, she usually gets herself back on her diet quickly enough and we don't have to deal with it too long.

I never would have believed this could work as well as it does, until we tried it.

 

[rlsnights]

Ah Kaiser... Yes they have a psychiatric system that will make you crazy if you aren't already.

Ok, so you are probably going to have to find tdocs in the community and pay for that yourself. Or you can try to find some free services. We have lucked out and are getting free family therapy through our local crisis program for at risk youth. I would check out one of them in your area if money is a problem. If it's not a big issue then I would call them anyway and ask for a referral to a community therapist and about any groups they might run for families.

I am with you on not using the Kaiser psychiatrist.

You CAN get a 2nd opinion with Kaiser. You have to go to another Kaiser doctor, usually at a different facility. But if the other facility isn't convenient then you are stuck with the commute (if you like the doctor) or the choices you had before the 2nd opinion. You could call UCLA and ask them if they know of or refer anyone to any of the Kaiser's when that is their health plan coverage. You may have to ask about that when you are doing the neuropsychologist assessment. The office staff/assistants may not be able to give you any suggestions.

I wouldn't cancel your neuropsychologist assessment appointment unless you have something else lined up that's definite and pretty soon. Including the bipolar study people since they may decide he doesn't meet criteria for anything after they do some basic screening. And any screening they do they will only share with your kids psychiatrist - not you.

And, especially if there's a family hx of celiac's, autoimmune disorders, allergies, you could ask for allergy testing and guidance at Kaiser. My son's Kaiser allergist was really good. One of the few things at our local Kaiser that I could recommend without hesitation.

 

[cassiemoun]

Yes, Sorry you know of Kaiser's lovely system. I am not going out of the yellow pages to see a therapist, so will definietely find out about reccommendations at the UCLA assessment in June or at the upcoming NAMI parents meeting.

Do you live in Southern California, PJ?

And no history of allergies, etc. I did do the Feingold diet with difficult child#1 when he was 6 years old and found that for the difficultly that diet was, it didn't provide enough of a difference......

I would be willing to try a girlfriend/CF diet, but it would be tough to do with him and cause a lot of conflict. I don't have the emotional energy for that right now. Sadly.

Thanks again for everyone input....it's much appreciated.

 

[rlsnights]

No, I live in Northern CA and have been blessed to be out of the Kaiser system for about 4 years. I don't actually abhor the Kaiser system. For most people it delivers good quality care at an affordable price and access to general medical care is terrific.

But in our experience, if they don't have to do it by the tens of thousands, the care is not very good. Our difficult child has multiple health conditions - one of which is very, very rare and another is just plain old rare.

The first was completely missed by the Kaiser ENT's and not discovered until we changed plans. Required multiple surgeries and my son lost all the bones of his middle ear in the process. No way of knowing for sure the outcome would have been different but it probably would have been less severe.

The other got us OK care but not good care and there was a delay in diagnosis of about a year from the start of obvious symptoms.

So, if you need a hip replaced - Kaiser is the place to go. If you have a kid with an autoimmune disease - not so good.

 

[Josie]

My daughter was very oppositional when we tried the girlfriend/CF diet, but she didn't like the way she felt so angry and out of control. I told her we needed to try it to see if it helped and then I emphasized all the treats she could still have. We did the girlfriend part first, so that meant she could have ice cream, candy, and soda. I let her have whatever she wanted that was on the diet so that she wouldn't cheat and ruin my test.

I felt so much better myself that I was convinced it would work for A. And I had to fix the food anyway for B and myself, so it was easy enough to make A's meals, too. Even husband ate it. Without my own experience, it would be hard to do because it is a lot of work at first, and it seems unlikely to work.

I only have to do the girlfriend part to feel better so you might be able to get by with one or the other. My girls both have to do both.

I still remember A, after a while on the diet, saying in her most defiant voice, "I am only doing the diet until I am 18!" Works for me. LOL