We are going on a year of medication treatment with ADHD for my inattentive 10-year-old boy. He started on a low-dose of sertraline, Then we added methylphenidate 10 mg ER and gradually increased it to 20. We eventually weaned him off sertraline and started him in 2 mg of guanfacine. Based on his feedback he is in a fast metabolizer because he tells me it wears off after a few hours in the morning but we saw tremendous benefits in how he could organize his day at school which is a Montessori. His behavior has moved more towards ODD type behaviors, especially when we are all home on the weekends. He gets aggressive with his siblings very argumentative with us about very simple tasks like putting dishes in the dishwasher or if he disagrees with the way something is said he will argue it till the death . He’s also very brave and actually has very good arguments. I tried to follow more of a positive discipline type of parenting and do not try to squash his spirit or creativity but he overstepped boundaries like physical ones or even verbal or emotional ones. I keep trying to do positive parenting and honor him as a person but when he gets physically aggressive with his younger siblings it’s really hard for me not to physically remove him from the situation. In the past he would rage and have huge tantrum‘s and we seem to have moved past a lot of that. I’ve gotten a lot better at staying calm and handling his intense moods but it’s really hard sometimes. I basically feel like he bulldozes everyone’s boundaries in our family and because he’s not manageable there’s really not much I feel like I can do about it. Even if I take away a priviledge he will be very angry for long periods of time and blame me or his father for whatever happens and not take any responsibility. In the past I would wait until he is much calmer and sometimes he does come around but it takes a very long time and the incidences seem to be happening more and more. He was diagnosed by a pediatric nurse practitioner and I just wonder if she missed some things which I guess is possible. His behavior affects his siblings around him too and makes for a very difficult environment at times. He plays baseball and is quite good and listens to his coaches mostly and is good with his teacher in school . He refuses to help with anything around the house (ie: get dressed, General grooming, putting his plates in the dishwasher. etc. he has a really arrogant attitude towards his dad and I am basically just tells us no and that he will not do those things that we ask of him and there’s nothing we can do about it. Sometimes I feel like he needs to go away to a facility until he can learn how to be cooperative it’s really stressful on our family and in our marriage too. He does not exhibit any of these behaviors anywhere but at our home. He pushes my husband and I to our limit and it’s been very stressful on our family and our other three children ages 12, 8, amd 3. I will add that my oldest 12-year-old and my eight-year-old have both been diagnosed with hyperactivity and combined type ADHD but they do not have the executive functioning deficits that my middle has. They are also much more cooperative . He was tested in school and is gifted and labeled 2 E. He’s a deep thinker and seems wise beyond his years for his age. A couple of questions I am thinking of finding someone to do PMT because that is supposed to help with ODD like behaviors and wanted to see anyones recommendations or experience with that. We hired a psychologist that specialized in behavior therapy but he wanted us to do contracts and it turned my husband off and he wanted to stop seeing him. Maybe we need to find someone that’s a better fit personality wise?
I’m trying my best to keep our relationship intact but at this point it’s like I don’t have any clout with him and he is so angry and disengaged from us all the time. His eating has gotten worse and he seems very tired and lethargic all the time. He’s always been a picky eater but now it’s getting more extreme and I have concerns that there could be other things going on that I’m not aware of. One thing that came up is that he could be on the spectrum but my psychiatrist mentioned that to have him properly tested it’s over $3000 out-of-pocket and she could recommend someone. We do not have $3000 to pay at this point for a maybe and we need to put that money towards therapy if we can find a good therapist.
I guess I’d like to know if anyone had suggestions as to what has helped them in a situation like this. My husband and I are seeking a marriage family therapist (for ourselves) and I think family therapy would be beneficial For all of us, and then I also think my son needs one on one therapy too. I’m just feeling overwhelmed as to where to start. We have insurance but it is high deductible and this feels like I want to help our family, but it’s so expensive!
I’d love some insight to more experienced/older parents with multiple kids that can resonate with my journey. I am reading the book scattered minds that someone else recommended on here and it’s very helpful.
I appreciate this community and all you do to help each other out.
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The symptoms and situation you describe are nearly identical to those of my son, who just turned 11. He has taken Jornay, Concerta, Guanfacine, etc. . . to varying effects and has had a great deal of therapy, including intensive outpatient hospitalization, since age 5.
He does very well academically and his behavior at school has improved, but he is extremely - and increasingly - challenging in all the ways you described at home. I haven't heard of PMT, but am trying to enroll my son in IBHS (intensive behavioral health services), which is similar to ABA (applied behavioral analysis). Good luck! Sharon
So much of what you've said sounds so familiar! My 10 year old son has ADHD & anxiety. There is a strong possibility he could have some other things like ODD, but the evaluator stopped short of diagnosing that because of the timing of his evaluation and COVID lockdown/school closures. We were hoping a lot of his behaviors would mellow once things get back to normal. And, they have to some extent but it is still a work in progress.
The final straw that caused us to seek a formal diagnosis & treatment for ADHD was anger/rage outbursts. These resulted in physical fights with his siblings and throwing things. We too have had times where my husband had to physically remove my son from a room and hold him until he calmed down. It is very frustrating and scary. Fortunately, my son is small and his punches don't do much physical harm at the moment. When he is calm I try to explain to him that he has to get this under control because when he grows up his punches can do serious damage. It doesn't help that his siblings (ages 9 & 11) intentionally pick on him! It is like they play a game to see who can make their brother pop first. We had him in therapy for a year. It helped some, but I found what helped most is exercise. When I see him starting to spiral I ask him to get on the treadmill for 20-30 mins. This machine is still new to him with videos of different places, so he usually agrees.
My son didn't test as gifted, but his IQ testing was done without the benefit of meds and he tested in the 98%-tile in some categories, but his working memory (25%-tile) pulled down his overall IQ . We paid out of pocket for his testing last Oct. and it was just shy of $2000. We have a daughter scheduled for a Psych Ed evaluation (suspected learning disability & inattentive ADHD) at a different practice and were quoted $1860. Depending on where you live, that $3k might be high. Of course, if you live in some areas in CA maybe that is a steal! If it were me and my son already had an ADHD and gifted (e2) diagnosis, I'd ask myself what would change if my son was diagnosed on the spectrum. If the answer was not much, I'd hold off on the testing for now and save the $. If there were beneficial services he would qualify for that would better his life, I might do it. In my area, an additional diagnosis wouldn't help my son. (Our school system is not great.) It would help me understand/parent him, but I can adjust my parenting assuming he does have "XYZ" without spending $3k.
Have you heard of Bright & Quirky? Even though my son didn't technically test as "gifted". The evaluator recommended it. It is all about e2 kids. We just joined in April. I haven't been the best participant. Work picked up right after joining so I'm behind in the sessions, but I've found it to be the best resource for understanding my son. It isn't cheap. I think $700ish for the year, but they have a summit every so often (quarterly?) that is free. Get on their email list so you'll be notified when the next summit opens up. ADHD & ASD seem to be their biggest "quirky" categories. It is still too early for me to 100% recommend the membership, but I strongly encourage you to signup for the summit and see if it might be helpful for you. So far I've found it to be more of a positive parenting guide geared towards the quirky kids and how we can better help them. It is pre-recorded videos with some live zoom meetings. I haven't attended any of the live meetings due to schedule conflicts.
Thank you for your response. You made a lot of valid points to consider. We’re meeting with our psych np in a few weeks and I’m hoping to tease out some of these things with her to hopefully move forward with the right choice. It just feels so much less lonelier knowing others are struggling too. I live in az but from what I’m learning this type of evaluation done through a psychologist is not covered by insurance. It seems to me that all the helpful evaluations and even therapy/parenting classes are not covered by insurance. Another reason I question why we pay for it. We did most of my sons testing through our school district so at least that was free. I just think families need these supports and they should be more easily accessed.
We're in a similar place with our 6-year-old son as you with the aggressive behaviors, refusal to clean his room, brush his teeth, etc. Due to recent disruptions in the home routine it's progressed to inability to fall asleep, followed by ramped-up hyperactive and aggressive behavior that has resulted in calls to 911, trips to the ER and sedation.
I understand the expense of full neuropsych testing being an issue. In our area there are a couple of hospitals with pediatric psych/behavioral programs that will do the testing and insurance will cover it. Might check to see what's in your area.
We've been working with one psychologist whose practice also works directly with my son's school (private school for kids with learning challenges). Her practice focuses on ABA, CBT, rewards programs, etc. We're trying to line up another psychologist more focused specifically on ADHD and related behaviors and that offers parent-child interaction training.
One of the often-recommended books on ODD is Ross Greene's "The Explosive Child". I need to re-read our copy.
This is really insightful and ICan look into that. That sounds awfully hard to go through with your son, sending big hugs to you. I’ve seen Ross greenes work, he has a lot of helpful tools online. I’m hoping to find a professional who can help us move towards either more cooperative behavior /and/or more testing to see if there’s something else going on.
As you mentioned, a lot of the problem behaviors you noted sound as though they could possibly be related to high functioning autism (unawareness of social hierarchy in the home, (his)logic as winning over hierarchy when asked to do things, lack of ability to take family member’s perspectives, picky eating, ). The testing he was referring to is likely a neuropsychological evaluation which are often expensive and not always covered by insurance. Have you seen a developmental behavioral pediatrician (usually at bigger university hospitals)? They are much better at recommending good treatments and generally following a child’s care in addition to diagnosing. They are covered by insurance.
Even without an official diagnosis, you can reach out to therapy providers for evaluations. Many bright kids on the spectrum benefit from OT for sensory issues. Picky eating is one. Speech is critical for teaching social thinking skills and social behavior. Michelle Garcia Winner has a lot on this online (it’s almost too much. A little overwhelming). But speech is great for the pragmatic learning, for understanding perspective taking, learning to ‘read the room’ understanding how your actions affect others emotions, thoughts, and actions back to you—so many pieces missing with ASD that can result in ODD type behaviors but are really manifestations of anxiety from living in a world and with reactions that they don’t intuitively get.
Just like pediatricians and psychiatrists—-there are good ones who are knowledgeable and well versed, and there are others who are less versed in this population. Call your local autism society and find out who they recommend for OT and Speech. Insurance covers initial evaluations.
I understand the heartache and frustration you describe. You are doing everything for your little boy. Please know that with the right therapies and medications, it does get better. It is just so hard getting there. Our son was diagnosed late. Giftedness hides much.
Edited to add, please consider asking your ped about adding methylated vitamin b-12 and methylfolate vitamins for six months and see if you see any change. Some kids have genetic abnormalities that affect processing of these nutrients and correcting them can help neurotransmitters.
I appreciate your response SOO much. I looked into developmental pediatricians and the fee is much more affordable (and goes towards our deductible). The ones on my insurance are booking out towards march so after my visit with our psych np (who did our initial evaluation/manages meds) I will hopefully have a clearer idea of which way to move forward. I’m aware of he b-vitamin methylation issue and we all are on a high quality supplement. Our Np recommends an omega 3 supplement and N-acetyl-cysteine too. I should ask our np if she can prescribe it though. I’m not the most consistent with the vitamins and they are expensive but I should probably get back on focusing on nutrition supplements/etc. When you say your son was diagnosed late, can you tell me what age?
Your Insights and encouragement mean a lot and I so appreciate you taking the time with a thoughtful response.
Yikes—March! Dev Behavioral Ped’s are often booked far out. Sometimes they keep a cancellation list and you can get lucky and get in earlier. I hope your NP can point you in the right direction in the meantime. Sometimes they can help facilitate a quicker referral too.
That’s great that you are already familiar with the methylated b vitamins—we only learned about them after genesight testing showed a need. Huge difference in temperament for our son after 6 months, but his body really needed them. Others may not.
I hear you about food and nutrition and picky eating. Something that helps here is having my son help prepare the food. There is a community garden that runs children’s camps nearby and we discovered that if he pulled the vegetable or plucked it, he would eat it. It really helped him branch out. Now if he helps prepare a dish he’s interested in, he will eat it. If I prepare it, it’s dissected, lol. Sensory wise he still won’t mix creamy sauces/dressings with different textures ( spaghetti, salads, ketchup , etc), but he at least tries most fresh foods.
Our son was diagnosed in first grade. We saw a number of people, before the developmental pediatrician, who assured us that he was just very bright. He was great with adults, very talkative, good eye contact, interested in everything, didn’t line up items, perseverate on parts of toys, none of the overt signs. But he struggled with social understanding, behavior, interactive peer play, doing as told, etc. It took having the formal ADOS assessment to get the diagnosis, and even then, he only met it by one point. Now, however, it is clear, although the behavior issues that caused us to seek it are mostly gone (new issues, as always with kids lol).
Hi! I'm sorry you're going through this. Out son has had very similar struggles. We did end up getting the full neuropsychological evaluation for him. It was partially covered by our insurance, not 100% but partially. He was diagnosed as on the spectrum as well as anxiety/adhd. This was helpful for us to know... so helpful. We feel we better understand him and his struggles. I totally understand though if this kind of eval isn't covered by you insurance that is a lot of money. Maybe there is another way to go like the suggestion made above (developmental behavioral pediatrician)? The more you can learn what's going on with him the better you I'll be able to understand and help...I wish you luck. I know how hard it can be.
That’s encouraging that you were able to do the full evaluation and it’s been helpful. My son has adhd/anxiety too. I’m curious what interventions have been helpful now that you’ve had your evaluation. Also would you mind sharing your sons age?
Hi, sure I'm happy to share. My son is nine years old, almost 10. Interventions that we've been using since he received his autism diagnosis have included starting ABA therapy at a local autism center.. We also have adjusted the way that we are dealing with him at home in terms of meltdowns and resistant kinds of behaviors. We've shifted our approach from not really understanding why he severe meltdowns were happening to being able to catch them earlier on and see more clearly what is triggering them for him. Most of the time it's because of a sensory response, or an anxiety response, or a simple misunderstanding due to some of the struggles he has with interpreting tone of voice and other language misinterpretations. It's been a huge shift in perspective for us, just knowing that he has autism, we feel we understand him more now. Whereas before we were so flummoxed and frustrated as to why his behaviors would become so severe so quickly. We also have him on appropriate medications. He did not tolerate stimulant medication at all, so we have him on guanfacine and also low dose Zoloft, which are good medication's for him and his autism. They help manage his anxiety and sort of just bring him down a little bit, in the right way. The other intervention that we have made since receiving the autism diagnosis is informing his teachers, parents of his friends, and other family members who know him well and interact with him, so that they also can be supportive in their approach towards him. We were realizing that his behavior was not only being misinterpreted at home but also at school and in other places. So it's really helpful for important people in his life to know that he has this so that they also can adjust the way that they approach him and help him in the right way. Lastly we have him involved in therapeutic boxing and also hip-hop dance. These are two things that he feels really confident doing, so he has some places in the world where he feels supported and understood. I think this is really key. So that your child doesn't end up feeling isolated and like there's nowhere for him to fit in or feel understood. Sorry this is a lot of information...I hope it helps.
First big hugs and take a deep breath! As you’ve seen you are not alone.
Two questions:
1. Does your son act like this on his meds at home or does the behavior get worse once the meds wear off?
2. Do you medicate him 7 days a week?
I also have a fast metabolizer son and he takes a combination of short and long (XR) active Focalin. We have to overlap the 2 meds bcz he’a body chews through them. It also helps because once the XR wears off, the short acting dose (10 mg) helps with the transition into the afternoon/evening. Your son may need another small dose like this in the afternoon. Also, once the meds wear off, my son would be defiant and explosive. With the extra small dose of meds, this goes away. It’s like their bodies crash and burn and instead they need a level amount of meds throughout the day especially if they are a high metabolizer.
I also highly recommend keep the medicine on a set schedule 7 days a week! This should also help avoid the explosive behavior. It’s crazy but my kid is a totally different kid with meds. I’ve been on this journey for 12 years and it does get better as they mature once you find the right combination of meds. We went through 3 dr’a and 8 meds before we found the right one so don’t give up. Keep track of all the behaviors if you do change meds. Some of these ADHD meds will also cause kids to get worse! The good news is you will know immediately because the meds are out of their system quickly. If it doesn’t work, move on. There are a lot of med options out there. Definitely work with someone who specializes in pediatric AdHD meds. We work with a psychiatrist.
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