slnf1488

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

GhostOrchid

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.

Bunny5689 in reply to GhostOrchid

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.

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Nats2005

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.

Bunny5689 in reply to Nats2005

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.

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Aspen797

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.

Bunny5689 in reply to Aspen797

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.

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Aspen797 in reply to Bunny5689

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).

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Auggie123

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.

Bunny5689 in reply to Auggie123

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?

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Auggie123 in reply to Bunny5689

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.

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Ldydy24

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.

HoldingonLou

I'm just following. There is much better advice here than I have found or could offer.