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Does anyone have experience with this? As I was researching and googling this morning, this came up, and this pretty much explains ds and his noncompliance with (mostly) my husband and myself, and occasionally my mom because he spends a LOT of time with her. He responds well to coaches, etc, but can be very defiant. Several people here have suggest ASD but this fits him more. He does well socially too. Just curious what others may have experienced. 

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Both can have non-compliance. The ASD adds the repetitive behaviors, restricted interests, etc. 

 

Kids float among labels, so someone could start ODD and move on to ASD later. It's not really an absolute thing, because it's not based on actual biology, just symptoms, and which symptoms and behaviors you get put onto the questionnaires.

 

2E kids can be really confusing with ASD. My ds actually is really charming socially, when he engages, because he has this astonishing vocabulary and professorial way of conversing. 

 

If you want perspective on his behaviors, your two best bets are to get him in large numbers of agemates (so you can see how he compares to his peers) and to bring in a behaviorist/BCBA to work with him. The behaviorist will catch a lot more. You might find that it's shocking how he interacts with strangers. You're saying his social is fine when he's with people he's used to, but it's another parameter when he's with strangers. You can also find that he's different on his turf (in his own home) with strangers than he is in other places. My ds has some of his most extreme behaviors at home, because he's most comfortable. Kids can have a honeymoon period where the anxiety makes them clam up and you don't see what's really going on. Like they might show the behaviors, or it might be 6-9 weeks or more before they get comfortable enough that behaviors start to occur. 

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Well I know I sound resistant to the ASD label and don't think I haven't thought it on my own. But...he wrestles with 1000 strangers and makes friends on the mat instantaneously. We ski with a wide range of age groups and he fits in with kids older and younger than he is and made friends easily. He hasn't made any friends on the swim team, but neither has his older sister who is also very social...and frankly the community we swim in is very snobbish. He is not uncomfortable in any social circumstance he has ever been in. He can act strangely after some time in a social setting but he gets intense headaches so it's hard to discern how much of that is pain related. He gets headaches almost daily--at home, in public, it doesn't matter what his activities are. He is nonchalant about friendships, as in he doesn't care if someone doesn't like him, but he makes friends easily. All three of my kids are comfortable in every social situation we have ever been in, that I can think of. He does not appear any different in those situations than any other kid.

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Two of our close friends are high functioning ASD...but they are both awkward socially, to some extent. Granted I am his mother, but he does not exhibit the "plays alone, doesn't make eye contact, can't see humor in stuff other kids do" that I have seen. That's why I asked what it might look like--because maybe my perception is skewed by my own personal experience with high functioning asd.

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What kind of repetitive behaviors? He whistles and it's annoying and frequently taps his pencil or his foot or whatever but I was told that is typical of ADHD. He doesn't have restricted interests that I notice either, as in he doesn't obsess about any one thing. We've all thought him off in that he doesn't have an obsession of any kind really. He will obsess for a period of time over things (yesterday it was 45 minutes of being angry because he wanted a new iPod game that wasn't appropriate). As soon as it was over it was over.

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What kind of repetitive behaviors? He whistles and it's annoying and frequently taps his pencil or his foot or whatever but I was told that is typical of ADHD. He doesn't have restricted interests that I notice either, as in he doesn't obsess about any one thing. We've all thought him off in that he doesn't have an obsession of any kind really. He will obsess for a period of time over things (yesterday it was 45 minutes of being angry because he wanted a new iPod game that wasn't appropriate). As soon as it was over it was over.

 

Yes, just the things you're saying (tapping a pencil, etc.) are just typical ADHD fidgeting, no biggee. Ds has sort of atypical repetitive behaviors. Lately it has been this really weird nasal humming where he hums and makes it go through his nose. They rotate, so in a month with it will be something different. He'll have odd flicking motions with his fingers as his repetitive thing, do that for maybe a month, and then it changes. He had this gig where he HAD to tickle my belly/back if I bent and skin showed. Like it was a serious compulsion to him! One round it was untying our shoes when he went to the bathroom. He went through a stage where he would unbuckle his seatbelt and climb into the front of the car once we got to the driveway. That was really unsafe! He'll do things like trilled Rs. That's not his thing now, because he's on the nasal thing. But for a while there, maybe 6 months ago (I forget) we had a lot of trilled Rs. It would go on so long, so frequently, you could get it on video. 

 

Repetitive behaviors can also include echolalia (repeating lines or paragraphs from movies or books), lining things up (definitely my ds, oy), etc. I'm just saying you do have to kind of view it with an open mind, because it can be kind of broad. But NOBODY looks at my ds and thinks the behaviors are ADHD fidgeting. They're always pretty intense, in his zone, something that is just going, and it's consistent across days or a month or two and across environments, enough that I can video them and log them. They *increase* if he's stressed or unusually happy (red zone) and decrease when he's in green zone. 

 

Restricted interests, again this is in the criteria, yes? Like with us, it SEEMED like he had a lot of interests. Then we wrote them all out on a paper and realized they all had ONE uniting feature. That feature is his obsession. We went to Disney last week and didn't think to take anything for his obsession. He literally spent days of our trip hunting for something to go with his obsession, whining, falling apart. It was a MESS. So again, with high IQ it *can* be more complex. My ds looks like he has 5 or 6 interests, but he actually just has one obsession and lots of ways it plays out. In other words, we've chained to broaden him out, but the obsession is still there. ;)

 

What you're describing as obsessing sounds like a tantrum. Someone can get stuck for a while or really want something or have a meltdown. The ASD restricted interests are pervasive. Like if you give my ds a sheet of stickers, he'll start connecting them to his obsession/special interest. It's ALWAYS on his mind and it's the connector for everything he does. But we didn't realize quite the degree till we actually listed everything out. Then we could see it. Like if you knew his special interest, you'd be surprised he really likes Paw Patrol. Then you realize his special interest is there, in PAW PATROL, when you view it the way his brain does, lol. 

 

They will diagnose ADHD with social delay. Also ODD can be on the table, sure. And they'll say cognitive rigidity due to anxiety. It's all sorta ASD-1, ASD-2. You keep minusing enough and eventually you switch labels. So it's not your imagination. The main thing is just to gather data and get someone committed to spending the time to sort it out. The psych who diagnosed him with ASD spent HOURS with him, just on that question. They did lots of activities together, provoking behaviors, observing reactions. Our behaviorist did the same thing, observing for a number of hours then interacting with him. 

Edited by OhElizabeth
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Yes, I would definitely describe the "obsession" he had this morning as a tantrum. This afternoon it was 30 minutes of crying (sobbing) about how hard Barton is and how its making reading worse not better. He had coffee after his tantrum this morning--was almost instantaneously better. I probably shouldn't have but I gave him coffee again after lunch. He could have some missing obsession but nothing jumps out at me. He is interested in sports, but even that doesn't trigger reading for him, and its not sports like you see on t.v. (i.e. basketball/football/baseball) at all. He likes motorbikes, skiing, swimming, wrestling (greco-roman), trapping, hunting and fishing. ALL things outdoor--playing in the dirt. 

 

Anyway, we have sought out all kinds of factors that could contribute to his headaches, from food to smells, etc. He does have convergence issues...that was in his vision diagnosis we just got. He is getting glasses next week that should help that if that's the cause???

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Glasses may not really address the convergence insufficiency issues.  He may need vision therapy.  How extensive was the eye exam?

 

As for melting down over Barton, if he has developmental vision issues you may need to make all lessons very short then give his eyes a break in between.  DD has to take breaks or she gets headaches and severely fatigued and cranky.  A lot of that is vision but some is just that with the dyslexia anything regarding reading is fatiguing for her brain, regardless of the fact that she now reads at grade level.  

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Two of our close friends are high functioning ASD...but they are both awkward socially, to some extent. Granted I am his mother, but he does not exhibit the "plays alone, doesn't make eye contact, can't see humor in stuff other kids do" that I have seen. That's why I asked what it might look like--because maybe my perception is skewed by my own personal experience with high functioning asd.

My ASD kiddo comes across as a bit different, but we have people who say they'd not think ASD unless we brought it up as well as people who are familiar enough with kids like him to realize it's ASD. It really depends on the situation and the person's POV. We had both of those reactions from camp counselors last year, and both camp counselors spent similar amounts of time with him in the same situations (sleep away camp for a week). Both counselors didn't know him prior to going to camp. Totally opposite reactions to the same child!

 

My son does play alone and in groups and loves people. He does make eye contact (but sometimes doesn't, or his kind of eye contact is a bit different (some people suggest that some ASD folks will zone in and have overly intense eye contact, and I think that can be the case sometimes too), and he has a very good sense of humor that includes finding people amusing. I really just depends. But he's definitely on the spectrum. Everyone that knows spectrum kids validates that. 

 

Yes, I would definitely describe the "obsession" he had this morning as a tantrum. This afternoon it was 30 minutes of crying (sobbing) about how hard Barton is and how its making reading worse not better. He had coffee after his tantrum this morning--was almost instantaneously better. I probably shouldn't have but I gave him coffee again after lunch. He could have some missing obsession but nothing jumps out at me. He is interested in sports, but even that doesn't trigger reading for him, and its not sports like you see on t.v. (i.e. basketball/football/baseball) at all. He likes motorbikes, skiing, swimming, wrestling (greco-roman), trapping, hunting and fishing. ALL things outdoor--playing in the dirt. 

 

Anyway, we have sought out all kinds of factors that could contribute to his headaches, from food to smells, etc. He does have convergence issues...that was in his vision diagnosis we just got. He is getting glasses next week that should help that if that's the cause???

 

Perseveration is another features of ASD, and this could be perseveration. I can't remember if it's in the DSM criteria, but kids not on the spectrum sometimes perseverate too.

 

Obsessions can be serial in nature, or there can be several obsessions. 

 

The glasses might help the headaches.

 

Overall, ODD is something very much worth considering in the panoply of things you are seeing. 

 

What really helped me is hearing a presentation on 2e kids, and hearing the speaker explode several myths about 2e kids with autism. My husband and I walked out of that presentation saying, "It's time to get this settled, and I can think of at least two more kids who are likely on the spectrum too!" 

Perseveration is another features of ASD, and this could be perseveration. I can't remember if it's in the DSM criteria, but kids not on the spectrum sometimes perseverate too.

 

The glasses might help the headaches.

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Glasses may not really address the convergence insufficiency issues.  He may need vision therapy.  How extensive was the eye exam?

 

As for melting down over Barton, if he has developmental vision issues you may need to make all lessons very short then give his eyes a break in between.  DD has to take breaks or she gets headaches and severely fatigued and cranky.  A lot of that is vision but some is just that with the dyslexia anything regarding reading is fatiguing for her brain, regardless of the fact that she now reads at grade level.  

There is a waiting list for VT, so we are on it for May/June. In the meantime, she prescribed special lenses to help with his issues. I am just praying that it will help between now and then. We are getting the glasses from his regular eye doctor who thought it seemed like a "decent idea" so I feel like its worth the $350 out of pocket to try that. And we never get more than 20 minutes out of him for Barton. He just completed level 4--I don't know, maybe we need to slow up and go back through it again. He is just overwhelmed at all there is to remember! I could start another thread...this kind of just came to a head the past 3-4 weeks and we kept thinking it might ease up but he's just overwhelmed in general. He is tackling beast academy and just completed his first starred problem and said it was easy as pie. I warned him it might be tricky but it was easier for him than the other problems. 

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My ASD kiddo comes across as a bit different, but we have people who say they'd not think ASD unless we brought it up as well as people who are familiar enough with kids like him to realize it's ASD. It really depends on the situation and the person's POV. We had both of those reactions from camp counselors last year, and both camp counselors spent similar amounts of time with him in the same situations (sleep away camp for a week). Both counselors didn't know him prior to going to camp. Totally opposite reactions to the same child!

 

My son does play alone and in groups and loves people. He does make eye contact (but sometimes doesn't, or his kind of eye contact is a bit different (some people suggest that some ASD folks will zone in and have overly intense eye contact, and I think that can be the case sometimes too), and he has a very good sense of humor that includes finding people amusing. I really just depends. But he's definitely on the spectrum. Everyone that knows spectrum kids validates that. 

 

 

Perseveration is another features of ASD, and this could be perseveration. I can't remember if it's in the DSM criteria, but kids not on the spectrum sometimes perseverate too.

 

Obsessions can be serial in nature, or there can be several obsessions. 

 

The glasses might help the headaches.

 

Overall, ODD is something very much worth considering in the panoply of things you are seeing. 

 

What really helped me is hearing a presentation on 2e kids, and hearing the speaker explode several myths about 2e kids with autism. My husband and I walked out of that presentation saying, "It's time to get this settled, and I can think of at least two more kids who are likely on the spectrum too!" 

Perseveration is another features of ASD, and this could be perseveration. I can't remember if it's in the DSM criteria, but kids not on the spectrum sometimes perseverate too.

 

The glasses might help the headaches.

 

Perseveration also occurs in ADHD. I don't know...its totally possible he's on the spectrum. Its just not really on my radar like the eye issue and add has been. Maybe it needs to be, but I keep going there hoping and nothing really stands out.

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Perseveration also occurs in ADHD. I don't know...its totally possible he's on the spectrum. Its just not really on my radar like the eye issue and add has been. Maybe it needs to be, but I keep going there hoping and nothing really stands out.

 

Yep.

 

It's hard. I think if ODD sounds promising, maybe that is a lot of it.

 

He's at an age where it will probably start becoming more clear, not less. 

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Yep.

 

It's hard. I think if ODD sounds promising, maybe that is a lot of it.

 

He's at an age where it will probably start becoming more clear, not less. 

Yes, well, I keep thinking he will reach an age where he will grow out of the terrible twos. That's so funny and not funny, but the story of my life. I am sorry, I'm grumpy and fed up, but I am not cut out for this kind of parenting. I am weak emotionally myself. Okay, enough grumbling...off to parent like I'm cut out for it...

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Dyslexic children often suffer from anxiety as a result of their struggles to learn.  It can become quite debilitating, and extend far beyond school issues, often presenting as anger rather than fear.  Anxiety can also cause physical symptoms like headaches.  

 

Regardless whether it is ODD, ASD, ADHD, or anxiety, a full neuro-psych evaluation will give you the answers you need.  The testing is time consuming and intimidating, but absolutely worth the investment.

Edited by Plink
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Are you the one living hours away who has few options? Because that's a LONG time to wait for VT, mercy. Like if the real issue is money, do one appt a month and get lots of homework. I would *assume* the headaches are his vision, because they probably are. He needs that VT to begin ASAP. 

 

Has he been screened for retained reflexes? That's another thing to get done during this time. 

 

And I agree with Plink that the stress is coming out with anxiety and frustration. Personally, I'd probably back off for a while. Barton 4 is pretty stinking good for his age. He sounds very self-aware and able to verbalize his feelings.

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Yes we are very remote. We did screen for behavioral, and ADHD was the diagnosis. I'm sorry, I have several threads going right now...too many things! Vision therapy is that far out, and afaik, they are the only place within 300 miles. I posted on my other thread about the reflexes--i sort of did my own and he has retained palmar for certain but none of my other very official and scientific tests (haha) turned up anything. I plan to get an OT eval asap...and by asap I mean April. :/

 

The NP eval was about 9 months ago, followed by neurofeedback. We have a follow up in two weeks.

 

We decided earlier today (my mom is his tutor) to halt Barton, plan one day of review per week for the next month or two for maintenance, and reconfigure some of his other subjects, See what neuro has to say...and go from there.

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If the NP said it was ADHD, then I think ADHD is likely the answer. Unless you doubt that he had a thorough enough screening.

 

DS had evaluations from his pediatrician, a psychologist, a psychiatrist, and a neuropsychologist (not in that order). Oh, and then a school psych. On the screening forms, he scored at the top of the range on many of the questions. The psychiatrist gave him the ODD diagnosis, though the others did not. So I think it can be subjective. The ODD came from the one who had spent the least time with him, so was purely based on how we filled out those forms.

 

Would it make a difference somehow if his label were ODD instead of (or in addition to) ADHD? I don't know enough about treatment for ODD to say. But I do think that these things kind of cross over each other in their symptoms, so some people might say ODD whereas others would say it is more ADHD.

 

Now, DS also has NVLD, so he is close to the spectrum. That exacerbates things, for sure. When we list his labels out on forms, etc., we never put ODD, because it was kind of a one-off diagnosis, given only by the one guy who didn't really know him.

 

He can be challenging to deal with, but we consider it due to his extreme impulsivity, combined with his social skills deficits. Part of his social skills deficit is Theory of Mind, which means he doesn't see things from others' point of view. That absolutely contributes to the arguing and the anger over not getting his way. Because his way is the only way he understands. Sigh. Anyway, there are many factors to social understanding other than friendliness, so it could still be something for you to look into.

 

Medicating the ADHD helps tremendously at our house.

 

 

Edited by Storygirl
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 We did screen for behavioral, and ADHD was the diagnosis.

 

The NP eval was about 9 months ago, followed by neurofeedback.

 

We have a follow up in two weeks.

 

His testing was very recent!  Unless there were some horrible flaws in the process, I would assume that the doctors are on top of this, and his behaviors truly are rooted in ADD, learning disabilities, and any other dx you were given at that time.  Talk with your np at your appointment in 2 weeks, but, honestly, I wouldn't hold my breath for a diagnosis change.  Instead, I'd focus on asking for a list of proven strategies that they suggest for kids with your son's specific combination of disorders/strengths.  That list was a lifesaver for me.

 

I know how frustrating it is to watch your child struggle.  I'm so sorry.

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Kids with ODD frequently have ADHD. And it's a fine line not usually drawn until they are older--maybe around this age. He has definitely been through phases, too, so depending on when I fill out the form, the dx could change dramatically. I think more than likely he fluctuates, like someone with depression might fluctuate in and out, and right now he is oppositional but in 3 weeks he might be less so. I doubt it's a rigid line in at least some cases.

 

By the way, I totally understand that the anger and noncompliance could be a result of extreme anxiety and I think that's a pretty good bet. Maybe backing off a bit will reduce that and give me some insight.

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Make a little chart and see, but I think your intervention will be the same, whether the non-compliance is ADHD, ODD, or ASD. You're still going to find that punitive/punishment doesn't improve perspective taking and theory of mind, and that he's going to put his hackles up and get defensive. So you're going to use positive methods, redirecting, praise, improving perspective taking and social thinking. All that is the same, irrespective of the label.

 

Says the woman whose kid does not have an ODD label. I'm just saying see, but you might find that, to some degree, is the case. The mix varies and extremity varies, but you'll probably find a lot of the tools you want are the same. You can go to socialthinking.com and see their stuff.

Edited by OhElizabeth
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Kids can have ALL those things going on. None of them really explain the root cause of ODD and extreme behaviors anyway, like not really. Kids have those issues and *don't* have those extremes also, so those issues aren't really the cause but are co-morbid. If you want to get interesting, try reading about niacin. That's what I'm trying with my ds now. I've taken it myself for some time to good effect, though I thought it was just for my headaches. Turns out it does lots of other things as well.

 

https://www.google.com/search?client=safari&rls=en&q=niacin+oppositional+defiance+disorder&ie=UTF-8&oe=UTF-8

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Well I got off on quite the little rabbit trail with vitamin and mineral deficiencies in kids with ADHD, not to mention all the info on nutrition/allergies that could be the culprit. Maybe a trip to the naturopath is necessary too! Oh my goodness it's too much. 😂😱

 

I know there are a lot of people who medicate with great success but when you google meds and it says "amphetamine" and your cousin was an amphetamine addict who recently hung himself in a storage unit not to be found for weeks because he was headed for prison for the 4th time in his life, even the word makes me hyperventilate. I just can't do it. 😰

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Maybe you need to just take everything, put it on a list, and mull over it or pray over it. And that's fine if you're not ready to hear things or try things. I get it. But maybe just make a list, because you've been given a lot of serious btdt advice here. I'm giving my ds niacin and I'm seeing what it's doing for him. I didn't say get overwhelmed and go to a naturopath and get sold on $$ stuff. I know how that rolls. I use a nutritionist myself and have been to these alternative people and know how overwhelming that gets (and expensive, and ineffective).

 

OF COURSE the stimulant meds are either amphetamine or methylphenidate. That's the only two types there are. The difference is the modern delivery systems, with teeny tiny, carefully controlled doses. Go read about how Vyvanse actually works. It's a pro drug, linked to a chemical that only breaks down with an enzyme the body produces on a controlled schedule. I think about this stuff pretty seriously, because dd is going into college. That's a pretty tempting place! I agree, having a generic 4 hour that you can abuse, that's pretty tempting. There's a big movement away from those and toward these 12 hour meds and extended release with really careful mechanisms.

 

I've got bruises up and down my arms. Like my ds' behavior is a really serious thing here. I guess everybody has to get to their breaking point where they make a change. My observation is that most people, when they finally make that change (meds, evals, bringing in ABA or behavioral help, whatever) usually wish they had made that change SOONER. 

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mamamoose, I can understand your personal angst about the medication issue. :grouphug:

 

Different people make different decisions. I was resistant to the idea of meds until the difficulties of dealing with an unmedicated child became overwhelming for our family. Actually, we were well past that point -- DS was age 9 and had been difficult to parent always.

 

If some day you get to a point where you want to read about the pros and cons, you can find a lot of helpful information. Even on the LC board here, there have been some very interesting threads that discuss the issues and related scientific studies. I can't cite a source for you, but I have heard that there is MORE drug abuse among unmedicated teens with ADHD than among those who are medicated. Also, the meds work differently in the brain with ADHD -- my son does not get a high from his meds; in contrast, they calm him down.

 

My son happens to be a big risk taker and rule challenger, so we are very worried about the possibility that he will experiment with drugs and alcohol in his teens (he will be 13 this spring :crying:  so these things are on our mind). I really understand that concern.

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mamamoose, I can understand your personal angst about the medication issue. :grouphug:

 

Different people make different decisions. I was resistant to the idea of meds until the difficulties of dealing with an unmedicated child became overwhelming for our family. Actually, we were well past that point -- DS was age 9 and had been difficult to parent always.

 

If some day you get to a point where you want to read about the pros and cons, you can find a lot of helpful information. Even on the LC board here, there have been some very interesting threads that discuss the issues and related scientific studies. I can't cite a source for you, but I have heard that there is MORE drug abuse among unmedicated teens with ADHD than among those who are medicated. Also, the meds work differently in the brain with ADHD -- my son does not get a high from his meds; in contrast, they calm him down.

 

My son happens to be a big risk taker and rule challenger, so we are very worried about the possibility that he will experiment with drugs and alcohol in his teens (he will be 13 this spring :crying:  so these things are on our mind). I really understand that concern.

 

:iagree:

 

Also, I know someone with an easily addictive personality who has taken ADHD meds, and they find the meds to be helpful, not addictive--this person has grounds for comparison. The biggest risk takers I know are people who fit the profile of unmedicated person with ADHD. The people I know who take ADHD meds are productive and proactive about their issues.

 

I also agree that comorbidity can be an issue with anything in this direction--I know someone who is both bipolar and ADHD, for instance. It's not all cut and dry sometimes. 

 

States are cracking down hard on the Rx business for ADHD meds and opiates via insurance, pharmacies, and practitioner databases. It's a HASSLE to get ADHD meds each month--try going on vacation when you are about to run out, but it's too early to get the meds filled. The insurance company and pharmacy just about demand an itinerary from some third party to give you the script early. It's very frustrating. I honestly don't know how people with EF issues manage to get changes made to their meds or arrange vacations--it's hard enough to do this if you are NT and there are any glitches like the pharmacy being out of your particular meds (they don't always have much control over their supply!). You have to coordinate both the doctor's office's hoops/hours and the legal hoops and the pharmacy hoops/hours, and sometimes they even give you inconsistent information. 

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Oldest was initially Dx with ODD as a young boy and then it was upped to Conduct disorder (along with adhd and depression).  dd17 was Dx with ODD as a young girl but it went away as she grew.  DS13 has ODD with adhd, though I actually suspect he has ASD and was misdiagnosed (he has none of the behaviours that ds17 has/had, he disobeys me but generally his issues stem from not behaving socially appropriately not due to disobedience)

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How do you deal with weight loss issues and meds? We have enough trouble getting him to eat...that's another concern. And how do you quiet your mind with the warnings? I did google the medication suggested above but couldn't even get past the warnings!

 

You might find it's just the opposite, that he would be a little more calm and able to eat. But it's true the kids can get busy and not eat. You actually have to say no, we're really going to stop and eat lunch, and schedule it in. Many people find their kids get really hungry as the meds wear off. Also you'll make sure he eats a solid breakfast before giving him the meds. That way it's only lunch getting slighted.

 

It's something you can work around.

 

You might find the negative side effects are less than you imagine. It can happen. There are kids who, on a med that is a good fit, just basically have NO side effects. They just take it, get the good, and are fine. I mean, read the side effects of caffeine. You probably drink tea or pop and don't sit there sweating the potential side effects. 

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My son has always eaten like a horse and had no fat--he's solid, lean muscle. He eats like a normal person as lunch, and then he doubles up when the meds where off, lol! No one will keep that child from his food. Friends with the eating issue have their kids eat early, before meds, and they schedule small snacks that will be tolerated better than a larger meal.

 

Side effects? What are those? Seriously--we have side effects only with certain generics. The generics we use regularly have zero side effects, just positive effects. It took time to titrate to the right dose and to find a med that wore off on a good trajectory, etc. (not all delivery curves are the same). Otherwise, it's been smooth sailing on the child-end. Oh, the titrating the dose was an issue around a big growth spurt (and I mean big growth spurt--from 75th percentile-ish to 97th percentile). But titrating shoe sizes and pants length is about the same level of challenge right now. :-) 

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You might find it's just the opposite, that he would be a little more calm and able to eat. But it's true the kids can get busy and not eat. You actually have to say no, we're really going to stop and eat lunch, and schedule it in. Many people find their kids get really hungry as the meds wear off. Also you'll make sure he eats a solid breakfast before giving him the meds. That way it's only lunch getting slighted.

 

It's something you can work around.

 

You might find the negative side effects are less than you imagine. It can happen. There are kids who, on a med that is a good fit, just basically have NO side effects. They just take it, get the good, and are fine. I mean, read the side effects of caffeine. You probably drink tea or pop and don't sit there sweating the potential side effects.

Well when I google coffee (don't drink tea or soda), the first thing I see isn't a list of warnings.

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I can see my child visibly calm within 30 minutes of having coffee. We are using this now to avoid prescription medications. Two members of my household use non-stimulant medication. One also needs coffee (that'd be me), the other does not. 

What are the non stimulant medications?

 

I notice he is calmer with coffee too...but he doesn't really like it. 

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Well I got off on quite the little rabbit trail with vitamin and mineral deficiencies in kids with ADHD, not to mention all the info on nutrition/allergies that could be the culprit. Maybe a trip to the naturopath is necessary too! Oh my goodness it's too much. 😂😱

 

I know there are a lot of people who medicate with great success but when you google meds and it says "amphetamine" and your cousin was an amphetamine addict who recently hung himself in a storage unit not to be found for weeks because he was headed for prison for the 4th time in his life, even the word makes me hyperventilate. I just can't do it. 😰

And if you do the research you will find that unmedicated kids with ADHD are 5x more likely to become addicts when they are older because they turn to self medicate to control it. . . my brother and my friend's son are both addicts BECAUSE they were not medicated as children. My brother started drinking at 13 because he said it settled his brain. I know it is upsidedown from what you think. I thought it too. I said no way to meds because I have a history of addiction in my family. . . then they pulled out the stats on that one. Edited by Mom28GreatKids
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What are the non stimulant medications?

 

I notice he is calmer with coffee too...but he doesn't really like it. 

 

Both of my coffee drinkers use chocolate soy milk as their base and then mix in a good dose of instant coffee (I have it this way, too). It's a quick and easy mocha latte. Obviously, I'm not on the "no sweets" bus. Soy because my oldest is allergic to dairy so I don't keep liquid dairy in the house to avoid the risk of spills and contamination. 

 

Intuniv aka guanfacine is a blood pressure medication that is sometimes used for agitation, etc. It has worked for us. I think our doctor avoided stimulants because he wasn't sure what other conditions were going on with my kid. 

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As far as ODD, my son could have easily pushed over to this dx. For us, that dx doesn't matter, for whether he has it or not, we are coming at his behavior challenges the same way. It isn't like we would change what we are doing because they slap 3 more letters on him. So for him, ADHD, Anxiety NOS, Apraxia, SPD, we are in weekly contact with his behavior counselor, SN preschool 4 days a week, Speech 2x a week, OT 1 x a week. He is a complex and challenging kiddo. . . but he is doing great with the right interventions, meds, supports, therapies, etc. I cannot say enough about good behavior support. It has been LIFE CHANGING here.

Edited by Mom28GreatKids
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If you're seeing the caffeine works, you might as well consider the actual stimulant meds. They hit more parts of the brain (2 vs. 1) and have a better overall effect. Also, the half-life of caffeine is very short, basically 3-4 hours, like a non-XR release of adderall or ritalin would be. So if you have an older dc who needs to do work all day or drive and you want the all day effect, you either have to keep re-dosing the caffeine (which of course some people do) or go for an XR med. There *are* stats that the ups and downs of multiple doses like that can bring out bi-polar tendencies, though they don't have an explanation for *why*. It's a serious reason to consider a very smooth dispensing system.

Edited by OhElizabeth
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For the appetite issue...yes, the meds inhibit DS's hunger. When we were homeschooling, we used a four-hour dose, so he would eat breakfast, take his meds, eat lunch when they wore off, then take an afternoon dose. When he entered school, he went on a long-acting dose. He often eats very little at lunch, but he will then be hungry after school and eat the remainder of his lunch as a snack. Or he will double up on supper. He often eats a full supper at 6ish and then another meal or heavy snack around 8 before bed. I admit that it can be annoying to clean up the kitchen, only to have him get things back out again, but we just deal with it.

 

He's always been very slim but muscular. He did lose a few pounds when we first started the meds, and the pediatrician tracked it. It was only about three pounds. He didn't gain for awhile. Then he started gaining again. Even with the meds and his unusual eating schedule, he's gained twenty-five pounds over the three years that he has been medicated. So even though it has a suppressive affect on his appetite, that has not affected his overall health.

 

The thing to keep in mind is that when the meds wear off each day, they can eat, so you just have to adjust the timing of meals and meds. Sometimes easier said than done, but it can work.

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Vyvanse is on-label for binge-eating. There *are* people with ADHD who eat impulsively and who benefit from the effect. 

 

It's just something you watch. I have had friends over the years who took their kids off meds in the summer. Of course the more safety is involved, the less practical that is.

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Ds has been on methylphenidate for 2.5 years and it makes a huge difference. Improved my relationship with him bc I nag less when he's on it. When we were homeschooling we usually just did 1 pill for the morning (not extended release) so it was in his system for schoolwork and he was off it the rest of the day. Now that he is in school we do the extended release. His appetite is affected for lunch mainly. He is a husky boy (not fat but he weighs at least 10 pounds more than his older sister who is significantly taller). Big breakfast helps. I was very reluctant to medicate but we decided on a "trial." That's the thing-it doesn't need to build up in the system so you can try it for a week and then never do it again. It took us a couple of weeks to get the right dose and besides the small lunch issue we don't notice other side effects--except perhaps sometimes he gets chattier in an intense sort of way.

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My son, now 24, was given label of ODD and ADHD after a neuro/psy eval at age 10. They said at a young age that certain things like bipolar and ASD can be harder to diagnose so they are reluctant to give those labels. Ends up he was given the label conduct/mood disorder (bipolar) when he was 17.

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My son, now 24, was given label of ODD and ADHD after a neuro/psy eval at age 10. They said at a young age that certain things like bipolar and ASD can be harder to diagnose so they are reluctant to give those labels. Ends up he was given the label conduct/mood disorder (bipolar) when he was 17.

So what does this mean for him now?

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