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    Joined: Apr 2015
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    DS12 has taken stimulant medication at low-to-moderate dose since third grade and it worked reasonably well until it wasn't "enough" and dose increases/med-class-change made things worse (bc of side-effects).

    I'm trying to get a handle on which behavioral components have caused the most trouble at school. His profile has always been difficult for me to understand, because he didn't nicely fit into any of the ADHD sub-types. He would most closely fit the inattentive type because he does not have any "hyperactivity," whatsoever and is really unusually slow, physically. In fact, as my mother pointed out, in some ways it seems a lack of impulse seems to be a greater issue than too much. I think what she was really describing is a large deficit in task-initiation (but that is another subject).

    Except. He does blurt out in class, interrupts instruction, and doesn't have any awareness of when to put on the brakes, verbally. He doesn't do this when stimulant med is pushed high enough, but then the side effects are unbearable for him.

    He doesn't have a big issue with sustained attention, once it's initiated, much more trouble switching gears (hyper focus?)

    I think he becomes easily overstimulated, experiences physiological reactions to the social demands of the classroom, and what existing self-inhibitory skills exist (not a lot) are hijacked. Add to that a moderate lack of social savvy and he becomes a hot mess. No brakes.

    Additionally, he is the kid who is not in tune with non-verbals and implicit social expectations. So while his classmates are savvy enough not to get "caught," that's not even on his radar.

    Because he seem unable to tolerate stimulant medication at high enough doses to be useful, I'm considering asking for a trial of extended-release guanafacine (Intuniv), minus stimulant, for the next few weeks before school starts. It is thought to be helpful with impulsivity. It may or may not have additional benefit of reducing anxiety and improving appetite, sleep. According to my research, some doctors prescribe in tandem with stimulant.

    I know you are not doctors, so am not asking for medical advice, but am asking if anyone can help me pinpoint the excessive talking issue in terms of EF. If it's an impulsivity issue, it seems reasonable that treating that might be beneficial.

    We do not have a developmental pediatrician in our area and also have very few pediatric psychiatrists. Part of last school year's difficulty was that even though we had a psychiatrist on board, he could not see DS for what were (to me) emergent problems, since the first priority is children in psychiatric crises. Getting kicked out of your gifted program doesn't meet that criterion.

    He has a new pediatrician who feels comfortable prescribing front-line ADHD medications but said he didn't think he'd want to go much beyond that, although he might go as far as SSRI/SNRI under certain circumstances. I am relatively certain he'd be willing to give the Intuniv a go, since it's not a controlled substance or anything with a terrifying SE profile.

    So--what is excessive talking? Besides something that causes a lot of trouble in school...I know that part already. I know a lot of gifted children are chatterboxes, but his problem is well beyond norms.



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    Have you looked at the diagnostic criteria for Tourette's? Verbal impulsiveness could be a tic behavior that's being missed as such. Keep in mind that tics don't have to be complex or bad to meet the criteria.

    Tourette's and ADHD often overlap (along with OCD). Stimulant medication for ADHD can make Tourette's worse, which would explain why moderate doses don't help your DS with the verbal stuff.

    Does he have any other behaviors that could be mild physical tics (ie shoulder shrugs, lip licking, facial expressions, subtle hand movements, etc.). With Tourette's the uninitiated look for the "big things" like flapping arms, but many Tourette's sufferers never have exaggerated tics such as those... instead they're mild and get overlooked and categorized as small fidgets.

    Fyi my daughter (12) was recently diagnosed, and it came out of left field for me. She fits in the ADHD/OCD sub-type. I called the OCD years ago, and ADHD fits too, but Tourette's was not even on my radar until the psychiatrist brought it up... then all the pieces fell together and it made sense.

    Anyway... just something to think about.

    Also... what kind of side effects does your DS have to the meds when the dose is high enough to calm down the verbal stuff?

    Last edited by CCN; 07/27/15 10:14 AM.
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    Eco, do you have a Children's hospital anywhere in the region? You need an expert prescriber.

    Some people find that Intuniv can be combined with lower doses of stimulants. But you need an expert to help you with this.

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    Originally Posted by CCN
    Have you looked at the diagnostic criteria for Tourette's? Verbal impulsiveness could be a tic behavior that's being missed as such. Keep in mind that tics don't have to be complex or bad to meet the criteria.

    Tourette's and ADHD often overlap (along with OCD). Stimulant medication for ADHD can make Tourette's worse, which would explain why moderate doses don't help your DS with the verbal stuff.

    Does he have any other behaviors that could be mild physical tics (ie shoulder shrugs, lip licking, facial expressions, subtle hand movements, etc.). With Tourette's the uninitiated look for the "big things" like flapping arms, but many Tourette's sufferers never have exaggerated tics such as those... instead they're mild and get overlooked and categorized as small fidgets.

    Fyi my daughter (12) was recently diagnosed, and it came out of left field for me. She fits in the ADHD/OCD sub-type. I called the OCD years ago, and ADHD fits too, but Tourette's was not even on my radar until the psychiatrist brought it up... then all the pieces fell together and it made sense.

    Anyway... just something to think about.

    Also... what kind of side effects does your DS have to the meds when the dose is high enough to calm down the verbal stuff?
    He doesn't have tics, but I understand why you mention that (eldest does--we are a neuro ABC soup around here). Intolerable side effects are loss of appetite, insomnia, and mood lability. All pretty extreme. He didn't have these issues to the same degree until last year. Puberty seemed to really upset the apple cart. He'd come home from school "starving" but couldn't eat (and hadn't eaten lunch). Would be shaky and miserable--still couldn't eat. Made up for it by eating like a horse on the weekends (no med). Couldn't get to sleep, even with melatonin. Depressive, irritability, withdrawn. The doctor doesn't care as long as he's growing (he is) but it's a miserable existence. He did not seem med sensitive until this year.
    Originally Posted by DeeDee
    Eco, do you have a Children's hospital anywhere in the region? You need an expert prescriber.

    Some people find that Intuniv can be combined with lower doses of stimulants. But you need an expert to help you with this.
    DeeDee--The closest is 300 miles away. We did go this route with eldest, but a lot of circumstances have changed since then and not sure it's realistic. It seems to be quite difficult to get information from a distance.

    When you say expert prescriber, do you mean developmental MD (pediatrician/psychiatrist)? Are there med issues specific to developmental disorders? How do I learn more about those?

    I wish we had access to more specialists. FWIW, when eldest DS had uncontrolled seizures, we went to Children's because of pure desperation and terrible local pediatric neurologist. With epilepsy medication (and I know this sounds unlikely, but it's true) mostly it's just a crap shoot. Mechanism of action is "unknown" for neuro meds and basically you read the side effect profile, decide which is least-worst, and roll the dice. Then you balance seizure control (or lack thereof) against side effects and QOL. I actually think most brain meds are like this. People hypothesize but nobody knows for sure why they work or don't work.

    If we can't find an expert prescriber, what is the least-worst option?




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    Originally Posted by eco21268
    Mechanism of action is "unknown" for neuro meds and basically you read the side effect profile, decide which is least-worst, and roll the dice. Then you balance seizure control (or lack thereof) against side effects and QOL. I actually think most brain meds are like this. People hypothesize but nobody knows for sure why they work or don't work.

    Yes... sigh. We were told at one point to "medicate diagnostically" ...as in, test different medications on my son (ADHD) to rule out or confirm issues, and that it would take about 6 months. I just skipped it altogether, but I'm lucky that he's been ok meds-free.

    I agree with you that it sounds like a miserable existence for your son (the doctor just sees the health on paper... you have to face the day to day at home, and see him suffer frown ) Have you tried the non-stimulant Atomoxetine... (brand name Strattera)? A friend of mine's daughter used Strattera after she outgrew stimulants (she was on Biphenton - methylphenidate - for a few years and it was great until she built up a tolerance). Anyway, the Strattera also helped her, and she was an inattentive chatterbox. She's entering high school and is off the meds now because she's learning to reign in her behavior. Developmentally girls are a bit ahead of boys... maybe this will happen for your son too.

    Last edited by CCN; 07/27/15 08:21 PM.
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    Originally Posted by eco21268
    Originally Posted by DeeDee
    Eco, do you have a Children's hospital anywhere in the region? You need an expert prescriber.

    Some people find that Intuniv can be combined with lower doses of stimulants. But you need an expert to help you with this.
    DeeDee--The closest is 300 miles away. We did go this route with eldest, but a lot of circumstances have changed since then and not sure it's realistic. It seems to be quite difficult to get information from a distance.

    When you say expert prescriber, do you mean developmental MD (pediatrician/psychiatrist)? Are there med issues specific to developmental disorders? How do I learn more about those?
    ...
    If we can't find an expert prescriber, what is the least-worst option?

    You want someone who has a lot of experience prescribing these particular drugs to children and adolescents. Someone who knows "this drug works best for this particular EF symptom but not that one; if this one causes side effects I'll go for this next" with clear reasons for their choices.

    We have a developmental pediatrician. A pediatric/adolescent psychiatrist who specializes in ASD would probably do too.

    Least-worst would be a pediatrician who will go the extra mile and do some research or consult with an expert by phone.

    I will PM you.


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