Anyone Want to Talk About Intuniv?

Discussion in 'General Parenting' started by Otto von Bismark, Feb 20, 2012.

  1. For could actually be working.

    My difficult child son has had 13 our of 14 really good days in a row, at home and at school.

    We are keeping a reward chart split into 4 1-week sections. At the end of each week, he gets to choose a couple of cool rewards (Jamba juice, a visit to H&H Gregg, renting a movie of his choice, etc...). He could NEVER complete a reward chart for even 2 days before.

    He was sent out of class only 1 time in the past 13 days, and it used to be 3 or four times per day. He had "recordings" on his chart that numbered 12 + every day, and he made it through a week with one or two total. These are easily recognizable positive signs. At home, he is not flying off the handle and his sisters are much better able to communicate with him. Sibling relationships are not perfect, but are improving, slowly.

    At first, when we were struggling and had just started the medication, the director of our school said he "hated" Intuniv, and said it was repackaged from an adult beta-blocker ( which I knew) and the only reason the kids behaved better on it was because they were exhausted and walking around like zombies. But I read an explanation here of how it acts on the brain and it seems to be more than a tranquilizer.

    We are holding steady at 2 mg, after taking ten days, instead of seven to increase dose. I have no interest in going higher, because there are side effects we do not like as it is.

    The cons of Intuniv: he is really, really, really tired. He sometimes sleeps on the way to school, takes a nap after school, and goes to bed early. By 7:30 he is too wiped for homework, although he does stay up and interact. He is also really quiet. He is usually a stimmy chatterbox, so this is odd for him to be so quiet, but really, he is no MORE quiet than his big brothers were at that age. He speaks when he has something to say. Also, he gets up every day around 4 am and can't fall back to sleep, and it scares him since it was the middle of the night when he had his Abilify hallucination and huge fright.

    He also says he is sleepy enough during school to zone out during material. But then again, he is aware enough to actually report things like this to us....huge improvement.

    We hate to see him like this. I kind of miss his presence. However, he is meeting with such success in school (his teachers and peers can stand him, his grades haven't gone down), success socially with people being able to praise him for the many things he does, instead of constantly correcting him, and lecturing him, and being afraid of him. We think it is worth it. For now. The mommy in me hates it, but my pragmatic husband says that for now, it is fantastic for him to learn what it is like to not be that kid who is constantly in trouble, constantly giving in to bad impulses.

    And if you know our story from other threads, his impulse control problem was getting to be really dangerous.

    Anyone have any Intuniv experience? Any thoughts about staying on a medication with side effects that seem to change the kid? Any thoughts on that link I shared above?

  2. crazymama30

    crazymama30 Active Member

    I think whether you keep the medication or not depends on whether or not you think the benefits outweigh the negatives. Intuniv is a long release form of tenex, would he be better on tenex? Maybe it would give him time to gather himself in the morning and then maybe he could be more in control the rest of the day?

    My difficult child is on intuniv, and having the opposite sleep problems, he cannot sleep. I don't think in our case it is the medication. Good luck.
  3. TeDo

    TeDo Guest

    difficult child 1 is on Tenex which, like Crazy said, is the short-acting version of the SAME medication. He's doing awesome. He takes a small dose in the morning and a slightly higher dose in the evening to help with sleep. I agree with Crazy that maybe trying the short-acting might be worth a shot. The medication itself is working, you just need to find the right formulation. Might be worth checking out.
  4. You guys rock. I will look into that. I don't like my zombie, even though he is meeting with so much legit success.
  5. TeDo

    TeDo Guest

    All the more reason to stick with the medication but maybe switch formulation.
  6. InsaneCdn

    InsaneCdn Well-Known Member

    More questions... <wink>
    - timing? does he get this medication in the morning, evening, split dose???
    - what size were the increments... 1mg and then up by another 1mg?

    Sometimes, you can "split" a dose... long-acting, not usually, but there may be half-step versions available. Or use long-acting, supplemented with short-acting... For lots of medications, 0.5mg is enough to make a difference.
  7. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    OvB, isn't this board great!

    For many of us, that impulse part of the ADHD slowly disapates as they get older. My difficult child had a highly impulsive diagnosis and now the H part and the impulse part are in control - it's the focus we work on daily now.

  8. buddy

    buddy New Member

    Q always gets tired when we increase his clonidine dose but he does get used to it and so in while he may not be so tired on it too. We use both a patch form and add tabs in short acting form when needed. I have learned to just turn off my ears to people who have not studied the medications and the truth is that guy probably only knows of the times there are problems, most kids where medications are working fine are just off their radar.
  9. I love questions. They help me think through things better. He started at 1 mg for 1 week, but we kept him at 1 for two weeks. My kids and I are those .02% of people who get the weird side effects. Fairly consistently.

    Then he went up by 1 mg to 2 mg per day, dosed only at night, because others have said they are less tired that way.

    His behavior is SO GOOD. He is the only kid in his science fair group who is actually doing the project -- everyone else has checked out. He now gets one-on-one time to work with his science teacher after school. Usually it is detention.
    But...he seems to be more tired. Falling asleep with his mouth hanging open in the car on the way to school. Big naps in public spaces of the house during late afternoons. Going to sleep by nine, then not sleeping well. He says he can feel his heart beat shake the oh-so-hip, teenage dude metal bed frame, so we took the frame away and he is sleeping better with mattress on the floor. I believe him.

    We were told we could not cut the medication, as in physically split a pill.

    We are seeing psychiatrist (is that psychiatrist? trying to remember my board lingo) this afternoon.

    Follow up with his excellently awesome therapist yesterday and, although she is very cautious about medications, she agrees that the side effects are worth the dramatic behavior changes. She is cautious about changing the medication to Tenex, because she doesn't necessarily want to start messing with a good thing, in case this is as good as it gets, let's keep what is behind door number 2 and not gamble on door number 3, if that makes sense. For now.

    I do have questions for the psychiatrist today, though. I will ask about long-acting vs. short acting, and splitting a dose. Thanks, you guys.
  10. buddy

    buddy New Member

    Will be interested to hear what psychiatrist says. Yeah, splitting=cutting the dose is probably not what was meant... dividing it... as in having whole tabs/caps whatever it is... each of a lesser dose given at different times but adding up to the total dose... not actually cutting the medication unless it is short acting and approved by the dr and/or pharmacist. We have done that with many medications... his Lyrica/seizure medication made him totally drugged at 200 in the morn and 200 at night. So dr ordered it in one hundred mg caps and fifty mg caps then said to take 150 in morn and night and 100 in the middle of the day.. he then received the benefits still but he was a totally different kid. Not at all drugged out. Depends on the medication, the kid, the delivery method... uggg it can be so wearing.
  11. Chaosuncontained

    Chaosuncontained New Member

    Carson is on Intuniv. 2mg at night. He's been on it awhile. He is so sleepy in class. Twice in the last week I have had to wake him from a very deep sleep at pick up from scchool. He gets 10-11 hours if sleep each night. We are weaning him off of intuniv now...trying Strattera...AGAIN. sigh.
  12. I am not thrilled with our psychiatrist's ability to listen. I think he thinks I am stupid. It has been my primary complaint about him; he is terribly dismissive. I told him of my "friend" whose doctor tweaked the medication delivery by prescribing different amounts at different times during the day. He told me there was no way the Intuniv could be making him this sleepy. Do these guys not read actual patient reports?????

    I told him my son falls into a near coma every day after school, and he wakes up at 4 am every morning. The doctor said he was waking because he takes a nap. I know this is not the case, because he wakes no matter if he takes a nap or not. At first, I was trying to keep him awake and have him go to bed early (forced xbox, lol!), but then I realized how exhausted he really is. Also, the kid has never, past the age of 3, taken a nap in his life, nor has he woken in the middle of the night. . He used to be the most solid night sleeper I have ever met. He slept through a major hurricane, and through a car that caught on fire and blew up thirty feet from his bedroom window. Fire engines, and everything, lol.

    So, my answer is......I am shopping for a new psychiatrist. We are staying on the Intuniv for now. Today, when I brought his PE uniform to school two amazing things happened. First, he remembered that he forgot his uniform -- a first. Usually I remember for him and he goes, "Oh yeah," very unimpressed. Second, he met me at hall so I didn't have to go into the office and he said, "I am so sorry you had to come all the way out here to bring my uniform. Sorry for forgetting it." Also a first. Not sure how this stuff is working in his brain, but something is working somewhere.
  13. TeDo

    TeDo Guest

    I hear ya' Otto. I'm now in the same boat with the psychiatrist thing.

    Hang on to these "little" things....they'll give you hope!!