on Vyvance; considering INTUNIV-thoughts? | ADHD Information

Belated thanks for both your replies. I finally was able to find the
psychiatrist's name and get in touch with her, and she actually really is in
favor of INTUNIV (when we'd seen her a year or so ago, she had NOT had
good results with the 24-hour drug, whatever it was, that was available at
the time, so she switched us to Vyvanse from Adderall... but we still have
the swings from when the meds are "on board" and when they've died
away, until they take effect again after taking the next dose...)

Anyway, we have an appt set for a couple weeks, and she will then
monitor as we titrate up the INTUNIV, and help us figure out whether we
can get completely off of Vyvanse or have a combo.

I am cautiously optimistic. Will report back after we have some experience
with it.

Thanks again,
C

Best of luck and keep us posted!

Yes please keep me posted. Very interested. Our biggist problem is in the mornings. Horendous. Since starting the 2mg INTUNIV 2 days ago my son actually said he felt calmer and found it easier to be more compliant. I notice a difference as well. I do not think he will drop back on his Concerta as it does not seem to help with focus at all. He is less hyper and not as many fits as before now he is only on week 2 and 2 mg. they say it takes up to 4 weks to see a full difference and that 3-4 mg has the best success rate. doc appt Tuesday we shall discuss it all then but so far so good! I wish you all the luck in the world with your son and I hope that you have success with it. Be Patient. I know that is a hard one lol, but it does take a while to settle in. I will keep you posted as well.GOOD LUCK!!!!!! Happy Easter if that is what you celebrate if not Happy pesach.Did the doc take him off of Vyvanse all together or is he still taking it? [QUOTE=Logan'sMom] Did the doc take him off of Vyvanse all
together or is he still taking it?[/QUOTE]

He is still on it; this doctor's way of doing this is to ramp up with the
INTUNIV while still doing the Vyvanse (or Adderall or whatever, I
suppose), then, when the desired effect from the INTUNIV is seen, slowly
back down on the Vyvanse.

The other thing I do now remember her mentioning as a possibility is
switching to giving the INTUNIV in the evenings rather than the
mornings. For most it is apparently in the mornings, but this is an
alternative that might work for some when it doesn't work out in the
mornings. This idea holds some intuitive appeal; the only reports of any
change at all for him seem to be mid-afternoon (during the time the Vyvanse
would start winding down), and if we got this med to off-set by 12 hours,
maybe then we'd get the effect to occur at the correct time of day.

Clgmtseawa40314.3181597222UPDATE:
Ok, it's now been close to 4 weeks. We actually aren't seeing much
improvement in the mornings and evenings in terms of his behavior. (It
seemed like there was a little bit in the second week or so, but it was
illusory.) The doctor is actually bumping us up to 4 mg, which we'll try for
a bit, and if still no change, then we will revisit the whole thing with her.

I haven't heard anything one way or the other from his teachers, though
he told me once he felt a bit different (like, the opposite of hyper) during
the early afternoons -- he didn't describe it very well, but it almost
sounds like it is only working during the same time as the Vyvanse, and
not 24 hours like it is supposed to.

I'm going to ask his teachers again if they've noticed anything (one of the
things they are supposed to be watching for are the negative side effects,
such as dizziness or drowsiness, though I *think* those symptoms tend
to show up earlier and then go away).

Sigh.

Update: Well, even 4mg isn't doing anything, so the doctor wants to try
Strattera (she said that one is also a longer acting med; something new
for me to go research), but first we will gradually back him down off the
INTUNIV. He'll also stay on Vyvanse while starting Strattera (which she
said takes up to 6 weeks to notice any change), and then if we notice
improvement with that, we'll try decreasing the Vyvanse.

So I guess that's our summer project. Wish us luck. If anyone has had
experience with Strattera, I'd love to hear it; guess I'll go search the
forums for that.

Moral of the story: as we all unfortunately know, not every medicine
works for every kid. Unfortunately, hopeful though I was, INTUNIV didn't
do the trick for mine.

CStraterra worked for us, but after too many dosage changes my son was getting too much. I wish I'd started this journey with more information. We are trying Tenex (gen. Intuniv) right now. We have gone through such a whirlwind of meds that I'm starting to see double, lol!

I saw the broadest coverage with Straterra. It helped with impulses, hyperactivity, focus, etc. But my son has some sensory/anxiety issues that eventually got worse with this med. I still think it might be the best bet, but we need to get a grip on the anxiety before we can try it again.

The tenex IS helping with impulsive behavior, but it doesn't really help with attentiveness. Which happens to be the second biggest issue at school after behavior. Anyway, I hope you have success with Straterra. Don't let the doc up the dose too much. I think it takes a very careful balance.

Also, I noticed a difference in behavior on Straterra within three days. It was only after six weeks that the emotional turmoil started creeping in. But the first two months were Fantastic!! I hope that you have that kind of success, but for much longer than just six weeks. Best of luck that this is the right answer for your ds. OneOrTheOther40319.9443171296Update.
Started Friday. You start with 1 mg for a week, then go to 2 mg for a
week. if still not seeing an effect, go to 3 mg for a week. it seems most
are on 2 or 3 mg/day. Once stable on whatever level, we'll start to try to
cut down the Vyvanse. Ideally, he could go off that completely, but some
kids do best with a combo (but hopefully lower amt of the stim).

For those who don't know: Intuniv is a longer lasting formula of a blood
pressure medicine, of all things. The main side effects to watch for are
low blood pressure (dizziness) and sleepiness, tiredness, drowsiness
(believe it or not, they list ALL three on the insert! I kind of think of those
as the same...) BUT USUALLY the tiredness is supposed to hit at around
12 hours (so if taken in morning, he hopefully shouldn't get sleepy during
school) but if it does occur during school, the teachers know to tell us.
Same with dizziness. The insert also says (IIRC) these symptoms usually
occur more at the beginning of using this particular drug.

IF we can get off of Vyvanse, then we'd lose some of the potential side
effects of that, such as difficulty sleeping (sometimes affects him a little)
and loss of appetite (does seem to affect him mid-day but not so much in
the morning and evening). This kid is a beanpole; having a healthier
appetite mid-day likely won't hurt him. We tend to eat pretty healthy here
at home, and though I can't control what he eats at school, I can at least
remind him often of what good choices are. Plus we are heading into
summer where he won't have those choices available, at least for a few
months.

Oh, and finally, improvement is not supposed to be seen immediately;
takes a week or two or so, she told us. Needless to say, we've seen no
improvement yet.

Will update again after a couple weeks.Luckily, I don't *think* my son has any sensory issues, and I don't believe he
has anxiety issues either... he's extremely *sensitive* and cries easily, but I
think that's (a) partly inherited (I was a sensitive kid :-/ ) and (b) I've been told
at least some of that may go with the ADD.

Basically, the Vyvanse (and the Adderall before it) do a great job with helping
him be calmer and more focused *during the day* when he's at school (he has
both the hyperactivity and the inattentiveness), and he's able to do better, and
interact with others better than before we started meds in first grade. But the
early mornings before the medicine kicks in, and then slowly increasing in the
afternoons as they wear off, are just awful. Worst is at home in the morning --
sheer craziness, won't listen, we have to resort to yelling just to get him to do
what we've tried gently to get him to do. Evenings are more a mixed bag. He
can be great or a bear at home; getting the homework done is ALWAYS
difficult; yet he can do very well for an evening concert (he plays viola). But
mornings... OY.

There was a slight improvement for the tiniest amount of time with the
INTUNIV, but that faded away... so basically, the INTUNIV is adding NOTHING,
especially during the time of day when we needed it, when it was supposed to
make a difference. (Actually, by his report and one afternoon teacher's report,
there were some subtle differences at that time of day [feeling of more
boredom or being a bit quieter -- he wasn't very clear], as if it were ADDING
TO the effect of Vyvanse just a little. But that's not when we needed it anyway.)

Thanks for telling about your experience with Straterra. All the little data points
help. The biggest issue for us now is that my husband doesn't even want to
start it until after his stay away from home camps this summer are done, just in
case there ARE any side effects that are unwanted and/or could cause the
counselors problems. I can see his point. But that means holding off for quite a
bit of time and we'll still be potentially getting him up to speed on it when
school starts again.

C

I'm sorry to hear that the Inuntiv didn't work for him!   Sometimes that's just how it happens I guess.  My son also takes Strattera.  He's like a walking pharmacy (Ritalin, Tenex, Strattera) but it works very well for him!

If Straterra works for your son it will give him more of an even "24 hr" coverage than the stimulants which sounds like what you're looking for.  With my son it took a full 8 weeks to see the real results.  It helped him tremendously with his moodiness and some of the hyperactivity but it wasn't enough for the rest of his hyperactivity/impulsivness so we added a small dose of Ritalin back in to help that.  He still takes Tenex to help with his anxiety and sensory issues.

In many cases if the child is hyper, Straterra isn't enough by itself so a combo is needed.  But even if you still need the stimulant it might help with the morning and afternoon.  Just watch as you are going up to the max dose.  If he gets even more hyper than he was before that means the dose is too high.  This happened with my son on 30mg so we went back down to 20mg and it works great!  Also, it made him sleepy for the first couple of months but that wore off.

I hope this one works for him!  Please let us know!

Thanks for the update!  You won't see the full effect for at least 2 weeks or so-maybe up to 4 or 5.  It took my son only a few days to see some results but several weeks before we saw the full effect. It may take your son longer because he is titrating up to 3mg.  My son only went up to 1.5 mg at the highest (he was only 4 at the time).  Even if he seems sleepy at first it may go away with time once his body gets used to it.  So don't get discouraged if he seems overly tired at first.  Let us know how it goes! So far, tiredness seems no more and no less.
Yeah, we're giving it a couple-three weeks :-) but hope to see some
improvement by then.
Poor kid also gets braces tomorrow. He's just getting it all at once!

thanks for the feedback, everyone!

Hi Carolyn! First I highly recommend going straight to a psychiatrist.  You'll find the right "cocktail" faster dealing with a specialist.  I've tried both with my son and there is no comparison-the psychiatrist knows these meds MUCH better.

My son is on Tenex which is the short acting form of Intuniv.  We never tried it by itself.  We added it once he was already on Ritalin and it helped tremendously calming his sensory problems and anxiety that were made worse by the stimulant.  We didn't reduce the Ritalin at all.  Actually we were able to raise the dose of Ritalin which is what he needed.  Normally what I see is that the two types of medication are taken together.  I haven't heard of too many hyper/impulsive kids that do well on Intuniv/Tenex alone.  The way my son's doc described Tenex is that it helps couteract the pesky side effects of stimulants and has a generally calming effect but it is rarely enough alone to control the ADHHHHHD kids like mine.

Hi,
11 yr old son with combined ADD, diagnosed when 6. Has done well with his behavior with first Adderall then
Vyvanse... at least when the meds are on board, but mornings are terrible, and evenings almost as much so, after
the meds wear off. The meds DO help him focus and not be hyper during the school day, so from that
standpoint, a success (though they don't help him pay attention to details of assignments -- a big problem). We
do notice lack of appetite in middle of day, but lately he's been making up for it in the morning sometimes, and
especially at night (the 6 week wrestling program probably helped that too).
FWIW, he is also classified as Gifted, in math if not also reading, so he's a 2x.

Our main problem right now is mornings and to a lesser extent afternoons/evenings. There's a lot of yelling that
goes on just to get him to do stuff, just to keep him moving in the morning (with Middle school comes a much
earlier start time than last year), and also to keep him on task on homework in the evening. Nothing but yelling
seems to work a majority of the time. On the one hand, some might say it's just for our benefit that he somehow
behave better, but on the other hand, I can't think it's good for anyone's relationship or health for us to be
yelling so much. So we are searching for something that doesn't wear off (in addition to looking for additional
behavioral things to try for both us and him -- different topic).

His pediatrician told me about INTUNIV. I've been trying to read all the posts here where folks are talking about
INTUNIV, but haven't seen my exact question asked, so here goes:

If we were to try this out, would we drop the Vyvanse cold turkey and switch to INTUNIV? or do most folks seem
to have the best luck with some combo (perhaps at lower doses of the Vyvanse)? or does one start with a mix
and slowly increase the one while decreasing the other?

What has been people's experience in switching from one of the stimulants to INTUNIV and how long does it take
if your goal is to get completely off the stimulant, or, again, do most folks find the best solution to be a combo?

Thoughts?

Thank you so much for any insight (and yes, I know that everyone's experience is different, and different things
work for different people. I'm just trying to find out the range of possibilities, and the types of things that have
worked for others before I go back to the ped -- or should I go straight to a psychiatrist that deals with this stuff
more closely rather than the ped?)

Lots of questions. I hope some of you have good ideas (and that your answers can also help others too :-)

Thanks!
Carolyn

My son is 11 and been on Concerta for 3 years. We just added Intuniv to the mix hoping it would calm down the anxiety and hyperness activity. we are only on the 4th day at 1 mg and will notice nothing the company told us until 4 week point . we start the higher dose 2mg next week the we see the dose 1 week after that.

my son is in middle school and having big problems despite his giftedness and high intelligence. We r hoping that the Intuniv will calm him a bit so he can concerntrate a little better at school and not have the pm outbursts at home when the stim wears off. I am up for any info regarding the Intuniv at all anything our doc kinda stinks that way and does not give the whole picture.

wish you luck with yours and would love any feedback

 

UPDATE:
Well, Strattera was a bust too. NO difference. :-( Luckily, that was one we didn't have
to ramp down from.

The next plan is to give him dextroamphetamine, basically a short term version of
the Vyvanse he's already getting and that we already know works, 1/2 an hour before
he's supposed to really get up, when he gets his Vyvanse. This works ok for us
because I am trying really hard to stay committed to leaving for the gym at 5:30 AM,
so the idea is I give him his dextroamphetamine right before I go, then my husband
gives him the Vyvanse and gets him up at 6 AM. And then once we get the mornings
figured out, we will try afternoons; that'll be trickier, figuring out the right time and
amount so that we don't have him have problems getting to sleep. But I'm trying to
arrange my part-time work schedule so that I am either home when he gets home
from school (so can give it as early in afternoon as possible) or home as soon as
possible (have to be anyway to get little brother from Kindergarten). I hope this (and
earlier time anyway) will make a difference for his viola lessons too.

We are starting with 6 mg, and if that's working but not *quite* enough, she said to
go to 7.5 mg. These are easily cuttable pills, so fine-tuning is really doable.

Well, so far (two mornings worth, but still) it is working GREAT!!!!!! Not really
surprising as we already know this chemical works well for him. But it has already
made a *huge* difference in our mornings. He does stuff without needing to be
yelled at to get him to do things, he doesn't distract and bother his little brother (we
have our own issues with him and eating; he has Down syndrome and is stubborn
sometimes and easily distracted by his brother when his brother is acting crazy -- so
much more fun than his breakfast)... The only "problem" was that yesterday morning
it took me about 5 minutes to get him to wake enough to even take the pill. But he
finally did. (This morning he'd gotten up at 4:30 to go to the bathroom, so he was
still kind of awake when I came in at 5:30.)

Anyway, we ought to have our routine down by the time school starts next week.

And then once we get the mornings figured out, we will try afternoons; that'll be
trickier, figuring out the right time and amount so that we don't have him have
problems getting to sleep. But I'm trying to arrange my part-time work schedule so
that I am either home when he gets home from school (so can give it as early in
afternoon as possible) or home as soon as possible (have to be anyway to get little
brother from Kindergarten). I hope this (and earlier time anyway) will make a
difference for his viola lessons too. I imagine we might even start with 2.5 mg (1/2
pill) to start, just to see how long it lasts and what the sleep issues are (and those are
hard to figure out because he sleeps with his door shut, so we don't *really* know
when he finally falls asleep...

So, the good news is that at LEAST mornings look to have a workable solution finally,
and maybe it'll work in the afternoons too (we'd like to avoid having him have to get
the med earlier at school -- he hates being pulled out of class for anything). The bad
news is that apparently we aren't going to be able to get away from the controlled
substance medicines of Vyvanse and its cousin dextroamphetamine, at least not for
the foreseeable future (the way we'd hoped when trying INTUNIV and Strattera).

Finally, the psychiatrist suggested it might be worthwhile to actually do a full
neuropsych eval (we've never done *that*) and gave me a name. Will look into it.

C lgmtseawa, are things still going well for him? [QUOTE=Logan'sMom] lgmtseawa, are things still going well for
him?[/QUOTE] Yep, 6 mornings under our belt now, and much
improvement for that time of day has been experienced :-) Also makes
things much better for our younger son.That's great!  Hope it continues for him! UPDATE:
Well, we are about 3 weeks into it, and haven't seen anything yet, but of
course didn't expect to until about 6-8 weeks anyway.

I do know that Strattera by itself (at 40 mg) doesn't do anything either yet...
this morning he slept in until 11! (summer!) and I did NOT want to give him
Vyvanse that late in the day! He'd NEVER get to sleep tonight if I had!

Soldiering on...
C