|
|
Post by allyjo on Jan 30, 2010 18:24:23 GMT -5
My 11-y.o. son just started Intuniv last week (we're now in the 2 mg./day phase). He's newly diagnosed with ADHD and we tried several stimulants over the past two months before declaring "enough!" (Vyvanse, Concerta and Focalin....all exacerbated his depression and OCD tendencies).
I'd like to invite everyone with children on Intuniv to use this thread to share experiences, so we can learn from each other.
|
|
|
|
Post by crescentcitygal on Feb 11, 2010 0:41:59 GMT -5
My DS (9) has been on 1 mg Intuniv since the Christmas break. He had been on Tenex and the Daytrana patch for about a year (he is still on Daytrana). I asked the dr. about switching to Intuniv because I had read in several different sources that in addition to the benefit of once-per-day dosing, Intuniv also provides better attention control than Tenex (Tenex has only helped DS with tics, and a little bit with impulsivity). My thought was that if Intuniv would help with attention in addition to hyperactivity and impulsivity, we would eventually like to stop the Daytrana.
After about 6 weeks on Intuniv, I can say that it appears to be working about as well as Tenex (no better, but no worse). I will probably get one more refill, then switch back to Tenex if I don't notice further improvement. We pay a $40 copay for Intuniv vs. a $5 copay for Tenex (generic version), and I don't see the sense in paying that much more just for the convenience of extended release.
One more observation: the other day, I moved DS up to 2 mg Intuniv (after discussing with the dr.). On the first afternoon at the higher dose, I noticed that he kept grabbing his crotch area. I asked him why he was doing that, and he said that he felt like he had to go to the bathroom, even though he had just gone. When he got undressed to shower, he told me that his underpants were wet. I checked, and there was a small wet spot in the front. The next day, the school nurse told me that he was sent to her office because he said he had wet his underpants. Once again, his underpants had a small wet spot, but his jeans were not wet. I remember that he had this same issue for a while when we did a trial of a higher dose of Tenex. At the time, I wasn't completely certain that it was caused by the Tenex, but now it does seem more than likely that it was. I googled Tenex and Intuniv side-effects, and bedwetting/frequent urination are listed as possible side-effects. So this is something to be aware of. We are now back at 1 mg Intuniv.
Allyjo, how is your DS doing on the Intuniv? Like you, we have had issues with all stimulants (particularly with Vyvanse). Daytrana has been the best compromise for us, so he is still taking it (along with Intuniv or Tenex) for now.
|
|
|
|
Post by pagetc on Feb 21, 2010 11:35:55 GMT -5
My son 13 year old son has been on Vyvanse for approx. one year. Three months ago we raised his dosage to 40mg, because the lower dosage wasn't helping with his attention after 2:00 in the afternoon or with impulsivity and self-control. This has not worked well, I recently got a call from the school because he was in a fight, 3 days supsension. His dr. prescribed 1 mg Intuniv along with his Vyvanse. I am hoping that this takes care of the self-control, aggression issues. I am hoping that if the Intuniv works that we can try just it this summer. Finding the right medication is such a frustrating process, that so many educators don't understand unless they have been personally involved in the process. Before I make anybody mad, I am an educator myself.
|
|
|
|
Post by Mayleng on Feb 21, 2010 11:54:54 GMT -5
Welcome pagetc, yes finding the right medication is very difficult and a long process. I do want to say that quite a few people have reported that vyvanse do cause aggression and moods. millermom.proboards.com/index.cgi?board=general&action=display&thread=10001 So before adding another med, have your son tried other stimulants like adderall xr, metadate cd, ritalin la, concerta, focalin xr etc.? |
|
|
|
Post by healthy11 on Feb 21, 2010 16:59:21 GMT -5
I also wanted to say welcome, pagetc.
|
|
|
|
Post by allyjo on Feb 21, 2010 21:30:00 GMT -5
I've been out of country for a few weeks...here's an update on Intuniv with my 11-y.o. son. His biggest issue with stimulant ADHD meds was side effects (depression, OCD-type stuff). We've been thrilled with the lack of side effects with Intuniv, and have gradually ramped up to 3 mg./day, which he's been taking for about 2 weeks now. The problem: We're not seeing any big improvements with his focus/attention issues. *He* sees improvements, however, so for the time being, we'll have to go with that. I'll ask his teacher for feedback, of course, but she's fairly inexperienced, has 19 other students to look after, and her feedback on the first four meds we tried was cursory. <Sigh.>
|
|
|
|
Post by crescentcitygal on Feb 24, 2010 14:43:58 GMT -5
Well, DS' teachers are telling me that his attention span and ability to stay on task have declined MARKEDLY over the past 2-3 weeks. They first mentioned it to me a couple of weeks ago, but I thought it was just a little phase that would pass (as happens sometimes with him). No mood or personality changes. Just attention and ability to complete his work. Apparently it is such a drastic change that a substitute who saw him for the first time in 2 or 3 months wanted to know what was going on because he was like a completely different kid (and not in a good way)!
I thought that this couldn't possibly be related to the switch from Tenex to Intuniv because we made the change over the Christmas break. I can't imagine that it would take over a month to see changes like that. But I can't think of anything else that has changed except switching to Intuniv. I didn't realize how consistent his attention issues have become until talking with two of his teachers today. Funny thing is, I haven't noticed any change in attention during homework time in the afternoon.
This makes no sense, does it? Intuniv is just a long-acting form of Tenex, so why should there be such a drastic change? I think I'm going to switch him back to Tenex this week and see if things improve. He has standardized testing coming up in a few weeks, so I have got to get the poor kid back on track. He'll never pass if things stay the way they are. Now I feel terrible for screwing things up by trying something new that I thought might be better. Way to go, mom.
|
|
|
|
Post by healthy11 on Feb 24, 2010 16:33:11 GMT -5
Don't beat yourself up. Do call his doctor, and see if other parents are experiencing similar changes in their children's performance/behaviors. Maybe a dosage adjustment or the timing of it would make a difference.
|
|
|
|
Post by crescentcitygal on Feb 24, 2010 16:41:30 GMT -5
Healthy, I just got off the phone with the dr. He said it would be fine to go back to the Tenex for now (we also have an appointment in a couple of weeks, and we will discuss more then).
We had actually tried changing the timing of his Intuniv dose from morning to evening (morning was better, so we switched back). Also, we had briefly tried increasing the dose to 2 mg a couple weeks back, but he started having a small amount of urine leak into his underpants (and wet the bed twice). We remembered this had happened once before when we had tried increasing his dose of Tenex (although we didn't make the connection at the time). I recently read that an increased urge to urinate is a possible side-effect of Tenex/Intuniv. So he needs to stay on the smallest dose for now.
So we will start back on the Tenex tomorrow. Fingers crossed that things get back to normal (well, normal for us, anyway).
|
|
|
|
Post by Mayleng on Feb 24, 2010 17:01:28 GMT -5
Don't beat yourself up, you won't know how a med is going to work until you try.
|
|
|
|
Post by crescentcitygal on Feb 24, 2010 17:17:39 GMT -5
Thanks, Mayleng and Healthy. The weird thing is that for as persistent as this off-task behavior is during the day, none of it is being seen in the evening by us or by his speech therapist (who sees him once a week in the afternoon). Strange, since Intuniv is supposed to be a 24-hour med. Perhaps the med is not being released smoothly in his system? I don't doubt what the teacher is telling me since I have been getting the same reports from several teachers who work with him. I guess it's possible that it's not the Intuniv at all, but that seems like the most logical thing to try right now.
|
|
|
|
Post by healthy11 on Feb 24, 2010 17:26:44 GMT -5
Is that the only med your son takes? Is he a finicky eater, who might be having the same thing for breakfast or lunch each day, so he could be having some kind of "allergic reaction" or rebound effect to its sugar content or other ingredients?
|
|
|
|
Post by Mayleng on Feb 24, 2010 18:10:00 GMT -5
when is he taking the intuniv?
|
|
|
|
Post by crescentcitygal on Feb 24, 2010 21:01:49 GMT -5
Healthy,
He is also on the Daytrana patch (has been for about 16 months).
No...he is not a finicky eater. He has a pretty well-varied diet. The only thing he has been eating a lot of lately is hot oatmeal in the morning since it has been so cold. I do put a little brown sugar and cinnamon in the oatmeal. Maybe he's reacting to the sugar? Or maybe he needs more protein for breakfast? I might try switching back to eggs and toast (typical breakfast when he's not having oatmeal or cereal).
Mayleng...he takes the Intuniv in the morning just before, or with, breakfast. We did try giving it at night for a while, but morning seemed to work better.
|
|
|
|
Post by Mayleng on Feb 24, 2010 22:35:05 GMT -5
maybe the meds is releasing too late for him, so you see the benefits after school instead of during school or could it be his daytrana patch dosage needs to be increased.
|
|
|
|
Post by crescentcitygal on Feb 25, 2010 8:17:29 GMT -5
Mayleng,
It does seem that perhaps the meds are releasing too late for him. That is why we tried giving the Intuniv at night, but it caused night-waking and sleepiness during the day.
I am worried, too, that the Daytrana may need to be increased. He has always been on the lowest dose, but he may be having a growth spurt. Unfortunately, a higher dose = tics for him. Tenex and Intuniv have kept that under control for him, but only when he is on the lower dose.
|
|
|
|
Post by dwolen on Apr 14, 2010 9:41:27 GMT -5
I am wondering how it is going now with your children with Intuniv?
My wondering is selfish.
My 21 yo dd is to start this medication. It is the 6th medication she will try for inattentive ADHD since starting medication in around early November. Since she is 21, she does not share a lot with me, lives far away and is coincidently struggling to be independent. Her psychiatrist tells me that she is severely impaired with due to ADHD. Believe me, this is not where one wants one's dear child to be at age 21 (or any age), but "it is what it is."
I see on the intuniv web site that the average improvement on intuniv was 41%.
Please feel free to share. Thanks.
|
|
|
|
Post by hsmom on Apr 14, 2010 10:54:21 GMT -5
dwolen, If your daughter is having problems finding a medication that works for her, you may want to contact Dr. Christopher Poppe, Ph.D. & Dr. Michael Greenbaum, M.D. of Capstone Clinical Research. They spoke at the CHADD meeting that Healthy and I attended. They conduct clinical trials for psychiatric medications, including those for ADHD, and thus very knowledgeable. www.capstoneclinical.com |
|
|
|
Post by kitty41 on Sept 15, 2010 9:18:12 GMT -5
My son is on it and Respidol we are on week 4 with Intuvi and Week 6 with Respidol. Once we went to the 3mg of Intuvi he seems very medicated and solemn, tired all the time. Anyone have this in the beginning and if so did it pass? My son has adhd combined, severe anixety and ocd tendencies. They think he may actually be on the verge of bipolar or something else. He has a low IQ it dropped 20 pts in 2 yrs and he is regressing. I think he may have a form of autism but no one can confirm anything for me. I think he only seems adhd because of his low IQ and he is so severely anxious that he is driven to distraction. His anxiety is so bad he is paranoid. I am scared about that part. We have seen many specialist with lots of different answers.
|
|
|
|
Post by healthy11 on Sept 15, 2010 9:25:59 GMT -5
kitty41, welcome to Millermom's. Can we ask how old your son is/what grade? When was he diagnosed with ADHD, and did you try other medications in the past?
|
|
|
|
Post by misstex94 on Sept 16, 2010 11:36:56 GMT -5
I just want to chime in about the Intuniv. My son ( 12yr old), was put on 1 mg of Intuniv back in March of this year. He did fine on it but by the time July rolled around it was not working anymore. So the doctor up it to 2mg and his behavior was not as good as it was on the 1mg. We thought it was because we went on vacation and then when school started it would be fine. Well it was not and just today, the doctor took him off it. Hopefully his mood will be better in the coming days as it works it way out of his system.
|
|
|
|
Post by crescentcitygal on Sept 21, 2010 13:13:46 GMT -5
I haven't checked in on this thread in a while, so I thought I would give an update on my DS-9, who had been taking Intuniv with the Daytrana patch since December (after previously taking Tenex with Daytrana for over a year). We ended up switching back to Tenex over the summer because he was not doing as well in school on the Intuniv. We didn't notice much of a difference at home between the two medications, but his grades suffered a bit while he was taking Intuniv, and his teachers said that he had a lot of trouble focusing on his work and doing any independent work at all after the switch to Intuniv.
None of this makes sense to me since Intuniv is essentially an extended release form of Tenex. Perhaps Intuniv simply didn't control his impulsivity as well as Tenex did, but I suspect that it was somehow interfering with the absorption or effectiveness of the Daytrana patch. I say this because it seemed to take a good 3 hours for the patch to kick in while DS was taking Intuniv. I had to get up at 5 am to put the patch on him in order for it to be working when he started school at 8 am. That is no longer the case since we switched back to Tenex. My co-payment is a lot cheaper for Tenex, too ($5 vs. $40), which made switching back a lot easier!
I'm interested to hear how others are doing on Intuniv. For many, it seems to be a great improvement over Tenex, but that was not the case for us.
|
|
|
|
Post by kammi54 on Feb 1, 2011 0:34:31 GMT -5
MY son 9 is much more hyper now that he has dc'd intuniv ,than he ever was before starting the meds.. has anyone seen this . i am new and not sure i am posting in correct place thank you  |
|
|
|
Post by Mayleng on Feb 1, 2011 7:45:42 GMT -5
Welcome Kammi, yes being on some meds (that are not right for the child) can make him/her more hyper. Talk to the doctor and ask for a change of meds.
|
|
|
|
Post by healthy11 on Feb 1, 2011 8:28:48 GMT -5
Kammi54, I'd also like to say  I concur with Mayleng, and am surprised your son's doctor wouldn't have scheduled a follow-up visit soon after starting him on medication. Many of us find it's a good idea to keep a "written log," especially when first taking meds, so you can keep track of developments. (even things like time of the dosage, if it was taken before or after eating, whether your child might have a cold or be stressed by something else, sleeping habits, etc.) |
|
