Kapvay

16 Comments & Reviews: Kapvay

1. Kapvay is now available in a generic formulation to treat ADHD. By Gregg L. Friedman MD

2. Kapvay is a Non-stimulant for the treatment of ADHD. By Gregg L. Friedman MD

3. OUT-OF-DATE and ALMOST ALL FOR CHILDREN. PLEASE – Take this seriously!
   1) We need up-to-date reviews on Clonidine and other alpha agonists!
   2) We need two separate sections a) ADULTS b) CHILDREN
   This is Sept. 2019 – every review, but one, is from 2017!

4. My 14 yo son has ADHD, as well as Auditory Processing Disorder which a language delay. He has been on Vyvance since 4th grade, which made a huge improvement in his life at school. A few ticks were present before Vyvance, but nothing we couldn’t live with. Before we started Vyvance, be tried Intuniv for ~1mn and it did absolutely nothing for the ADHD. We moved to using Vyvance + Intuniv, but noticed at about 6 weeks, that he started to be very emotional. Our pediatrician removed the Intuniv. When we moved to a new state ~two years ago, we again added Intuniv; only to again hit a wall around 6 weeks with Intuniv as our son became overly emotional.

   Saying all of that, we were beginning to realize that his OCD was becoming more of a concern. Since pre-K, we had always minimized his OCD as something that was just part of his personality; but recently, he became obsessed with certain numbers and expected us to respond to questions using this number. Upon sharing our son’s extreme frustration with our pediatrician, we decided to try clonidine.

   We started with a 0.1mg dose of generic clonidine XR at bedtime. We were very hopeful as it appeared that our son was “catching himself” when he became frustrated over completely meaningless numbers and details. After two weeks, we increased the dosage to 0.1mg at bedtime and 0.1mg in the morning with his Vyvance. During this first month, I was so hopeful about the clonidine; however, I was observing that his tics were happening more often, but I was willing to live with this if it meant he had better control when he became frustrated.

   Then….about a week ago, after being on clonidine for ~6 weeks, our son had a melt-down that seemed like a true psychotic break! It was horrifying to see as we had never seen any aggressive behavior, as it was actually his very sweet nature at home and at school that saved him in school. This episode started because my husband responded to my son that I purchased “3” cookies, instead of “4”. Our son was throwing things, pulling at his own skin until it almost drew blood, crying, screaming at the top of his lungs, as well as the appearance of new tics. I was truly horrified as I had never seen these behaviors in him before! Of course, this was the one time that our pediatrician was out of town, which frightened me even more about possible next steps. I finally called our pediatrician on his personal cell and he informed us to stop giving our son the clonidine immediately. My husband just hugged our son all evening, reiterating over and over that everything would be OK. It has been a very long five days now with no clonidine, and he is now our kind and sweet boy again.

   I am now realizing that it’s more than a mere frustration for our son….the OCD a primary concern. Our pediatrician mentioned possibly adding a trailing dose of an SSRI to his Vyvance. One thing is for sure…I will never allow him to be put on clonidine again. Very disappointing as I was so hopeful in the beginning that this drug could help our son,

   To other parents, if your child is taking clonidine, observe your child carefully. Upon visiting the FDA website’s Adverse Drug Event dashboard, there are a plethora of serious adverse events, including life-threatening, fatal and suicide events, that have been attributed to clonidine.

   Another point, clonidine is different than Intuniv. If you compare the package inserts of both, the observed side effects are much more serious for clonidine.

5. My son who is 7 started last week and we have seen great things. A little tired, but so far that is the only side effect we have seen. Nothing compared to the horrible side effects he experienced on Focalin and Vyvanse. He received great reports from his teacher for the entire week. First time in months!

6. We have tried Intuniv and Tenex with our 10-year-old son and they both seemed to make him more “dulled” emotionally except that his anger went through the roof. He has ADHD and Tourette’s Syndrome. We are now on Kapvay with him. He is on his second day with a morning and evening dose. We are not seeing much difference between him on the medication and him off the medication except the decrease of tics. We are going to try it for at least a month unless we see severe side effects but we are asking the question…what is more important, decrease of the tics or help with the ADHD. We were so hoping that this medication would help with both but we are not seeing that at all. If anything he is more scatterbrained and more easily distracted on this medication.

7. We have an 8 yr. old boy who has anxiety, OCD tendencies, ADHD, and Tourette’s, although he does not have many tics at all. We have had NO luck with any of the medicines we have tried. Intuniv and Strattera made him very, very angry, sad irritable…horrible. His symptoms increased tremendously. Then we tried Concerta which worked great for the ADHD for about 2 1/2 weeks. then every day at 3 when it wore off he was a mess. He has taken clonidine since he was 4 to help him get to sleep at night. although our first neurologist told us it was only supposed to last 4 hours and be out of his system, both we and our son saw improvements during the day with him being able to “tolerate” annoyances. Because the clonidine seemed to help our new neurologist recommended the Kapvay ext. release (clonidine) during the day. We have tried it twice now and have only lasted a day each time because it also, like the non-stimulants, made him very tired, but also very angry and irritable. It also did nothing for his attention of course. We will probably continue to try to find something to help with schoolwork. He finds it boring and overwhelming to sit through the day.

8. After increasing the dosage and no longer impacted by the sleepiness, we (with doctor’s approval) stopped this med. We found our son to have become exceedingly aggressive. We had multiple incidents of him fighting with kids and actually hitting them. This was very unusual. For a medication that had no positive redeeming qualities, it wasn’t worthwhile to ride it out any longer. Anger has always been a problem but the aggression/anger levels definitely receded when we stopped.

9. On January 20, 2011, my son developed a head tic after being on Vyvanse for 20 days. Turns out we have a family history of tics we just didn’t know it until my son developed one. The head tic was very scary because it came out of nowhere and came on extremely strong. Our research suggested finding a psychiatrist and neurologist. Through a friend we found a psychiatrist and through his pediatrician a neurologist (we still haven’t seen the neurologist – 2 month waiting period) but the psychiatrist has been wonderful. He started him on Kapvay for the tic, he felt like the ADD could wait, controlling the tic is the most important thing, and we fully agreed. He’s been on it for 31 days and is now up to .3mg. We have found that each time we up the dosage it takes a little while for him to adjust, it makes him really tired. I think going from .2 to .3 was the longest and more tiring adjustment period. On .3mg he is about 75%, which compared to the frequency of the tic before this is amazing. For the ADD aspect, I don’t know that I would say his concentration or focus has gotten any better since he’s been on it but it has slowed him down and now we don’t seem to have as many meltdowns while doing homework. We still need to sit with him and constantly remind him to focus and to help keep him on track.

   1. Thanks K’s Mama. My son has been on Kapvay for 19 days now. He takes one pill at night and half a pill in the morning. He hasn’t been sleepy on this dose and I plan on making it one pill in the morning and one at night starting 4/4. He plays soccer and I fear the medication may make him a bit tired on the field, so I’m waiting for a Monday (after the weekend games). We have seen an improvement in his overall attitude and constant movement. He sees a therapist along with taking the Kapvay. While talking to her, he mentioned that he feels tired on the medicine. However, when she followed up with questions, they realized that he only feels more tired when he first wakes up and when he’s sitting down not doing much. After talking with him further, she thinks it’s not that he’s ‘tired’ but that he’s actually calm in those moments and that this is a new feeling for him. We’re hoping for the best.

10. I started my 10-year-old son on Kapvay 8 days ago. I got the sample kit from the dr. He was taking 0.1mg at night, until day 8. Then we upped his dose to a pill at night plus a pill in the morning. That was yesterday. He was sleepy the entire day. Still managed to function but struggled a little. He had soccer practice in the evening, fell asleep on the way there, practiced, did well and almost fell asleep on the way home. I called the doctor and she said to cut the pill in half in the morning. She’s discovered that some kids need to titrate slower to get their bodies to adjust to it. She says the company doesn’t want you to cut it, but that there’s no other way. Hopefully today will go a little better for him. I should note that days 1 through 7, we didn’t see a significant change in him.

11. My 6-year-old son was diagnosed with ADHD last year. I saw signs during the preschool years as he was kicked out of three schools. This has been a trying year as we started him on Concerta, Focalin 2.5, & Focalin ER, Intuniv. Although the stimulants were great and we saw the benefits, it was difficult for me to see the negative side effects (tics and meltdowns). I had mentioned to my doctor a month ago about Clonidine to reduce side of effects of stimulants. She contacted me about Kapvay, which has been wonderful. Day 6 and he is a bit sleepy unlike Intuniv (sedated). It should be mentioned that he is on Kapvay only. I have noticed during the day he is calmer but I am not sure about his concentration. Be patient with the sleepiness as it will get better with time.

12. We use Concerta and are now using Kapvay with it. He formerly slept 10-12 hours at night and went to a 6-hour night with intermittent sleeping. This caused more meltdowns. The Kapvay is taken every night at 6:00 pm and allows him to go to sleep on time and stay asleep. Made a huge difference.

13. I recently started my 7-year-old son, who is on Focalin 20 mg on both Intuniv and then a few weeks later, tried Kapvay. Both medicines (which are from the same class of alpha-2-agonist) caused my son to have visual disturbances. He began seeing squares, circles, strange shapes. The visual disturbances were worse at night and in the early morning. He also had very bad nightmares on Intuniv. He became highly anxious about what he was seeing and eventually didn’t want to go to bed. As soon as we took him off each medication, the visual disturbances went completely away.

14. We did clonidine 0.1 mg, which is very short acting, we then switched to Kapvay Er, 0.1 mg (we dose a couple times a day) which is a little longer acting clonidine only stays in your system a very short time the half life is only a couple hours or less. We still use this in conjugation with
    Focalin. We have tried everything else. My son also has other issues other than just ADHD.

15. My son is always anxious, has trouble getting to sleep and way too active/impulsive in the day. He was taking clonidine every evening and it really helped him fall asleep. His doctor put him on Kapvay (1 at 8 pm and 1 at 4 pm). Rather than help him sleep he was up until 12:30 or later every evening unable to sleep. He also got terrible stomach pains. After 3 weeks I took him off.