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Thread : Kapvay - new time release Clonidine  
8 Feb 2011 @ 6:52 AM
coop522 Join Date: Tue 27th May 2008
Threads: 4 Posts: 5
Kapvay - new time release Clonidine

Any experiences with this new med yet? Only just approved by FDA in Oct '10 for use in kids. We started it last night as an add on to Focalin. Abilify was not working for our 9yo son. He is lying next to me right now saying he doesn't like the way he's feeling but cannot put any words to it, physical or emotional, so it's hard to gauge if it's a known side effect he's feeling. He also got up at 5am today so maybe he's just very tired (it's 7am now).

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9 Feb 2011 @ 1:44 PM Reply # 1
phenomenalmom Join Date: Wed 9th Feb 2011
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kapvay

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 ds doctor a month ago about Clondine to reduce side of effects of stimulants. She contacted me about Kapvay which has been wonderful. Day 6 and a bit sleepy unlike Intuniv (sedated). It should be mentioned that he is on Kapvay only. I have noticed during the day he is more calm but I am not sure about his concentration. Be patience with the sleepiness as it will get better with time. Also, try giving it to him an hour before bed. I will keep you up to date.

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22 Mar 2011 @ 3:58 PM Reply # 2
mamamia Join Date: Tue 22nd Mar 2011
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kapvay

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 enitre 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 dr. 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.

I was wondering if anyone had the sleepiness issue and if it went away? How long did it take if so?...

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Last edited by mamamia : 22 Mar 2011 @ 4:01 PM. Reason:
31 Mar 2011 @ 11:38 AM Reply # 3
K's Momma Join Date: Thu 31st Mar 2011
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Kapvay

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.

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1 Apr 2011 @ 3:58 PM Reply # 4
mamamia Join Date: Tue 22nd Mar 2011
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Kapvay

Thanks K's Mama. My son has been on Kapvay for 19 days now. 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. She explained to him that it's normal to feel a little tired when you first wake up and that it's o.k. to sit and be calm. If he's not falling asleep or feeling like he wants to go to sleep, it's o.k. Tired can be a very broad term and for someone who's mind and body are always racing, it can be difficult to decribe what it feels like when they've slowed down. We're hoping for the best.

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1 Apr 2011 @ 5:00 PM Reply # 5
coop522 Join Date: Tue 27th May 2008
Threads: 4 Posts: 5
kapvay- gave up

After increasing the dosage & no longer impacted by the sleepiness, we (w/ dr) stopped this med. We found our son to have become exceedingly aggressive. We had multiple incidents of him fighting w/ kids & actually hitting them. This was very unusual. For a med 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.

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10 Apr 2011 @ 4:56 PM Reply # 6
h.v. Join Date: Mon 26th Jul 2010
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Kapvay

We have an 8 yr. old boy who has anxiety, ocd tendencies, adhd, and tourettes, 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 reccomended 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-stims., made him much worse. Very tired, but also very angry, and irritable. I could deal with him just being tired, but when they act and feel worse it's not the answer. It also did nothing for his attention of course. I am not sold on the Kapvay and not impressed with a lot of the reviews. We will probably continue to try to find something to help with school work. He finds it boring and overwhelming to sit through the day. On another note, if you have not tried iliminating dairy, wheat, colorings and preservatives, I highly reccomend it. we have seen dramatic improvements with anger and irritability when he does not eat any of them. We noticed within a few days although it can take a few months to get dairy and wheat out of their system.

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11 Apr 2011 @ 11:56 AM Reply # 7
ibdawnk Join Date: Mon 11th Apr 2011
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Kapvay

We have tried Intunive 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 Tourettes 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.

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6 May 2011 @ 6:31 PM Reply # 8
dgeevers Join Date: Fri 6th May 2011
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Kapvay

Please keep in mind that Kapvay takes a few weeks before you will see significant changes in your child. It is not like a stimulant which works immediately. Also, understand that ADHD is a difficult thing for physicians to treat and that one thing will not work for every single child. This is the reason there are so many different types of ADHD medications on the market. If one thing worked for every child, we wouldn't have so many different classes of ADHD medications. If Kapvay doesn't work for your child, there are other options. However, it doesn't mean it won't work for another child. Unfortunately, most parents don't understand this.

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21 May 2011 @ 10:33 PM Reply # 9
acebros Join Date: Sat 21st May 2011
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Kapvay

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! Keeping our fingers crossed, since it is new and we could not find a lot of information on it.

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24 May 2011 @ 9:09 PM Reply # 10
River1430 Join Date: Tue 24th May 2011
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Kapvay

I do not mean to be impolite, but many of the posting are written within hours or just a day of starting Kapvay. Kapvay takes a complete 5 weeks to see the ultimate effect. I am speaking from experience. The first four evenings our son fell asleep quickly. But now we have him taking it at dinner time and he is not heavily sedated at all. He falls asleep normally and sleeps for about 10 hours. Mornings are so improved having Kapvay on board until the stimulant kicks in. He started his first day of weaning from the stimulant this week. His behavior has improved dramatically since starting Kapvay. He brings home tickets for good behavior from school and is receiving an award at the end of the year for music. Please post successes too!!! We did not see a huge change in behavior until into the second week on Kapvay. We continue to see improvement into the third month as he develops new more appropriate coping skills. His confidence is soaring. He feels really good about his achievements.

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15 Jun 2011 @ 8:50 PM Reply # 11
chisnina Join Date: Wed 15th Jun 2011
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Kapvay and Abilify

Our 4yr.old son is ADHD and has been takeing Abilify and it worked at first but then it didn't work anymore so the dr. add Kapvay... He is now takeing 1mg of Abilify 2 times a day, once in the moring and once at bedtime. He is also takeing Kapvay 0.1mg at bed time too... He started takeing the Abilify in Jan. and the Kapvay last saturday (6-4-11)... I now the dr. said it will take a couple of weeks before we wil see a differance but I already do see a differance.. He is not haveing as many melt downs... Used to before the Kapvay was added, he would want something and if you didn't understand him he would throw a fit and not talk to you,he would just scream and kick his feet.( way more than just a temper tantrum fit). Now that the Kapvay was added he actually talks and we can get more accomplished alot faster than before.. My only down fall is that he sleeps alot, and my husband is not likeing that... He sleeps all night, wakes in morring then falls alseeps again.. I give him his meds around 9am or so, after i get up and he has already been up with dad and taken a nap... Then around 2pm he falls asleep again. When he gets bed time meds (between 8-9pm) he is asleep with in 20 mins of takeing the meds.. Our 4yr.old is a very hyper little boy, very smart for a 4yr. old.. He will start school this year and I now he will have trouble at school if we cant get the right meds.. He cant sit still longer than 2 mins.. (unless Scobby doo is on)...lolol... When it comes to teaching him he wants to learn but he just cant be still long enough and his brain is going 90 to nothen... How long will he be tired for?

We have another son who is 7yrs.old and he is also ADHD... He is takeing Intuniv 2mg at bedtime and Strattera 25mg in the mornings.. He has been on the Intuniv for 6months or so and it worked untill about 3pm it wouldnt' work anymore. He would actually take a 15 min nap in class but he was unable to sit still in class too.. Then when on the bus on way home he would fall alseep. (personally i think he was wore out from the day at school).... He started takeing the Strattera last saturday (6-4-11).. I really havent seen a difference..He is one that will ask a question over and over and over again, and he cant sit still either you have to tell him at least 100 times to do something and sometimes it dont get done... Homework is a nightmare. It will take him 2 hours if not longer to write 5 words sentences.He was actually getting to listen to his MP3 player in class, if he didn't hear the other kids then he could do his work with no problem. He is going into the 2nd grade, and he is actaully a grade level ahead of his class mates.But seince he cant get his work done on time he falls behind.. He was haveing to sit out at recess because he couldn't get his work done, so thats when he got to listen to his MP3player. But his meds are makeing him sleepy alot too. He sleeps all night, sleeps till 10 tkaes meds and falls alseep again around 1-2pm..... Again my husband is not likeing this...He is worried that this is not gonna get better.

My question is how long will these meds make them both sleepy and will it get better? I dont wont them to be zombies and dad doesn't want them to be sleeping all the time.. Has anyone ever had there kids on these meds before at the same time.. This is the only down fall we have and only side effect... Actually our 4 yr.old didn't eat very well untill the kapvay was add and seince he has been on that he eats like there is no tommorw...lololol... We are so glad he is eatting:)

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1 Aug 2011 @ 5:26 PM Reply # 12
Neutron Mom Join Date: Thu 10th Sep 2009
Threads: 2 Posts: 13
Starting Kapvay Now...

My 10 y.o. boy has been on Concerta, Intuniv and Abilify for several months now. I complained to his doc last week that his anger issues haven't changed-in fact, became worse since he hit a kid at camp- so why do we need to keep him on all 3? Well, he's finally taking him off Intuniv and putting him on this stuff-I really want him off the Abilify, too. I can't deal with the degree of opposition any more. It's esp. hard because he has a PDD-NOS w/perseveration behaviors. When he doesn't get his way, he melts down and just cannot get off topic! No matter what you do or say or how you say it, nothing works. It's almost like he has this invisible barrier around him that is impenetrable. It's very rare that we don't have a screaming match in the morning and/or the eve. We'll see if this does anything. I LOVE my son so much and feel so guilty turning him into a pill popper; yet at the same time I'd do just about anything to find relief! Have to find my 135th wind...and probably more to come!

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30 Nov 2011 @ 10:22 PM Reply # 13
Noah's Mom Join Date: Wed 30th Nov 2011
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Question for you River - you said you are weaning him from the s

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River1430 said: I do not mean to be impolite, but many of the posting are written within hours or just a day of starting Kapvay. Kapvay takes a complete 5 weeks to see the ultimate effect. I am speaking from experience. The first four evenings our son fell asleep quickly. But now we have him taking it at dinner time and he is not heavily sedated at all. He falls asleep normally and sleeps for about 10 hours. Mornings are so improved having Kapvay on board until the stimulant kicks in. He started his first day of weaning from the stimulant this week. His behavior has improved dramatically since starting Kapvay. He brings home tickets for good behavior from school and is receiving an award at the end of the year for music. Please post successes too!!! We did not see a huge change in behavior until into the second week on Kapvay. We continue to see improvement into the third month as he develops new more appropriate coping skills. His confidence is soaring. He feels really good about his achievements.

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Last edited by Noah's Mom : 30 Nov 2011 @ 10:31 PM. Reason:
30 Nov 2011 @ 10:29 PM Reply # 14
Noah's Mom Join Date: Wed 30th Nov 2011
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Question for you River - you said you are weaning him from the s

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Noah's Mom said:is he only taking Kapvay then? We can't seem to find a stimulant that doesn't have nasty side effects. My son take .1 mg in the am and around dinner time, and we've tried vyvanse which i thought was great until the insomnia kicked in, and we've been back and forth on Concerta but the tantrums and crying jags are brutal - I am so stressed out about this, I don't know what to do. The Kapvay seems to work I think - but I don't really understand what its function is in conjunction to the stimulant- did you doctor explain it to you? Maybe he did a better job, and I'm interested in your decision to wean him off the stimulant. Thanks for your help - or anyone that has something to add. Quote:
River1430 said: I do not mean to be impolite, but many of the posting are written within hours or just a day of starting Kapvay. Kapvay takes a complete 5 weeks to see the ultimate effect. I am speaking from experience. The first four evenings our son fell asleep quickly. But now we have him taking it at dinner time and he is not heavily sedated at all. He falls asleep normally and sleeps for about 10 hours. Mornings are so improved having Kapvay on board until the stimulant kicks in. He started his first day of weaning from the stimulant this week. His behavior has improved dramatically since starting Kapvay. He brings home tickets for good behavior from school and is receiving an award at the end of the year for music. Please post successes too!!! We did not see a huge change in behavior until into the second week on Kapvay. We continue to see improvement into the third month as he develops new more appropriate coping skills. His confidence is soaring. He feels really good about his achievements.

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Last edited by Noah's Mom : 30 Nov 2011 @ 10:32 PM. Reason:
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