I just found this site tonight and am so thrilled to read all of your postings! Thank you. It is nice to know that I too am not alone being sad about having to medicate my child (8.5 year boy), watch their reaction to the different medications and try to constantly evaluate what you think is working/not working. I wish I was keeping a journal of sorts, because sometimes my son has crying spells or outbursts that are extreme that may be due to lack of sleep and not meds. We started out with an ADHD diagnosis and were having trouble in school with grades. My son had been identified as a TAG kid, but could not sit in his seat and was constantly distracted and hated to read. I think, like me, he was distracted and "bouncy" and reading was just very difficult. He says he feels like he has a motor running inside him. We started with Concerta, worked our way up to 36 mg for his wt. and it was good, but when he "rebounded" or came out of it in the afternoons, he was quite fussy. Couldn't sit still then to do his homework. It is a med that enters the system and exits all in one day. Doesn't build up like Intuniv. So we tried Intuniv, but since we are not in school, it is hard to tell if he could sit and focus or not. He doesn't seem as focused as he did on Concerta, but it is hard to tell. We did go through the sleepy spells and the dazed looks (which are heart breaking), but only for a few days at each level of increase. So he is on 2 mg now and at first he was getting sleepy in the early evenings, but now seems to have a hard time getting to sleep. I was happy that he was sleeping better at first, because he has never been able to fall asleep and has always had less rest than my younger son which also hinders his moods I think. He had one crying episode a couple of weeks ago where he was afraid someone would break into the house and said he had no friends. So, I'm not sure if we have "leveled out " at 2 mg and need to continue to go up, or change the time of day so that he can fall asleep easier, or what. There seems to be some good days, some bad. Each morning he is very hyper and can't sleep at night. Some days has outbursts with little brother, some days not. Of course that's kind of how life is too. Sorry to drag on, just so glad to have an outlet and to hear all the stories. It seems from your posts that a lot of ADHD kids have to take Melatonin. Does it come in a "kid" form or do you just buy some at the vitamin store and try 1, 2 or 3 mgs? And is the Intuniv for hyperness, focus and attitude or mostly attitude? I am very encouraged about what I've read on this site so far. If you didn't know better, it would seems that this is an Intuniv site that posts only positive stories! Hang in there parents! Love your children and pray for them daily!

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11 year old son, with very mild autism, ADD and aggressive tendencies, severe inattention, distractability, low working memory.....son is quite behind in school, has some true friends, but needs to catch up academically, and socialize better. Doc. prescribed Intuniv because it's not a stimulant and works better for boys than girls. So far, just a usual day, but did work hard for tutor..... really hope this helps him!

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kevnec said: My 7 year old daughter who was extremely oppositional/rageful ADD was on TENEX since the summer with great results (1mg). We started her on Intuniv about a week ago and I must say, the results are even better. The extended release seems to work even better than the twice a day version. I'm thrilled. She is happy and so are we.

My 9yo son is extremely oppositional and gets rage out of control at times too. He is on Vyvanse which works well for the attention, and is just working up to a higher dose of Intuniv. Does your daughter take the Intuniv in the a.m. or p.m.?

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dempsey said: My son started on Intuniv 2 weeks ago, started on 1mg first week , 2nd week bumped up to 2mg, He is also on Vyvanse...He is 13 years old, we have tried every adhd medicine..strattera, concerta (couldn't sleep), Adderal, Ritalin. We still struggle with his behavior every day..he is extremely hyper and always causing trouble. I have not noticed a significant difference with intuniv...we just bumped him up to 3mg. We are giving it to him at night and I notice around 7:00 pm he becomes aggitated (he is coming off the vyvance)...I am wondering if we should give him the intuniv in the morning. Does anyone have any feedback on when to give this medicine...my doctor said to give it to him at night to help him sleep........any feedback is greatly appreciated.

Hi dempsey our son is 9, and is on vyvanse in the a.m. We just started Intuniv a couple weeks ago, just about to up from 2mg to 3mg. So far, no big differences. I was wondering about a.m. or p.m. as well. We give it in the evening and I am wondering whether I should change to a.m. When his Dr. first prescribed it, she had wanted to take him off Vyvanse entirely. However, when I pointed out the study she showed me said that Intuniv seems to work better in conjunction with a stimulant, she said ok to keep him on. The rx bottle said give Intuniv in the a.m. which I thought was for Intuniv alone. I probably should have called back, but have heard of some giving it a.m., some giving it p.m. so I opted to try p.m. We have a med checkback in a couple days, I will try to post with an update and see what the Dr. says.

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I notice there are several posts of mothers with young children taking Intuniv. I have a five-year-old son on it and we just recently increased his dosage to 3 mg. So far, he sleeps all the time. I'm hoping he'll adjust so we don't have to go back down to 2 mg. I don't think 2 mg was working as well, probably due to the fact that he chews it with his food and doesn't get the full "time release" effects. We can't get him to swallow it with a drink; we have to conceal it in a bowl of cereal. He had been on Adderall and we could crush that over applesauce. I'm curious, how do those of you with young children get them to take it whole?

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My son started on Intuniv Monday evening....he is 5 years old, and will be on the 1mg for a week, then excel to a 2 mg then be back at the Dr. for a review of how effective the medication has been for him. Like many of you other parents have stated about the Vyvance, it turned my son into something awful as well. He was hallucinating, and extremely emotional....from angry to crying and his stories just blended and ran 90 to nothing. It was an awful experience for the both of us. My heart hurt so badly to see his poor little mind so confused as to what was going on with him mentally, physically, and emotionally for an everlasting 13 hours. I know they say it takes 2 weeks to get the full outcome of this medication, but honestly I have seen a difference in my son after 2 days. He is much more calm, much more loving and affectionate. He is actually able to express himself and be the child that he has always wanted to be. He has been a little extra sleepy but good sleep is great for him, as normally he is the last one to bed and the 1st one to wake all the while sleeping the lightest. I love my baby so much and I am feeling that there is a light at the end of the tunnel, just the relief of knowing that he can go to school and feel as if he is functioning like all the others rather than being the one "trouble kid" makes my heart overwhelming with joy. I hope and pray this continues to work for all the little boys out there like my son, they deserve a normal life so badly!!

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Joskimo said: my 4 year old has been on tenex for nearly a year and focolin for maybe 6-8 months - together they work really well but she doesn't sleep at night and mornings are a nightmare before her meds kick in. We just switched the tenex for intuniv. she was 1 mg tenex in the am and 1/2 in the afternoon. Doc started her this week at 1 mg intuniv but it's not touching her behaviors so we're bumping to 2 mg tomorrow - that will be closer to her tenex dosage so am hoping for good things.

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I can relate to so much of what I read in all these posts. I have a 15 yr old son that just started his Sophomore year of High School and was diagnosed with ADD when he was 8 and has been on meds since 3rd grade so we have been through them all just about (Concerta, Adderall, Focalin, Strattera, Daytrana, and now Intuniv). He was on the 1mg for a week and just went up to 2mg last night. Yesterday he text me from school that he felt like he was going to throw up and now today he went to the nurse and had to go home because he is so dizzy he thought he was going to fall out of his seat in class. Today is only the 3rd day of school, looks like this is not the right med for him. I think we will be going back to the Daytrana patch which so far we have got the best results from. I HATE medicating my son but he can not be successful in class without meds. Like several posts here he has no appetite and is very thin and has problems sleeping at night. He doesn't take meds over the summer so he puts on weight then for sure which is good to see. The Intuniv did help with sleeping at night for sure but I did not see any changes in his behavior other than that. He is old enough now that when he feels he is having a really hard time sleeping he will ask for Melatonin which I would highly recommend for the kids not able to sleep, it's a totally natural supplement. I would have him take it every night if I could but he hates taking pills so he fights it. Also, several people brought up the 504 plan, YES, have your child get a 504 plan or IEP (Individualized Education Plan) at school for sure. You will see as they get older and are in Middle School and High School it will help them a lot. So to sum it up for the topic at hand...our experience with Intuniv (for only 8 days) is that we saw no results other than falling asleep better at night and nausea and dizziness. Call in to the Pediatrician...I think we are done with this med, who wants to feel like that all day?

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momtojhwo said:

I'm curious, how do those of you with young children get them to take it whole?

My pediatrician recommended having my daughter hold a sip of water in her mouth, and then I press the pill into her lips (she can do this herself now) and then swallow. It has worked for us and hope it will work for you, too.

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My son is 11 years old. He was diagosed with ADD in 2nd grade. He just could not focus. He has been on Ritalin (2nd and 3rd grades), Adderall (4th and part of 5th grades) and most recently Focalin. The ticks and inability to go to sleep has pushed us to look into other medicines that are not stimulants...Intuniv was suggested by our pediatrician. I have read all of your reviews (which sound positive for the most part) and although nervous very excited about starting. He started his 1mg today and could not focus...he did not complete a test or some class work and homework has taken us 2 hours when it should have been about 30 minutes. He came home and said, "This medicine does not work!" I realize it takes time to get up to the right dose, but I don't remember reading anyone else going through this. We did stop taking the Focalin per doctor's orders. Anyone go through the same thing when starting out...any suggestions. Thank you!

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Intuniv takes time to see the full effects. You are increasing the dose slowly for one things. Secondly, it is not a stimulant and doesn't have immediate effects. The make of Intuniv says is can take several weeks (up to a month) to see the full effects. It will be tough for a child who is used to taking a stimulant to get through this period but it has the potential to be a great medication for ADHD for some children.

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Claire89 said: My son just turned 8 and is in first grade. We have tried/tested many medications over the last 3 years, incuding Focalin, both short acting and long acting (in varying doses and combinations), Vivance and back to Focalin XR (5mg 3x day). Then about a year ago we switched to the Daytrana patch to avoid the multiple dosing. That worked well, but he still had impulsive moments so we added Guanfacine, again multiple small doses a day. Once Intuniv came out we tried it immediately. We have had very postive results and while he was always good with us (his problems manifest in school or other settings with lots of people), he has been even better, positive, helpful and using his manners. In school, things are better as well, still an occational bad day, but they are fewer and further between. Our son is 50 lbs and is on the 3mg dose of intuniv and a 20mg Daytrana patch. Since mornings can still be tough we get up an hour before he does, put his patch on (which takes an hour to kick in), give him the intuniv and 2.5mg of Focalin short acting (ask him to swallow and go back to sleep). Most mornings this works and when he gets up an hour later things are a bit easier. If he's already awake and we go in, it's more likely to be a rough morning, but by the time he gets to school everything has kicked in. The Intuniv take about 3 hours.

The other thing we do with him each morning is some kind of exercise. Either he does 100 jumping jacks or jumps on a mini tramp or goes for a walk and does a few sprints between mailboxes. The purpose of this is to 'wake the brain'. This has really helped.

He also takes a Nordic Naturals EPA Xtra fish oil capsule and 15 mg of zinc each day and 3 mg of melatonin at night (1mg short acting and 2mg time released)

Does anyone else have experiance with Daytrana?

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My 5-1/2 year old daughter was just diagnosed ADHD/ODD and she started taking Intuniv 2 days ago. So far, she is sleeping by 6 pm every night and it's breaking my heart. She is extremely drowsy. It's the first time in years there has been peace in my house in the evening because she gets the most hyper and defiant at night. Still, I am missing a bit of the night time "craziness" right now.

Since the Daytrana patch had to be ordered, she will be starting it tomorrow. I am hoping the Daytrana counteracts some of the tiredness from the Intuniv, but I guess I'll be finding out this weekend. I will give updates on how she is doing, but for now, I am just so nervous about the side effects, whatever they may end up being.

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Well, the 1st day with the Daytrana patch was surreal. She hated getting the patch applied, but here are the changes: I could brush her hair and it didn't bother her like it normally does; she took the initiative to organize her books and toys & to get rid of books and toys she no longer wants (I've wanted this to happen for 2 years and it did today); she behaved in public; she lost her bad attitude; she was not drowsy at 6pm--she lasted until 9:00; and she focused!!!

The negatives are a decrease in appetite, a few stomach pains, mild bouts of emotional crying over the availability of Hexbugs at Toys R Us versus Target.

My only concern is her excessive talking today. She normally is talkative, but today was nonstop for nearly 4 hours. I am hoping this calms down a bit--it's kind of scary because it could almost be considered "manic" and that does run in the family. For today, I will hope it is caused by the first day of stimulant medication and will pray it decreases a bit over the next few days. Right now, she is sleeping just fine, so that is a very good sign :)

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My son has been on Intuniv now for 5 weeks. I have only given him 1mg, because with 1mg i have noticed a change in his temper and anger. He seems to be irritable. Priore to the medication he use to give me a hard time about homework but got over it quiet rapidly, now it is an ongoing fight to do and finish homework, he seems not to care if he is punished at school for not turning in homework. When he doesnt understand something now he calls himself an idiot and even slaps himself on the face while doing that. I discussed this w/ his Doctor, but he stated this is not a side effect, he suggested i start him on Focallin but i dont want to since that made him loose alot of weight while on it. I am not sure if anyone else is having these issues with Intuniv. Please comment. Regarding his attention it has not improved much, his memory has but not his attention in school.

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My 12 year old daughter was diagnosed with ADHD inattentive-type several years ago. She is still convinced that the doctors are wrong about this. Our most recent neuro-psych evaluation says otherwise. We had put her in the Learning Assistance program at her private school, but it was a kind of "one size fits all" program and she felt very ostracized being there. It made her very resentful and actually exacerbated our typical battles. Many of our struggles are puberty/teen girl versus mom-related, so I'm not expecting any medication to make it all pleasant. She has no hyperactivity or impulsivity problems. It is all focus. She's very bright, does well on all tests, especially standardized ones, but can't seem to get her assignments turned in to save her life. Once middle school hit, the difficulties really increased. As a seventh grader, she has at least 2 hours of homework a night. I'm lucky if she gives it 15 minutes worth of attention. When she was first diagnosed, we tried going without meds and tried dietary changes and supplements. This did not work for any of us. Since then, we've tried Focalin, Vyvance, Ritalin and Daytrana. Of these, I liked Daytrana the best. She has a hard time with capsules, and the non-oral med seemed easier with the stomach issues. On any of these stimulants she has had sleep and appetite issues. She doesn't take meds in the summer. It's our compromise with her. We started Intuniv a week before school started with the 1 mg and progressed through the starter-pack with the 2 mg. She's now on 3 mg. The sleepiness is definitely an issue. While it's refreshing to see her want to go to bed, she can't concentrate on her homework at all. Since she plays volleyball most days after school, it means the tiredness hits just as she needs to settle in to homework. Most nights she just bails on it. Thus far I've seen no real improvement with Intuniv. More concerning is that I think it has triggered some severe constipation issues. I am curious about whether she should try taking the Intuniv later in the day, or combine this with a stimulant, and will discuss it with her doctor.

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Greetings!

My 15y Son has been on intuniv for 12 month now. He started on 5mg now he takes 10. I have to say that this medication does take time to work I would say 6 weeks, don't miss a day or it will take time to get back to the same rhythm. He was prescribed the Intuniv because the psychiatrist saw he was biting his nails. And yes it has helped.

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Our initial experience was similar to many posted: sudden improvement of social skills and overall happier demeanor. We were thrilled! Now I am not so sure...social skills are still better, but absolutely no focus. Coming home with every bit of classwork because it wasn't done. Doctor will add small dose of stimulant at next visit. Still sleepy at school in the afternoons. Evening dose found him up at 3:30 a.m. Some trouble with wetting, though never ever in the past (he is 9). Very negative and down on himself - describes many days as "miserable". Vyvanse worked for a bit, though no weight gain in two years - since June (no meds for part of the summer) he has gained 8 pounds. (side note, I have been taking vyvanse for more than a year and it has lost potency twice in that period and needed to be strengthened. From an adult perspective, it does lose effectiveness after a bit. Drug holidays don't work to bring it back down either.) Long term on intuniv?

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I am so scared. I have put off getting my twins help for years. Any medication scares me. We are supposed to start tommorow. We have a two story with the sleep I worry about him falling down the stairs. The doctor said to give it in the morning so he will be relaxed by bed. If you give at night it could alter the sleep. Not sure if that helps but that is what ours said. My doctor never did testing like I thought he would though. Like some screening or process. They did with my daughter. It took weeks before medication. With this one two hours later he had medication I wonder if that is normal.

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My 8 yr old son started taking intunive and it really was great with his eating focus and sleep, but within a week he was having horrible dizzy spells. He woke me up one morning because he was screaming that he was passing out. His blood pressure laying down was 70/42. His 12 lead EKG showed sinus bradycardia. We are waiting for 24 hour holter monitor results because his heart rate is now extremely irregular. This medication can cause low heart rate and heart block which is a conduction issue within the heart. My child felt like he was going to die. He is now off all meds until we get his heart beat regulated so we are back to square one. Watch carefully for signs of low heart rate and bp when starting or increasing doses of this med. It actually is a cardiac medication used for ADHD.

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@mommyoftwins,

A general yard stick to measure if your physician is right for you and your family is your comfort level. If you are questioning that your psych gave your son medication too hastily, maybe that's a sign that it's time to move on to another doctor. You current doctor may or may not be "slacking." but you need to be comfortable with the level of care you are receiving.

Take a look at this article, "When to Fire Your Doctor: Ensuring the Best ADHD Diagnosis and Treatment," by Dr. Edward Hallowell (http://www.additudemag.com/adhd/article/5769.html). Dr. Hallowell describes both a "good" doctor and a "bad" doctor when it comes to ADHD treatment.

Follow your mother's intuition as well, we are often right.

Penny W., ADDitudeMag.com Community Moderator; mom to Luke, ADHD, age 8; creator of the Website {a mom's view of ADHD} at http://adhdmomma.blogspot.com

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I have a six year old boy. We have been on Intunive for almost a month. We came off of stimulants, due to weight loss. At the start of Intunive, he was sleepy, but that only lasted a few days. I expected him to get sleepy again when we went to 2mg, but he didn't. I have weaned him off the stimulants and everything is going well. The only thing "bad" thing, I have seen so far is a lack of interest in some activites. Not sure if that's meds related or not, so I'm on the lookout. Has anyone else seen this?

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My 8 year son has been on Intuniv since mid June 2010. We have had tremendous success with this medication. He had been on Focalin regular and Focalin xr. When those meds wore off he would be unbearable. We have our appetite back and he is doing much better in school this year. It does take time, but as a pharmacist, I know not every drug will work for every child. For the benefits we have seen from this medication, it is well worth the time it takes for the full effect of it to kick in. My son's doctor did not stop the Focalin cold turkey. As we started Intuniv, we tapered off of Focalin. We are at 2mg and holding steady. He has actually gained about 7 pounds in the last few months. He gained no weight last year.

We are still trying to figure out what is the best time to give him his Intuniv. If we give it in the morning, he is worn out by 4 or 5 pm and falls asleep. We have recently gone to giving it to him after school, but after school for us is sometimes 5 pm because he has to go to daycare after school. We also give him melatonin which has helped establish an actual bedtime.

Hope this information is helpful.

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My 8 year old daughter has been on Intuniv for a little over 6 months now. It seems to be working much better than Strettera, especially with the mood swings and weight. The Dr. had increased the dose from 1 mg to 2 mg when it was time, but it seemed to stop working altogether, so we went back to 1 mg which worked. I give it to her in the mornings before school, but this morning before I gave it to her, she was complaining of a "rushing" in her ears and that her head was "running". I checked her pulse which was pretty high 150's and listened to her heart (I am a nurse) and it sounded fine, just fast. I gave her her medicine, but stopped by the Dr.'s office before school to have them take her blood pressure. It was slightly high for her age and since Intuniv decreases blood pressure, I am concerned that her body has increased her blood pressure to compensate for the medication. She has also gained about 30 pounds since starting Intuniv, so that could also be the culprit. I assume that her blood pressure was much higher before she took her medicine. I just wondered if anyone had every had this problem before?

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Our 13 year old son started on Intuniv along with Focalin to help with the homework time. I could see it was helping with the after school time when Focalin had worn off but he could not stand how dry it made his mouth and was drinking water all day at school. Since they can't chew gum or suck on hard candy at school, we stopped taking it since there did not seem to be a school-friendly solution. Any solutions out there??

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