Tuesday, February 9, 2010

Update on INTUNIV.....Week 3

After speaking with our doctor's nurse this last Friday or Saturday, I was watching to see if the 2 mg. of Intuniv really was making much of a difference. Saturday evening Grant did something that I've NEVER seen him do in his entire 7 1/2 years of life.

He fell ASLEEP on the couch at 5:30 pm!!

To some of you, this may be coincidental, or insignificant, but he has NEVER done that.....even if he was sick. He goes to sleep at night, pops awake in the morning, and is go, go, go until bedtime.....always. He has never, ever complained that he was tired or asked to go to sleep.

His older sister started messing with him of course, and it irritated him. So he went into his own bed voluntarily, and went back to sleep. When I tried waking him for dinner, he said he wasn't hungry, and that he was tired.

I'm going to just go ahead and say that was due to the Intuniv.
All the info. we've heard so far says that "drowsiness" is one of the side effects.
For me, that is a blessing, not a side effect.

He was back up within the hour, though he was very calm and cooperative. Normal bedtime came and went without a hitch!!
He had a really great day on Sunday too, even with the friend over of one of his sisters. Usually that sets him off and highly excites him, and he is running around more and is more irritating than normal. But he was very under control that day.

I also noticed that Grant was totally getting the humor in a movie we put on for the children Monday night. We watched Toy Story, which is not new to us, but we haven't seen it in a while. All the children were mesmerized. I don't remember Grant ever laughing and truly enjoying a film like he was this one. I was amazed to see him sit there and just flat out laugh at some of the funny things the characters did. His 3-year old brother was sitting there belly-laughing right along with him, but Grant usually either doesn't find things funny or doesn't get why it was funny. He wasn't being over-the-top or silly, just appropriately having fun. It was monumental to see him enjoying this as much as he did!!

So, this morning, we started the 3 mg. tablet. We are to keep in touch with the nurse this week to update her on how he is doing, but we did get a 30 day supply. I'm very hopeful that this new dosage will be even more of a benefit to him. School this morning was a PLEASURE!!! No anger or raging through the house!!

Just for informational purposes I thought I would tell you about our cost
for this medication so far.
The first two weeks were "samples" from the doctor, so that didn't cost us anything. This bump up to the 3 mg. came in a month's supply and would've cost us $174.79 for 30 tablets at our Kroger Pharmacy. Because this is such a new medication on the market, it doesn't fall under our "preferred prescriptions" with our insurance, so we will have the highest co-pay on this that will run us $40/month. This first prescription though didn't cost us anything because the Intuniv Starter Pak included a card for $50 towards the purchase of our first prescription. I believe that once we complete the final survey that is a part of activating the aforementioned card, we will again receive a coupon or something toward the next month's prescription.
Still have lots of work to do, but have been pleased with Grant's progress so far!!


27 comments:

  1. Hi, I did a Google for Intuniv and found your blog. My 10 year old started Intuniv on Friday. We have Spring break and figured that it would be a good time to try a new med. How did your son do the first few days? Mine is complaining of stomach ache, slight head ache, and is acting droopy. We have a week before school starts back. Thanks for anyh input: cindyparker@ftc-i.net

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  2. Hi Cynthia,
    You know, we didn't see a lot of great results with our son in the first few days. In fact, the doctor told us not to get discouraged about that because it takes some time for the medication to build up in his system. So we weren't really phased by that. I think he did say he had a bit of a headache one day, and he was usually falling asleep by 4 pm, but that wore off after several days. My advice would be not to expect tremendous change this week. You might notice some calming benefits, but it will get even better after about 3 more weeks. I know that seems like a long time, but we were willing to wait it out, and we're so glad we did. Keep in touch with your doctor as you go along if you're wondering if the medication is doing what it is supposed to for your child. Thanks for reading!!!

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  3. Hi Brenda - I too did a google for intuniv and found your blog. We are getting ready to start our 7 year old son on Intuniv. We had hoped to start it this past Friday but due to Good Friday, our pediatrician didn't get the bloodwork and EKG results back in time. I'm worried about starting him tonight as spring break is now over and I think I would feel better to see how he reacts over a weekend. I'd love to be able to keep in touch with you and Cynthia as we strike out on this journey to giving our children help and support to cope with their ADHD.

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  4. Hi Linda,
    I would LOVE that. You're welcome to email me or keep in touch by just peeking into this blog every now and then. I'm also fairly active on a forum through the ADHD of the Christian Kind website. You can find it here: http://www.christianadhd.com/index.php. The forum I post on now and then is found here: http://www.christianadhd.com/addhomeschool.phpbut I'm guessing from you comment here that you have your son in school.
    I think it would be a great idea to try to wait until a weekend to begin intuniv just so you can monitor how he reacts to it. Like I've mentioned before, my son's reaction to it was so mild that it was hardly noticeable. He did really great the first couple days, but once it was in his system, it was rough going again for a few more days until it was time to bump up to the next dosage. But whatever you decide I know the side effects are mild or almost non-existent, so I don't know that you could go wrong really either way (starting him a few days before the weekend or on the weekend). Keep in touch!! I'd love to hear how things go for you!!

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  5. Brenda: thank you sooo much for sharing with us! B/c the cost we've been debating whether to get "hooked" on yet another medication. We had started to notice one thing very rare as of late : fewer negative notes from teachers, many more smiley faces.

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  6. And isn't that so wonderful?!?! With the positive benefits we've noticed in our son, it's hard to argue against it!! I know that it is expensive!!! It'll take your breath away with how expensive it is. I know that our insurance does cover it but not at the lowest co-pay level. I don't know all that your child struggles with, but I wonder if intuniv alone would break some great results for him along with some other modifications within his learning and home environment. That's one area that we are constantly working on.....how is the tone in our home? We've had to do some major revamping to make it calmer and more positive for our son. We've also had to be more aware of our responses to him as we've gotten so accustomed to an angry, belligerant reaction from him all the time. Now that it's a little sweeter, we've had to put ourselves in check. It's a struggle that's for sure!!!

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  7. i just found your information my grandson is on this medicine and is very emotional with it have you noticed this he is 7.He is on the 3m.g.

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  8. Hello Anonymous!!
    Welcome!! How long has your grandson been on this medication? My son is very emotional by nature anyway because of his diagnosed anxiety. We did notice that he seemed to be calmer even from the beginning of starting intuniv. He still struggles with keeping his emotions in check, especially when his brain is being extremely stimulated, i.e. Xbox games, computer games. On days when my son's screen time is very limited (i.e. being grounded from said gaming things) he is much less emotional and seems to have more inner control over his emotions. If you're really wondering whether it's the right dosage for him, don't hesitate to call up his doctor and just share with him your questions. The doctor will want to work with you in getting it right for your grandson. We've also had to adjust our own responses to our son, as well as work to make his environment less conducive to triggering an emotional explosion. I certainly hope this gives you some encouragement!!

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  9. Hi! I googled Intuniv and found your blog. My son started the starter kit right after Spring Break. We are now have finished a month. He has been on 2 mg since he finished the 1 mg in the starter kit. His teacher has just raved and raved about how good he is doing in class. Well, yesterday, I got an email saying he was back to his old ways. fidgeting, talking, having a hard time concentrating, singing, etc. I told her it might just be a fluck and we would see how he is doing today. She just emailed me and said that he was not as bad as yesterday, but not near as good as he has been doing. I wonder if I should wait a few more days and see how he does or should I call his dr. I am wondering if he needs to go up to 3mg. I hate that I bought (well I did get it for free I guess with the starter kit) a month's worth of 2mg and still have 2 weeks left. Of course I want to do what is best for my son. I worry about him a lot. He has never been angry or violent. And, last week on the playground a kid was making fun of him and he pushed him down on the ground which landed him 2 days in in school suspension. The school counselor said that one of the side effects of the drug is anger and violent. I don't remember reading that when we first started. I don't know if this was a one time thing or if he is going to have another episode. I hope not.

    Kelley

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  10. Hi Kelley!!!
    I'm so glad to meet you!!! I hope you'll find encouragement and friendship here as you're on your journey in raising your son.
    Let me say first of all that I'm no professional, just a mom who is trying to do the best for her children also. But I can share some of our experience with intuniv and what we noticed when our son just started. We moved from 1 mg. to 2 mg. in just one week. Week 1 was 1 mg., week 2 was 2 mg. I believe that we stayed at the 2 mg. for a little while (maybe two weeks or less)until we felt that he needed a higher dosage. Our clues for that were similar to what you are describing in your son. When he started the next higher dosage, he would be just great for a few days. Then it would seem like the dosage wore off a bit. First I would ask myself what, if anything, has changed in his routine or daily schedule? Has his sleep been disturbed? Have there been special activities at school? Has something new been introduced at home? My son is sensitive to ANY kind of change and it throws him off for a day or so, and he acts out more. If you're not seeing anything that can be changed in his surroundings or schedule, I wouldn't hesitate to call his doctor and just ask him his opinion. The doctor may feel it is appropriate to bump him up to 3 mg. right away, or he may say to give it until the weekend and see what happens. My son has been at 3 mg. for weeks now, and we know this is the right place for him. He still has his struggles, but we can see that he can calm down much quicker and he still has sleepy moments during the late afternoon. You may also want to check out this article for more clues on knowing what is the right dosage for your son: http://www.corepsychblog.com/2009/11/intuniv-for-adhd-dosing-details/
    Keep me posted. I would love to hear what you decide!!!
    Brenda

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  11. My Son is 6 years old and was just switched from Adderal XR to Intuniv on Thursday. He is having a very hard time in school sitting still and makes a lot of noises. Every day is different, some days good, some days not so good. The inconsistency in his behavior is very trying. His new therapist has seen him a few times and believes he has a mood component in conjunction with the ADHD. She felt Intuniv might work b/c it is a non stim that works a bit differently than traditional stimulants. She has found success with this drug with children with mood problems. The Adderal seems to have stop working well. So I made the switch. He is on 1 mg and will bump to 2mg next week. So far he has had two HORRIBLE days at school. He can't focus, he can't sit still, it's like he's not even on his meds at all. Academically my son is highly intelligent and he is highly motivated but he is refusing to do work and has lost all motivation. I know it's only day 2, but wow. He has always had some anger issues but it seems to be much worse now that he's on this drug. I am trying to have hope that it will be much better in 2-3 weeks once it builds up but it is so hard. Has anyone else seen this kind of thing in their children. Switching from a stimulant to a non stimulant (particularly Intuniv) and then over time improved? I need to have some hope that this is the worst part and that in June, my son will be much calmer and happier.

    Thank you for reading.
    Beth

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  12. Hi Beth,
    I so hope you can find some answers soon!!! Welcome to my blog!! As I've mentioned in previous comments, I'm not a professional, and can only speak from my experiences with my own son who is currently taking intuniv. I would encourage you to talk to your doctor about the changes in your son's behavior as I'm sure he/she will want to work with you on managing his situation in the best possible manner for all. But what your son is experiencing sounds VERY similar to what we experienced with my son when we first started on intuniv. I was looking back at some of my previous posts about this and thought this might be encouraging to you: http://brenda-lifeinmyshoes.blogspot.com/2010/02/update-on-intunivday-9.html.
    I do know that intuniv has to build up in their systems before we see any really great changes. That was very true with my son. The first days on 1 mg. we were very excited, but that quickly wore off as his body seemed to get used to that tiny amount and he was back to his old high-jinks. When we put him on 2 mg. we noticed that it seemed to hit him right at first, but then it was like he got used to it again, and we had to bump him up to the 3 mg. It was about a 3 week process before we started seeing CONSISTENT results with our son. Some days working up to that were HORRIBLE and I would worry that we were going to see a difference. But from our experience you really do have to be patient. I wish there was some way you could pull your son out of school for the next couple weeks until it gets more stabalized in his system. It might really benefit him to get out of that intense school routine to help him calm down. But I do also realize that if he is like my son, that kind of change could really throw him for a loop too. Here's another really great website that gives lots of information about both Adderall and Intuniv: http://www.corepsychblog.com/2009/12/intuniv-for-adhd-avoid-drug-interactions/
    You can also type in the topic you're interested in within the search box on that website and it is full of helpful information!!! Hope this helps!!! Hang in there!!

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  13. Thank you for the information. It is encouraging. My son did better at home, obviously, than at school this weekend. I am calling the doctor today b/c I am wondering if they need to keep him on his adderal while he ramps up the intuniv. I've heard that being done. But we also know we may be dealing with a mood disorder as well so he may be medicated for that eventually. It is all very scary. He's so young.

    I wish I could pull him out of school but I can't. School ends in 3 weeks and he would be miserable without his friends. My son is actually doing ok at the moment socially but of course as he gets older if we don't get this under control he will begin to be left out. So for now, I am going to keep him in and work with the school to make sure he is given what he needs. I am hoping over the summer we can get the meds right and he can begin next school year with a bang!

    Thanks again for your advice.

    Beth

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  14. Hi!
    My son has been in Intuniv for 4 weeks now. He started on 1mg for 1 week. 2mg on second week. 3mg third week. His doctor put him on 4mg last week. He is very tired. After he gets home from school he falls asleep right away. How long it took your son to stop being so tired?
    Thanks for all your help.

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  15. You know, that's a GREAT question. Usually, when we were just starting the new dosage level (say, we just bumped up from 1 mg. to 2 mg.), we noticed he was very sleepy for the first several days on that new level. Then after about a week or so, it would level off and he would be able to go all day without a short nap. Now that we are on 3 mg., he still OCCASIONALLY needs a nap. I notice this more on days when we don't have as much going on and he's busier throughout the day. He isn't napping everyday anymore. From what I understand and have researched, the cue for knowing if you're on the correct dose is the sleepiness factor. If you're child is falling asleep all the time or sleeping for long periods of time (my son will only nap a maximum of 1-2 hours maybe once a month), you should talk with your doctor and see if your son is on too high of a dose. It may be that he will just need a nap after school, and once you reach summertime he won't need a nap as often. I considered naps a blessing for our family because our son was just always on the go and it was nice to have the occasional quiet time. Here's another website that offers great information on intuniv and how to know if your child is getting too high of a dosage: http://www.corepsychblog.com/2009/11/intuniv-for-adhd-dosing-details/

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  16. Thank you very much for your quick response. You are a great help.
    My son besides being tired is doing wonderful in school and at home. I used to get complains from his teachers all the time. Now they tell me there is a enormous difference from than and now. His concentration, behavior, politeness, has changed completely. I called this a MIRACLE from GOD!!!! (with the help from the doctors and Intuniv.)
    Please keep doing what you are doing. I know you are not a doctor, but you are a great mother and I can also tell that you are a great human being, just by taking your personal time to give us some light on what we are going through.
    Thanks a bunch,
    Simone

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  17. My son has just started on Intuniv, and I would love to hear more from you about your experience with it.

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  18. Intuniv was designed to and works best when prescribed in conjunction with a stimulant med - My 9 year old is currently on 70mg of Vyvanse and 2mg of Intuniv. I have to say, this is a miracle! We switched from Adderall XR at the end of the school years last year as it wasn't working as well as it had and wore off too early. Vyvanse by itself was better. I was skeptical about the Intuniv and wondered all summer if it was working until school started this year - thank you Jesus! What an incredible combination! Thought it was funny that you mentioned that your son was "getting" humor previously glanced over - we thought it was just a maturity issue, but was both also commented about my son's "new-found sense of humor" - strange, eh? We have not experiencedsedation, though stomachache is an issue and he's been complaining of headaches recently. I think the headaches are most likely a migraine-type (a genetic hand-me-down from me) as it is autumn and the barometric pressure is changing as well as a big hormone shift at this age... love your blog - will keep following -

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  19. Hello my name is Stacy and I have a 13 year old boy who has ADD . He has a hard time staying on task and paying attention. He loves to talk but does not have the hyper issue. Every teacher says the same thing about him. His abilty to stay focused is a problem. His grade are A's B's and C's, which I think is good. He is having difficultly staying asleep at night and is tired during the morning when he gets up. I have him on herbs and he is doing better. He was on Strttera and his heart would race and he did not do well on it. I was wondering if this would help with his problems. A client of mine has his son on it, they have seen a huge improvmnet in him. He is much younger thoough and has other issues. I have not seen any kids older than 10 being talked about. Could you please let me know what you think.

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  20. Hi Stacy,
    Your son sounds just like my 13 year old daughter. She was diagnosed ADHD-Inattentive Type (which means she has the focusing problems and not the hyperactivity issues). She is super strong in her language and communication skills, but struggles in Math. Her biggest issues are staying on task, sleeping at night, and being impulsive. We do not have her on medication because I felt we could manage her issues without medication whereas our son has other things going on with him besides the ADHD. Our son is ADHD-Combined Type (which means very hyperactive along with inattention)but he also has anxiety issues which we were not aware of before seeing a doctor. We tried to learn how to manage our lives and his issues without the medication, but we quickly saw we needed a little more help. The INTUNIV has helped him so much. But with all that being said, I'm not exactly sure how much this medication would benefit your son. I pulled out the information I had on it and it is indicated to help ADHD symptoms in children ages 6-17. I am part of a forum of homeschooling parents of ADHD children and I have read several reports from these parents who have children of varying ages and ALL of them have had positive experiences with it. I know that the information says that it is NOT meant to help with focus, but more with the hyperactivity issues. But I have found with my son that because he can stay calm and still longer, he then can focus on what's in front of him. So it has helped him on a multitude of levels.
    Have you thought about changing some things in your sons diet? We have experimented with that avenue also and have seen even greater improvement in our son's behavior than with just the Intuniv alone. I have several different posts about "nutrition with ADHD" about this subject if you're interested.
    Also, have you tried the melatonin for his nighttime sleeping issues? That has been a tremendous benefit to both of my AHDH children and hence to the rest of our family as well!!!
    Finally, I would encourage you to discuss your questions with your doctor also. He/she should have some great recommendations for you since you already know that Strattera is not going to work.
    I hope this has been a help to you. Please don't hesitate to come back with any other questions!!

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  21. Hi Stacy,
    Your son sounds just like my 13 year old daughter. She was diagnosed ADHD-Inattentive Type (which means she has the focusing problems and not the hyperactivity issues). She is super strong in her language and communication skills, but struggles in Math. Her biggest issues are staying on task, sleeping at night, and being impulsive. We do not have her on medication because I felt we could manage her issues without medication whereas our son has other things going on with him besides the ADHD. Our son is ADHD-Combined Type (which means very hyperactive along with inattention)but he also has anxiety issues which we were not aware of before seeing a doctor. We tried to learn how to manage our lives and his issues without the medication, but we quickly saw we needed a little more help. The INTUNIV has helped him so much. But with all that being said, I'm not exactly sure how much this medication would benefit your son. I pulled out the information I had on it and it is indicated to help ADHD symptoms in children ages 6-17. I am part of a forum of homeschooling parents of ADHD children and I have read several reports from these parents who have children of varying ages and ALL of them have had positive experiences with it. I know that the information says that it is NOT meant to help with focus, but more with the hyperactivity issues. But I have found with my son that because he can stay calm and still longer, he then can focus on what's in front of him. So it has helped him on a multitude of levels.
    Have you thought about changing some things in your sons diet? We have experimented with that avenue also and have seen even greater improvement in our son's behavior than with just the Intuniv alone.

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  22. Hi Stacy,
    Sorry, I had to cut the above comment short. I didn't realize how long it was and the server wouldn't accept it. Here is the rest of what I was trying to say:


    I have several different posts about "nutrition with ADHD" about this subject if you're interested.
    Also, have you tried the melatonin for his nighttime sleeping issues? That has been a tremendous benefit to both of my AHDH children and hence to the rest of our family as well!!!
    Finally, I would encourage you to discuss your questions with your doctor also. He/she should have some great recommendations for you since you already know that Strattera is not going to work.
    I hope this has been a help to you. Please don't hesitate to come back with any other questions!!

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  23. I came across your blog as well by googling Intuniv. I have a 4 1/2 year old son that just started the Intuniv 4 days ago. If you would like to check out our blog it is "thelewisfamilyjourney.blogspot.com" Logan is currently taking 1 mg and I have seen a few small changes (like I said, it is only day 4)... I have noticed that he is tired, he did complain of a small headache, but on the up side he has been a *little* more focused and a little more responsive to redirection when he is starting to make a not so wise choice! :) Thanks for blogging!

    Autumn

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  24. Thank you Autumn!! I hope you find encouragement here!!

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  25. Any Adult success stories taking Intuniv ? I would appreciate any comments, observations, experiences. Thank You

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  26. Any Adults successfully taking Intuniv, I would appreicate your comments. Thanks, Val

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  27. I as well would like to know if any one had taken this as adults. My son is 21 and just starting it for tics.

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I would love to hear your thoughts too.....