About our Daughter

I am mother to four wonderful daughters, ages 17, 19, 21, and 23, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. In spite of the trials, she enjoys lacrosse, running (finished her first marathon in October of 2014!), and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.

How Did You Know She Was Bipolar So Young?

I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Never change, start or stop a medication without the approval of your child's physician!

Monday, January 11, 2010

Giving Intuniv in Two Daily Doses

I just wanted to share with the other parents out there who now have their child on the ADHD med Intuniv that we decided to divide up the 4mg dose into two doses, one before school, and one at bedtime, to spread out the benefits over the whole day. The doc said that it lasts 24 hours, but we are not so sure that is the case. We have seen better results with Mae in terms of more consistent calmness and focus with the divided dose.

I am back in full-swing today with homeschooling our third youngest, Jane, who was sick all last week as well as was Caroline and Mae. Elizabeth went back to school for a half day today. Hopefully the mono symptoms will improve with going back for only half-days for a while. She is freaked out about her grades and failing classes automatically due to too many missed days. The school district here is draconian about missed classes at the high school level. If you miss seven of any one class you fail it unless an attendance appeal is approved, and the appeals process happens twice a year. Doctor notes are the only excuses allowed, no notes from Mom and Dad. I understand their push to eliminate skipping school, but when your child has a long-term illness, it is a pain in the butt.

140 comments:

carla said...

Do you give 2 2mg tablets or split a 4? My dd is on 3 mg of Intuniv right now but still needs Concerta, although we've reduced that dosage from 63 to 54 mg now. My dd is in the 99th %ile of severity of adhd, however, so I don't ever see us doing Intuniv as monotherapy. It sure does help with the irritating stuff in the mornings and evenings!

Glad your dd continues to do well on Intuniv!

Megan said...

I am giving two 1 mg tablets in the am and the same in the pm. She can't swallow the 2mg tablets. I am glad you know that your son may need more than Intuniv. Some kids really need more than one medication. Too many parents stop before they see real results.

Cinda said...

Fingers crossed for you and your girls. I know how it is when your daughter is already struggling to stay stable with one thing and then another couple things hit them. It is hard for them to be resilient....I wish you good support from your school!!! Thank you for the post.

Corrie Howe said...

I wonder if you could get a doctor's note in the appeals process which could get you a "pass" on having to do this every appeals process.

Megan said...

Yes, they only accept doctor's notes for the appeal, so today we turned in four of them with a letter from us as well as the appeal form. I think we will be fine, hopefully.

Cinda said...

Hi Megan. I can't figure out how to email you off-line but wanted to let you know about Linea's last blog. From one mom to another..ahhh.

Megan said...

Hi Cinda. Feel free to email me at meganbstack@yahoo.com

Jackie said...

Great blog, thank you!

I have 2 med questions you could help me with:
1) have you found amantadine to "wear off" during the day? My dd takes 100mg at 8:30a and 5:30p but seems to hit a period each day beginning around 2:30p when she loses the benefits to her alertness, processing, and hunger.

2) does your dd who takes Intuniv have simple ADHD? My dd who has ADHD complicated by Aspie traits (including emotional dysregulation), cannot handle the stimulants or Strattera, so is taking the amantadine with low doses of Abilify and Lexapro. But have been wondering if Intuniv would help more with the attention and executive functioning.

Thank you - and sorry if I posted twice by mistake, I'm new at this!

Megan said...

Hi Jackie! Welcome. As far as the Amantadine goes, we give it to Caroline at 8:00 and then at noon, which is what they did when she was started on it at Meridell. She does struggle more in the late afternoon, evening hours with self-regulation, so it may indeed be wearing off. I am wondering if your dd would do better taking the second dose at noon. Ask your psychiatrist. Also, my youngest that is taking the Intuniv has the "ring of fire" ADHD which is the explosive, argumentative type, and she did not respond that well to the stimulants. We have thought at times that she needs a mood stabilizer, but haven't tried it. She does much better on the Intuniv but she is still quite demanding. We think that she has a lot of behavioral therapy to do. Intuniv is designed especially for those who are very defiant, moody, etc, with their ADHD. It might be just the thing for your dd. Definitely ask about it!

Kimberly said...

My 17 year old son just started on Intuniv for ADHD, still titrating up, just moved from 1 mg to 2 mg and found out my insurance doesn't cover it. does anybody know if our psychiatrist will be able to write it for the generic guanfacine hcl, which comes in 1, 2 and 4 mgs., which my insurance will cover at a generic price? i have put in a call to our doctor but wanted to see if anybody has been through this before with Intuniv.

Megan said...

Hi Kimberly! I don't know about the generic form. It may not be available, but I haven't found out. Intuniv is derived from Tenex. I wonder if Tenex could be a subsitute? Megan

Kimberly said...

Hi Megan -

Got a call back from the Doc's office. They are going to try him on 1 mg. of Tenex in am and 1 mg in pm since it's not timed-release. They made a point to tell me that he would be sleepier on the Tenex than he is with the Intuniv. I don't know how much more tiredness he can take. We'll see - hopefully after this if it's not successful, we will get ins. to pay for Intuniv, which he has done wonderfully on for the past 2 weeks. Keep your fingers crossed on this one!

Megan said...

That's good Kim! I hope the Tenex will work out. If not, I say do anything to keep the Intuniv on board. We have paid a lot of money to keep our daughter stable and healthy, and that being said, when your kid's future is at stake, educationally, socially, mentally, you will do ANYTHING to help when you love your kid!

Kimberly said...

Megan, thanks for the encouragement! I understand all about doing whatever it takes to make sure your child is taken care of and happy and stable. I would have taken another job if I had to, to be able to pay the full price! Thanks again for the encouragement.

Mike said...

Hi, we just started our 4 1/2 year old daughter on Intuniv (2mg) after no success with stimulants and tenex. I understand that these drugs are not recommended for children under 6, but my wife and I are at our wits end about controlling our daughters ADHD. We are in the process of having her begin behavior modification therapy in hopes that she'll be able to start kindergarten in a better place. Has anyone tried medication on their child under the age of 6 and if so, how did it work?

Thanks.

Mike said...

Hi, we just started our 4 1/2 year old daughter on Intuniv (2mg) after no success with stimulants and tenex. I understand that these drugs are not recommended for children under 6, but my wife and I are at our wits end about controlling our daughters ADHD. We are in the process of having her begin behavior modification therapy in hopes that she'll be able to start kindergarten in a better place. Has anyone tried medication on their child under the age of 6 and if so, how did it work?

Thanks.

Megan said...

Hi Mike. I don't have experience with Intuniv in a child younger than 9 but I think that the literature says that most kids need to be at the 3 to 4 mg mark to see real improvement. My dd has not experienced a decreased appetite like the stimulants tend to do. Behavioral therapy is an imp part of helping Severe
ADHD.

Paros said...

I just stumbled on this interesting blog entry and discussion. Today is the 3rd week for my 9 yr old son's Intuniv treatment. We began 2 weeks ago at 1 mg then up to 2 mg one week ago and today at 3mg. He is taking it in combination with Concerta.

He had been on guanfacine for quite some time but on very low doses. He does seem tired today. I did not realize that is a side effect of forms of Tenex although at times in the past when he could not sleep his doctor said that he could have a 1mg dose at night. It always helped.

BTW Mark - my son began stimulant medication when he was 4 but it was not good for him so I took him off. Over the years I have gone back and forth from prescription to holistic remedies, switching when I can no longer handle the effects.

I love my son but it is overwhelming at times. His father died when our son was 7 months old so it has been just me for almost 9 years.

The night time is the worst b/c he will not do his homework in a room by himself. If he is not monitored he will not be doing his work. No medication seems to make a difference in that regard.

The other issue that concerns me with my son is that he seems to have no drive. He plays sports but not particularly well. He has no drive to do better at school or on the field or in karate. There is no drive there.

I had/have ADHD so I understand a good portion of what he is going through and thought I would be able to be a compassionate and helpful parent but I haven't a clue as to how to get him to experience self-motivation. Anyone else struggling with their child's lack of motivation?

Megan said...

I understand about lack of motivation! Our dd Mae who is on the Intuniv HATES homework and even though she is quite bright, her grades don't reflect her IQ because she forgets to do assignments, does them and then forgets to turn them in, etc. The intuniv has helped greatly with reducing the amount of time she spends on her assignments in class and at home, but she doesn't seem to care about her grades or doing the best she can. She would rather perform (she dances and constantly creates plays) than do mental work. I am guessing she will be artsy and not an accountant! I think the motivation issue is a hard one. Have you read Taking Charge of ADHD? You may have since you have been dealing with this for a while. I am glad you found my blog. Megan

Bridget S. said...

Dear Megan,
I stumbled across your blog while searching for info on Intuniv. I have twins (12 year olds, boy/girl) my girl seems stable on Concerta 36 mg daily for now, but my boy is facing more challenges than simply ADHD. He does not respond well at all to stimulants, causes aggresiveness. Thank you for all you do and for sharing your journey. I feel I have found a place to share and gain knowledge to be more informed as I enter into unknown territory with my son. My best to you, Bridget S.

chicagomomof2 said...

Oops Carla! Don't split the Intuniv pills. They're time released and you don't want to overdose your dd.

Our son (10) took a really long time to climb up to the ultimate dose, but we really like the intuniv. He needed 2 weeks on each the 1 and 2 mg before we got him to 3 mg. He got sleepy with 1, sleepy again with 2 but the transition to 3 mg was a little easier. I wonder if the reason so many people couldn't tolerate Intuniv due to sleepiness is that they didn't stick with it long enough to adapt? P.S. Our son takes it with Risperdone but no stimulant meds. We're finding smoother moods and are decreasing the risperdone as a result (yayay yay! Hate those side effects).

Joette said...

Hi. My yr old son was diag w/ADHD and Sensory Processing Disorder. We tried different doses of Aderall XR but it wasn't right for him. Today we started Intuniv. We were given a sample from our dr to try it for two weeks before given the actual rx in case this doesn't work either. Looking at all of your comments I have a questions. Is there a difference between Intuniv, guanfacine and Tenex? Do the kids react different to them? Is one better over the other? I thought that the generics were supposed to be the same.
Thanks,
Joette

Megan said...

Hey Joette! Intuniv seems to be an ER version of Tenex. But do read on the Core-Psych blog on my sidebar--lots of great Intuniv info from a prescribing psychiatrist.

psbrown8799 said...

I am considering this medicine for my 9 year-old son. He has a high metabolism and most medications don't last half as long as indicated. Have you noticed anything like this with the longevity of Intuniv?

Sheila

ann said...

My son is 8 and has agression that be explained. He goes from 0 to out of control without warning. The 1 mg. the dr. suggested just made him too tired to function. I am going to try 1/2 mg. in the morning and a 1/2 at night. He has had these agression issues since he was 5 it was diaganosed as just strongwilled until now. He is also gifted he is 3rd grade and is at 5th grade level. He has been moved from school to school, and I feel like I have no options. The school he is now is really helping and is very understanding. Do you have any thoughts or ideas that could help?
I do not quite understand everything about bipolar. I just know we need help.
Ann

jilljoe said...

My son has been diagnosed with ADHE and prescribed Intuniv. Isee the signs of AdHe but he was diagnosed by an ARNP, so I think we are going to get a second opinion. Meagan do you think an ARNP is certified to give a diagnosis. She work in the field.

Megan said...

Some CNP are truly amazing, and know just about as much as doctors do, in my opinion. But an ADHD diagnosis is something that you should truly go to a psychiatrist or psychologist for. I think that regular pediatricians and ARNPs can made an educated guess at whether or not a child has ADHD, but a full battery of tests will reveal so much more. Sometimes other problems can look like ADHD but are actually anxiety, or bipolar disorder, or even a learning disability, or a sensory processing disorder. I would get a second opinion from a really good psychiatrist or psychologist.

Edith said...

Hey Jilljoe, I second Megan's opinion. You need a GREAT psychiatrist or psychologist to get the diagnosis.

Yes, nurse practitioners are usually as knowledgeable as physicians about almost anything and they're often better listeners and smarter. The smartest human I've ever met is a NP and she's also the smartest mental health professional I've ever met. BUT you need someone with specialized training and who can do the testing needed. The outstanding general pediatrician who has saved our backside many times, was out of her league with some of the medicines she'd prescribed. She had a lot of mental health experience -- but she was not a psychiatrist.

Richard Hendricks said...

Mike,
I found this blog looking for information on Intuniv, which my ped has recommended for my son. He's now 7 yrs old but we started him on Focalin XR at 4. We pulled him out of one school at 3, and got kicked out of another one at 4, just as we were diagnosing him with ADHD (don't ever use Primrose. :( ). For the last two years we've had him on Daytrana, the extended-release patch. We recently added a small 5mg Ritalin booster in the morning. Anyways, just wanted to reassure you that children can needs meds at 4 yrs old!
I mentioned the lack of sleep to the dr, and he wants to have us try out Intuniv after spring break. It sounds like it might be a good match for us.

Linda said...

Hello, thank you for all you do.
Do you find the Intuniv helpful for extreem defiance, irritability "a mood disorder"?
Are you aware of any natural remidies or docs or centers that specilize in such?
Thank you so much

mpdxraynucmed said...

Hi Megan, I found you Blog as I was researching Intuniv My Daughter has been on Concerta, focalin etc since she was 3. She is now 11 her aggressive behavior, lack of social awareness,& possible mood disorder do not make for a calm house. She stared taking 1mg Intuniv at night back in January this was up to 2mg after 1 week the results were great but now we seem to be back down that slipper slope. Her Dr. has up the Intuniv to 3mg we are now trying that in the morning this is the 3rd day and after sleeping all night still does not want to get up. Do you think we should go back to the night time dosing or maybe split the dose up? THanks for a great Blog

Megan said...

H! I am glad you found my blog. You say that your daughter is on Intuniv and isn't doing as well as in the beginning, and is now very sleepy. I am wondering if dividing the dose up would be a good thing, since it can make kids really sleepy, especially at first, but from what I have seen, that sleepiness wears off after a few weeks. Also, is your 11 year old daughter on anything else for her moods besides Intuniv? Intuniv alone would not be enough if she is bipolar, for example. She would need a mood stabilizer. You may want to explore if ADHD is really the only diagnosis. What kind of testing has she had?

Megan said...

Hi Linda! The symptoms you are describing could be signs of a number of things, so you need to be sure to get a really good psychiatrist to do a work up (or psychologist) before drawing any conclusions about the cause. We thought our daughter was just depressed and ADHD when she was five, but she turned out to be bipolar, but our youngest is not bipolar, but shares some similarities with the explosivesness. Intuniv does help with that, but not completely. Check out the websites under the link on my blog for some great resources to explore. NeuroScience offers meds that are more "natural" but only after testing hormones, neurotransmitters, etc.

Jen said...

My daughter is on 2mg of intuniv at night for about 2 1/2 weeks. this is in addition to 75mg of trazadone for sleep disorder. she has ADHD, PDD and executive dysfunction. MRI shows heteropia in left frontal lobe. We are seeing extreme irritability, emotional lability and overall emotional dysregulation since strating intuniv. We're ready to give up. Any thoughts

mpdxraynucmed said...

Megan she is also Concerta, Focalin XR, Seroquil, tompimax, & also depakote

Megan said...

Jen, if your daughter is not responding well to the Intuniv, I am wondering if your daughter should be taken off of it, and wondering about a mood stabilizer. I have nephews with Aspergers and Autism, and ADHD symptoms too and it seems that Abilify can be a helpful drug for kids who are not bipolar, but fall more into those kind of categories. Have you asked about Abilify? I am not familiar with heretopia, but I looked it up and see how that can affect your daughter's development. Do you like your daughter's neurologist?

Megan said...

Honestly, we have never been able to successfully introduce any kind of stimulant ADHD med to our bipolar daughter's med mix. The meds instantly push her towards irritability and mania. Most bp kids can't handle any ADHD med in my experience. Intuniv could be the best alternative, as well as Amantadine. You can look that up on my blog to see how it has been great for Caroline, better than an ADHD drug for her focusing issues.

Megan said...

In other words, the focalin and concerta could be working against your daughter's other mood stabilizing meds! Not all psychiatrists understand how these meds are mostly not tolerated by bp kids...

Jen said...

Hi-
Thanks for responding. She was previously on Zoloft and she was very cranky, moody and it was interfering with sleep. (thus the crankiness?)Respiradol and Abilify were talked about as next steps (prior to Intuniv coming on the market) but I've been weary of using these drugs given the side effects. I'm working with a psychiatrist. There are not many pediatric neurologists in my immediate area. We went to a pediatric neuropsychiatrist who was excellent but it would take 1-2 hours + to get there and it just took too much time to get there to simply have medication monitoring appointments. I'm a school psych by trade and have made myself well versed in psychopharmacology.

By the way, we have also tried the seizure meds

Megan said...

Jen, has bipolar disorder definitely been ruled out? Her responses to the zoloft and ADHD meds sounds suspiciously like how bp kids react to those kind of meds without a mood stabilizer on board.

Megan said...

For those who are interested, we started giving Mae the second Intuniv dose at dinner instead of bedtime because her focusing ability on homework was disappearing after 6:30. This seems to have helped. I can't get her to do homework right when she gets home from school because after sitting and using self-control all day at school, she really needs to blow off steam by playing until dinner. I think this is especially true for ADHD kids!

danielle said...

My son is 6 and was recently put on adhd meds. He was first put on liquid methylin 10mg.that was started on march 9th. There has been no change On march 18th the peditrician switched him 2 the 1mg intuniv the child stays sooo sleepy. Myself i dont think he has adhd. Almost 2 months ago he started not wanting 2 go 2 school. It usually takes at least 2 or 3 teachers to pull hom off me when i drop him off. I thought he was just not wanting 2 go 2 school then it started happening everywhere school church babysitter or even if i try 2 leave him at home with my teenagers. He has been kicked out of b4 school care. he has even tried 2 chase my car when i leave the school. The school has really tried 2 help. The school has called in a behavior specialist and even set him up with a lakeview counsler. We r trying several different behavior modifications. Nothing including bribes dont work. The principal has even asked me 2 keep him at home occasionally just 2 give everyone a break. He has another follow up appt on march25th what should we do? Should we continue meds. Someone please help. Danielle

Megan said...

Hi Danielle. I am so sorry that you are going through this difficult time with your son. As far as the Intuniv, I would try giving it to him at bedtime first. The sleepiness should wear off in a few weeks. You may have to try it longer to really see results. The 3 or 4mg dose is what most kids work up to. Behavior modifications can't work effectively if the brain chemistry is off, either because they are not on the right ADHD med, or they have been misdiagnosed and actually need to be on a mood stabilizer for a mood disorder. You need to have him fully tested by a psychologist or psychiatrist if you haven't already, or get another opinion. My child was asked to leave several schools before she was stabilized. Don't give up hope because with a lot of trial and error you will, with the right help, find out what is going on with him. Peace.

sivley4 said...

Well..I am so glad I stumbled upon your blog! I have a 10 year old son who is on concerta and zoloft. He was put on inuniv about a month and a half ago to help. It seemd that his meds were not working all of sudden, and the intuniv migh help. Though I HATE for him to be on 3 meds...school seems to be going very well. Just the other day he had several thing s happen that made it a "bad day". By that night he had such a sever meltdown, that I was scared for him. I have never seen anything like it.he ended up under our bed. When he calmed down, I pulled him out. It was like it just stopped. He has had meltdowns, and anger issues, just never seen anything like this. these "meltdowns" with adhd..have you experienced them to get worse as your child gets older? We have an appt with his dr. that give us his meds. but thought I would ask.
Also. the intuniv made my son so tired I almost gave up on it. But after about a week n half or 2 weeks, he was fine. its hard to get started but seems to be worth it.

Megan said...

Meltdowns I am quite familiar with. Our youngest daughter who is on the Intuniv didn't have huge meltdowns and fits of anger when she was younger, they definitely developed from about the age of six or so. I am wondering if his only diagnosis is ADHD, or if he might have an anxiety issue, or a sensory processing issue as well. What does the doctor say?

sivley4 said...

I am so glad I found your blog. My son is 10 and has anxiety and adhd. He is on cncerta and zoloft. He was recently put on intuniv when it seemed the two meds were not working as well.I HATE for him to be on 3 meds. but school is going well..so I won't rock the boat! Intuniv is hard to start as it does make them so sleepy, but for those just trying it, after about 2 weeks it will be fine. I almost gave up it made him so tired. But so glad I didn't give up. I have a question. My son has anger control issues..but nothing to severe. Just the other day he had such a severe "meltdown" that I was scared and wondered if he would be able to calm down ever. Have you noticed meltdowns to get more severe as they get older?

sivley4 said...

oops sorry for the two coments..didn't know the first one went through. So sorry

sivley4 said...

he has been diagnosed with Generalized Anxiety disorder and ADHD. He was scared to go anywhere..that everything would make him sick or something bad would happen. He checks his food still to make sure expiration dates are good..chicken is cooked things like that but is alot better than what he was. Never heard about the sensory processing thing before. Will have to look that up. I am reading these other notes from you and from other moms...when you have a child with issues like these..I feel like such a bad mom sometimes. Its kinda nice to hear there are others out there struggling and trying to do whats best for their child. Its a really hard struggle!

Kim said...

I'm so happy to have found your site. I have an 11 y.o. son who was dx'd with ADHD at age 8. He reacted badly to Adderal, became suicidal on Strattera, so we finally landed on Focalin XR, which seemed to work well until last year, when he started to have horrible mood swings, going from extremely happy to sad to aggressive, finally culminating in a fist fight at school. His doctor's solution was to increase the meds, which only made symptoms worse...bye bye ADHD doctor, hello child psychiatrist, who confirmed my suspicion that he had bipolar disorder (which I also have). Since then, he's been on Abilify, which has pretty much taken care of the modd swings, although he does still have some, but not nearly as severe, but not the ADHD symptoms so he's still on the Focalin XR as well, but it's not lasting past noonish. We just had to switch doctors because of insurance and his new doctor wants to supplement his Abilify and Focalin with Intuniv. I haven't been able to find much information online about using this in conjunction with other meds so all of your posts have been really helpful. Thanks :)

ann said...

My son is 15 years old and has ADHD with mood swings. My son has been on many meds. He usually adjust fairly well and they work well until he becomes immune to them. I did try him on focalin a few years ago and he was on it for about 8 months. My son experienced the worse agression he has ever had why he was on focalin. Focalin unfortunately has a side effect of causing aggression; it may make agression worse when the child already has aggressive tendacies. I did change his meds once again and he has been on vyanse for 2 years. Vyanse had worked the best for him of any meds he has ever used for ADHD, they also tend to help some with the agressive tendacies. He is currently taking 70 mg. once a day. The wonderful thing about this med is that it last 12 hrs and only has to be taken once a day. I do not know if this would help your son, but you should see if the focalin is causing his agression to be worse.
I hope this helps.
Ann

psbrown8799 said...

Kim,
My son, age 9, was on Abilify along with Daytrana (a form of Ritalin in a patch form) along with a boosting 10mg dose of Ritalin, and they did a great job until earlier this year. I believe Abilify had just become less effective.

Is your son very skinny or have a high metabolism? My son is a yes for both. We can't give him ADHD medicine in a pill form because his body uses it/metabolizes it way too quickly. We started using the Daytrana patch because it goes into the blood stream and not into the digestive system.

Currently he is taking 3mg of Intunive and 30 mg of Daytrana. It took about 3 weeks before we started seeing a difference. Almost over night he started smiling and behaving better. He has a slower and more pleasant speaking rate and cleans his room without reminders! It's not perfectly clean, but I don't have to ask him daily now. We weaned him onto the new meds and took him off Abilify first. Next we will take him off the 10 mg of Ritalin. So far we are very pleased with the results. My son is happy with them too.

Sheila

Megan said...

We didn't give the Intuniv to Mae the entire week of spring break, out of laziness, and now we have reintroduced it. I forgot about the titration though, and just gave her the 4 mg dose. Ooops. No big problems, but she was really sleepy yesterday and today.

Megan said...

Intuniv also helped with my daughter's stuttering. It wasn't really bad, but enough that it was noticeable. The intuniv seems to slow her brain down a little.

Edith said...

Oh yes. I've learned about gradual increases and decreases in psych meds too. When I forget to give my son his Risperdone, it's rough the next day, but it REALLY is bad the day after. Only 3 days later is he ok again. It took our son over a month and a half to get up to 3 mg of Intuniv due to sleepiness. I'm sure 4 was a lot. Plus, since it reduces blood pressure (the first approved use for it), it's dramatic. Medicine holidays are almost always a bad idea. I hear it's ok to give kids Ritalin on schooldays and not weekends, but as a ProVigil user, I think it's a terrible idea. When I don't take it, I'm tired and my sleep is lousy the next night. Our bodies get used to the medicine we take.

However, I'm glad to know you're not kicking yourself too hard. Grownups can make mistakes too. Even really wise and knowledgeable grownups who adore their children. Wish I could say it never happens at our house.

Megan said...

Yes, you would think I would know by now not to do what I did, but I do forget sometimes!

nmstevens79 said...

My son was diagnosed at age 7 with ADHD, oppositional defiance disorder, and the doctor would not rule out bipolar. He will be 9 in Aug. We started him on vyvance and he had done great except he had lost a lot of weight, so due to the pleas of my mother-in-law (who works as a receptionist at a pediatric dr office) we asked about Intuniv, we titrated up to the 3mg but he was still having acting out at school so at the follow up appt. we increased his dose to 4mg at night, he has been still acting out at school, falling asleep multiple times throughout the day and evening. He is sent to the principle office almost daily. It scares be by how tired he is and now he has been very moody from very angry to extremely sad and crying. He often makes comments that he is stupid. He is not stupid at all he is in the gifted and talented program at school and if he could concentrate he would be strait A's, I don't know what to do, it is breaking my heart seeing him struggle so much at school. And he begs me every night to give him something to help him sleep. Any advise I would be greatly appreciated.

Megan said...

Wow! I am so sorry that your son is going through all of this. How long has he been on the Intuniv?

SM Brown said...

nmstevens,

Sounds like my son. He will be 10 in May. He is about 52 inches and 52 lbs. We just started Intuniv a month ago. Last week we took away the Abilify. This week he is jerking and wiggling very badly. We have a follow-up appointment today. It's very scary to see him be so helpless.

Richard Hendricks said...

nmstevens79 - In my opinion, weight loss is something that can be managed in the future. Getting kicked out of school or crushing his self-esteem cannot. Tell you MiL you understand her concerns, and tell her you have weighed all the advantages and disadvantages, and you feel it more important that your son get a good education and not damage his self-esteem irreparably. Consult with your ped. about titrating down the Intuniv and restarting the Vyvanse. If he was really doing well, I don't see a real reason to change it.

For weight loss I recommend feeding the kid as much as he wants. I know our son always manages to get hungry right at bedtime when we ate dinner at a normal hour (with us ending up frustrated at his lack of hunger earlier), so we try to eat a little later now (7:30ish) so that we fill him up as much as he can take before going to sleep.

Another suggestion might be to give him more calories. I don't have a problem giving my son candy etc as long as he takes care of his teeth. I read about a study that found that sugar really doesn't have that much of a behavioral effect on children, and after I started paying attention to how our son did before and after candy, I tend to agree. TV/Computer causes a lot of tantrums with us though.

Good luck.

ann said...

mnstevens79
It is a long road to find the right fit of medication for your child.
It sounds like the intuniv is not working, or he has not been on it long enough.
I have used vyanse for several years with my older son an I feel it does work the best for him.
Weight loss is a factor though. I have learned a few tricks along the way. If your son is not hungry and like shakes or choc. try enery shakes and add a banana to it; use the shakes that are high in protien. You can buy the protien bars to they come in various flavors, again by the ones that are high in calories and protien. These items work great when they don't want eat a meal they also make a great snack. This might help maintain his weight.
My older son takes mirtapazine for not being able to sleep he takes it a few hrs before bedtime and he is able to get a good night sleep. One benefit is that it will make him hungry.

If you don't want to go back to the vyanse you might want to consult with your dr. about adding amantadine or respirdol with the intuniv, this has made a world of difference for my youngest.
Hope this provided you with some insights of other options. Please talk to your dr, and explain the problems.
Hang in there.
Ann

chicagomomof2 said...

Megan's daughter is better with the Intuniv dose divided between AM and PM but for my son it's better all in the morning (not dividing the pills of course, because they're time released). At night he's getting Risperidone/Risperdal 0.5 mg. When he had Intuniv at night, it made him sleepier in the morning. So he's better off with 3 mg in AM than 2 mg in AM and 1 mg at night.

So....the moral of the story is to experiment (consulting your kid's psychiatrist) because the supposedly 24 hour time released medications CAN be better at one time than another.

SM Brown said...

The doctor upped the dosage to 4mg of Intuniv yesterday. The teacher has already mentioned today that he seems to be less jerky and wiggly. If the wiggles persist, he will add the 2mg Abilify back next week.

I agree with the others...let him eat whatever he wants as long as he is eating. I have purchased cheese sticks, fruit, pudding, breakfast bars, etc...anything that will add bulk. He also only drinks vitamin D milk. The doctor suggested the Breakfast Essential drink on top of the regular breakfast.

Richard Hendricks said...

@SM Brown,
All good ideas. One thing I also recommend is whole milk. My son drinks just water and whole milk, very very occasionally we'll give him juice or a 1/2 soda 1/2 water. But whole milk is his major drink other than water.

If you yourself don't like it, I think it's OK to get a separate jug.

Megan said...

Thanks, folks, for the helping suggestions on dealing with the weight loss that most of the stimulant meds have as a side effect. Our dd has not experienced loss of appetite or weight loss on Intuniv, which is good since she complained a lot about the not-being hungry-at-lunch-time problem and then being starving later.

If your child isn't responding well to a medication within three weeks, I would question whether that med is right for your child. Usually three weeks is a good indicator for most drugs, in our personal experience. If a child's behavior gets worse, not better after three weeks, then I would say call the psychiatrist and switch. Better to deal with weight loss than a crushed self-esteem like Richard said. We know what that is like! If a child develops a feeling of failure, then everything starts to slide downhill.

Tara said...

hi there..i have an almost 4 year old boy who has been diagnosed with adhd and possible bipolar disorder,we started at 1mg of intuniv and just bumped him up to 2 mg on monday..since taking this med he has been waking up around 2-3 am and staying up the rest of the night and not sleeping!he was getting sleepy at school but that has worn down.i am concerned that he is up all night,he also takes melatonin before bed!his anxiety is throgh the roof,we are scheduled to see a psychiatrist this month.a pediatric neurologist has diagnosed him with these ..any thoughts on the situation?disorders

Emily said...

My son is 8 and he was diagnosed at 6. He has been living with me since 2009, when he came here he was on the 18mg concerta. We have gradually increased it to the present dose of 54mg. Its seems when the dose is increased he does great for a while then then meds tapers off and he goes back to the non-medicated little boy. He is very distructive and impulsive. Has anyone else found that that has been a problem and what did you do about it? We just started the intuniv yesterday of 1mg at night pres. by his phyciatrist. He wants him to be tested by a psycologist to make sure the adhd diagnosis was correct and to rule out mood disorder. What kind of testing do they do?

Megan said...

Emily, getting the right diagnosis is so important. He may have only ADHD but it sounds like a thorough workup is needed. The testing involves a whole lot of paperwork, from you and a teacher, and a computer test, usually. There is no blood test for Bipolar Disorder, unfortunately. Go to the CABF website and find the checklist for bp disorder in kids and see how much he fits it. My sister is going through the same thing!

des *8* said...

I am so happy to have found this site
I have a 8 year old daughter diagnosed with bi-polar

des *8* said...

Her doctor has recently told me to look ino intuniv to see if we want to try it.
It was years before they would listen to me that something was wrong ....
I also have similar issue that the med is "supposed " to last 24 hours as many on her do not !

Megan said...

Hi DES 8! I am always happy to hear that people are glad to find a blog they can relate to and get info from to help them. Welcome!

Megan said...

Just a note: we have added another ADHD med to the Intuniv because we noticed that Mae is calmer but not as focused as she needs to be. The doc said this was common with Intuniv. She is taking Vyvanse, 20mg, now.

cinnert73 said...

Hi ,I came across this blog looking for information about Intuniv. I am glad you have started this . My daughter has been on Vyvanse for almost 2 years now and we have just added Intuniv ( which we will start when school is out)I enjoyed reading all the info every1 has to offer and will be back often. Thank you

mich said...

My ds is 8 and is on Risperdal 3 mg and prozac 10 mg and was on tenex 3 mg but just switched to intuniv. I was glad to find everyones comments. My ds has ADHD with Aspergers, Tourettes and OCD anxiety. I am constantly worried about him and these meds. He has gained 20 lbs on risperdal but it has helped his agression and tantrums. We keep having to up his meds. We see a psychiatrist every month. Also he sees a psychologist weekly. He behaviors and impulse are the worst. He was recently disinhibited on 15 mg prozac and was doing and saying bad things.

Megan said...

Mich--I am concerned that your son maybe bipolar as well. That would not be unusual for a child with Aspergers or ADHD. Unfortunately these conditions show up as comorbid disorders. A child who becomes disinhibited on a stimulant or an antidepressant should definitely be looked at for bipolar disorder. This is frequently how parents find out their young child is bipolar: they are diagnosed with ADHD or OCD, etc, and are put on stimulants of antidepressants, and then begin to get far worse than better, acting very out of control and manic. Please talk to your doc about this. Anitdepressants are really bad for bp kids, leading to greater instability, even if combined with a mood stabilizer.

mich said...

I did wonder if he could be bipolar. Why would the psychiatrist be hesitant to label him? We have been through so many Dr's and medications. The psychiatrist at the children's hospital has seen us every month for two years after the neurologist was having a hard time with his meds. How hard is it to get the bipolar diagnosis? We have been seeing Dr's his whole life and it seems his diagnosis just keeps changing and growing. I wonder if my husband's family has bipolar and just don't tell. They are really difficult people to get along with and they act so passive agressive and defensive. They don't want to know anything that is wrong wih my son. There are alot of family secrets and nobody talks or gets along.

Megan said...

Mich, Some doctors are really slow to diagnose a child with bipolar disorder because maybe they don't fully agree that a child could be bipolar, or you may need a second or third opinion if you feel your son is not getting better seeing just this psychiatrist. I believe an accurate diagnosis is so important that I tell people to be willing to travel a long distance if necessary to see the best in the country, like Dr. Papolos himself. Have you seen the bipolar checklist in his book or on the CABF website? We had to keep looking at the differences between ADHD and Early Onset Bipolar Disorder to assure ourselves that our youngest was NOT bipolar. Our 14 year old fit the entire list at age 7. If there is a family history of mental illness (even if not acknowledged, like in my family) than I woudl be very suspicious.

mich said...

I feel we have already been to way too many Dr's! Initially my son was thought to have PANDAS as his tics and behaviors and OCD came on after strep throat and then his behaviors increased each time he had fevers and strep then got better with each episode. But then eventually they never went away. So I took him to specialist in Florida, Maryland, Michigan, and spoke to Dr's and ran tests all over the country. We had neurologists saying Tourettes, ADHD, OCD, then psychiatrists saying Aspergers, spectrum disorder, speech path saying no to spectrum disorder, OT saying sensory integration, visual motor processing disorder. He has seen over twenty Dr's and they all disagree. The psychiatrist we see now gives it no label but treats the symptoms. He goes to the psychologist weekly, psychiatrist monthly, and OT and social group weekly. It is so much and I personally think Dr's don't know! Plus I wonder wha the impact of seeing so many Dr's will be longterm.
My husband's mom was abandoned by her parents and had a terrible childhood they don't speak of, my husband is really quiet and introverted maybe on the spectrum HF, his family doesn't get along and has major disfunction and he plays right into it never discussing anything they do to cause issues.

Megan said...

Mich--I am so sorry you have gone through so much with your son and received so many different diagnoses! How frustrating! At this point, treating the symptoms is probably the best you can do, but I would still be wondering about biplolar disorder. Also, has he been tested for food allergies? I know that in rare cases a gluten allergy, or milk, or whatever, can bring on abnormal psychiatric behaviors. Hang in there! You are doing so much for him.

mommee2-3 said...

Our son has been diagnosed with ADHD/ODD and mood disorder. He also has a neurological sleep disorder (medicated). He has responded badly to most mood stabilizers b/c they lessen the effectiveness of the neurological sleep med. Bad reactions to most ADHD meds. Strattera damaged his liver the other make him so irritable he's unmanageable. He takes Bupropion for ADHD (which may help with any depression/anxiety) but doesn't do enough for ADHD symptoms. He also takes Lithium. About 10 days ago he started Intuniv to help with the hyper/impulsive behaviors (1mg at night). It has been 10 days of hell. He is so irritable and out of control at home and at school. His teacher just called (he's in a special class) and said he is NOT himself and they are concerned. Given that they are well trained and not given to calling me about the least little thing, I'm think it might be meds. I see irritability is a potential side effect, but is it something that may just be during the intro and lessen? I hate to give up when we have so few options if there's a chance that this will pass. I've left a message for his doctor, but I'd really like to hear from a parent who's gone through this. I don't trust myself. My gut says stop, but my head questions.... Thanks, Dianna

Megan said...

Diana,

I would probably just stop the Intuniv, honestly. If something makes a kid's behavior significantly worse, not better, and you've given it over a week, and there isn't a lot more titration ahead, I think it simply isn't the right drug. If it were only sleepiness, I would say hang in there. We tried Geodon for our daughter for about a week and a half and it was so bad, we switched her to Abilify which worked great. How old is your son? With the mood disorder diagnosis, and the ADHD, and the fact he is on Lithium, I would be very cautious about ANY stimulant for ADHD and ANY antidepressant, even Welbutrin. The reason is that if he is actually bipolar (which sounds like he may be) the stimulants and antidepressants would be very destabilizing, and the mood stabilizers wouldn't even counteract that well. This is what we have found after seven years of med trials, and the experience of other parents of bp kids. The med protocol for a kid with early onset bipolar disorder (which includes ADHD symptoms, ODD symptoms, and major sleep disturbances) is usually one or two mood stabilizers and an atypical antipsychotic. Lithium plus something like Trileptal, and something like Abilify, or Seroquel or Zyprexa would be typical. You may want to get a second opinion on his meds from a different psychiatrist. Hang in there!!

SLH said...

My daughter is 17 and was diagnosed with ADHD at 7 and bipolar at 14. She has been on many combinations of meds and honestly Abilify worked fantastic but she gained 20-lbs in less than 1-year! She refuses to take it so we are still trying to find a good fit again. Her dr put her on Intuniv 3mg and it seems ok and took her off Saphris and put her on Geodon which she will start taking today. Lets hope this works. She is rude, nasty and mean and it is frustrating for her and our family.

Megan said...

Geodon does work for many kids. I hate the weight gain aspect of so many of these drugs. I don't know exactly what is helping our dd to stay slim, even though she is on 400mg of Seroquel, but we do know that she dropped the 20 lbs she gained initially after starting Amantadine. This might be acting as an appetite suppressant, although she does seem to eat all the time. Because of sports and wanting to stay competitive, she is conscious of eating good foods, so she does choose a lot of fruit and smoothies over sweets nowadays, which is a big change. I hope that your dd will stabilize soon! The nastiness can be so discouraging.

The Spinks-Prihoda Family said...

Hi Megan,

I do not get online much to just browse blogs and I guess today was a fluke when I searched intuniv it brought your blog up as number one. I was actually on the phone with Social Security to start disability work, because we are low income family. My son Matthew is bipolar and has been diagnosed as of Aug 2008 but was showing signs in 06 as well. He is now seven. You are the first person I have seen or heard of saying my child had it as young as seven and showed signs prior. I will read more to keep up with the journey, but if you have time could you email me lyssaprihoda1107@live.com. I would really love a penpal and someone who has been going through it before. I struggle so much with my son and my daughter lindsey who is 5 and who was just diagnosed with aspergers syndrome March 2010 but has been issues since birth really. I am also a mom of four my youngest are 2 and 11mths.

I thank you for the blog already and have just read the introduction.

Megan said...

Sphinks-Prihoda--I am glad you found my blog. Having a bipolar child can be one of the scariest, frustrating, lonely roads you can be on. I will gladly be available for you. I always enjoy hearing about another parent's journey. Have you checked out the Child and Adolescent Bipolar Foundation website? They are also a great source for online support groups. I have learned so much from the other parents in my group. Sometimes it is hard to read about the terrible struggles some of the other kids have because you wonder if your child might end up there too, but there are a lot of success stories, not without many bumps in the road of course. I am quite familiar with Aspergers Syndrome as two of my nephews have it. I read once of a conncection between bipolar disorder and Aspergers in families. I have 15 nieces and nephews and quite a few have neurological issues. Take care! I will send you my email.

Tyson said...

I have a 13 year old that was diagnosed with ADD when he was 11. He was put on Adderall XR. After taking the adderall for about a year he started having facial tics. His dr took him off the adderall and put him on Intuniv. He has had really good success with the Intuniv. We really like that it is a non stimulant and he doesn't have a drastic come down at the end of the day. I have told many people I know who have kids that take stimulant ADHD meds to ask their dr about the Intuniv.

Ginger said...

I have a 7 year old daughter just starting intuniv. she's on 3 mg now and takes it in the evening. all she does is sleep. my question is.... how much time do i wait before i decide this dose is too strong?

Megan said...

Hi Ginger! Are you seeing positive results during the day yet? I would give it three weeks if you can wait that long. Is she taking any other meds? Sometimes intuniv works best in conjunction with a stimulant which could solve the sleepy problem.

Ginger said...

Hi Megan, 3 weeks? that's a long time. I was trying to get all this figured out before school started again in september. The reason for starting intuniv is to get her off the stimulant. She has experienced some heart problems with the stimulant... I thought maybe trying to give her 2mgs in the evening and 1mg in the a.m. might make a difference. What do you think?

Megan said...

Heart problems would definitely make me stop all stimulants! I think trying the split dose would be a great option. Getting this all straightened out before school starts would be very nice. I understand that one completely. I have thought more than once that if I couldn't get my daughter on an ADHD med with great success I would just load her up with fish oil because my husband can't take stimulants either, but if he takes a good dose of fish oil in the am, he says it has the same effect as ADHD meds in terms of being much more able to focus. I think GNC sells a fish oil for kids that comes in tiny soft capsules. I have heard that it is necessary to take about 3000 mg a day to get the desired effect, but I am sure a lower dose can't hurt either. Has anyone out there tried focus factor with their kids?

ann said...

My doctor started my son out at 2 mg. and all he did was sleep too. He is 9 years old and only 50 lbs., it was too strong for him. I had to start him at 1 mg. and then work him up to 2mg. this process took about 6 weeks. I give my son his intuniv at 5pm and then it does not have the effect of making him too tired. You may fine he may need 1mg. at noon the next day. I would start him at a lower dose at least for a few weeks and see if this helps as he gets adjusted to the medication. Every child handles medication in different ways. Make sure to check with your doctor before you change any of your childs medication. Hope this helps.
Ann

Megan said...

Thanks Ann, for your input. Great advice!

D said...

My husband forwarded me the name of Intuniv to research giving to both our kids--one is bi-polar with some ADD characteristics, and the other is ADHD. To my surprise I found this blog where the postings echo what I have been living with for 10 years with my children. For us, the guanfacine was tried in the form of Tenex for the bi-polar child, who we thought at first was just ODD. It worked ok for about one month, then my younger son's behavior deteriorated back to what it was for which we were seeking treatment. I never thought to try it for my older son and need to look into it. Very grateful to find this blog--probably the first one I will follow--it just mirrors what my husband, boys and I live through each day.

Megan said...

Hi D. I am glad you found this blog too. I hope it will be helpful to you as you raise your challenging kids. We all need each other to know that WE are not crazy (even if feel we are sometimes). Intuniv has worked well for our ADHD daughter, but we did add Vyvanse to the mix as well.

chicagomomof2 said...

Intuniv just takes lots of time because it's so sedating. Our son doesn't do well on stimulants either so it was well worth it, but we creeped up super slowly (probably 3 months to get to the 3 mg dose he's on now.). We did see benefits on smaller dose by the way.

cinnert73 said...

I am really behind on reading but have seen comments about tenex.Have you switched to intuniv instead of tenex as they are the same med one is just time released. If so has it worked any better. My daughter is on Vyvanse and we added intuniv both are costly,when I found out tenex is same as intuniv was thinking of talking to DR to see about switching but would like advice from other parents. The intuniv did not make her sleepy and she has put on weight since she started taking.please any advice thanks

Megan said...

I don't have personal experience with Tenex. I imagine that it wouldn't last as long as Intuniv, but with the Vyvanse added, maybe that wouldn't be a big problem. Has anyone reading this tried Tenex?

chicagomomof2 said...

Our Then 9 year old son got Tenex (inappropriately I now understand) as an "as needed" short-acting calming medication when he was in a particularly difficult period emotionally. It was indeed short acting and "knocked him out" (foggy sleepy at whatever the dose was - I don't recall) for 4 -6 hrs. If you were to use it for attention, I think you'd need really consistent timing to give it to a child (as in, give it to the child just 30 mins before school).

Megan said...

Thanks for the info Chicagomom!

mich said...

My son who is 8 was on tenex for about 6 months before switching to intuniv. The tenex needed to be taken 3 times a day for him and he was on 1mg doses 3 times daily. It worked but it also would ware off. The intuniv is given one time a day and last for around 24 hours. They are the same meds though. The intuniv does not have a generic and is very costly. The tenex was a generic guanfacine and was much cheaper. Tenex is often given for kids with tics and ADHD and is a blood pressure med. My son has tics and typical stimulants do not work for him. His tics and behaviors get worse. He is more calm on the intuniv 3 mg and is less impulsive and less aggressive. His tics are still there and his compulsions so we are also using other meds with imtuniv such as prozac and risperdal. I was told by the psychiarist not to cut the intuniv because the capsule shuld not be disturbed. It is slow acting and continues to be absobed and used by the body for 24 hrs.

Andrea said...

My 180 pd. 5'10" son is on a very low dose of Risperdal and Lexapro as well as pure fish oil and recently added gaba supplements. During school he takes Adderall. We've discovered that he cannot take extended tablets as they make him "crazy". He's been taking this combination of meds, changing the stimulant from time to time,(minus the Gaba) since he was 10 years old. We've had our ups and downs His psychiatrist wishes for him to try intuniv. Does anyone have any experience with intuniv and risperdal. I'd like to wean him off the risperdal and stimulants eventually. He is a happy go lucky kid, but his main problems are talking loudly, a lot and REALLY fast. He gets "stuck in his own thoughts" and is very argumentative. He also has a tendency to talk in circles. His thought process is really quite unique. Has anyone had experience with intuniv helping these behaviors?

ktrigsted said...

Help! Daughter,6 years old recently diagnosed with ADHD Combined Type and ODD. We were given Intuniv however, she was unable to stay awake. She laid on the sofa for 2 days, napping and unable to play. Her eyes did not look right as well and I am not sure this is the drug for her. Is this sleepiness something that will pass? I can't see sending her to school if she cannot stay awake. Any help? Suggestions? I am open for any information. Thanks

ann said...

Intuniv does cause sleepiness until their body gets adjusted to the medication. How many mg. is she taking. You may need to adjust the dosage. Please check with your doctor first. My son started on one mg. and we slowly worked it up, it took about month.

Ann

Megan said...

Ktrigsted--I am sorry that your daughter is reacting like this, but how long has she been on the Intuniv and how fast have you gone up on the dose? I found that dividing the dose was helpful. Also, with the ADHD diagnosis and the ODD I would be careful of stimulants in the future. Has early onset bipolar disorder been ruled out? What other meds has she been on?

kristen said...

Thanks Ann and Megan
We tried a stimulant first, Focalin. At this point the Focalin is on hold until school starts and if it is needed. We did not notice a big change in her behavior/emotions/tantrums or the outbursts at home so her doctor decided to try Intuniv. We started her at 1mg only for 2 days as we could not believe what it was doing to her. We can handle her being sleepy but she complained about not being able to move or walk up stairs and even stated "How can I go to school if I have no energy to walk". She looked like a zombie and stayed on the couch all day. We were not told if these symptons would get better if continued to use but I know I would have had a hard time increasing her dose to 2 mg based on the effects of 1mg. We received the starter kit - 1 week at 1mg and then increase to 2mg on the second week. Is this normal and would it have gotten better? Thanks

ann said...

I have had experience with using intuniv, and resperol. My son is 9 years old, he has been on intuniv for Bipolar, Ocd,and Opppositinal Defiance. The intuniv and resperdol has helped him a great deal he is not as argumental or aggressive. He also takes amantadine to help control the rages. I have had good results with these meds. My teenager takes vyanse for agression and adhd and has had a lot of success with it. He is 16, 200 lbs. and 6 feet tall. He takes 70 mg. a day and it lasts 12 hours. Hope this helps.

Ann

ann said...

It takes longer than one week, one month or possible six. My experience with focalin is that it causes agression and at times can make it worse. You might want to ask your doctor about vyanse.

Ann

kristen said...

Thanks for the information Ann. My daughter is 6 and weighs 48 lbs.
I will inquire about the vyanse. Do you think her reaction to the Intuniv was normal? Her typical summer day is spent in active play and to have her on the couch all day seems a little excessive. Thanks

ann said...

Medicene effect every child differently. My son would fall asleep in the middle of the day for about 3 hours, it did occur during school. His teacher was very understanding. He did not get used the first dosage of one mg. until about six to 8 weeks. Sleeping all day seems like it might be an unusual reaction. I hope your doctor gives you some other options that help.

Ann

Megan said...

Are you giving the 1mg of Intuniv at night or in the daytime? It is supposed to last 24 hours, so if you gave it at night instead of in the am I wonder if that would help? We ended up doing Intuniv at night and Vyvanse in the morning.

mich said...

Has anyone given 4 mg of Intuniv daily? In the beginning 3mg worked fine. Then after two months it stopped working as well. Impulse and opposition is bad again. He is on Prozac for anxiety and his anxiety is through the roof. Last month we upped his prozac from 10 to 12 mg. He also is on Riserdal for the meltdowns and anger. We had lowered Risperdal from 3 mg to 2 mg when the behaviors improved on Intuniv last month. His tics have increased now and he now has a head tic and toe, finger tics, and is irritable. The psych said we could up any of his meds. His weight has improved with the lowered risperdal, his anxiety is still bad. I filled a prescription fr 90 days of the 3mg of intuniv recently. It is really expensive. I was told not to split intuniv pills. Any suggestions on meds? I hate to scrap those 3mg intuniv pills.

marie said...

Our son has been on all of the stimulants possible. bad side effect. melt downs, violent tamtums, not sleeping lost so much weight he weighed 32 pounds in 2nd grade. pill foor sleep, pill for this and that. Finally got a Dr that had us try Intuniv. Most insurance will not pay for the formulary but will genericI am here to tell you it is different and you will have different outcome. Our insurance required us to get prior authorization for non generic. He was tired at first but we where able to see him progress. he grew , he sept on his own, he became social. with only have to use the respidal on ocassion and most melt downs are due to him being low on protein. we are finding he needs more protein in the am and evenings and a snack at school it seems to mellow him out. Good luck to everyone and remember, Day by day and ask andseek new remedies.

marie said...

Yes contuine the respidal. Both of our Dr's have said that they build up in their system so continue to give them to the child. We use the melt aways.easy to carry. and the Intuniv has been ablessing. He lseeps without any trouble. It takes a while but it works great. We have notice sometimes the melt downs are actually low blood sugar, as soon as he has a snack or some protein he good. We make sure In school that he is allowed to have the snack. please forgive my spelling. Sometimes even with medicine and food he needs to be held accountable for his behavior.

mich said...

Marie how much Intuniv and how much Risperdal? Does he have tics or anxiety?

erin said...

My son is 6 1/2 yrs old and has down syndrom and has been recently diagnosed w\OCD, PDD and ADHD. He has been on different med since he was 2. Focalin, Tenex, Clonodine and we are now on Intuniv(3mg) and Resperidal(1.50mg) all in the am. The Intuniv is time released. He has been hospitalized 3 times since June for dehydration and low blood pressure and heart rate. Has anyone had these side affects from these meds? I have decided to take him off all med b\c can't find what is causing this? He is having a MRI of the putuitary gland on Sept 20. any thoughts?

Erin L.
NOLA

mich said...

We are on Risperdal and Intuniv and Prozac and have never had any of those symptoms. I would be very concerned if it was heart and blood pressure related. See if the symptoms improve when off the meds. Good luck with the MRI.

Megan said...

Erin-I am so sorry that you are going through so much with your son. You must be so frustrated and tired. I agree with Mich that you are right to suspect one of these medications. Intuniv does lower blood pressure so I would eliminate that first (obviously ask the doctor though). It sounds as though you may need to go back to trying one drug first, and then add others in after you see which one is causing the problems. Has he been on the Intuniv since June? My dd has been in the ER several times for dehydration, but it was related to the Lithium and being in the heat too. Let me know how he does!

Stpetedave said...

Hi Megan, great blog thanks for sharing. Our 4 yr old adopted son was diagnosed at an early age with PDD NOS, and just recently with ADHD. Because of sleeping issues in conjunction with the ADHD, he's only been taking clonidine. The clonidine when administered at night does the trick, at least for about 5 hours of sleep. His behavior and outbursts (fits) have been terrible for the last 8 months. His neurologist had us try Focalin and it left him in a zombie state so we discontinued it. Just wondering if you had ever tried Clonidine and what your thoughts were on it? After a visit to the neurologist today I was handed a brochure for intuniv. Our biggest fear is that if we take clonidine out of the equation we'll be back to square one with our original problem, his lack of sleep.

Megan said...

We have tried Clonidine with our youngest Mae to help her sleep at night when she began taking stimulants. It worked well. The Intuniv is a blood-pressure lowering drug as well, so I am not sure that using them together is a good idea, but you will have to ask your doctor. Most people have found that Intuniv makes their kids pretty sleepy, and many give it at night instead of in the am. I hope this helps a little!

kris said...

My son just started taking intuniv, still 1mg at night. He diagosed with ADHD at the age of three and has been on several medications. Currently he is on 40mg of medadte, he still seems to be on "go fast" all the time, talking nonstop and still having trouble focusing and being still. We just started seeing a neurologist, I'm hopefull he will help. TJ is 11 yrs old, 6th grade. Any suggestions on how to help him study and try to stay organized for all his classes? Also he has a 504 program, but it seems like the school doesn't abide by it, any help on that?

Megan said...

Hi Kris. I am glad your son is seeing a neurologist, good move. As far as helping him to be calmer and more focused, Intuniv is great and seems to work best at about 3mg, or 4mg. Some kids can't tolerate the sleepiness at the higher doses. But many get over that phase too with long term use. I am wondering if your son has any other diagnoses besides ADHD? Have any of the stimulants seem to have made him worse?

As far as the 504 goes, I don't have much experience with them. Our dd did have an IEP at two different schools, and one, a therapeutic school, followed it and the other one, a public school, did not. I know that Wrightslaw requires a school to offer accommodations if a child has an IEP, but I am not sure about the 504. Friends of mine have had to put their concerns in writing to the school and school board in order to get real action. They are required by law to respond to a written request, fast. Different schools and teachers abide by the law to varying degrees, unfortunately. Perhaps your son could be switched to a different school if your school does not follow the 504. Also, find out if there is an educational advocate in your area who can go to bat for you. You can look up Educational Advocacy on my website under Great Resources. I will also post a link to Wrightslaw.

Hang in there! Don't stop pursuing the right med mix for your kid!!

lynne said...

Hi Everyone. So happy to have found this site. My ds began Intuniv three weeks ago. He started on the 3mg dose with three one mg tablets. He complained of feeling dizzy and weak so the doc put him on 1 2mg tablet. The side effects disappeared but we did not get the same (wonderful) effect as with the three. Has anyone had difficulty using the 1 mg tablets in various combinations? Do the 2 and 3 mg tablets dispense better through the day with less side effects? I am trying to get him to try the three again but he is so worried about feeling that way again. How long have you found that it takes the kids to get used to the dose?
Thanks so much!
Lynne

Megan said...

Hi Lynne! I am surprised the doc started out with the 3mg dose instead of working slowly up from 1mg the first week, 2 the next, then 3, etc. He did it kind of backwards in my opinion. Many seem to have the most success with the 3 to 4mg dose in terms of seeing a difference in behavior, but the higher doses do make many kids sleepy, so try giving it at night before bed. This med reduces blood pressure, so the dizziness is likelhy from introducing the 3mg med so fast, without titrating up. Hope this helps!

Nichole said...

Hello Megan, my daughter,7 is ADHD and on Vyvanse. The doctor gave samples for Intuniv but her insurance will not cover the $220 medication and thats to expensive for me. Do you know how I can get the intuniv cheaper or another non-stimulant medication? Thanks, Nichole

Megan said...

Insurance is such a necessary evil isn't it? We need health insurance but then it tries to dictate to us what we need or our children need by refusing to pay for certain medications! Nicole, you may want to contact the company that makes Intuniv and see if they have a program to get their meds to people who need them and can't afford them. Also, Intuniv is closely related to Tenex, so you may want to ask for Tenex if you absolutely can't get Intuniv, even though it may not work as well. Have you tried Calm PRT for your child? t is an all natural supplement you can get online or in certain vitamin stores. It reduces cortisol levels and the adrenaline that can make people irritable. Also fish oil and krill oil can help significantly with mood, anger, etc., when taken in large enough doses. Hang in there! I know your struggle well! Thank you for reading. I hope this helps a little.

mich said...

I was wondering what is the best time to give intuniv? My son is taking 4 mg a day. I have a 3 mg and a 1 mg tablet. He has been tired at school and fallen asleep sometimes. He has been on this dose since Aug. I was giving the 4 mg after school at 4 Pm. Now I am giving 3 mg after school and 1 mg before bed. What have others found works well for times to give intuniv? He also takes risperdal 3 times a day 1 mg each at 8, 4 and 8 and prozac once a day 10 mg.

Megan said...

Hi Mich. Have you tried giving him 3mg at night and then 1mg in the morning? This med is supposed to last 24 hours, and since it does make kids sleepy, many will give most of the dose at night and give a small dose in the am. Let me know if this works for you!

samantha said...

was wondering your oppinion: how long should I wait to up the dose my son just started the med intuniv and it has only been two days he is only on 1mg he is Out of control and has even been sent home from school today because of his behavior. Should I see a effect from the med already? or is it one that takes 2 weeks? He was on concerta prior (36mg) it did not seam to help to much but a little better then what he is now. on the Intuniv.

Elizabeth said...

Hi. I just found your site! I am so frustrated and not sure what to do or where to go. My son is 10 years old. As a child, he was the happiest child- but always on GO... By the time he got into second grade, when the work got harder, his teachers started complaining that he was "self-distracted"... but also noted that they thought (on a good note!) that he was "obedient, witty, hard working and thoughtful." By 4th grade, we had tears every night. From HIS perspective kids were mean to him and people were always not being nice... But, he was also frustrated that he couldn't understand why everyone else finished before him... Ability tests show him ranging in the 63rd to 84th percentile (quantitative vs. nonverbal areas)... Acheivement much lower at the 25th percentile(indicative of a learning disability). He is getting (with ALOT of frustration, HOURS of work and effort) A's, B's and C's- with the occasional D. His psychiatrist labeled him ADHD based on testing. She tried Vyvanse, but it sent his blood pressure through the roof. We tried Focalin- but it made him MEAN. (We tried to balance this with Prozac- but it was too much.) We tried Concerta, but it gave him headaches everyday for a month straight! Now we have tried Intunive. We had moved up to 3 mg- but he acted so "stoned" on it... We moved down to 2mg... He acts tired, irritable, and sad about almost everything. I didn't give him the Intunive today, and he seems happier, but still unfocused... His moods are somewhat dramatic- either very happy or sad... I am afraid his psychiatrist is getting tired of adjusting and feels the intunive is working... and it DOES help him get work done- but I feel I am losing him emotionally... I am a special needs teacher and wonder if I am analyzing things too much... It is hard when my two other children, ages 9 and 7 find school easy and have no apparent difficulties to the older one... What do I do? I really need advice and am sending out a prayer!
Thanks!

Megan said...

Samantha--I am so sorry that you are having such trouble with your son right now. It usually does take a week at a time titrating up to the usually effective dose of 3 or 4mg. Most kids need the higher doses before a big difference is noted. If it makes him too sleepy try giving it at night. I wouldn't give him the higher dose too soon because this drug does lower blood pressure and if you give him too much too soon it might be deleterious. One of our dd psychiatrists used to titrate up every five days for a new drug instead of waiting seven and it seemed fine, but ask your doc to be sure. I found that my daughter needed Vyvanse in addition to the Intuniv to really focus well. Apparently many parents are finding Intuniv to work best at calming down the hyperactive child but not necessarily highly effective with the focusing issues. Let me know how he does!

Megan said...

Hi Elizabeth! It is so frustrating when our children are not succeeding in school, and it is obvious that there is something missing from the picture. Focalin made my oldest mean too. Intuniv is better for calming the hyperactive, irritable child, in my opinion, than helping to solve focusing issues. What kind of testing did the psychiatrist do? Was it a full battery that took 2 to 3 hours? I know being a special ed teacher that you know all about different kinds of testing. Is dyslexia a possible issue? How about eye sight? One of my kids was in the fifth grade before we realized she hated reading because she was farsighted.

As far as drug trials go, there are still a few other ADHD meds out there to try (get's wearisome, I know!) If you try all of the others and nothing is good, also consider fish or krill oils which have great benefits for the brain! I make my kids take them, and my husband is ADHD and if he skips a day, he says he gets major brain fog.

Also there is a company that does brain training, called Learning RX. You may want to look them up online. Probably a global approach to your son's difficulties is needed, a combination of meds, supplements (Focus Factor?), and therapies.

Hang in there! Sometimes this journey seems so long but we have to keep trying to find the answers, as I know you are! God bless you!

Samantha said...

Thank you so much! This is all so new to us. it is just so hard to see him this way and know he can not control anything he is doing on his own. I am going to give his Doctor a call and ask about the other med to help him focas. The teacher said today she struggled to get him to even sit in his seat at all. I will update you as soon as we have a plan in motion. I am so glad I found someone to relate to it helps a lot.

Strainboys mama said...

Megan, I'm a lot like the rest on here who have found your blog by searching Intuniv. My oldest was just given Intuniv to try along with taking focalin and zoloft. So far the Intuniv seems to be helping. He was diagnosed with bipolar along with depression at age 8 after first being diagnosed as ADHD by his pediatrician. He was first put on vyvanse. This seemed to be great at first. He suddenly could focus, sit down, although he was began doing some interesting things. The first day he started drawing rows of dots and just counting. Anyway after about 2 months later after losing 10 pds, he became very aggressive. After being diagnosed with bipolar and seeing a psychiatrist, the zoloft really helped, and up until now, I've had rare problems. Now we see a new psychiatrist, and he's been given the computerized test showing ADHD, and this psych is a little hesitant to just say he is bipolar. Although shortly after being on the focalin he had him start to help the ADHD, he's becoming defiant, and verball aggressive and more threatening. This is why the psych has added Intuniv. I'm just worried that he can't take being on stimulants which is what my first psychiatrist said. What are your thoughts? Could you also pm me? Thanks and sorry so long. This is a great blog! strainmary@sbcglobal.net

Megan said...

Hi there! I am so sorry that you are having trouble finding the right meds for your son. If he is truly bipolar, taking a stimulant like Vyvanse or Focalin without a mood stablizer on board like Depakote, or Lithium or Trileptal, etc, could be dangerous. I don't understand docs that prescribe these ADHD meds with bipolar as a distinct possibility. Watch him carefully because mania could escalate quickly. Take him off immediately if he begins to do anything risky like playing with fire, knives, running away, etc. I would push for a mood stabilizer before anything else if he were my son. Let me know what you decide!

Kristen said...

Megan,
I'm just seeing your blog for the very first time. My daughter was just diagnosed with ADHD last August. This has been really difficult. I know you completely understand what we're going through. She is on 20mg of Methylin that she takes each morning and 2mg of Intuniv which we just started about 2 months ago. She's only been on the 2mg for a couple of weeks. She has those explosive moments that you had mentioned in one of your posts. It can be something so silly to anyone else but she'll become so angry. She'll tell us to go away and won't even hear what's being said. She's doing excellent at school so the Methylin is working there. It's at home that we have the major issues. This is with both medications. The evenings and weekends are difficult at times. Did splitting the Intuniv help with that? My husband and I enjoy the bedtime benefits of Intuniv. She's able to wind down better. I appreciate any input you may have.

momof3 said...

I am so glad I stumbled across this! We are in the early stages of acquiring a correct diagnosis for our 11 yr old son. He too has sensory issues (saw an OT at early age, with reduced language skills)... then continued with OT (I was a SLP, so I realized the importance of therapy)... then he "repeated" Kindergarten... then the teachers quietly suggested he might have ADD/ADHD... we had him tested, and nope, he didn't "qualify"... then he had Strep so badly... he was starting to look like he had PANDAS... we saw a specialist... then tonsils, out... then more testing, more therapy (now we are seeking psychologist), and the 1st attempt at medicine. He could not tolerate the meds... then another therapist. More notes from teachers, more teachers meetings... now, he is on Intuniv, and an anti-depressant. I feel like we are closer... but still don't have the whole picture. Our current psychologist recommended Bi-polar Disorder type II. I wasn't actually as heartbroken, as I was when the idea that our son might be "depressed" was first thrown out! Now, we just want an answer, a plan... We meet with the psychiatrist next week... I thought Intuniv, and other ADD/ADHD meds AND anti-depressants were NOT GOOD with children with Bi-polar?? He is such a challenge... I can only pray we are being led in the correct direction. Any thoughts? I am reading a book on children with bi-polar, and it suggests Lithium... this seems so severe... our goal is to help him, but also in the least invasive way.... would love your feedback. Also, do you belong to a support group? I would love to seek one out.. my husband and I have kept all this so quiet... just wondering... thanks for your input!

mich said...

We use 2 mg in am and 2 mg in the pm of intuniv for adhd and odd, He also takes risperdal 4mg a day for the anger and moods 1.5am,1.5 pm, 1 before bed, he takes 15 mg og Prozac soon to be 20 for the OCD and anxiety. Sounds like yours with the strep related pandas. good luck. We have a great psychiatrist and the meds are the most important part to treat symptoms not the diagnosis put on a kid!

roz said...

Nice to know that there are many more families out there like mine. Son has no motivation, never wants to go to functions, becoming reclusive, embarrased he will have an episode of rage in front of family...so we stay home, cancel events. It is so tough listening to folks brag about their childrens accomplishments...an accomplishmnet for me is just having my son get out of bed and be alive. I just hope intuniv is the answer, has only been on it 3 days, but my son is in a fog and terribly upset and depressed about it.

mich said...

We added Strattera and are now up to 40 mg a day. He takes it in the am and he is the best he has been, so now he is on 40 mg of risperdal and 40 mg of Prozac and 4 mg intuniv. It is helping. We give klonipin as needed. He is much happier now! The school is going better, and he has less explosive behaviors so we are happier too!

Mandy said...

Hi! My son is 11 and diagnosed bp1, adhd. He was diagnosed at age 5, so we have had a long road of med changes. We just did a med wash a few months ago. We are adding things back slowly. We are using some vitamins that are actually helping so far with mood stability, but the ADHD is out of control. We started Intuniv 2 1/2 weeks ago. He is now up to 3mg. It has calmed his body down but he is so grouchy. Not raging mad, but really really irritable. The tiredness seems to be getting better but the irritability isn't. Is this common? Do we need to give it more time or is this an indicator that we should stop? Thanks for your opinion!

Megan said...

Hi Mandy, I am glad you posted here. I am not a doctor, so I can't really give advice about Intuniv but I will say that in my opinion more than 3mg isn't going to make him less grouchy. 4mg would probably make him even more sleepy and more grouchy, as we discovered. The grouchiness may go away as he gets used to the dose in a few weeks. That seems like a long time, but as you know, some medicines can take quite a while to "settle out." Irritability can be a sign that he needs a mood stabilizer beyond the vitamins, but only you as his parent can determine if you are comfortable with it. When Caroline gets really irritable, we usually have to change or increase a mood stabilizer. Let me know how it goes!