Contemplating Intuniv

[broken thumbed hernia]

My son is 5 years old, diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified Residual / ADHD Hyperactive & Impulsive type. He is in a general education class with 20 children and a 1:1 aid who is not certified special education. I demanded the aid see a certified Special Education teacher one time a week for consultation and training, so that is a victory...

At school he is getting services of Occupational Therapist (OT), PT, and Social Skills class, run by a certified Behaviorist. He is not surviving well in this setting. Since day 1 of school he has had many hitting altercations, and trying to bite the aid, etc. A few hitting other kids, and 2 visits to the Principal's office. I am lucky it hasn't been more.

I took him into the Pediatric Neurologist, she recommended Intuniv. In the past he has tried Risperadone. It worked like a charm, but the side effects of cancer, and lactation, (even in males) leaves a great big lump in my throat, so we took him off right away.

Does anyone have advice on a child who has been on intuniv? I am curious about side affects, and about long term use.

Does anyone have a child (5 years old) who has had success treating ADHD with other medications?

Anxiously awaiting responses.

 

[shellyd67]

We started difficult child on Strattera initially and it worked somewhat but did not control his impulsiveness AT ALL !!! Then we tried Intuniv administering 1mg in the evening before bed. difficult child became letharic and fell asleep in school more than once. Then we tried giving Intuniv in the late afternoon with no resolve and lastly the morning. difficult child still was lethargic. Sleepiness is one of the biggest side effects. psychiatrist said from beginning difficult child should be on stimulant medications. We then went to Concerta 36mgs and it works fair for him, better than other medications. It is such a rollercoaster finding the right medications. I wish you luck and keep me posted. I will admit I wish I gave the Intuniv more time.....

 

[shellyd67]

i forgot to mention there is a website call raising 4 boys.com that has a whole thread about intuniv use and how kids react/side effects/success stories, etc...

 

[BusynMember]

I have a son who was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified and in my opinion medications aren't very helpful. Stimulants made my son mean and aggressive and he's not like that.
My son benefitted from a smaller class for half the day with an aid the rest of the day. He is 17 now and mianstramed, which would never have happened if he hadn't started out in Special Education. He never had any behavior problems in school (or home, really...not after age five), but he had an intolerance to crowds and loud noise. The smaller class really helped him and he got tons of attention. Now he is able to go class to class alone with no aid like the other kids. He is a junior in high school. While he is still on the autism spectrum and will need some help as an adult, he has really come a long way. He also made friends and is accepted at his school.

Good luck, whatever you decide to do.

 

[Wiped Out]

Just adding in my welcome as Intuniv is a medication my difficult child has never been on (one of the few). For my difficult child the only thing that has moderately helped difficult child's ADHD symptoms has been Clonidine. It is a primarily a blood pressure medication. Due to my difficult child's bipolar he cannot tolerate any of the stimulants used for ADHD.

Glad you found us-this place truly is a soft place to land.

 

[broken thumbed hernia]

We started difficult child on Strattera initially and it worked somewhat but did not control his impulsiveness AT ALL !!! Then we tried Intuniv administering 1mg in the evening before bed. difficult child became letharic and fell asleep in school more than once. Then we tried giving Intuniv in the late afternoon with no resolve and lastly the morning. difficult child still was lethargic. Sleepiness is one of the biggest side effects. psychiatrist said from beginning difficult child should be on stimulant medications. We then went to Concerta 36mgs and it works fair for him, better than other medications. It is such a rollercoaster finding the right medications. I wish you luck and keep me posted. I will admit I wish I gave the Intuniv more time.....

psychiatrist tells us to start him on 1 mg in the am. I am not totally sold on the idea, but all your feedback was very helpful. You didn't see any of the other side affects, and that is great. The whole low blood pressure, fainting, and breathing problem stuff scares the **** out of me. We may wait for a vacation from school and cal it a drug vacation. Since m boy has the Pervasive Developmental Disorder (PDD), I want to stay away from stimulant drugs. Thank you for writing, I feel less alone.

 

[raregem]

My son is 5 years old, diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified Residual / ADHD Hyperactive & Impulsive type. He is in a general education class with 20 children and a 1:1 aid who is not certified special education. I demanded the aid see a certified Special Education teacher one time a week for consultation and training, so that is a victory...

At school he is getting services of Occupational Therapist (OT), PT, and Social Skills class, run by a certified Behaviorist. He is not surviving well in this setting. Since day 1 of school he has had many hitting altercations, and trying to bite the aid, etc. A few hitting other kids, and 2 visits to the Principal's office. I am lucky it hasn't been more.

I took him into the Pediatric Neurologist, she recommended Intuniv. In the past he has tried Risperadone. It worked like a charm, but the side effects of cancer, and lactation, (even in males) leaves a great big lump in my throat, so we took him off right away.

Does anyone have advice on a child who has been on intuniv? I am curious about side affects, and about long term use.

Does anyone have a child (5 years old) who has had success treating ADHD with other medications?

Anxiously awaiting responses.

My gfg8 is on Intuniv in the am along with Adderol. He takes Risperdal in the evening. He has not had any side effects from the Intuniv. We started it about 4 months ago in addition to the Adderol. It seems to help him concentrate more on things (still not great though). We have tried different medications since he was 5. Medications included Vyvanse, Concerta, Focalin, Clonodine. In my opinion, the medicines work differently on each child. One child may have luck with a medication and another may not. Good Luck!

 

[jannie]

I have two boys...One chid is doing very well with it and he takes 3 mg in the morning along with 20 mg of vyvanse. My other child trialed intuniv for about 3 months and it seemed to make him worse and more irritable. It certainly worth a try. when my child was 5 years old the one medication that seemed to help was guanfacine; and intuniv is long activing guanficine.

 

[broken thumbed hernia]

I have two boys...One chid is doing very well with it and he takes 3 mg in the morning along with 20 mg of vyvanse. My other child trialed intuniv for about 3 months and it seemed to make him worse and more irritable. It certainly worth a try. when my child was 5 years old the one medication that seemed to help was guanfacine; and intuniv is long activing guanficine.

I am a teacher also, but I am talented and gifted science. At least I get a break during the day- you poor thing, you are managing Special Education during the day, and then go home to equally difficult (more difficult) at home. My heart goes out to you. you must be a caring and special person to teach Special Education all day long.

 

[TerryJ2]

Nice to meet you, brokenthumbedhernia (What a name! LOL!)
I have no experience with-that medication so I am reading this with-great interest. I see that there are as many different reactions as there are kids. Tough decision.
Just wanted to lend support.

 

[broken thumbed hernia]

Nice to meet you, brokenthumbedhernia (What a name! LOL!)
I have no experience with-that medication so I am reading this with-great interest. I see that there are as many different reactions as there are kids. Tough decision.
Just wanted to lend support.

I love your quote.

I got my umbilical hernia repair over the summer. About 2 weeks before, I hurt my hand- I don't know how, I think it might've been lifitng my 2 year old. I ahve lastd this long- 2 months later, I finally got to the md, took xrays, and it is broken. So I am still on the mend from the hernia surgery, and now I've got a broken thumb too. NICE, right?

 

[broken thumbed hernia]

Nice to meet you, brokenthumbedhernia (What a name! LOL!)
I have no experience with-that medication so I am reading this with-great interest. I see that there are as many different reactions as there are kids. Tough decision.
Just wanted to lend support.

I tried the girlfriend/wf diet. Boy is that tough- it is also expensive, and i didnt notice enough of a difference to stick with it. I wish it did help more. I don't want to HAVE to medicate my son, but I don't want him to be miserable either. I want him to like learning, and not want to bite and hit his teachers.

 

[broken thumbed hernia]

My gfg8 is on Intuniv in the am along with Adderol. He takes Risperdal in the evening. He has not had any side effects from the Intuniv. We started it about 4 months ago in addition to the Adderol. It seems to help him concentrate more on things (still not great though). We have tried different medications since he was 5. Medications included Vyvanse, Concerta, Focalin, Clonodine. In my opinion, the medicines work differently on each child. One child may have luck with a medication and another may not. Good Luck!

It is becoming clear that I am about to get on a medication rollercoaster, and yes, I am seeing that all medications work differently on all kids- So I guess I just have to try and use my intuition. I am not looking forward to possibly seeing changes in his disposition that will be negative, like increased aggression, or zombie like state. I can't know without trying.

 

[TiredSoul]

When my son was 5 and in Kindergarten (he is now 8), we started him on stimulants for his ADHD/ODD. This helped tremendously with aggression/defiance at school. It pretty much made it stop. He didn't have any problems in 1st or 2nd grade with aggression at school (ya know - it could have been attributed to better teachers in 1st and 2nd grades or his own maturity for that matter). (At home is a different story.) Now in 3rd grade he has been in one fight at school that resulted in him being suspended for the rest of the day.

We started Intuniv 1 mg 12 days ago. He takes it in the morning. He is not sleepy during the day, falls asleep easier at night, but he wakes up in the middle of the night and a couple hours earlier in the morning. He is also having bad dreams. We are supposed to increase his dose to 2mg this week, and I am not sure if it will make it worse or not. So far, I am not sure if we are seeing any benefits of the medication. I would like to take him off of stimulants eventually if we can. The medications scare me too, but without them I think he would have many more problems at school.

Good luck whatever you decide.

 

[broken thumbed hernia]

When my son was 5 and in Kindergarten (he is now 8), we started him on stimulants for his ADHD/ODD. This helped tremendously with aggression/defiance at school. It pretty much made it stop. He didn't have any problems in 1st or 2nd grade with aggression at school (ya know - it could have been attributed to better teachers in 1st and 2nd grades or his own maturity for that matter). (At home is a different story.) Now in 3rd grade he has been in one fight at school that resulted in him being suspended for the rest of the day.

We started Intuniv 1 mg 12 days ago. He takes it in the morning. He is not sleepy during the day, falls asleep easier at night, but he wakes up in the middle of the night and a couple hours earlier in the morning. He is also having bad dreams. We are supposed to increase his dose to 2mg this week, and I am not sure if it will make it worse or not. So far, I am not sure if we are seeing any benefits of the medication. I would like to take him off of stimulants eventually if we can. The medications scare me too, but without them I think he would have many more problems at school.

Good luck whatever you decide.

I just read you other post and responded before I saw your reply to me here... by the way, my name is Stacy. I am giving myself 2 weeks to decide- besides, I need a stretch of time to monitor him if we do start, so I need a break from school. For now, I am new to this site, so I need to develop my signature, and parent profile for my boy. Lots of work ahead. More later, and thank you for listening and responding.

 

[Kentwood]

I work as the Director of a private school for children diagnosed with ADHD, Aspergers, Autism and related social and communication disorders. I have seen every medication in the book used in combination with all other types of medicines. First of all there is no magic bullet of medication. Medicines do not teach social skills, organizational skills, or coping skills. They are skills that have to actually be taught - just like reading and math. Medicine does not replace parenting.

Here is what I can tell you.

1) STOP ALLOWING YOUR DOCTOR TO PRESCRIBE NON APPROVED MEDICATIONS FOR YOUR CHILDREN. If the medicaiton your child is taking has NOT been approved by the FDA for pediatric use - DO NOT ALLOW YOUR CHILD TO TAKE IT.

2) If one medication does not work, either will adding a second or third. The only children we see successfully treated are the ones on a SINGLE medicine. If you take the time to research which medicines are FDA approved for pediatric use, you will see there are limited choices (but guess what, they work). Cocktails of 2, 3, or more medicines create more problems then they solve.

3) Hardly any of the medicines prescribed in the last 5 years have been pediatrically tested or approved. Furthermore, Doctors use these medications off label (meaning not for their approved use) and that is why they are able to legally prescribe to children.

 

[TiredSoul]

I agree "Medicines do not teach social skills, organizational skills, or coping skills" however, sometimes a medication is needed in order for the child to be able to learn those skills being taught.

 

[DDD]

If my difficult child grandson was not on two medications he would not be able to adequately function. Each child is different. Of course if it is possible for a child to do well with no medications, that is ideal. on the other hand my forty years plus of experience with difficult child's (and thankfully, lol, more easy child's) Some children require medicinal remedies. Nobody wants to medicate their child so
most of us make every attempt to try environmental changes, collabrative problem solving etc. first. DDD

 

[gcvmom]

My difficult child 2 is 13 and has been taking Intuniv for almost a year now. He has bipolar disorder and ADHD. He cannot tolerate stimulant medications because they make him manic. Intuniv has helped him with his focus and concentration. It's mildly sedating, but he has more sedation from his other medications so we really don't notice it making things worse in that regard.

I'd like to remind you that the "director" who made the comments earlier in this thread about not allowing your doctor to prescribe medications that are not explicitly approved for pediatric use is NOT a doctor. A qualified pediatric and adolescent psychiatrist has to use their years of education and clinical experience in deciding which medications to prescribe their young patients. Often times it is necessary to try something "off-label" when everything else has been tried. It's up to you as the parent to ask the questions about potential side effects and weigh the pros and cons before deciding whether or not to go with your doctor's recommendation. But just because a drug is not expressly approved by the FDA for pediatric use does not mean it is inherently dangerous or useless! Anyone who suggests otherwise is misleading you.

Good luck!

 

[WearyWoman]

Hi there, and welcome!

I hope my experience can help you in some way. Our youngest boy, Bubby, age 9, has had quite severe ADHD, with symptoms since infancy. He also has an autism spectrum disorder (Pervasive Developmental Disorder (PDD) - not otherwise specified). We have tried various stimulant medications and found Concerta to be ineffective (although it works alright for our older son) and Adderall to cause severe late-day aggressiveness. The best medication we found for the ADHD is Focalin XR. It works amazingly well, but with one caveat - it seems to result in irritability in the afternoon (not as bad as Adderall, though). So, while Bubby would do very well at school throughout the day, he'd come home and experience agitation in the evening.

We've tried a lot of things, and recently our pediatrician recommended Intuniv. She has seen many children able to come off of their stimulants with the use of Intuniv. In addition, she explained that Intuniv seems to act as a mood stabilizer in children. Bubby has a marked tendency toward agitation and moodiness with his Pervasive Developmental Disorder (PDD). While it's always an ordeal to make medication changes, we decided to give it a try. At first, the Intuniv caused daytime sleepiness, but Bubby eventually adjusted. We took him off the Focalin, but found that he was super hyper without it. It was a disappointment that he couldn't come off of the Focalin, but we put him back on it, as he clearly couldn't manage without it.

With a lot of trial and error, what seems to be working quite well is a combination of Focalin XR and Intuniv. He takes just one dose of each in the morning. The Focalin helps his severe ADHD quite well, and the Intuniv has made it easier for him in the afternoons. In the afternoons, he is now happy, pleasant, and talkative, which is especially wonderful given his autism spectrum disorder. This is the best medication result we've had by far.

The Intuniv requires gradual dosage increases, and we found that 3 mg was too much and actually caused opposite effects of what we wanted, but when we reduced the Intuniv back down to 2 mg, it worked really well.

As for side effects, the Focalin does cause some appetite supression, however, Bubby does eat well later in the day. It can also cause difficulty with falling asleep, but the Intuniv seems to help that now. The Intuniv initially caused some noticeable drowsiness, but this didn't occur after a couple of weeks. And the higher dosage seemed to cause irritability.

I know it's a big decision. I've been where you are - scared and wishing my child didn't need any medications. Honestly, though, now I'm so glad we pursued it. His life and ours are so much better.

It's easy for someone else to say what you should or shouldn't do, but ultimately, your family is living with the very real effects of disruptive behaviors and the impact on quality of life for everyone involved. Many of these kids benefit from medications. Under the supervision of a qualified pediatrician or psychiatrist, it's probably worth a try. Each child is different.

I hope you find something that helps.

(((hugs)))