Hey there Kathy!  Micha has not been on intuniv, but has been on guanfacine for a long time.  It is the only thing that has helped with the hyperactivity.  She cannot be treated with stims.  Once she was fairly stable, the guanfacine rounded out the mix and has provided her with more more success at school.  She also has less meltdowns because she does not get in trouble as much for her hyperactivity and impulsivity.  How is Cody doing on it?

--

Chandra mom to
Micha 9yrs old BP with psychosis, adhd and RAD
risperdal, trileptal, depakote, guanfacine and benztropine
Braden 12 yrs old ADHD, anxiety
adderall

Hey Chandra!  He is not doing too well.  He's on 4 mg now but it is spring break.  School did not go well last week.  It doesn't seem to be helping with impulsivity.  He seems more depressed but is somewhat aggressive at school too.  Oh, it is making him sooo sleepy that we let him sleep in the mornings so he is tardy almost every day.  His teacher was worried the first time he went to sleep at school so rather than risking CPS getting involved, we are keeping him home for now.  CPS may wind up in the middle of it anyway.  He has taken naps at home the last two days - that is unheard of!

I did mess up with his Seroquel and he was my Cody again for two weeks until I figured out what I had done.  So, that will probably be the next step.  That was scary but was an Aha for 2 weeks :)  I was so hoping it was the Intuniv helping. 

It's great to hear from you!  ...and thanks for your help :)

--

Kathy
Co-Mod CABF Very Young w/Lisa, Kathleen, Celia, Amy
Co-Mod CABF Very Young 2 w/Amy, Janice
Co-Mod CABF Support 2 w/Vicki, Jim, Donna
Co-mod CABF Adoption w/Chrisa

Cody 5, DX: BP Disorder NOS, SPD
Current Meds: Lamictal 150 mg, Seroquel XR 400 mg, Lithobid 600 mg, Intuniv 4 mg, Klonopin (prn)

*Tried Clonodine (paradoxical reaction), Risperdal (deep itch when hot & gets tic), Zyprexa tabs (allergy) Abilify (akathisia - a state of motor restlessness, sometimes produced by neuroleptic medication, that ranges from a feeling of inner distress to an inability to sit still.), Lithium Carbonate 450 mg.

dandkcraig@hotmail.com , Arkansas
Bio: http://www.bpkids.org/user/29357

My son has been on 2 mg Intuniv for about 4 months.  It definitely helps his hyperactivity enough to keep me sane, but I don't feel it goes far enough.  The doctor increased his dose to 3 mg and he got extremely emotional.  Rather than go back to the 2 mg, the doctor stopped the drug completely and he went haywaire.  Holy Rebound Batman!  He was the most hyper I have ever seen him in his life!  Put him back on Intuniv -- had to titrate 1 mg to 2 mg all over again -- and he got some relief.  So now I'm terrified to increase the dose again.  He can't take stims -- we tried both Focalin and Dextrostat -- and he got extremely agressive. 

Thanks so much!  It is not working at all plus it's causing terrible irritability which is a side effect - ugh.  He is also highly emotional - whiny, crying for no reason, wanting to sit in our laps a lot, won't play outside...

I appreciate your response!

Kathy
Co-Mod CABF Very Young w/Lisa, Kathleen, Celia, Amy
Co-Mod CABF Very Young 2 w/Amy, Janice
Co-Mod CABF Support 2 w/Vicki, Jim, Donna
Co-mod CABF Adoption w/Chrisa

Cody 5, DX: BP Disorder NOS, SPD
Current Meds: Lamictal 150 mg, Seroquel XR 400 mg, Lithobid 600 mg, Intuniv 3 mg, Klonopin (prn)

*Tried Clonodine (paradoxical reaction), Risperdal (deep itch when hot & gets tic), Zyprexa tabs (allergy) Abilify (akathisia - a state of motor restlessness, sometimes produced by neuroleptic medication, that ranges from a feeling of inner distress to an inability to sit still.), Lithium Carbonate 450 mg.

dandkcraig@hotmail.com , Arkansas
Bio: http://www.bpkids.org/user/29357

I am getting scared about INtuniv now. Our pdoc perscribed it to us yesterday to help with the irratability and aggression but now I am worried.

--

~Char
ME BP Situational depression, PTSD

DD7, BP, CD, ADHD, Anxiety
3xMS including
Depakote 1000mg,
Abilify 20mg,
Lamictal 200mg,
Adderal 10mg for ADHD and
Zoloft 25mg for Anxiety.
pDoc and TDoc.

My daughter is going to start Intuniv tomorrow and I am nervous as well.  She is on 800mg of Seroquel, 4mg of Abilify, 50mg of Lamictal and 1mg of Benztropine.  We really struggle with they hyperness, rage and emotions so not sure how she is going to react to this.

Wondering how things are going for Char?  And Kathy, what did you do with the Seroquel, raise or lower the dose?

--

Katie
Mom to:
Hailee BP & ADHD (8), Seroquel, Abilify, Lamictal, Benztropine (adding Intuniv)
2nd grade with IEP
Kyle ADHD (11), Adderall Xr
6th grade
Nebraska

In reply to katie, we switched pdoc's last week and he is titrating DD off of depakote since she seems to be tolerating the Intuniv at 2 mg's well. After we get done with the 2mg on this coming tuesday he wants us to start 3mg and keep her at that does for at least a month so we know if it is working. He is also going to be removing the zoloft and adderal. He did add respidrone though, which he is hoping will be her main med from now on. It all gets so confusing sometimes..

--

~Char
ME BP Situational depression, PTSD

DD7, BP, CD, ADHD, Anxiety

Lamictal 200mg,
INtuniv 2mg Titration
resperidone .5mg
Abilify 20mg
Adderal 10mg
Zoloft 25mg
pDoc and TDoc.

Our son started Intuniv three days ago.  He quickly became very agitated and sad.  It was like a major light switch went off - I mean a much bigger one than usual.  He had a lousy day at school (where he is "on thin ice" anyway.)  We decided to stop the Intuniv today.  We will go up a little on the Lamictal and add Risperdal as needed until we can get him back to pre-intunive functioning.

I searched a little on the internet and found an academic article that said that Intuniv generally had low side effects, however it can cause agitation/mania in kids with bipolar disorder.  So I guess for some this happens and for others it doesn't and the only way to find out is to subject our kids to a trial. Our poor kids! 

T

You are so right.  I feel like we're just experimenting on them sometimes.  But what else can we do?

--

Brenda,49, CABF Parent to Parent Volunteer
Mom to Andrew, 15 1/2, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
Eric, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
Brian, 12 1/2 & Helen, 9
Married 16 years to DH, 49
Tallahassee, FL

FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.

 I did not end up starting Hailee on the Intuniv as the more I read the more nervous I became.  I know that every child reacts different and as Brenda says, sometimes it is just experimenting, that's all you can do.  In this case, I just didn't have a good feeling and I realize that sometimes I have to stand my ground and ask the doctor to try something different.

I went in and met with Hailee's doctor on my own and explained all of my concerns to him and we ended up increasing the Lamictal and not going forward with the Intuniv.  So far I haven't seen a big change, but her days at school have gotten slightly better so am anxious to see how the weekend goes as well as next week at school.

--

Katie

Katie
Mom to:
Hailee BP, ADHD & ODD (8), Seroquel 800mg, Abilify 4mg, Lamictal 100mg,
2nd grade with IEP
Kyle ADHD (11), Adderall Xr 30mg
6th grade
Nebraska

In response to Katie - his seroquel was increased After removing the Intuniv.

Before starting Intuniv, the pdoc gave me every book and the patient info on the med.  It all looked great!  Cody must be one of the first ones around here and AR to take this med since I could not find any personal experience... until now.  There are several kiddos in support groups who are not doing well with this med although not to the extent of Cody's symptoms, I don't think???

His body reacts differently than most anyway; hasn't gained weight on any med before Intuniv.  I don't know how much he gained in the 4 weeks out of 6 he took it but his pants were tight.  My sig line reflects his side effects.

He became the most unstable than he has been in a very long time.  Hallucinations started when he was on 4 mg but stopped when he came back down to 2 mg.  The pdoc brought him down slow mainly because I had read how hard it is to stop.  The last dose was 4/8/10.  Seroquel XR was raised 200 mg the next day.   The days are getting some better but he is still very angry all the time.  Irritable is not a good descriptive word for the amount of anger he experienced.  It also caused him to become LESS focused.  Of course the pdoc doesn't understand why it caused this reaction.  I have to wonder now, about a lot of meds that are supposed to be stimulant free....

Good Luck to all,

Kathy
Co-Mod CABF Very Young w/Kathleen, Celia, Amy, Will
Co-Mod CABF Very Young 2 w/Amy, Janice, Will
Co-Mod CABF Support 2 w/Vicki, Jim, Donna
Co-mod CABF Adoption w/Chrisa

Cody 5, DX: BP Disorder NOS, SPD
Current Meds: Lamictal 150 mg, Seroquel XR 600 mg, Lithobid 600 mg, Klonopin (prn)

*Tried Clonodine (paradoxical reaction), Risperdal (deep itch when hot & gets tic), Zyprexa tabs (allergy) Abilify (akathisia - a state of motor restlessness, sometimes produced by neuroleptic medication, that ranges from a feeling of inner distress to an inability to sit still.), Lithium Carbonate 450 mg. Intuniv – (caused mania/hallucinations, insomnia, weight gain, irritation, aggression)

dandkcraig@hotmail.com , Arkansas
Bio: http://www.bpkids.org/user/29357

I just wanted to add to the conversation that we just put our 8 year old on Intuniv.  She is also on Depakote, Prozac and Seroquel XR.  After getting her stable on the Depakote, and Seroquel, we first added the Prozac.  We then tried Focalin, which is what she had been on before she got dx with BP.  The Focalin seemed to work at first - but then the irritability, insomnia, bad behavior at school, etc started again.  Our pdoc said we could try a trial of Intuniv to see if that works better.  I started her over the weekend w/ only 1/2 of a 1 mg tablet.  She has now had 3 days of 1 mg tablets and she is doing GREAT.  Her teachers can't say enough great things about her concentration, calm attitude, focus, etc.  Major side effect for her has been she looks sleepy and is sleepy.  She has been sound asleep by 7:30-7:45 every night this week (I'm not really complaining!).  I think that might wear off after she gets used to this dose. 

Anyway - I just wanted to tell you all another side of the story.  It's true that sometimes you just need to try things to see if they work.  It's so frustrating, to us, to them, to their teachers, to everyone around.  And who knows, maybe in another week I'll discover that this isn't the right drug.  But this week, we have a calm child who is giving us a break for awhile, which is nice.

--

Mom of DD age 8 with Bipolar NOS, ADHD, Anxiety disorder.

-I am not sure if this info will help anyone here, but my son's ped started him on the Intuniv and told me it was NOT a replacement for his stimulant med, but something to stop the aggression and tantums caused by the side effects of his stimulant meds. So the way I understand it, if I take him off the adderall and just use the intuniv, it will cause him to be sleepy and cranky, possible increasing his aggression. Has anyone else tried the combo togather? I know my kids have not been diagnosed with bipolar, but my husband is, so I understand the frustration of the meds not working. I hope this info can help.-

Mom of:
Daughter age 12- obssessive eating disorder: Concerta 18mg
Son age 6- ADHD with aggression: Adderall XR 15mg, Intuniv 1mg

My question is to Kathy Craig.  You said that your son had the akathisia with the abilify.  I have always wondered if this was the reason he goes and can't sit still at all.  The previous doctor did not buy it and said that it usually effects adults more.  I wish I can decrease the abilify but when I tried he got crazy in like 3/4 days.  Is it hard to withdraw from 3 years on Abilify?

Now about Intuniv......We started Intuniv about 6 weeks ago.  We are currently on 2 mg and he is 11 years old and 64 lbs.  (never gained any weight with any meds)  We have been on Abilify for 3 years and then added Zoloft to help with the low self esteem and I hate myself moods.  My DS cannot take stims either.  He hyperfocuses and can't sleep and then also the irritability. 

I told the doctor when I went in that I wanted to try the stims again because he is still so hyper, can't sit still, forgetful, doesn't put things back, can't focus, mind racing, when in school his folder/backpack is a mess.  He can't even understand what he writes down in his agenda.  So the pdoc said let's try the Intuniv.  Well the first week he was on the floor doing a puzzle.  It was my 6 year olds puzzle but none the less he was doing a puzzle!  I thought this med is great.  Then he went to camp for a week (great), then we went to florida (sorta great) and when we got back to the hum drum of home he started with the can't sit still got to go all the time. 

In fact, two days ago he was so "manic" that he jumped off of the top of my neighbors roof of their son's fort (14 ft high) and called me screaming to call 911 that he broke his back.  He was trying to use a homemade parachute to see if it would work???  EMS came and long story short he will be ok.  Now the pdoc said to decrease zoloft by 1/2.    So there you go...

--

Mom,43, Anxiety, 50 mg. Zoloft,
DSS, 23, step-son, self medicates
DS, 13, ADHD, Daytrana Patch (only on school days)
DS, 11, Bipolar, ODD, Anxiety: 10 mg. Abilify, 2 mg. Intuniv, 25 mg. Zoloft
DS, 9, healthy
DD, 6, healthy
Married 7 years to DH, 46
Inman, SC

I am always leery of a pdoc who says a SE can't happen.  That is just ridiculous.  My ds15 took Abilify around age 12, and he definitely had severe restlessness with it.

I am so glad your ds did not hurt himself seriously.  That sure sounds like a manic act to me.  Does pdoc intend to wean off the zoloft completely?  I have found that AD's often take a few weeks to induce mania.

--

Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 15 1/2, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 12 1/2 & H, 10
Married 17 years to DH, 49

FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.

He had taken the zoloft for a least a year through the winter.  This may have been the first summer with it.  I need to keep better notes and get a binder together for him.  Anyways the zoloft was taken away.  He reduced it to half then all of it.  Now we are weaning him off Intuniv and he said let's try Wellbutrin XR.  I hae not seem too many kids on this on this website.  I am too afraid of all the mood stablizers and the long term effects.  Sometimes I want to go back to nothing and see what he is like.

--

Mom,43, Anxiety, 50 mg. Zoloft,
DSS, 23, step-son, self medicates
DS, 13, ADHD, Daytrana Patch (only on school days)
DS, 11, Bipolar, ODD, Anxiety: 10 mg. Abilify, 2 mg. Intuniv, 25 mg. Zoloft
DS, 9, healthy
DD, 6, healthy
Married 7 years to DH, 46
Inman, SC

Why are you scared of the MS's?  Lithium, Lamictal, and Trileptal generally have mild SE's and can be very effective in controlling cycling.  Have you read the Treatment Guidelines?  This is a great reference for understanding the rationale behind the treatment for BP.

On the other hand, if you are wanting to take the non-medication route, you can check out the CAM Forum here.  You will need to find a pdoc who is willing to work with you, as your ds will still need monitoring even if he is receiving a non-traditional treatment.  Vitamins, minerals and herbal supplements affect the brain and body and can have adverse effects just like meds.

--

Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 15 1/2, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 12 1/2 & H, 10
Married 17 years to DH, 49

FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.

 I guess I am always wanted answers to why he is like this and fix it now with a poof of fairy dust.  But honestly, I don't know why I am afraid.  I see alot of kids on these meds but it does not sound like everything is great.  And I guess I want him to be cured not just ok. 

I first noticed things with him when he was 18 mos. old.  He screamed all the time in his car seat.  Had seperation anxiety at 2/3 and night terrors waking up screaming.  I did not know what was wrong with this child.  He had sensory problems with clothes, tags, socks shoes.  We went to the mental health center and we tried Strattera.  Which helped a little bit for a week or so.  Then abilify.  Then he was pretty good until we switched doctors at 6 and she put him on concerta.  Not good.  Then back to strattera and risperdal.  So he was on it for a total of 4 years.  His prolactin level was high and the pdoc and I decided to try nothing thru the summer.  bad move.  Then when we tried Risperdal again he had a movement in his mouth.  We were not sure if it was a SE but it went away.  From then on I got more info on SE and started to panic about them every time he went on a new medicine.  He went on Geodon and I was checking his heartbeat all the time and so on.  Here is the list and SE he had (Risperdal, increased prolactin -- Geodon, hyperfocused and obessessed all day -- Trileptal, 1 dose and was bouncing off the wall -- concerta, out of control in school -- Seroquel, anger, irritable, sucididal -- clonidine for sleep at times, tenex  ?? -- Abilify now for 3 years and still wondering if he has akasthia or just hyper.  He is very hard to get stable.  Obvious because no doctor every prescribed the MS.  His last doctor said we could try the lamictal but we changed docters before we did.  So now he is weaning off Intuniv and is suppose to start Wellbutrin XR with the Abilify.  also he hates needles or any blood drawn (freaks out!).  I also did the vitamins last January.  I had a specialist and we did a hair anaylses and urine for neortransmitters.  He had to 6 vitamins in the morning and 6 at night.  He did ok for awhile then I really did not see the results I was hoping for.  I wished I had charted back then because then I would no more.

--

Mom,43, Anxiety, 50 mg. Zoloft,
DSS, 23, step-son, self medicates
DS, 13, ADHD, Daytrana Patch (only on school days)
DS, 11, Bipolar, ODD, Anxiety: 10 mg. Abilify, 2 mg. Intuniv, 25 mg. Zoloft
DS, 9, healthy
DD, 6, healthy
Married 7 years to DH, 46
Inman, SC

Well lithium requires blood draws regularly, but Lamictal does not, so it might be a good choice for a MS.  I kind of worry about the Welbutrin given his hx of reactions to other meds.  I'll keep my fingers crossed.  Did you get a chance to look at the CAM board yet?

--

Brenda,50, CABF Parent to Parent Volunteer
Mom to A, 15 1/2, BP, Tourette's, OCD, ADHD: Eskalith CR, Trilafon, Lamictal, Seroquel, Cytomel
E, 14, BP,AS, hypothyroidism: Seroquel, Eskalith CR, levothyroxin, inositol
B, 12 1/2 & H, 10
Married 17 years to DH, 49

FROM CABF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.

 Yes I have been looking at the CAM board.  I have told the doctor that I am holding off on the Wellbutrin.  He took his last intuniv yesterday and I just want to see how he is on just the Abilify for awhile.  The natural way is great except for the expense and the amount of pills you have to take.  But I did manage to secure a neuropsychological testing for him.  I do not have any IEP or help at school either.  I need to get the testing done myself.  I know he has executive function deficits and I don't know how to proof them.  I also set up a therapy session with a lady who specializes in kids with bipolar.  She is great and so hard to get in with.  So two things checked off my list.  Next I want blood work down on him from thyroid, prolactin, liver, 4 panel whatever.  He has never had blood work done.

--

Mom,43, Anxiety, 50 mg. Zoloft,
DSS, 23, step-son, self medicates
DS, 13, ADHD, Daytrana Patch (only on school days)
DS, 11, Bipolar, ODD, Anxiety: 10 mg. Abilify, 2 mg. Intuniv, 25 mg. Zoloft
DS, 9, healthy
DD, 6, healthy
Married 7 years to DH, 46

Medicines tried: Risperdal, increased prolactin -- Geodon, hyperfocused and obessessed all day -- Trileptal, 1 dose and was bouncing off the wall -- concerta, out of control in school -- Seroquel, anger, irritable, sucididal -- clonidine for sleep at times, tenex ?? -- Abilify now for 3 years and still wondering if he has akasthia or just hyper and can't sit still.

Intuniv 2 mg with Abilify 5 mg has after 5 years proven to be a great combination for us.  On 3 mg of INtuniv, he got very sleepy, we even tried 2 in the am and 1 in the pm.  We have a child that is loving, caring and able to access life now. Yes, we will go through the motions again, but I am content.  It was not until we added ABilify that we saw the true changes so I believe in this combination.  Only backdraw is great weight gain, 20 lbs, most likely from the Abilify.  I am very concerned about that.  Any input?

Also, I have kept a diary for nearly 4 years, nearly every other day.  It would not have been possible to see through the forest of symptoms with various meds otherwise.  It is so important to weed out what works and what doesn't.  I do it on the computer.  It is invaluable to me and the drs when we review

My son heard voices shouting in his head when he was taking Intuniv.  I think he had some other bad side effects too.  We didn't stay on it long.

--

Jody married to Bob and mom to:
9yr old boy with BP
13 yr old very sweet daughter
16 year old easy going son