Back on Intuniv - sick of the rages

[TiredSoul]

So..... whenever difficult child rages and turns our household upside down - I go into crisis mode and want something to change immediately. After Tuesday night's rage, I faxed a letter to the psychiatrist saying I wanted to take difficult child off Concerta entirely and just try Intuniv alone. (Background: He just increased his C from 27 to 36 mg - we trialed Intuniv when he was on 27 Concerta and then took him off because we thought it might have caused a couple fights he was in around that time.)

So we had to go in and talk to psychiatrist this morning about this request and he said we can add the Intuniv back and see how he does. What part of take him off stimulants doesn't he understand? I didn't give difficult child his pill this morning because I wanted to see what psychiatrist came up with first - the visit was a nightmare - difficult child jumping all over the place and talking non-stop - oh Lord, now I remember how it is when he is off medication!!! I asked him specifically what we can do when difficult child rages and told him we need training on properly restraining him and he told me he/we would need to work with the counselor (in his office) to come up with a safety plan, etc. Ok waste my time some more will you! I asked him about a neuropsychologist evaluation and he said we don't need to go down that path right now - that is more for mental retardation, autism, major learning disorders, etc. He said difficult child is smart. WTH!?!! Same thing our pediatrician told us. So we walk out of there with Concerta dropped back down to 27 mg and added the Intuniv back on 1 mg for 2 weeks, then up to 2 mg. I once again feel like we are NOT getting anywhere! What the heck should I do?

We cannot live like this. Last night difficult child raged and I felt myself losing control more than I ever have felt before. You know how it is - they make you CRAZY! I am calling a new doctor so I can get something to help me cope. This is nuts.

When difficult child gets like this, it's like there is something in his brain saying I need this certain chemical to be released so that I can be calm again. So he flips out and expends all of this energy and whatever chemical it is is released into his system and then he calms down. This happens almost every other day. WTH is this??

Oh and then after all this - the psychiatrist asks me "so what's his consequence for doing this (raging)"? I told him we haven't gotten there because we are just trying to deal with this happening. He said even if it is bio-chemical, he still needs a consequence so he knows it is not acceptable. To me that is like saying to a blind person- I'm going to give you a consequence so you know it is not acceptable for you to not be able to see.

 

[HaoZi]

That's how kiddo was, like a boiler building up steam and having to vent it off. It took a major episode that landed her in psychiatric hospital for a week to get her off the medications that were causing the rages and get her on something new and see if she could handle the new one better. I'm still pushing for a neurology referral.

 

[smallworld]

Jules, did you ever check into getting him evaluated at a university teaching hospital or children's hospital? If you don't get a neuropsychologist evaluation, you at least need a new psychiatrist.

I agree that a consequence is not going to change behavior. In fact, I think it will only make him rage more. I recommend not listening to the psychiatrist about that.

HUGS!

 

[TiredSoul]

SW,
Both of the places near me that I could take him for a neuropsychologist evaluation wants our doctor to make the referral. Our pediatrician and the psychiatrist both say it is not necessary. I just don't get it.

 

[TiredSoul]

That's how kiddo was, like a boiler building up steam and having to vent it off. It took a major episode that landed her in psychiatric hospital for a week to get her off the medications that were causing the rages and get her on something new and see if she could handle the new one better. I'm still pushing for a neurology referral.

That's terrible - and probably where we are heading. This is not good for any of us. I was just reading about the physiology of anger/rage and what your body goes through during it is so bad for you.

 

[busywend]

I for sure would not punish him as you can see he can not help it.

In fact, go with your gut. Tell difficult child next time he rages you are going to help him do it the loudest and longest he can. Get that chemical released - seriously!
In fact, rage with him to show your support. You never know what that will do. Sometimes, the strangest alternatives make us end up having a nice memory for once.

 

[TiredSoul]

I like it busywend!

One thing I have noticed is he almost always rages on Thursday evenings (they have early release from school every Thurs) - and Wednesday evenings I think are pretty good (he has unicycle for an hour after school and then we pretty much go straight to indoor soccer for an hour - he works up a major sweat in both activities). So it looks like he needs the exercise or could use it to his benefit. I will have to think of some other things for him to do.

 

[smallworld]

But are there psychiatrists at the hospitals who could see him (not neuropsychs)? You need a new psychiatrist.

 

[WearyWoman]

Just wanted to say that I could have written your post myself not so long ago. Our youngest boy is on Focalin XR for severe ADHD, and he was experiencing rages in the afternoons and early evenings. It was pretty consistent and didn't take much to set him off. He became physically aggressive and emotionally abusive toward everyone in our whole family and even his in-home therapists. I KNOW how bad and how upsetting the rages can be. My lowest point was when he raged to the point that he unscrewed the heavy bedpost knobs off of his bed (solid wood) and threw them at me. If one had hit me in the head, I wouldn't be sitting here right now. That was a wake-up call, and like you, I felt like we HAD to do SOMETHING. It was not acceptable to continue like we were.

I believe kids behave well when they can. If they consistently cannot, you have to wonder what is going on. I started keeping a daily record of his meltdowns and inflexible moments. I soon learned that they were occurring rather consistently in the afternoons and especially when anyone required something of him at those times of day.

I know this post is getting long, but hang in there, I have a point - really. )

I came to the conclusion that his rages were being triggered to some extent by the stimulant (Focalin) leaving his system in the afternoons. Coming off the medication was hard on him.

Our pediatritian recommended that we try Intuniv. It caused him to be very sleepy initially as we increased the dosage. She then thought we should try taking him off the Focalin, just using the Intuniv. Well, that was a disaster because of his extreme hyperactivity. The Intuniv did not help with his hyperactivity at all. But, without the Focalin, he was a nicer, happier boy.

In the end, he had to go back on Focalin with the Intuniv. Now, the afternoons are much smoother. He is happier and nicer. He doesn't have the extreme agitation that was leading to his rages. Now and then he gets a little upset, but he is much more easily able to shift gears. So he's on 2 mg of Intuniv with his Focalin. He takes both medications right away in the morning, and that's it for the day.

It seems to be working well. I will say that 3 mg of Intuniv was too much and he had worse behavior at that dose. So we went back to the 2 mg.

I guess Intuniv is pretty expensive. We have health insurance, and while they have paid up until now, today they denied payment until our doctor confirms that we have tried other medications and that Intuniv is the only one that is working. Give me a break! I don't care how expensive this medication is . . . this is the reason we have health insurance and we and our employers are paying for it! Ughh . . .

Anyway, keep fighting the good fight. Trust your instincts that something is not right - that your child cannot completely control himself. I would consider finding a new psychiatrist if this one is so ignorant as to blame parenting for this sort of out-of-control, over-the-top raging. This is beyond that. You deserve better.

 

[TiredSoul]

But are there psychiatrists at the hospitals who could see him (not neuropsychs)? You need a new psychiatrist.

Oh I see now what you are saying. Yes, we need a new psychiatrist (and this dang guy is new... ) there is literally no one else to go to in the immediate area. We would have to travel to Seattle or Tacoma which we would do if we had to. They are both around an hour or so away.

 

[TiredSoul]

Just wanted to say that I could have written your post myself not so long ago. Our youngest boy is on Focalin XR for severe ADHD, and he was experiencing rages in the afternoons and early evenings. It was pretty consistent and didn't take much to set him off. He became physically aggressive and emotionally abusive toward everyone in our whole family and even his in-home therapists. I KNOW how bad and how upsetting the rages can be. My lowest point was when he raged to the point that he unscrewed the heavy bedpost knobs off of his bed (solid wood) and threw them at me. If one had hit me in the head, I wouldn't be sitting here right now. That was a wake-up call, and like you, I felt like we HAD to do SOMETHING. It was not acceptable to continue like we were.

I believe kids behave well when they can. If they consistently cannot, you have to wonder what is going on. I started keeping a daily record of his meltdowns and inflexible moments. I soon learned that they were occurring rather consistently in the afternoons and especially when anyone required something of him at those times of day.

I know this post is getting long, but hang in there, I have a point - really. )

I came to the conclusion that his rages were being triggered to some extent by the stimulant (Focalin) leaving his system in the afternoons. Coming off the medication was hard on him.

Our pediatritian recommended that we try Intuniv. It caused him to be very sleepy initially as we increased the dosage. She then thought we should try taking him off the Focalin, just using the Intuniv. Well, that was a disaster because of his extreme hyperactivity. The Intuniv did not help with his hyperactivity at all. But, without the Focalin, he was a nicer, happier boy.

In the end, he had to go back on Focalin with the Intuniv. Now, the afternoons are much smoother. He is happier and nicer. He doesn't have the extreme agitation that was leading to his rages. Now and then he gets a little upset, but he is much more easily able to shift gears. So he's on 2 mg of Intuniv with his Focalin. He takes both medications right away in the morning, and that's it for the day.

It seems to be working well. I will say that 3 mg of Intuniv was too much and he had worse behavior at that dose. So we went back to the 2 mg.

I guess Intuniv is pretty expensive. We have health insurance, and while they have paid up until now, today they denied payment until our doctor confirms that we have tried other medications and that Intuniv is the only one that is working. Give me a break! I don't care how expensive this medication is . . . this is the reason we have health insurance and we and our employers are paying for it! Ughh . . .

Anyway, keep fighting the good fight. Trust your instincts that something is not right - that your child cannot completely control himself. I would consider finding a new psychiatrist if this one is so ignorant as to blame parenting for this sort of out-of-control, over-the-top raging. This is beyond that. You deserve better.

Oh wow - our difficult child's are VERY similar. I think we are going to be in the same boat as you. I eventually want to get him off Concerta and just the Intuniv but after seeing him this morning without his medication at the psychiatrist appointment - he was WAY hyperactive. After school he was still very hyper even though I gave him the lower dose of Concerta and the Intuniv. I too think his rages are worsened because of coming off the stimulant. I know when we first looked into Intuniv our insurance classified it as a Tier 3 or something like that so it would have cost us like $100 per month. Now they reclassified it and it is just a regular $35 co-pay. I hope your insurance will cover it.

Have you ever tried any other types of medications? Have you had any side effects with the Intuniv? When we tried it before, he was waking up around 2 am and having bad dreams too. That was just on 1 mg. He did go to sleep much much easier though.

 

[MICHL]

I understand Intuniv is the same as Tenex but time-released. i've asked by son's psychiatrist if he should try intuniv vice the tenex (generic-guanfacine).... it's not covered, but she didn't seem to feel the results would be any different... Tenex can give given twice day to get the same effect as a time release... and if you get the Guanfacine version (generic) it's super cheap. I've just been seeing so many posts about Intuniv and just dont' get why the big interest in it,,, when Tenex never seems all that popular to start with.

 

[pepperidge]

Here is my experience for what it is worth.

On Adderall alone my son had afternoon major meltdowns. Yet it was an extremely effective medication. We added Risperdal in the afternoon in a relatively small dose and meltdowns significantly decreased. Also I think an afternoon dose of Adderall Got even better when we added Lamictal.

My youngest son had two trials of Tenex --for impulsiveness etc. It was a DISASTER!!! major aggression rages etc that took about three weeks to clean out of his system. I will never go back to that medication. He was unable to tolerate stims until he was about 12 (made him hyperfocus, very anxious) and now it seems helpful. We tried every variation of stimulant out there. We found Abilify to be a very helpful drug when he was younger.

I guess I would think about a new psychiatrist, one very medication experienced, and ask him/her to consider a wide range of medications and to make a systematic plan to trial different things. I would seriously think about a) adding Risderdal and maybe an afternoon dose of a stimulant if you think it is wearing off too early. Maybe trial a different stimulant.

Good luck.

 

[TiredSoul]

Here is my experience for what it is worth.

On Adderall alone my son had afternoon major meltdowns. Yet it was an extremely effective medication. We added Risperdal in the afternoon in a relatively small dose and meltdowns significantly decreased. Also I think an afternoon dose of Adderall Got even better when we added Lamictal.

My youngest son had two trials of Tenex --for impulsiveness etc. It was a DISASTER!!! major aggression rages etc that took about three weeks to clean out of his system. I will never go back to that medication. He was unable to tolerate stims until he was about 12 (made him hyperfocus, very anxious) and now it seems helpful. We tried every variation of stimulant out there. We found Abilify to be a very helpful drug when he was younger.

I guess I would think about a new psychiatrist, one very medication experienced, and ask him/her to consider a wide range of medications and to make a systematic plan to trial different things. I would seriously think about a) adding Risderdal and maybe an afternoon dose of a stimulant if you think it is wearing off too early. Maybe trial a different stimulant.

Good luck.

We have tried Focalin, Adderall, Vyvanse, and Concerta. Slowly over the past 3 years, the afternoon/evening rages have been getting worse and worse. I think he did best on Adderall. I think we took him off at the time because it seemed like he was getting more aggressive (which has continued despite different stims). It also seemed to be making him more anxious. He had one major panic attack where it seemed like he wanted to crawl out of his skin one night because he thought wolverine was outside and was having bad dreams. So again - in panic mode I went in and said we need to change this @#$ medication. We did add a small short acting dose of adderall in the evenings at one time, but I don't think we trialed it for very long. I need to go back and look at my logs and see what that did.

MICHL,
I have read of both good and bad results with Tenex and Intuniv. Some ppl love Tenex and hate Intuniv and vice versa. It's a ****-shoot.

 

[dee55]

Hi, im new here just came across your post and thought I'd share. My ten yr old son has ADD, anxiety, ODD. We have done it all over the past couple of years. neuropsychologist evaluations, neurofeedback, and over the past year we have gone to a biomedical doctor and had a lot of food allergy tests run, OAT test, amino acid tests. We found he has an intolerance to dairy and wheat. So he's on a girlfriend/CF diet. He isn't metabolizing protein well so his amino acids levels are way low. Which means he doesn't produce the chemicals that make him feel good etc.That's what his doctor told us and it makes sense. Besides he's pale and skinny and weak, I believe it. So we knew what vitamins and minerals he lacked, and we give it to him daily. That combined with diet didn't seem to help his behavior. Never mind all the consequence/reward programs we implemented in the home. His grades at school are great, it's mainly the rages that effect the family. I keep saying the same thing every time it happens. That I CANNOT TAKE it anymore and it HAS to stop. It's aweful. It's funny because he does seem totally fine after he flips out, almost like it's a release. Last summer we started medications. First with a stimulant ... they did not work. His anxiety levels went way up, he tends to hyper focus so you can imagine what that did to him. We then tried Intuniv which actually did help tremendously. He's on 3 mg but we are in the process of reducing back to 2mg because hes exhausted all the time and it's been over a month, it's just too much. The doctor wanted to try another stimulant with the intuniv because i guess its works for a lot of kids. But again... his anxiety level went way up. We figure, he does well in school, and is okay otherwise, it's just these rages, so that's the focus. We are staying on intuniv for now and starting talk therapy and will try to work on alternative ways to handle anger, and maybe focus more on figuring why raging is his coping mechanism for stress etc and how we can come up with another way of coping. His rages have reduced a lot but there are still some. He has also replaced rages with a lesser reaction of yelling and screaming for a bit, but they are shorter lived and not as destructive. Still not acceptable behavior by any means because I find myself losing it with these. It's just ridiculous. He can get aggressive and posture at us which is a slippery slope, so we are still struggling, but a little more hopeful. It stinks, because I feel like I'm in a race with time to help solve these issues before he's to old and doesn't listen to us or starts doing drugs etc. The worry! I know we are doing all we can though, and that's all you can do. It sounds like you are to, good luck and I hope this helps.