Tenex instead of Intuniv?

[TiredSoul]

Hello! I have been away from this board for a long long time (not because things were going perfectly, but because I felt like I was managing things alright). I could not even remember the website but eventually remembered and here I am. 3rd grade is off to a rough start.

Has anyone else had a pediatrician who is reluctant to prescribe Tenex instead of Intuniv? Tenex is cheap. Intuniv is not. We cannot afford Intuniv. We saw a psychiatrist who recommended Intuniv and he was working with our pediatrician - however once we realized how expensive it is, we did not fill the rx and asked for Tenex instead. Our pediatrician consulted with the p-doctor and he told her there was no literature to support using Tenex this way. We asked our pediatrician again and told her we have read numerous articles to suggest Tenex has been successful for use in the hyper/impulsive aspects of ADHD. She is not comfortable prescribing it unless she has a psychiatrist to work with directly. She keeps insisting counseling is the way to go. We don't agree. There are not a lot of options for other docs where we live. Anyone have any advice on this? TIA!

Just a little background info:
We have tried most stimulants and once we increase the dose enough to hopefully see better results, difficult child becomes agitated and aggressive. He is definitely better on the stims than without them, but we still have most of the typical ADHD issues, just not as bad as without the medications.

What we are really trying to control is the irritating behaviors like picking on ppl, purposely annoying ppl, wants things his way, defiant, seems to think only about himself, constantly irritating everyone, pushing everyone's buttons, etc. - in addition to paying attention, focusing, and not forgetting his belongings all the time. The first hour in the morning is the worst and then evenings are awful too.

 

[barneysmom]

Hi Jules,

I have heard of lots of kids on Tenex for impulsivity/aggression. I believe Intuniv is just long-acting tenex (as you probably know). Tenex (and sometimes clonidine) was what was commonly given before Intuniv came into the picture, which was relatively recently. I'm surprised your psychiatrist doesn't know about the use of Tenex in this context. Is your psychiatrist new?

i don't usually stick my neck out about medications, but I'm pretty sure about this one.

Jo

 

[TiredSoul]

Hi Barneysmom,
Thanks for your reply. Our pediatrician-doctor is young and not super experienced, but she is very thorough and knows my son well. The p-doctor we saw was just one time. He basically just met with us and our son and confirmed the diagnosis he had. Then he gave us a list of suggestions we could try (the first being Intuniv) and said he could manage the medications or he could work with our pediatrician and she could manage them. That was the extent of his involvement, other than our pediatrician calling and asking for his advice on the Tenex. Yes, Tenex is guanfacine. Intuniv is guanfacine. Tenex is short acting and used off label for ADHD. Intuniv is long acting and used for ADHD. Our pediatrician has even mentioned she has some kids on Clonidine which is very similar to Tenex but is more sedating and we don't want that.

I don't know what to do. We even said fine then, write the script for Intuniv and we will bite the bullet - but then she said you'd be better off spending that money on counseling. She thinks he has anxiety, but the behaviors we see when he is not medicated do not appear to be anxiety. They seem uncontrollable, and downright belligerent at times. Sometimes he acts as if he is drunk. Getting him to get dressed for school he is floppy and hanging all over the place and flopping on the floor and then I have to pull him up and he just laughs like a drunk laugh and thinks it's funny or something. By the time I get him to school I am ready to hit the bottle (j/k, but geeeez!).

 

[barneysmom]

Hi Jules,

Is there any way you could work to get the Intuniv covered by insurance? (I'm sure you've thought of this already).

Regarding counseling -- lots of our kids can't respond to counseling until they are on medications which allow their brains to learn (as you know). You know your son best -- follow your gut. It's easy for someone else to say counseling, easy for someone else to say medications. You sound like you already know quite well what your son needs, and you've been around the block with him too.

My younger son is on Intuniv -- it has helped him. I let the rx slip for a couple days recently, and i could really tell the difference. It does take awhile to see results, purportedly -- we slowly titrated up to 4 mg where we have been for quite awhile. It may be worth the benefit to give a steady dose instead of the ups and downs of short-acting guanfacine. (just our experience of course).

If your pediatrician insists he take Intuniv, can't she arrange to get it covered for you by insurance?

Good luck -- your pediatrician is still wrong about the tenex, at any rate, but maybe it's moving your son down a better path with the intuniv. Who knows? Sheri on another thread said she got intuniv covered -- did you read that one?

Take care Jules -- oh I just remembered our psychiatrist had quite a few samples of intuniv to get difficult child almost all the way up to 4 mg. When I ran out (just recently) the psychiatrist had more samples to help me get through. He has samples of one and two mg doses. Sounds like the drug companies are really pushing the new Big Dog in town with free samples and now no one knows about little old tenex -- although it's use is virtually the same as clonidine.

Jo

 

[TiredSoul]

Jo,
I actually emailed our insurance company today to see if we could get the Intuniv cheaper. We'll hope for the best.

I was just shocked that our pediatrician is not comfortable prescribing Tenex. Seems like docs have been using it that way for a long time. Longer than Intuniv for sure. I guess I'll just keep on her about it. Her office called and said they want us to go to a Children's Hospital for one appointment and then *if* they will work with her she may be willing to try the Tenex. Crazy. Both my nephews were just prescribed Tenex. One has ADHD/ODD and one has Aspergers/Aggression. It is not a controlled substance so maybe I could just go to their doctor (a couple hours away) and get started on it.

Thanks for your advice!

 

[PatriotsGirl]

In my experience, stimulants do not help with ODD at all. If anything, I think it made it worse. Her grades improved a lot. Went from failing to honor roll, but my difficult child became addicted and eventually went on to use meth. My son is doing great with it, but he has never been a difficult child, just easily distracted, but has always had a very sweet personality.
I was prescribed Adderall before and it was like being on speed. I am not sure putting a kid with ODD on stimulants is the right way to go. I have had MUCH better results with the ODD using antidepressants. Now she can't help but walk around with a smile on her face and things that normally would have set her off are rolling off her back like a normal person. But, again, this has been my experience in living with an ODD child.
I am so sorry you are having to deal with this, too. It's not a fun way to live. Do you have a county mental health department?

 

[Shari]

Honestly, if you can go to another doctor who will prescribe the Tenex while you work on the insurance company, I'd do that. The insurance appeal takes some time. And honestly, I don't see the insurance company agreeing to pay for the Intuniv if the Tenex hasn't been tried. My insurance company's initial response was a list of medications to use instead of Intuniv, and Tenex was on the list. Our problem with Tenex was that we weren't able to give a small enough dose as to not knock my son out - the slower release of the Intuniv seems to alleviate that problem.

I guess I'd also not beat around the bush with your doctor - tell him/her that you're going to find someone who will prescribe the medication in the form you can afford. You don't have to be ugly about it, just say you really feel like you need to try this avenue until you can get Intuniv covered by your ins. That alone may be enough to change her tune.

 

[TiredSoul]

PG,
I think I agree that the stimulants make the ODD worse in our case too. One of the other options was to try an antidepressant medication, but that scares me. Actually medicating him with stims scares me too. I wish we did not have to depend on medication, but I just don't think we could handle him not being on something. Yes we do have a county mental health facility, but it seems like I checked that out quite awhile back and they didn't take our heath insurance, just medicare or something similar.

When he was first diagnosis'd with ADHD, he was primarily hyper/impulsive and it was hard to know for sure about the inattentive part because of his age. I never thought he had the inattentive part, but now I notice things like - he does not appear to listen/hear you when being spoken to, he loses things and forgets things all the time, is disorganized. Mostly he just does things to annoy everyone. He has been in trouble at school so far this year for playing with others, hands on others, playing with his pencil, turning lights on and off. When he is not on medications at all, he constantly licks/sucks on everything - at one time we thought maybe sensory issues - but I think the Occupational Therapist (OT) person at school ruled that out. He was pulled from the class at times during the day to do "heavy work" - pushing, pulling, lifting, moving things. It helps when he is more active. He is extremely smart, high IQ, but his scores were not high enough for the gifted program. Sometimes I wonder if he just didn't understand the format or what he was supposed to do.

Shari,
I think you are right, I just need to tell his doctor like it is. So far I have been nice and accepted her answers - I think it is time I push this.

Thanks!

 

[TiredSoul]

I just got off the phone with our insurance company - they informed me that the Intuniv has since changed from a level 3 to a level 2 formulary brand -- so now instead of us having to pay 50% of the cost of the medication, it will be a co-pay of $35.00!!! Whoooo hooooo! AMEN! I am thrilled. Now our doctor just needs to write the prescription!

 

[Shari]

Yeehaw! Wahoo!

I hope it works for you!

 

[TiredSoul]

Yeehaw! Wahoo!

I hope it works for you!

Me too! You don't know how badly I want this to work. What I am wondering now is - can we decrease his Concerta over time and eventually go off of it? I hope so.

 

[barneysmom]

Wahoo Jules! This is great news.

by the way I know what you mean about being "nice," then having to play a little hardball (even though you won't have to in this case). It's so draining to come up with the brain cells to play hardball -- glad it worked out.

Jo

 

[LisaC]

Hi Jules,
I just found this website and your thread about your son. Your son sounds EXACTLY like mine's (adhd combined type and ODD). He is 9 years old and currently on Tenex 2mg and Concerta 36mgs. We hope to take him off of the stimulants and just use Tenex. I would love to hear what happened in your case. Please update or email me if you can. Thanks.
Lisa

 

[jal]

Jules, tentex never worked for our difficult child although it was cheaper. My copay for Intuniv is $40. It seems to work well.

 

[TiredSoul]

Hi Lisa,
This is an old post - so I will give you an update. difficult child started taking Intuniv back then in 2010. We started with 1 mg in the morning, then increased to 2 mg in the morning. We tried 3, but not for very long and it seemed like too much. My goal was always to eventually be able to discontinue the stimulant. No such luck. One day without the Concerta and I was remembering why he takes it. The doctor even suggested to have him slowly go off of Intuniv so we could maybe try Stratterra (as that is pretty much the only thing we haven't tried). That never happened either because when we reduced his Intuniv back down to 1 mg it became evident that the Intuniv really was working and we could tell the difference with the reduction. So now we are back up to 2 mg of Intuniv and still on 27 mg of Concerta. <sigh> Sad seeing all that in writing as a reminder of what we have been doing for the past THREE YEARS! Uggh. We haven't found the magic pill/diagnosis/solution. We are still pretty much dealing with what brought us here SIX YEARS ago.

Basically anything we request him to do or stop doing is met with refusal and defiance if it is not what he wants. It's only getting harder as he gets older. I think even if he were to be reevaluated and diagnosis'd with Autism Spectrum Disorders (ASD) or Pervasive Developmental Disorder (PDD) or something else - then what? We still have the behavior -- which is so difficult to deal with.

 

[TiredSoul]

Jal - did your difficult child ever take ADHD stims? How long has he taken prozac? I wonder if that is the route we need to go?

 

[InsaneCdn]

I think even if he were to be reevaluated and diagnosis'd with Autism Spectrum Disorders (ASD) or Pervasive Developmental Disorder (PDD) or something else - then what? We still have the behavior -- which is so difficult to deal with.

Read more: http://www.conductdisorders.com/forum/f6/tenex-instead-intuniv-35877/#ixzz2cfx2sGFm

Then what? What difference does a diagnosis like Autism Spectrum Disorders (ASD) or Pervasive Developmental Disorder (PDD) make?
in my opinion... everything.

If that is what you are dealing with, you need to learn about it in absolute detail. Including from people who have it... people like Temple Grandin and John Elder Robinson. People on the spectrum are wired differently. TOTALLY differently. In order to parent someone on the spectrum, you need a whole different approach. You change YOU in order to change your child. It's a long, slow process, but it works.

Even if the kid doesn't meet diagnostic cutoff for an official diagnosis, just knowing they have traits along that line is a huge help because that means... you have to treat them as though they ARE on the spectrum.

 

[TiredSoul]

I understand that IC, and I have read so many books and researched so much info. I still don't know what to do to deal with the behavior. For example, I don't know what else I can do or say to get him to not hit his little brother. I can tell him over and over and talk to him until I am blue in the face and he still does it. He requires constant supervision. Constant. I can't even leave the two of them together so I can take a shower - and husband does not get it at all.

School will be starting soon and so his behavior is ramping up and I have no idea how to resolve that. He has hated school since pre-school.

He wanted something from the car earlier today but freaked out because I would not go get it. He makes everyone else do everything for him and melts down if he doesn't get his way.

I don't know how knowing it is one diagnosis over another is going to help us eliminate the behaviors. I already know he can't control most of it. It doesn't make it any easier.

 

[InsaneCdn]

Simplify your life. Provide the most structured, most predictable, most routine environment you can come up with. Do NOT give him a string of choices. Most of the time NO choice, or yes/no choice, but with due consideration for where he is at. If he hates veggies, you don't make eating veggies a no-choice option (trust me, it doesn't work). But find a healthy breakfast he will eat and enjoy, and he can have that every single doggone morning. To make life easier, do the same for the rest of you (not the same breakfast as he has, necessarily, but the same thing every day)
Bedtime, and bedtime routines, and getting up in the morning, and meal times... predictable. If there are certain treats that happen weekly such as a special meal, make it the same meal on the same day, either every week or every month. Reduce the number of toys. Restrict or remove electronics (for everyone, if this is going to be done, or it doesn't work). Seriously reduce the number of "outings". It sounds brutal, but it's kind of like an elimination diet. Take everything out, then add things back one at a time... it helps in figuring out where the real problems are.

If he's anywhere close to on the spectrum, then he probably has sensory processing issues, which you won't see or understand but which generate HUGE overload, and often trigger problems.

 

[InsaneCdn]

p.s. what I just said above? the "books" don't tell you. Nobody wants to come out and say that this kid with a problem needs to be the controlling factor in your life. I kind of agree... in the long run. But in the short run, it may be the only answer to getting answers.