Bad experience with Tenex | ADHD Information

Thanks for the kind and supportive words, it really helps! It's funny, when our son finally came out of his stupor around 6 this evening, and I heard him squealing, being goofy, and all the other silly behaviors that usually annoy me, I was sooo happy.... I thought, MY SON IS BACK!!! I know we will work this out eventually, and I am hopeful we won't have another day like today. But, if we do, at least I know I have this board to vent!

We have another appt on the 25th of this month, so we'll see then what's next...I'm thinking of maybe suggesting going back to the 10 mg. and then just have him take a bump up of the 5 mg short acting around 1 at school...see what the doc says.

 

Kathleen,
I've been struggling with the same thing. 1mg of tenex is just too much for my son. The doc wants us to try and up to 2mg by the end of July, but it doesn't look like that's going to happen.

For the past couple of months he's been taking 1/4mg in the morning and 1/2mg at school. Off and on I've tried to up that to 1/2 in the a.m. and 1/2 at lunch and even stick it out for a week or so. Every time the emotional breakdowns got worse and worse.

He does fine emotionally with just 3/4mg total. I started thinking that it wasn't really helping, because his teacher said he still wasn't focusing at school. That is why I kept trying to up him to the whole mg. But last week he had strep and I missed one dose on Monday, (he couldn't swallow his pills because his tonsils were HUGE).

The next day I gave him a whole mg and he was a wreck all afternoon and had nightmares all night long. So I decided I was going to just stop meds. I was so sick of it all. The roller-coaster had gotten to be too much. I didn't give him ANY meds on Wednesday.

Guess what, he was crazy: couldn't focus, couldn't sit still, running a mile-a-minute...and I remembered how he had been before we had started meds. So, I am going to go against the doctors wishes for now and just leave him at 3/4mg. We may figure out a better solution sometime over the summer, but I'm tired of the emotional wreck he's been this year bouncing from one med to another. But I also can't deal anymore with the wildness of him off all meds and his impulsive/hyper behavior IS better on the tenex.

I guess what I'm saying is that it might have been better to just keep him at 3/4mg for a longer time (which I'm doing now). Ask your doc if you can do that. Our paths have been on a parallel course in the past, so it might be that our boys are similar in this as well. Good luck and let me know what you decide/find out.

Thanks for your post OneOrtheOther. It really helps to know we are not alone, doesn't it? I am not going to give him any more tenex at this point, it was just too upsetting to watch him go through what he did. I applaud you for going against doctor's wishes and keeping your son at what you think is best...you know him better than anyone, and we, as moms, have an instinct which I think sometimes has to  override medical opinion. And if we err, it's better to do so on the side of caution!

 I do have a question for you - is your son on any other medication besides the tenex? If so, what was your reason for adding the tenex? After seeing what happened to our little guy today, I am thinking that the side effects I was trying to lessen were no where near the problems that the tenex caused. This sure is a long and winding road, isn't it???

Actually, ds isn't on any other rx meds right now. His response to stims was horrible. We were trying to get him to 2mg of tenex so that we could try the stims again. But I just don't think I can do it. Maybe when he's a little older and can articulate his feeling better. I just can't stand it when he's crying and crying and can't explain why.

On the other hand, I am giving him 1/2 pill of Attentive Child along with the tenex. It's a supplement that includes DMAE that works similar to stims. I've read so many posts about how DMAE aggravated some kids, but with the tenex it seems to work. The dosage is supposed to be 1 pill/day, but my son was hyperfocusing too much with a whole pill and still having night terrors.

I'm just as leery of supplements as I am of rx meds, but I'm grasping at straws right now to try and find something (anything) to help my son. I've felt exactly as you do about the side-effects not being worth the benefit. Especially when there isn't much benefit to see.

Stopping the tenex for a day made me realize that he IS getting some benefit. I just can't bring myself to give him more than the 3/4mg. He might be a little bit calmer during the day with 1mg, but the afternoons are just too distressing. I really wish we had a specialist in the area. We're still on a waiting list to see a child psychiatrist in the next county over. And I just don't trust the ped to make good decisions any more. He doesn't have to live our life, WE DO!

Good for you to make a stand. It really isn't worth the heartache. I'd rather start fresh than to continue trying this hit-and-miss approach.   
I am sorry to hear that your so is having issues on the tenex.  I agree with Logan's mom,  it could be that it's just not the right medicine or they started too high or didn't ramp up appropriately.    We we started,  we did .5 mg in the evenings for 5-7 days and then added .5 mg in the AM.   Any time we made adjustments,  we have done it slowly over time.

We decided to add tenex to the 15 mg of Focalin XR our son is taking in order to decrease the anxiety and overfocusing he had been experiencing. Yesterday he had 1/2 mg. in the AM and another 1/2 mg. 5 hrs later. Things didn't go well, he was tired, which we expected, but also very emotional by the end of the day. He just sat there sobbing and said he didn't know why he was crying. So this morning before school he took another 1/2 mg. and when I spoke with his teacher around 11:30 she said he had a rough morning and cried several times. So, that was enough for me! I called the nurse and told her not to give him the noon dose. The bus arrives half an hour ago and he was sound asleep in his seat, and now he's asleep in his bed. I know you are supposed to give it a few weeks for the side effects to wear off, but this is too much! So, he's off the tenex now.

I just want my happy little boy back, misbehaving or not! I feel so guilty giving him these pills and seeing him go through this. It was like a dream come true when he first started the Focalin back in December, now it seems like a nightmare.

How much is too much? I'm at the point of wanting to stop the medication all together and just let the school deal with his behavior.

I'm so sorry! My heart really goes out, and I can easily put myself in your
shoes. I have felt the same way. I know many on this board do give tenex
or intuniv with the stims, and with success, but it's something I want t
avoid. I'm having so much trouble just managing the stim stuff that I
might fall apart trying to add another med. Anyway, you know others can
do it with success, so you gave it a try- trial and error- now you can
move forward with more knowledge. Your heart was in the place of
helping your son, so don't beat yourself up- your a great mom for doing
all you can to help him! I felt like you did after my son had a bad reaction
on the Focalin XR, and i did send him to school for a few days without
anything so we could sort it out. The reports from school were so bad, he
was barely getting through the day. Finally when they said he couldn't go
on the museum field trip unless I came, i had a wake up call. They are
highly specialized teachers in a small special needs school, and were so
kind and upset in telling me he couldn't go. The fact that these excellent
teachers, in this specialized environment can not help him and his
behavior made me realize the severity of his ADHD. He *needs*
medication to function. I ended up sending him the rest of the week on
the short acting Focalin, which is what we started with back in December.
The rest of his week was great! After speaking to his doctr and realizing
he doesn't need to be on XR's , and its fine to keep him on the short
acting pills if they're working for him, I decided we'll stick with this as
long as we can. the xr's are supposed to be smoother and prevent the
ups and downs, but they were having the opposite effect on my son. Now
that we revisited this initial med I can see how much better it is for him-
at least for now. Maybe that is an option for you? or maybe your son can
function in school without meds as you suggested. Still, whatever you
decide to do, remembr your always trying to do what's best, and you will
find it. Hang in there ;)

My sons doc perscribed Intuniv ( tenex long acting) with my sons Concerta. He was brought up to 3 mg too quickly and he couldn't handle the side effects. Now we are back down to 1mg and doing better. still have that afternoon emotional thing. we have been searching for years for the right answer but the road is long and hard. I wish You luck again

 

I'm so sorry to hear the Tenex isn't working out!  I know you had high hopes for it (and me too!)  It's possible that the doc started him off on too high a dose and that he needs to ease up slower.  That may be why he had such an emotional reaction??? But you may be right and Tenex just isn't the medication for him.

Hang in there!  I know how hopeless it can feel, but stick with it.  It WILL get better!  The fact that you saw such good results in December is a really good sign.  That usually means the solution is out there it's just a matter of finding it.  Hopefully your doctor is good and can make adjustments quickly to get this under control.  (I can't remember if you said you like the doc or not...my memory is so bad! )  I'm sending all my positive thoughts your way!