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Tenex ( Guanfacine)

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Hi, I am usually on the PANDAS site but I have a question for this site. My DD9 has PANDAS. She was just diagnosed with ADHD also. Her Neuro put her on Guanfacine. I think that is the generic for Intuiv. HAs anyone used this before? She is taking 1/2 pill for 5 days then she is to up it to 1/2 pill twice a day. So I am looking for any information I can get. Opinions on it, side effects anything. Thanks for your help.

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We tried Intuniv and it did not work for us. My daughter's tics got worse and she developed fears and had strong OCD issues. Attention was not improved. I do think several other parents are using it on the PANDAS forum and having some success. You might want to post there.

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My ds 8 tried intuniv in Sept (he has PANDAS also) but he kept falling asleep in school in the afternoons so we stopped. It did help get rid of his tic though. Also, the doc suggested we try it in combination with a stimulant ADD drug as they can work well together but haven't got that far yet! Still pondering the next move as his weight is slight and I don't want him to loose any more weight.

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We've used Guanfacine for three years and it made a huge difference for our son. He is ASD and has an extremely short attention span and hyperactive. We tried every imaginable drug for ADHD and it was all a big disappointment. Then we tried Clonodine which helped but he was on a rollercoaster with that one. It was then we tried Tenex...a great help for him. We had to start on a very low dose 1/4 of a pill because he was falling asleep but he is now at 1 pill in the AM and then 1 pill in the PM. We tried to go higher but he had bad headaches. Without it my 11 yo son would be very difficult to manage. At least we can now gain his attention albeit breifly for redirection. Without attention there is no learning!

Good luck!

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I had two questions about Tenex:


1. I experienced agitation on clonidine, and have heard that Tenex can do the same. Did anyone here have a *bad* experience with clonidine (in terms of more irritability etc.) but find that Tenex was tolerable?


2. How did it affect your sleep quality? A friend said his sleep quality was far worse on Tenex (no problem with sleep onset/duration), but I thought it was meant to help sleep.

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Please, please, please know that while most children seem to do well on Guanfacine (Tenex), some have serious adverse reactions.


Every doctor I've spoken with holds that Guanfacine/Tenex is pretty much the safest ADHD med around, however, Guanfacine, even in small doses, has been documented to cause mania in children with ADHD. In most of the cases studied, the child also had Tics/Tourette's. The study was done in by UNC Chapel Hill Doctors in 1999. No such study has since been done (at least none that I can find). And of course there is always the list of "less common" side effects, documented mainly in adults.


The makers of the drug are clear that if this drug is prescribed to treat ADHD in children, it is done so "off label", meaning the drug makers have either not done or they have not published the results of any testing done in children under age 12. Since the drug has been so widely used to treat children with ADHD for many years, one has to wonder why they would not simply go ahead and formally test the drug in children, then market the drug for ADHD. Why, indeed?


My advice is to try Guanfacine but understand exactly what to look for in terms of possible side effects ahead of time. If you don't, you could end up thinking your child somehow also developed other unrelated psychiatric or health issues, when in fact they could be caused by the Guanfacine.

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