Hi all,

I believe Chemar mentioned the med Abilify in an earlier thread. The neuro did take Luke off of clonodine and prescribed Abilify instead. But, after three days, I have to say Luke feels terrible. His major motor tics are returning. Plus he is very nauseated, very irritable, angry, shaky, agitated, sweaty, clammy, etc etc etc.

We thought it was the new med, but then I remembered we should have probably tapered down the clonodine even though the dr didn't mention it. Any opinion? Would the quick cut in clondine be the likely culprit or the new Abilify. Anyone here have personal experience with Abilify??

I plan on calling the neuro tomorrow, but thought I'd ask here for ideas first. I'm a pretty strong believer in the shared experience of our families, so I like to ask around. Of course, I also forgot to only fill a partial rx when starting a new med and now we have a ton of them if he goes off!!

The dr did also keep a moderate dose of Xanax until we find the right dosage of the Abilify. But, I have to say, the stuff is amazing for his vocal tics (screaming, coprolalia, grunting...pretty major stuff)! I've never seen anything work well before this. And the combination with clonodine DRASTICALLY cut the motor 'head banging' tic too.

So, here's my next question...is Xanax ever used as a primary med for TS? I understand that it creates dependence. But lots of people with serious illness/injury use major pain meds that create physical dependence, and it's just acknowledged for them and they go about their life with less pain. Would it be appropriate to use on an ongoing basis?? Would the doctor think I was crazy for asking?? Could dependence on a med be worse than Luke giving himself a concussion or permanently damaging his vision??

Please share your insight.
Cheryl

P.S. If you haven't noticed, I do tend to be longwinded! Thanks for indulging me!

Cheryl, Clonidine is usually tapered very slowly to reduce rebound effect. Those symptoms that you've posted could be part of that, but I really don't know how adding the Abilify would figure into it all.

You said "very nauseated, very irritable, angry, shaky, agitated, sweaty, clammy"
I'm no doctor but that sounds as if it's from the withdrawal of the clonidine. It is a blood pressure medication originally. How's his blood pressure??

http://www.tourette-confusion.blogspot.com/

This one is very old, but it's specific and it's also a Leckman/Cohen study. I'd have to trust that they knew what they were saying lol

It's difficult for me to comment on the Xanax. Xanax is a real pain to get off. This subject has come up from time to time over the years. I don't really know what the answer is particularly if it's helping. I would really worry about dependency though.

Have heard good things about Abilify around the TS community for those who've needed it. Better side-effect profile than all the older neuroleptics and newer ones before it.

I'll just put these here too, 'cause there's a few things in them that might be helpful.

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
http://www.ajhp.org/cgi/content/abstract/60/23/2437
EDITED TO NOTE: This last article above is really regarding treatment in schizophrenia. I didn't post it because of the doses list, I posted it because it shows how abilify is metabolized and that's handy to know. Doses for treatment of tics in Tourette Syndrome is usually much lower than doses used to treat schizophrenia.

Hi Lara,

Thanks for the info! You always have such good research tucked away!

I could just kick myself for not disobeying the neuro. He specifically said to discontinue the clonodine immediately and start the Abilify the next morning. Errr. Hard to rely on a dr who isn't concerned by withdrawal of a blood pressure med! We haven't checked his blood pressure, but will tomorrow.

We're at the 72 hr mark and I hope it gets better now. But, I'm disappointed to read about the time to get back to previous tic levels.

I really do hear you about the Xanax...but we have tried so many things over the years. The neuroleptics have just never worked well at all for Luke. And neither did the clonodine by itself years ago. It's been stunning to see the dramatic difference while taking Xanax. And he feels so much better in public - not 'suffocating' and 'crazy' around crowds. But then, it is a panic med, right? So it makes sense.

Thanks again,
Cheryl

He may have expected that adding the Abilify immediately as the Clonidine was ceased would prevent any rebound??? I don't know.

I remember when my son was changed from one atypical to another, they didn't slowly withdraw the first one. They added the 2nd one at very low dose and then ceased the first one pretty much immediately.

What I don't know is how it works with Clonidine when adding a neuroleptic. Know what I mean?

I suffer, and I mean suffer, from panic attacks. The only time in my life when I feel as if I'm not on ALERT is the times in my life when I've taken drugs like xanax short term. However, I made a decision many, many years ago not to go down that route.

If you trust your Neurologist and he knows you and your son and what's been going on, then go in there with a list of questions for him tomorrow. If I recall it was the ER that prescribed the xanax originally wasn't it? The Neurologist is maybe just waiting out the time to get the Abilify kicked in. Then your son might not need that extra calming that he's getting from the xanax.

Hang in there,
Lara

Cheryl,

This sounds like it's the clonidine. Stopping clonidine immediately is very dangerous and problem causing. Doctors did this to me when I was little and it made things a complete mess. When I went off all meds about 1 1/2 years ago, Clonidine was one of them. I was on about 2 pills of the .1 mg tablets a day. I spent atleast two months going off that slowly.

You may want to consider calling the doctor and having your son go back on the clonidine. After things are settled back down try backing off of it very very slowly.

Carolyn

Hi Cheryl
yes, I agree that it is likley the effect of a rapid switch of meds without first withdrawing the first correctly.
I just looked it up in Your Drug May Be Your Problem and the symptoms fit with too fast withdrawal

the rule of thumb for "psychiatric" meds (I hate that description ) is to go down 10% every 10 days or withinn that range.........I know some docs say go down a third every 3 days


Try to encourage him to drink lots of water and also maye take Epsom Salts baths which helps with the detoxing (2 cups of epsom salts dissolved into a tub of warm water)
Hot freshly squeezed lemon juice also helps (half lemon in a cup of boiled water, with or without honey)

I sympathise as my son had awful withdrawal symptoms from his med cocktail even tho we did do it slowly.......some people's bodies are just very hypersensitive

anyway, I do hope Luke feels better soon and that things will stabilize. He really has been thru a lot lately, as have you (((Cheryl & Luke)))

I do not have experience treating my children with Abilify, but I work in Special Education. A young man with Autism/OCD just had a very rough time going on and then off Abilify. It cut his OC and "stemming" only slightly, tics increased a fair bit, and his mood was SHOT! He was not changing meds.
I do have a child on clonidine. We have not removed this med and she is low-dose, so I'm not very familiar. I do know that the clonidine is a big help for her, and am even afraid to remove her low dose quickly if we had to!

Yes, V'rie
In that book Your Drug May Be Your Problem it is super emphasized about how all of these meds must be tapered of and also started very gradually

Cheryl. did the neuro start him on a high dose of the Abilify or was it low and then to work up
that seems to be as important as tapering down slowly



I really have heard from a number of people with postive reports on Abilify so hopefully this will be ok for him, but, as our own experience showed, different people react differently to these meds and it often is trial and error to find the right one........

if Luke decides he doesnt want the Abilify tho, PLEASE do withdraw it slowly.
I am really surprised the neuro didnt do that with the clonidine..........even if it was a low dose.

sure hope Luke is feeling better today.

Just to make it clear... we still havent' seen neuro about the tics with our oldest it's at the end of the month. We tried Abilify the first time about a year ago and he had alot of EPS symptoms--he was jerky, sleeping,shaky, and could hardly stand up afte the 3rd day we stopped. Then we tried risperdal and the tics didn't change at all, plus his mood stayed really manicky his anxiety got worse, but he gained about 20 lbs which was ok since he was really skinny. Then sent to seroquel and the tics got really bad, he got really depressed and suicidal. So then back to risperdal with xanax and ativan as needed for severe agitation. Now we went back on Abilify and things are good. He does take Depakote along with it. I don't know if the weight gain is what made the difference or what. His tics really only come out if he's really upset or anxious. His tics are mostly vocal and just jerking his head and arm. We havent' used the xanax anymore; it seems worthless and once it wears off after the 1-2 hours he's more anxious then when the panic attack started. We've found it more helpful to talk him through it and use the relaxation skills and ativan if needed