Has anyone had success with Clonidine?

[Jordansmom]

Well, it's painfully obvious to me that Jordan's tics are not PANDAS related. We were desparately hoping they were, as antibiotics are an "easy" treatment, but this round of antiobiotics has not eliminated his tics. In fact, they have worsened.

 

We met with Jordan's 2nd grade teacher this morning, and it was very painful. She said his tics are virtually non-stop in school, and while they are not (yet) disruptive to his classmates, they are very disruptive to him, and are causing him great difficulty in staying focused and completing his work. She also said she had heard vocal tics, which was shocking to me as we have never heard anything at home, other than snorting.

 

I think it's time we need to face the facts that these are not just going to go away without help, and if we continue to let him go one like this, his academics (and ultimately social life) are going to suffer miserably. Our neurologist did say that if the antibiotics didn't work, we could try a drug like clonidine, which should help with the tics, and as a side benefit, treat some of the ADHD-type behaviors we have noticed as well.

 

Has anyone tried this drug for their child? Did it work? What were the side effects?

 

Thanks,

Julie

[Claire]

Jordansmom,

 

In general, this board is populated by people who either don't want to use medications, or have tried them and failed or had bad side effects.

 

I personally think it is worth spending the time checking out and treating other immune related issues beyond PANDAS--that should help both the tics and the ADD-- rather than trying to treat the symptoms, but if you want to speak with a higher number of people more open to medications, you might want to go Braintalk site is more filled with users using various medications. Somewhere in this thread is the link.

 

http://www.latitudes.org/forums/index.php?showtopic=1749

 

Of course, people hear may chime in directly on your question too.

 

Good luck,

Claire

[Cum Passus]

Julie,

 

Our son was on that patch for 1 month. It was to bring him down from the peak he was at. It worked very well for the body tics but did nothing for his vocal. In fact we do believe it made the vocal worse. After a few weeks his Dr. said we could take it off and see what would happen. We devoted a week to prayer and then removed it, his body stayed calm, and has been calm for 11 months now. He does get more body tics at night when he is tired, but not bad at all. The only thing I noticed different while on the clonidine patch was his hand writing got real bad, he always had really nice hand writing. he got all the side effects listed on the drug, dry mouth, his head hurt for about 4 days. All those went away after a week. He was even able to jog 2 miles while on it. I'm not sure if that drug comes in a pill, I thought it did , but we had the patch.

 

C.P.

[Chemar]

Julie

we have some med experience but clonidine was not one of them

 

however, if I recall correctly, carolyn did have clonidine when she was younger and feels pretty negative about it.........hopefully she will check in to give her personal opinion soon

[kim]

Opps Chemar, I think clonidine/catapress and klonopin are two different medications. They do get confusing

 

Julie,

 

When it became obvious that my son was in pain from shaking his head, we decided to try clonidine. At first I was estatic. It did seem to help the tics, and it definitley helped my oldest son get to sleep at night.

 

I told the neurologist that I was really afraid of the meds used for TS. I had only read of the use of Pimozide (Orap) and Haldol. He reassured me that this medication was in a whole different class, and that it was very benign.

 

After a period of time, it was not working anymore. The Neuro. wanted to up the dose, but I knew there was no way my son could function without being too tired if we did that.

 

That's when I tried to talk to him about vitamins, environmental factors and got Whammied and dismissed from his practice!

 

I slowly weaned my son off of the clonidine, started Bontech vits, digestive enzymes, fish oil, vit C pantothentic acid, extra zinc, magnesiom taurate, calcium with D, zyrtec, Quercitin...etc.

 

I know someone posted recently that her child had been on it long term, and they were quite happy with the results. It does affect blood pressure, so you want to use it consistently and carefully.

 

Oh yea, I tried my youngest son on it for a period of time too. He was having nightmares. I didn't know that was a side effect, until I started searching on the computer, how to get them off of it.

[Chemar]

thanks Kim....i edited!

[Guest]

Hi Julie,

 

I was on Clonidine for over 10 years. I came off of it about 1 1/2 years ago and have been med free since then. I'm very glad I'm not on it anymore. Clondine helped with my mood issues when I was younger which I haven't had for many years. When the tics decreased and the daily teasing stopped the mood issues went away.

 

Clonidine was no help for tics. I didn't like Clonidine, and it made me very drowsy. When I was a child, there were times where I could barely eat my dinner because the Clonidine made me so drowsy. I also was always on a low dose compared to most others.

 

Once your on Clonidine, it's very difficult to get off. Sometimes doctors have you suddenly stop the med and don't tell you to decrease it gradually. Because it's a blood pressure med, this can cause major troubles. A couple doctors did this to me and made a complete disaster. When I went off Clonidine 1 1/2 years ago, I spent a good 2-3 months going off of it slowly.

 

I of course would suggest going the natural route before trying any meds. Just because the antibiotics aren't working doesn't mean other non-med treatments won't work. I suggest taking some time to research on this forum and ask any questions you may have before considering meds if possible. Natural treatments work for many, and it's a good way to start. If I could have a second chance of treating my tics, I would have started with natural treatments instead of the med route. I had very severe tics originally and also what appears to be genetic TS, but natural treatments have helped me tremendously.

 

Carolyn

[Peters_mom]

Hi, of course the doctors will not tell you of natural remedies. When my son was diagnosed with Tourettes he was in pretty bad shape. He would tic in the middle of the night and it would wake him up. He could not read because of the jiggling in his eyes. This was on top of all the other tics and the coughing and gasping that happened many times every minute. For my son, the clonodine helped him to sleep at night so that he could finally get a full nights rest. He had been so irritable which was exacerbated by the tics and the tics made him crabby. He is still on the Clonidine and we had tried Prosaic for the anxiety/tics but this made him too sleepy in the morning. He was a zombie.

 

After three years I have found a naturopath/MD/Psychiatrist who started him on a vitamin supplement. I did not get clear directions on how much meds to taper off and this was a disaster! He is off the prosaic but the tics are much worse. I am starting to look for triggers and will work with the diet. I am trying another vitamin with the same ingredients but is totally organic. I hope that this helps!

 

For us the clonidine was a success for the time being. My son can read and function in school. I am still looking for the natural remedy to help my son be relatively tic free...

 

Kari

[julia24]

Just wanted to add my experience.

 

The Dr. had me try Clonodine once. I hated it. It did nothing for the tics, in fact, it made them slightly worse. And "dry mouth" was an understatement! It was like I had absolutely no saliva & a swollen, hurting tongue all the time. It was awful. I gave it 2 wks & weaned off in 3 days.

 

Like others said, it is a blood pressure med.--that's its primary function. Tic control also happens in some percentage of people. Blood pressure meds can cause heart attacks if stopped suddenly.

 

-Julie