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another update on my son and clonidine


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Hi,

I just wanted to give you all an update on my son b/c a few have been asking and we are at the year mark since he started his medication.

Just a little background. Ry is 71/2, 78 pounds, and almost 5 ft tall. Ryan has had tics since about the time he was three and tourettes runs in the family on his dad's side. He's had all kinds of tics and of course they waxed and waned.

Last year (at this time), his tics started to interfere with his shool work both academically and socially. He ticced a lot and I finally decided to bring him to a neuro. I brought him up to children's in boston and the neuro wrote us a script for clonidine. I started him on it and have increased the dose from 1/4 a tablet to the 2 1/4 he gets now. It was a process for the both of us to see what worked, what doses worked, and how he handled it. Since the beginning of August we have found the right amount/time to give it to him and it has worked wonderful! Now, it's been 7 months of 99% tic free living. The only time he tics is at night when he's watching t.v. or playing the wii and still it's not a lot.

People have asked me about how's he doing and if we're still tic free. We are, and he's a happy well adjusted 2nd grader.

He takes 2 pills at night and 1/4 in the morning. This breakdown has worked great for him, but it took me awhile to figure out this is what worked. At night he take ths 2 pills around 7:00 and by 8:30 he's sleeping. Of course this does have a sedetive effect and that's why he gets it before bed. He gets his 1/4 pill around 7 a.m and he's good to go. He's not tired and he's happy to go off to school at 8:30. I did find that the meds have to be spaced out by 12 hours for it to work the best for him. If he takes it a 8 p.m. I wait until 8 a.m. b/c I like to keep him on a schedule.

He's successful in school and has a bunch of friends. Overall, it's been a very positive experience for us.

As for vitamins he takes a multi with iron, vitamin c with echanicia, and has kid's calm at night. Feel free to ask me any questions, I don't mind answering them honestly.

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great to know the clonidine is working well for your son :)

 

I do just have to add the cautionary note tho that this is *not always* the case and that *some* people, kids and adults, have very unpleasant side effects from clonidine. So just urging everyone to be well informed on the potential for side effects and should you decide to use clonidine, start low and work up slow to be sure there wont be a negative reaction, and so that you can withdraw easier

 

ps clonidine LOWERS blood pressure, and is most often used as an anti hypertension drug, so do also be aware of its bp lowering effects if discussing it with your physician

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great to know the clonidine is working well for your son :)

 

I do just have to add the cautionary note tho that this is *not always* the case and that *some* people, kids and adults, have very unpleasant side effects from clonidine. So just urging everyone to be well informed on the potential for side effects and should you decide to use clonidine, start low and work up slow to be sure there wont be a negative reaction, and so that you can withdraw easier

 

ps clonidine LOWERS blood pressure, and is most often used as an anti hypertension drug, so do also be aware of its bp lowering effects if discussing it with your physician

 

 

Absolutely! I agree it's not always the case, it's just what is working for my son right now. If he didn't need medication to be successful in school and with his peers I wouldn't do it. Of course it affects everyone differently. We are lucky that Ry has done so well with it. I know many people feel it's too sedating for them to function well. However, for Ry, the routine of having his 2 pills at night and the 1/4 in the a.m. is good for him.

FYI, we started slow and worked up slow too.

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Thanks for sharing your experience with Clonidine. It makes me a little less afraid of what's to come knowing that there are options that are working well for some. My ds is only 5.5 and his tics don't seem to bother him at all right now, so we are holding out as long as possible before considering meds. Still, your experience gives me some hope for the future.

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hiya rysmom,

 

Thanks for sharing. I am due for a neuro appointment shortly and am considering clonodine . dd's tics have been severe in the past but I dont feel they are consistantly severe enough to warrent ongoing medication. It has been suggested to me that clonodine can be prescribed as a 'one off' ie: one dose to be given during a 'tic storm' then discontinued once the tics have decreased. What do you think about this (mom opinion!!) , do ya reckon it would work or do you feel your son needs the ongoing dose ?? Just to be clear Im not suggesting anything...Im asking!

 

does anyone else have experience of giving a 'one off' dose??

 

thanks

chap

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