Experience with Clonidine

[dut]

I was just wondering what folks' experience is with clonidine.

 

DD12 has had severe insomnia for 8+ weeks. We 'think' that she's PANDAS free. Certainly no PANDAS symptoms other than this and even her previous sleep PANDAS issues were very different. Seemingly PANDAS free for 18 months or so.

 

Sleep dr. Has suggested clonidine 0.1mg at bedtime to get her to sleep and help her reset.

 

She also has POTS which causes postural hypotension and I'm seeing hypotension as a side effect of the clonidine.

 

Just interested in anyone's experience good, bad and ugly.

 

Thanks

 

 

 

[qannie47]

I will say upfront that I don't have a personal experience with clonidine. I do have a friend though whom started with a low dose for sleepand she kept having to increase dose for desired effect/sleep. It got to the point where her dose over the corse of 1 year increased rather dramatically and she was totally dependent on it to sleep. The new dose required was leaving her groggy the next day. It took her brain several weeks to adjust when she decided to go off and try other approaches. Many nights of no sleep even without cold turkey.

So there is a concern about brain addiction. That being said, you have to weight the benefit of any drug to decide if the benefits outweigh the neg. Your child may have a completely different reaction to clonidine and the temp fix could be very beneficial. I know my one son whom has add...it took me a long time to pull the trigger...I was afraid of putting a drug with thay classification into my son's system...turns out to have been a game changer for him in a positive way. Follow your gut...

[tj21]

DS16 has been on clonidine for years (originally b/c of tics). It does make him sleepy though he's adjusted over the years. 0.10mg. is a relatively low dose. At times one of his doses has even been half a tablet (tiny!!) 0.05mg. Ask your MD if you can start w/that instead. I think the main issue of going off of it is to taper b/c it's a blood pressure lowering med. Sudden changes might mess w/BP. Again, at only 0.05mg or 0.10mg might not be an issue.

 

It's helped DS16 a lot, though he has a host of other issues going on, not just PANS.

 

Tracy

[JoyBop]

We used to give Clonidine to our son and thought it was very helpful, especially to get him to sleep at night. It was very sedating for him so we never could give it in the morning. We started it again this past September to help us through a rough spot and the most bizarre thing happened. It totally changed his personality and made him into a compulsive lier. It was very severe and destroyed his relationships with both friends and teachers. He was a completely different child. We discontinied the clonidine and his personality went back to normal within 5 days. Just thought I would share our extreme story. Our doctors had never seen anything like it before. We are now using Intunive and it seems to work fairly well in taking the edge off of his agitation and he is able to sit still and relax more.