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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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My DS (10) was diagnosed by our pediatrician with PANDAS and is currently in the first month of a 3 month treatment cycle on zith. He has several motor and vocal tics and a range of anxiety and sleep related issues. This morning we took him to a pediatric neurologist for a second opinion, and as we suspected she discounted the PANDAS diagnosis and said all the emotional/anxiety issues were caused by stress from the tics. She prescribed clonidine to help him sleep and said it may ease the tics as well. Curious if anyone has experience with this? We are sticking with the abx but are worried that if we are also giving him clonidine we won't know if the abx is working. Part of me thinks it doesn't matter as long as the tics go away and my happy child comes back, but part of me really wants to know the root of the problem so we can be prepared for the future.

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Ashley -- you are right that if you are trying to figure out the root cause of the issue, that adding the clonidine wont answer that question. However, I can tell you that in the time i have been dealing with this, i have pressed many doctors, who fully support the PANDAS dx, for other meds we can use to address the situation -- Clonidine is always one that comes up (as opposed to, say, ADHD stimulants -- i find PANDAS docs generally don't like those).

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Clonidine helped DS18 with sleep and measurably decreased the tics. However, the initial amount prescribed was way too high and he couldn't stay awake even after taking it for about a month--also had a slight decrease in "sharpness" of thinking. I tapered down to half the dose and now he is doing much better (although he claims to miss the feeling of being "knocked out.") Otherwise, I don't see any negatives to it.

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DS15 has taken clonidine at night now for almost 5 years. It has been a life saver, at least a sanity saver. It calms him down (from his tics) and gets him to sleep. He has tried it during the day, but it makes him too sleepy so cannot take it...unless we are on a road trip or something. It has no side effects that we can tell. Dosage for him is a .1 gram tablet, and we sometimes cut it in half if he is doing well. So, its a very small dose.

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My son takes the extended release clonidine at night. He was waking up at least once an hour. We tried the regular clonidine but he was unable to sleep through the night. He takes .3 of the extended release, which is a big dosage but at one time he was able to take .2. I am hoping to take him back down but ever since he had a double ear infection last October, I have not been able to take him back down on the lower dosage. I have currently got back some testing on my son that indicates he has high norepinephrine levels. Clonidine will also help to lower these levels.

 

My son also has vocal tics and takes Intuniv during the day time. He was switched to this medication when the clonsapam stopped working for him. Intuniv also helps regulate serotinon and dopamine levels in the brain. My son has had problems with this also.

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Use for sleep here as well. Have not noticed side effects other than sleepiness. You could trial the abx 1st- then down the road try adding in the clonidine.

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