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Hi,

I'm usually over at the PANS/PANDAS forum but DS17 does also have an underlying TS dx. 

Tics more or less controlled w/PANS treatment and 2 IViGs, but has remaining loud yelling tic (screaming one or two words, sometimes coprolalia).  We are wearing earplugs.

Do we just live with this, or is there something else to try??  He's already been on almost every psych. med, still on some, also on Functional Medicine regime for PANS with enough supplemnts to choke a horse. Has CBT therapist.

-Has not tried L-carnitine or taurine, which I saw mentioned in past threads
-CBD oil 25mg./2x day works so-so
-Considering deep brain stimulation or tDCS is we can find a place

Thanks!
~TJ
(DS17: dev. disabled, PANS, ADHD, OCD, Anxiety; 2 IvIGs, one psych. hospitalization)

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Hi

I am hesitant to comment when there is PANS involved as there are so many variables included then....but when my son had loud yelling tics, l-carnitine was very helpful.

We also always found acupuncture, Epsom Salts baths & Bach's Rescue Remedy helpful when any tics ramped up

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tj21 -- I know this must be so difficult. And first, let me apologize that I have not read your other posts where you may have discussed some of the additional efforts you have going on. Since you already have a functional medicine practitioner who is leading the way, and as Chemar mentioned, there are so many factors that could be involved, I'll just share a couple of thoughts that may or may not be a fit.

It is possible with major immune issues to become hypersensitive to chemicals and allergens. I used to watch kids in the office of an environmental physician and saw a high pitched screeching tic triggered by formaldehyde exposure and a screaming tic triggered by mold exposure, etc. A food can also be behind it. Obviously you have a complex situation but do you think there are any environmental influences that may be playing a subtle role? For this, think in terms of an allergy to the nervous system--something doctors don't usually consider.

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Thank you! Yes, we are working on environmental triggers as well, and do know DS17 is sensitive, and has a dysregulated immune system that we've worked on for 5+ years. 

When he flares like this, it's usually after a cold virus or exposure to other bacteria/viruses, or toxins at camp (cabins.) For camp we ramp up preventative measures prior.

Just haven't been able to help this particular tic as much as we'd/he'd like. Some is probably habit but much is involuntary. Will retest ammonia levels (were elevated), and there's some concern about sulpher activation (taurine, glutathione) so tinkering with those next.

~Tracy

 

Edited by tj21
typos

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I'm glad you have areas to focus on--tinkering. I know it can seem like a full-time job.

Camp cabins are often also musty and moldy, just throwing that out--though they may have been new, or treated for mold and hence toxic in that way. It's great you have preventive measures--and that he can go to camp. Please let us know what you discover, Tracy.

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