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I thought it was over


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My ds had a rough time with PANDAS a while back, but has been healthy and tic free for about a year and a half. (With the exception of one tic explosion for a few days during a dramatic allergic reaction to a cephalosporin antibiotic...could have been either the immune process or the constant Benedryl for 10 days ).

 

We all caught a cold virus this past weekend and his jaw stretching tic has returned with a vengeance. His strep test was negative, so no easy access to antibiotics.

 

I naively thought it was all past us, and now I'm panicking.

 

What should I do?

Any chance this will pass with the virus?

 

Any chance the tics are related to the discontinuing of a steroid inhaler he had been on for 6 months? (Doc discontinued it 2 days before tic onset)

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We are about 1 1/2 years clean from a major flare. My ds9 had the stomach flu in the beginning of Dec. Two weeks later....IT'S BACK. We are still symptomatic.

 

I missed it initially because A) It on the mild side and I thought perhaps he was bored/pent up energy over xmas break. B) This time around, it is not 24/7: another reason I thought it was just a flukey phase.

 

I realized that it was truly a flare when the mouth tics appeared and school reported same behaviors at school. His main symptom is mood/anger/fixation/unreasonable

 

We are about 5 weeks into this, we finished abx about 5 days ago and I have not seen much improvement.

 

I am getting worried.

 

I had hoped the worst was behind us......... :blink::wacko::(

Edited by qannie47
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i read a recent post on this forum about essential oils and when I googled it, internet is full of personal stories how these oils helped with, specifically, tics in pandas children.

all stories seem to repeat the same basic narrative and could be an advertising ploy BUT I haven't tried them myself and cannot say it either way. they may be worth a try?

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My guy is 9. I spoke with the guy whom is flooding the internet with testimonies....My own personal take was that his story was too good to be true. When I asked him some harder questions, he got angry and defensive....That being said, I do not have any personal exprience witn essential oils so I can not weigh in.

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I remember the disappointment of realizing this is not over, and then the realization that it may well never be "over". Now my goal is management and slow healing to obtain a long term remission and reduced symptoms related to new infections. This new attitude makes management and coping with a new flare much easier for me and kiddo.

 

Yes, the tics could be related to the discontinuation of the inhaler. The flare may pass with the virus, or some time after recovery from the virus. I have noticed it takes a little longer for the flare to pass after each infection kiddo has.

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