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My 8-year old son was diagnosed with PANDAS last year. He had two somewhat mild episodes with anxiety and ocd where he tested positive for otherwise asymptomatic strep. The antibiotics worked very quickly and took away the symptoms.

 

He was on prophylactic abx until July, but we took him off, since he was doing so great. He did not have any tics during his two PANDAS episodes, although he has had some mild occasional tics since he was 4.

 

In early February, I noticed he has an eyerolling tic. At first, he was doing it 1-5 times/day - or at least that's what I saw. Last week, it suddenly became worse, and now he is doing it several times an hour, and even several times a minute when he is eating. It doesn't bother him at all, and he is very happy and is showing no anxiety.

 

He had a strep test on Saturday, but both the rapid test and culture were negative. I started him on magnesium supplement on Friday, but so far see no change. How quickly is it supposed to work if it will? We live in the DC area so I made am appointment with Dr. L., but the earliest follow up appointment available was middle of April.

 

Do you have any advice for me what to at this point, other than wait? Part of me thinks that I'm overreacting and this could be just a transient childhood tic not related to PANDAS, but the other part is very worried.

 

I would appreciate any advice. Thank you.

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Do tics run in your family?

 

We used to ignore early symptoms of PANDAS. They seemed initially manageable for both parent and child. A little anxiety, some ADHD and tics. We could get by. But then the kids seem to spiral down with each exposure, becoming progressively difficult to manage with high levels of ADHD, ODD, OCD etc. By that point the kids are discouraged and we parents are exhausted and not the best of care takers for our kids.

 

The flip side of that is many kids will experience small flares from an exposure or allergies that subside after some period of time.

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His father says he had tics as a child. Gpookie, how did you manage to get an appointment with Dr L. so quickly? Or did you already have an appointment time set when the tic showed up again? I tried calling Dr L's office again today, and they will call us if there any cancellations but as of right now, our appointment is set for mid-April.

 

I just feel so helpless. I took him to the pediatrician's office today for another step test, since I was worried that CVS might not have gotten a good swab. The rapid test was negative again and the culture will take another 3 days.

 

Again, he is othewise happy and healthy so I am not sure I need to go in full panic mode quite yet, but I worry about it getting worse. The magnesium supplement has not made any difference so far.

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I think that is exactly my problem: I would love to hit it early, but don't know how when we can't get an appointment with a specialist until mid-April. The second culture from the pediatrician's office came back also negative. I also called the infectious disease doctor that we had seen last year after our visit with Dr. L. in the hopes that she could see us, but she just referred us to Dr. L. Sigh.

 

The tic is still so mild and infrequent (except when he is eating) that he went the entire time at the ped's office without showing it, so it is hard to convince the doctor that we have a problem. Her comment was just that childhood tics are very, very common. He is also otherwise very healthy, happy and is showing no signs of anxiety or ocd.

 

Right now I am just trying to watch his diet, continue the magnesium and added back his vitamin D supplement, which I realized I had dropped some time ago. I ordered the Tic Tamer just in case it gets worse and/or if he ever gets bothered by the tic, but don't really want to just treat the symptom as long as he is happy.

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Thanks Wombat140, that's actually a very good (and obvious!) idea.

 

But, this is such a bizarre disorder. In case this information is helpful to anyone else, here is where we are now:

My son's tic has been much, much better. In fact, I haven't been able to catch him with the tic in the last several days although I keep a close eye on him. I thought perhaps the supplements are working.

 

Today, his younger sibling had a well visit at the doctor's and I decided to ask for a strep test, although he has no symptoms at all. Sure enough he was positive. I don't believe he is a carrier, since he has been tested a number of times in his life, and this was only the second time ever that he has tested positive.

 

So, this was probably our trigger. What I don't quite understand though is why my older son had the tic as very mild for a few weeks, then it peaked and resolved (seemingly) while his brother was still positive?

 

We will still keep our appointment with Doctor L. in mid-April, but unless the symptoms re-occur, I am not really sure what she can do for us at that point?

 

Just hoping that things will continue to improve....

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