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

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AlwaysWorriedMom

Doctor was wrong...I was right. Now what will happen?

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In April 2018 my (then) 4 year old son had his very first tic episode - 2-3 days of mild blinking, which promptly went away for weeks or months. Then he had 2-3 days of coughing, which also went away for weeks or months. I brought him to his Pediatrician who told me that tics are very common in kids and he expects them to go away completely by the end of summer 2018. 

The tics continued on in the same pattern - either mild blinking or mild coughing for 2-3 days, then nothing, so I didn’t worry too much as I trusted our Pediatrician. 

Then on July 11, 2019, the tics started again and didn’t go away. They were more frequent and we found his behavior was different - he was getting angry over everything. He was just different. I called our Pediatrician and reminded him that this had been going on for almost 1.5 years and he casually said “oh, it’s probably Tourette’s,  keep an eye out for ADHD or OCD as they’re very commonly associated”. Needless to say, my husband and I were absolutely devastated and spent the next week desperately reading and searching for ways to help our son. 

We did allergy tests, muscle sensitivity tests, functional neurology, biomagnetics, paleo diet, and tons of supplements. There was mild improvement but on a bad day his tics were every 10 seconds or so. 

Then I made the connection between his symptoms and pandas. While he has never had strep to my knowledge, I called our pharmacy and it turns out that my husband had strep in April 2018 - the EXACT time this all started. We went back to see his pediatrician and he reacted so rudely and aggressively and told us that it’s impossible for it to be pandas and he would have severe OCD. He refused to listen to the facts I had found online and stubbornly insisted he knew better than the pandas network. 

We then went to a Pediatric neurologist who agreed to do blood tests. Guess what it found - strep antibodies! He had his tonsils and adenoids removed on oct 8 for an unrelated problem but his ENT agreed to try antibiotics (this was actually a huge deal as I had asked several other doctors who refused to try antibiotics without a positive throat swab. We live in Canada and doctors here are very careful about antibiotics).

So he has his surgery and starts the antibiotics (amoxicillin). 3 days later, his tics are pretty much completely gone. He had a rash on his hand that had been there for over a month and it disappeared. He now has maybe 5 tics a day at most. Our lives have completely changed because of this!! So clearly it was pandas and not Tourette’s. I haven’t dealt with our Pediatrician yet, but that will come in time. 

So now what happens? He only had 12 days of antibiotics - is that enough?? An infectious disease specialist said it’s 50/50 about whether or not it’ll come back. I’m staring at him all the time and it’s so stressful to live like this. 

He was supposed to have his dental cleaning before his surgery and I cancelled it. I’m honestly scared because of what I’ve read and how that triggered another episode for other kids. 

Also, my other son (8) started doing this weird eye roll thing around the same time this all happened. We took him to the eye doctor and he said it’s not vision-related and it seems like a habit. Could it be a mild case of pandas too? That’s his only symptom but that seems too unlikely to be a coincidence, right? I’m going to ask for a blood test requisition for him too when we go back to the neurologist. 

So I guess I’ve written this incredibly long, boring post in hopes of finding out what will happen in the future. It seems like my son’s case was much milder than most, and he’s never had an active strep infection to my knowledge. Does he have a better chance of full recovery?

if you’ve gotten this far, thank you for reading and I look forward to any and all comments and advice!!

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I would say the eye rolling is related.

Yes you explaining mild symptoms of strep related problems.  I would deal with this naturally after you finish the antibiotic, to make sure you got rid of all of it. I assume some people here can suggest good supplements, but I can think of Blis K12, Colloidal silver, thieves oil etc right on the top of my head.

In my experience with my entire family, the unvaxed kids had much fewer strep episodes.  Of course this could be contagious, but somehow I keep on hearing about strep and vaccines link; especially about a month after vaccination.

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