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AlwaysWorriedMom

What level of symptom fluctuation is normal?

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My son is 6 and was diagnosed with a very mild case of PANDAS.

He had pretty severe tics for 3 months last summer, which went away after we started a 10 day course of amoxicillin. This tic-free period lasted for 3.5 months, and then at the end of January he started doing this mouth stretching thing where he pulls his top lip down. It started getting more frequent so I took him for blood tests and a throat swab and sure enough his throat swab came back positive for strep. We started another 10 day round of amoxicillin and initially the tic went away completely, but then a few days later we noticed him doing it again while we brushed his teeth and read him a bedtime story. Just those times though. I thought “hey, I can live with that” but just to see if it got him back to 100%, his doctor agreed to try a 10 day course of clavulin with some additional amoxicillin added. It didn’t seem to get rid of that last minor thing so we just understood that this is what it is now. 
 

But now I don’t know what to think, because he came home from school yesterday and was doing that mouth tic pretty frequently for a few hours and he’s still on antibiotics! Again this morning I saw him doing it a few times. I don’t know what’s normal here. He has a loose tooth (his first) and I’ve read that could be a trigger, but he’s only 6 and he has a good 5 years ahead of him with loose teeth! How much can loose teeth actually affect symptoms?
 

So my questions are:

1) is it normal to have good days and not such good days even while on antibiotics?
 

2) is it possible he needs a longer dose of antibiotics? Everyone else seems to take a minimum of 4 weeks but our doctor says 10 days is enough to do the trick. 
 

3) could there be something going on in his nose that’s causing this tic? He seems to do it when he’s having trouble breathing through his nose, or crying (and his nose runs), or picking his nose. He had his tonsils and adenoids removed already but could there be some sort of obstruction in his nose that’s causing him discomfort?

I’m really having a hard time dealing with all this but the not knowing for me is the hardest part. I just have a pit in my stomach all day long :( 
 

 

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Hi,

My son was on antibiotics for 6 or 7 months and it wasn’t till his strep and myco p titers fell that we saw great improvement. I think even though the strep was gone the antibodies stay elevated for months afterward. Certain symptoms of his went away during that period—only to be replaced by other symptoms/rituals, etc. Finally, after months. I could get him to see that some of the remaining things were just “bad habits” like refusing to walk on our new rug and he slowly started to break those habits.
 

Also teeth were a big trigger for him. Loose/losing teeth and having new teeth come in all played havoc with tics/ocd, etc. But take heart—he just lost three teeth this past winter and now all three are coming back in and there were no flares so it may not be that you‘re looking at 5 more years of teeth triggered flares.

Hang in there—that pit in your stomach will eventually ease up,

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Thank you for your reply!

He’s had a good few days, but I guess my problem is that I’m having a hard time accepting anything less than 100% recovery. Constantly worrying about the “what if’s” are ruining my life. 
 

So do you think he needs a longer course of antibiotics? How do I know what to do from here?

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So we didn’t see any real improvement on amoxicillin—he was on that for 14 days. Then we saw an infectious disease specialist who tried Azithromycin for 5 days, then Doxy for a week and Keflex for a week. No real improvement—maybe moments here or there but things also seemed to get worse. Then we saw a PANDAS specialist—Dr T—and tried Biaxcin for a month. Some improvement, but then he added in Augmentin which again helped. Then switched to Clindamycin and Rifampicin which again helped (each switch prompted some setbacks). That last combo seemed too harsh for his stomach and we switched back to Azithromycin. We also went gluten and dairy free for 6 months or so in the hopes that it would help get down the inflammation. Honestly, I think it was a combo of longer term antibiotics plus gf and df plus time that did the trick.

I know the stress and heartbreak you’re feeling about your baby. You will get him back fully. That was one of the things Dr T said to me and though I doubted it at the time and then during the process it did indeed happen. And when I get an attack of the “what if’s”  I try to remind myself that if he does fall off the cliff again we can get him back again. 

Are you seeing a PANS/PANDAS specialist?

 

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We are seeing a doctor here (in Canada) who is familiar with and treats PANDAS but I don’t know how well-versed he is with all the treatment options. I think he over-diagnoses PANDAS which takes away some of his credibility too. It’s really hard to find a good doctor here who knows exactly what to do. Even getting the first round of amoxicillin for 10 days took months of begging numerous doctors until one finally agreed to try it. 
 

He’s doing well overall right now but I have no idea what the future holds. 

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