Need urgent advice please!

[AlwaysWorriedMom]

Background:

My 6.5 year old son started having nonstop tics last July, along with emotional breakdowns. This went on every day for 3 months until finally a doctor agreed to try antibiotics, and 48 hrs in the tics were gone. We did 10 days of amoxicillin. He had done blood tests right before we started the antibiotics and his ASO was 296 and ESR (inflammation) was 12. 
 

He did another two blood tests, one a month after antibiotics and the next one was another month after that. Results were (respectively):

ASO: 236

ESR: 18

ASO: 250

ESR: don’t know

 

3.5 months go by with pretty much no tics at all. Then in January he started a mouth tic and it was getting worse day by day. He also had some separation anxiety and emotional breakdowns. After a week I took him for blood tests and a throat swab and he was positive for strep. ASO was 340 and ESR was 22. He starts another 10 days of amoxicillin. Tics go away again after 48 hours. He had no symptoms of strep other than the tics. 
 

Then in the spring right after Covid starts, he has a flare up. His doctor puts him on treatment dose of augmentin to prevent infection and to help lower inflammation. During the summer he does much better but has two flare ups - both times when he lost teeth and had new teeth pushing through the gums. But for the most part, barely any tics or some days none at all. 
 

Which brings me to now. He’s back at school. About 4.5 weeks ago the tics start up again, slowly at first, until last week he started a cough that’s literally nonstop. Like every 3 seconds. Normally I would suspect strep but I didn’t even consider it because he was taking antibiotics. But then my husband was complaining of a sore throat and was convinced he had strep. I thought it was too coincidental so I got a referral for a throat swab and blood test. Because of Covid our hospital isn’t doing throat swabs, so we could only do the blood test. Results came back - ASO was 285 and ESR was 8 (which is in the normal range). So it’s not a crazy high number but it is above 200 so consistent with a recent strep infection. Since he was already on augmentin his doctor prescribes clindamycin for 10 days. My husband also started antibiotics, but it took 3 days for him to feel any better. We’re now on day 6 of clindamycin and my son is worse than ever. So I’m really confused about what’s going on. 
 

I truly believe he has PANDAS because everything else has been consistent with it, but why isn’t the antibiotic helping this time? And why was his inflammation normal if he’s having a major flare up with terrible tics? Isn’t it the inflammation that’s supposed to cause the PANDAS symptoms? The augmentin may have brought his inflammation down to a normal level, but again, why is he having such terrible tics without inflammation? I’m wracking my brain trying to figure out the missing puzzle piece. My other son had one day last week when he wasn’t feeling well, and the past few days I haven’t been feeling great either. Did he catch something else that’s wreaking havoc on his system? Could we all have a mild case of Covid and his symptoms are showing as tics?

My husband keeps saying maybe it’s Tourette’s, but for 15 months he has dutifully fit perfectly into the PANDAS box and proper treatment helped him immensely. 
 

Please help me figure out what’s going on and how to help him. I’m barely sleeping and my husband and I are devastated that this time he’s not getting better. 

[AlwaysWorriedMom]

Oh yeah forgot to mention that his blood tests also showed low leukocytes, which from my understanding is related to immunity

[AlwaysWorriedMom]

One more thing...we gave Advil for several days which has always helped significantly, and this time it hasn’t helped at all. Maybe because his inflammation level is normal right now?

[AlwaysWorriedMom]

Wow really??? Not a single response? Thought I’d get some help here but I guess not. 

[Sheila]

Hi Always Worried Mom --  I hope you have a response soon. You have a complex post (as many PANS ones are!) and we know a lot of parents are maxed out trying to deal with virtual learning.

If you would like to explore approaches that we often recommend for tics, please drop me a note through our contact page on the website  https://latitudes.org/contact-us/     Let's hope you find some good answers soon, Sheila