Swedo on Le Roy- TIME Healthland mag

[trggirl]

My daughter's best friend developed tics last year. At my urging she got antibiotics (Amoxil, then Zithromax) and they resolved after the Zithromax. She went through the summer and did fine and she got them again this fall and is still suffering from them as well as a few other symptoms.

 

My daughter's tutor has a daughter that got strep last year about the same time. She goes to the same school that my daughter's best friend goes to as well as my daughter before we started homeschooling. She developed severe seperation anxiety, general anxiety, sleeping problems, etc. right after the Strep. Again, at my urging she got more antibiotics and her normally relaxed, happy child got better.

 

These examples are just in my very close circle. No telling how many more are out there that I talk to everyday.

 

I would love to contact the media and show them my tight circle but I can't. These are girls that would be mortified if they were put on TV for these issues. Also as a different point, we all have different pediatricians so how would the pediatricians be able to recognize an outbreak.

 

My point in all this is that I suspect it does occur in groups because of the infectious component of it but because of the issues I just wrote about, it goes under the radar and nobody puts it together.

 

 

***I also wanted to say that the reason I mentioned the Amoxil, then Zithromax was because if it had been a placebo effect, the Amoxil would have helped. It didn't though. They had to go to the Zithromax and then they got complete resolution of the tics***

[thenmama]

As far as the outbreak Dr L has noticed in the Richmond area I think it can be explained by two factors:

 

1) Richmond, and the area surrounding it, has a particularly nasty strain of strep. It's apparently hard hitting and tenacious-- very hard to clear. This has been true for us and a few others we know. Dr L said she's seen a lot of this type of strep from this area and our peds have said that's consistent with what they're seeing, as well.

 

2) I just saw our ped who told me that working with us she's learned so much more about PANS that she is now helping other docs in the practice with it and everyone's more aware, so they are now catching it right off the bat. Now they're also starting to re-evaluate kids in the practice who've been dx'd with other things but who may fit the PANS profile (both of my kids were misdx'd with other things that turned out to be PANS prior to starting with this ped). She told me they've now sent at least a half dozen other kids to Dr L.. Apparently they also have labs out on more kids, plus there are the kids they're starting to take another look at-- so I expect the stream of patients from this area will continue. Also, our dd's CBT therapist who treated her when we thought she had non-PANS OCD also ended up with more awareness re: PANS b/c of dd and she ended up calling me to find out who our PANS doc is b/c she wanted to make a referral.

 

So, it seems that there are a lot of PANS cases springing up here, and maybe it is b/c we're a hot spot for this terrier of a strep strain, and it also seems like Dr L is getting a lot of referrals just from our peds practice. And I'm sure she gets them from other docs in the region, too-- she already had patients from this area when we began seeing her.

 

It's been said (to me) by several docs that it would make sense for there to be clusters in outbreaks b/c of the ARF/strain reasoning that's been discussed.

 

If we're in a nasty strep/PANS prone region, at least we're fortunate to have Dr L in close range!

Edited February 10, 2012 by thenmama

[Iowadawn]

All I can think is that Dr. Cunningham can't get her lab up & running fast enough!! This could be very telling.

 

What will be interesting to see is if the girls' symptoms settle down and in a few months---POW---bigger symptoms. This all started happening right around the front end of the strep season--if there really is such a thing.

 

Just a thought off the top of my head today--don't we spend our lives "converting stress & anxiety & big issues?? We over eat, we bite our nails, we get depressed & lay in bed, we twist our hair, we scream & yell & get easily upset, on & on" Just a thought that crossed my mind.something. Just seems like too big of a dx.

[tpotter]

All I can think is that Dr. Cunningham can't get her lab up & running fast enough!! This could be very telling.

 

What will be interesting to see is if the girls' symptoms settle down and in a few months---POW---bigger symptoms. This all started happening right around the front end of the strep season--if there really is such a thing.

 

Just a thought off the top of my head today--don't we spend our lives "converting stress & anxiety & big issues?? We over eat, we bite our nails, we get depressed & lay in bed, we twist our hair, we scream & yell & get easily upset, on & on" Just a thought that crossed my mind.something. Just seems like too big of a dx.

 

 

I don't know if this is still the case, but she may still be needing money. It costs a lot to get a lab up and running, particularly when following governmental requirements. Just thought I'd mention that.