PANDAS - how careful should we be?

[dut]

Hello.

 

Our daughter is PANDAS and came off prophylactic antibiotics 2 weeks ago. She's been symptom free for a while. Last week her friend vomitted in front off her after them spending an hour or so together. Today we learn it's strep. SOur dd hasn't got a sore throat or anything like that altho' she has been more naughty than usual these last 2 days. Her PANDAS symptoms are ocd and behaviour types so bells had been very quietly ringing even before we knew about her friend.

 

Just not sure whether we should be swabbing or whether i'm being a bit paranoid here? I was just wondering what other PANDAS parents would do?

 

Thanks.

[ad_ccl]

Why did you go off the prophylactic antibiotics?

Our son is on prophylactic antibiotics - if he starts to show symptoms and we know someone has been sick that he has been around - especially if it is strep - we put him on a full round of antibiotics right away.

[dut]

We weren't on antibiotics to control symptoms but to ward off new infections as our ped said strep was still rampant in our area well into late spring /early summer, and her symptoms had already diminished.

 

As we hadn't really had much of a break since her first episode tho' we wanted to come off them to see if we would have a return of symptoms and for the last 2 weeks we saw nothing , apart from the last 2 days and that could be me just seeing ghosts everywhere and she just be being a normal sometimes defiant/moody 5 year old.

 

I think we'll swab. I'm reticent to go to the ped's unless we have to 'cos if you don't go in with something you seem to walk out having caught something.

 

thanks.

[Pudgeo]

I'm glad you posted about this..It seems there is no definite protocal for PANDAS symptoms. I think after much research that anti-biotics are a must and especially to prevent re-infection! My pedi is hestitant to give me azithromycin (I asked for it) because we are doing IVIG...If and when my son gets better the last thing I want to do is go through all this again!!!

I am hoping he will consider anti-biotic in Aug or my DAN said she would prescribe for me...I feel like no one really knows what they are doing!!! Sarah

[dut]

Pudgeo.. I certainly feel the same about drs not knowing. I feel as though we are making a lot of these treatmant decisions in the dark. We have been very lucky in that we appear to be symptom free and when I think how bad it was, it was truly heartbreaking to see our daughter. So I do feel for those parents still in the midst of it almost left to treat based on their own research.

 

It almost feels surreal to us now, it came so hard and fast and went so quickly, I worry we have become complacent. We just didn't want her on full time antibiotics if we could avoid it.. perhaps only using for strep season.. we hoped. I'm not so sure after this bit of a scare. The fear has come flooding back.

 

I do agree with other posters about you pushing for antibiotics. They really do seem to do the trick for so many of these children. My best wishes are with you and all other parents seeking answers for their children.