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Hello To All!

 

I first must say, I just found this website a few days ago, and all of you are so informative.

 

I won't go through the whole history of my son, 9, but he was diagnosed with PANDAS 2 yrs ago. He has absolutely NO symptoms of strep... except for tics. When he tics, he gets Ceflex(from his pedi), usually takes care of it. but not this time. OCD is now very clear to me, when I was thinking he was a typical boy, being obcessed with legos, star wars, perfectionism, etc. OCD was never brought to my attention.

 

Anyway, 2 wks ago his tics became very severe, almost like convulsions,whole body, lasting 10 secs long, every 20 secs. on and on and on. Pedi, once again gave Ceflex.. and nothing. Tried to make an app. with the doc who diagnosed....July...but then to April. The head(not his doc)of the Pedi Assoc. we go to, directed us to another Neurologist and Azith 5day(last pill being today)(which has helped alittle). We went this morning...to the other neuro doc...he says " his ASO 506 is just a coincidence"" strep has nothing to do with it, he has anxiety issues",he told me it was from a fast reaction to the mallet hitting his knee and elbows, and prescribes CELEXA...my son is not anxiety stricken nor depressed! We will not go there, with Celexa, it's not approved for children! How dare he. Gee, maybe I should take it. Pedi doc not calling us back. Looks like we are waiting until April and changing Pedi. and in the mean time I won't give up.

 

Thanks for reading~ Stacy

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Can you get your doctor to extend the Azithromycin? Sounds like the Keflex is not working, which happens sometimes with PANDAS children. You said the Azith has helped some, so you may just need to keep him on it longer. A lot of children need weeks of Azith to see a big change. The ASO of 506 is NOT a coincidence, as you know, and is pretty high. It blows my mind that they are so quick to prescribe psychiatric medications, but are SO stingy with antibiotics, EVEN in the cases of elevated strep titers and diagnosed PANDAS.

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Hi Stacy,

 

do they do throat cultures on your son when he starts to tic (before the antibiotics)?

 

I agree with Colleen...I would do at least 1-2 mo. of Azith. For us, tics are the last symptom to go away. I wouldn't expect a big change in 5 days. With dd's severe PANDAS episode last year it took 6 weeks of Azith. for the tics to go away. The other stuff...tantrums, OCD, anorexia, all got better within 2 weeks. By a month on Azith. she was 99% except for the tics/movements. We were pretty much underwhelmed by the first 5 days of Azith. though. However, we noticed "Gee, she is yelling at us less..." and decided to do more. We're glad we did.

 

We think Ibuprofen (with the Azith.) helped too...the mood and sleeping. Not sure if it helps the tics though.

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Hello To All!

 

I first must say, I just found this website a few days ago, and all of you are so informative.

 

I won't go through the whole history of my son, 9, but he was diagnosed with PANDAS 2 yrs ago. He has absolutely NO symptoms of strep... except for tics. When he tics, he gets Ceflex(from his pedi), usually takes care of it. but not this time. OCD is now very clear to me, when I was thinking he was a typical boy, being obcessed with legos, star wars, perfectionism, etc. OCD was never brought to my attention.

 

Anyway, 2 wks ago his tics became very severe, almost like convulsions,whole body, lasting 10 secs long, every 20 secs. on and on and on. Pedi, once again gave Ceflex.. and nothing. Tried to make an app. with the doc who diagnosed....July...but then to April. The head(not his doc)of the Pedi Assoc. we go to, directed us to another Neurologist and Azith 5day(last pill being today)(which has helped alittle). We went this morning...to the other neuro doc...he says " his ASO 506 is just a coincidence"" strep has nothing to do with it, he has anxiety issues",he told me it was from a fast reaction to the mallet hitting his knee and elbows, and prescribes CELEXA...my son is not anxiety stricken nor depressed! We will not go there, with Celexa, it's not approved for children! How dare he. Gee, maybe I should take it. Pedi doc not calling us back. Looks like we are waiting until April and changing Pedi. and in the mean time I won't give up.

 

Thanks for reading~ Stacy

 

So many times we indulged "interests" that my daughter adopted, and fed them like crazy, only to realize later that it wasn't really interest or something she enjoyed- she was obsessed.

 

While I agree with you on not giving Celexa, OCD does have an anxiety component to it. In fact, its how we distinguish (now) interests from obsessions. When its OC behavior, she can't stop herself from doing it and if she can't do it her anxiety goes through the roof. But, after awhile, even when she can do it, it becomes obvious that its not satisfying her and the obsession itself causes the anxiety.

That being said, we tried a bunch of psych meds before we knew it was PANDAS causing it. None helped, some made it worse. Ultimately, the best mood stabilizer we ever found was zithromax.....

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Welcome to the forum. I'm new here myself and don't have any advice at this point, but wanted to welcome you. Lots of people here have been at this longer than I have and have a great deal of information to offer of things to consider. I wish you the best!

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Good Morning to All

 

His throat cultures in the office come back neg. 2 lab cultures have been pos. It came to a point, that the Pedi just called in for ammox or keflex. I left 2 messages for him yesterday, expressing NO Celexa and for more Azith.and wanting to see a Rheumotologist who specializes in PANDAS (childrens hospital) He's been very hesistant in the past to give back to back antibiotics.(arghh) I would like to get my son's ASO level again to see where he's at. Should I be asking for a different blood test...something in conjunction? Hopefully I'll hear from him today, or maybe I'll just walk into the office, if need be.

 

Thanks to everyone for the warm welcome and responses.

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Good Morning to All

 

His throat cultures in the office come back neg. 2 lab cultures have been pos. It came to a point, that the Pedi just called in for ammox or keflex. I left 2 messages for him yesterday, expressing NO Celexa and for more Azith.and wanting to see a Rheumotologist who specializes in PANDAS (childrens hospital) He's been very hesistant in the past to give back to back antibiotics.(arghh) I would like to get my son's ASO level again to see where he's at. Should I be asking for a different blood test...something in conjunction? Hopefully I'll hear from him today, or maybe I'll just walk into the office, if need be.

 

Thanks to everyone for the warm welcome and response

 

 

It probably wouldn't be worth your while to get a repeat ASO at this point. They can stay elevated for a time so you may not see a change anytime soon. If your son reacts only to strep, you should see a big change after being on Azith for a while. However, if his immune response is over the top to other antigens as well, such as viruses (which my daughter's is), then you may see a positive change initially with the azith, but when exposed to these other antigens (antibiotics do nothing for them), then you may see some decline again. Many parents here get upset after using various antibiotics (including azith) getting good results at first, and then they see behaviors creeping back in. It's not that the abx have stopped doing their job. They probably are still fighting the strep - it's that these other antigens have come into the picture too at that point.

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Hi Stacy,

 

read Busters Aug 24 and Jan 12 posts on titers: http://www.latitudes.org/forums/index.php?...art=#entry29305

 

I would always insist on a culture (48-72 hour) before starting antibiotics. That way you have "PANDAS evidence" if it is positive.

 

Note: Not all strep infections will be positive (for example, strep can hide out in the sinuses). Also, if your child is on prophylactic antibiotics (continuous antibiotics) a culture will likely be neg. (b/c of the antibiotics) even if your child is responding to strep (or another illness) in the environment.

 

IMO titers are only important to document past strep infections if you don't have the cultures or your child for some reason doesn't culture positive. That said, titers aren't perfect. Some kids with full-blown PANDAS and positive cultures (like mine did) will have low titers.

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I should also add that it is possible to be on antibiotics and culture neg. yet not have the strep really eliminated (thus still causing PANDAS symptoms). We think this happened to our dd when she was on Amoxicillin. It supressed the strep enough to get the neg culture but her symptoms were ramping....she didn't improve until we started the Azithromycin.

 

However, it is possible (not likely though) to get a positive culture on prophylactic abs. This happened to BMom.

 

Also, I think that Azithromycin is one antibiotic that might help minimize exacerbations caused by non-strep illnesses (eg. viral stuff) since it is immune modulating.

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I believe that this time around, thats what happened to him. He definately has improved w/ Azith. I finally spoke with the Pedi, told him of the improvement (but he still doesn't believe it) and very arrogantly...agreed with second round. They've also put in a call to a local PANDAS specialist (That I found and asked for)for me. YAHOO. I know they are just sick of hearing from me, but who cares? I feel my son is getting what he needs. And that's what matters

 

Thanks for the previous info., greatly appreciated

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