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Hi all! It has been a while since I posted, as things have calmed considerably. For those who remember me, I have a teen daughter who developed PANDA-like symptoms a couple of years ago (PANDA-like because she was a teen when she got strep and started the tics/ocd). We were on PenVK and then zith and then back to PenVK.

 

Now she is on 500 mg PenVK (to keep her from getting strep), mag taurate, inositol, and a vitamin with B and C vitamins and zinc.

 

My question is this -- she has been on the Pen VK for more than a year now. Our doctor is suggesting that we stop. Does anyone have an opinion on this? I suppose I can't keep her on the antibiotic forever, but -- things are going good right now and I don't want to mess that up!

 

(Sorry if I am posting in the wrong place -- just realized there is now a PANDAS forum.)

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Hi Emma,

 

IMO there are 2 possibilities:

1) your dd had an adolescent variant of PANDAS. Scroll down the the bottom section of the page on this link: http://www.webpediatrics.com/pandasclinicalcases.html

2) your dd had milder undiagnosed PANDAS when younger and your dd's latest episode (as a teen) was "regular" PANDAS

 

If it is "regular" PANDAS, I can't say that you can safely discontinue the PenVK as your doc suggested. According to Sue Swedo, we don't really know how long these kids need to be on abs. She used ARF as a comparison, how the age recommendation kept getting pushed upwards (18, then 25, now lifelong abs are recommended.)

 

How old is your dd now? Was her PANDAS episode after puberty or before?

 

If she were my dd I would feel comfortable keeping her on PenVK for many more years, at it is a narrow spectrum antibiotic and there is a long track record of it being used for ARF.

 

You could also consider sending Sue Swedo and Dr. Kovasevic (sp?) e-mails and getting their opinions.

 

Personally, I can totally agree with your point about not wanting to mess with what is working!

 

In theory, your dd should do better when older since older kids/adults are *less* susceptable to strep. (But even adults can still get it, it's just not as common!) I just got back from the doctor yesterday (I'm 43) with a strep infection (positive on the rapid). The doctor was impressed, since my lymph nodes were so enlarged you could see them! I don't remember when I last had strep (as a child?)...my kid(s) have gotten strep several times in the past year and this is the first time I've been infected. So, while your odds are better as your dd gets older, they aren't going to be 100% in terms of not getting strep.

 

Re: PANDAS and adults: a couple of moms on this forum (who think they had PANDAS) said their symptoms got better with pregnancy.

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Thanks for your information. My doctor had used ARF as a basis for starting the antibiotic. We have been dealing with all of this for a couple of years -- though now you have me wondering if I could have "missed" symptoms when she was younger. Her symptoms this time were obvious to us, but more so because she noticed them and was concerned. I know when she turns 18 we will have to find a new doctor. That makes me nervous as I know so many have had trouble getting antibiotics prescribed. And I definitely did not want to have her go off of antibiotics and go off to college at the same time.

 

The "forever" of being on antibiotics seems -- well -- really long though! (I am really happy right now that she is have no/very minimal symptoms. I would really hate to see her the way she was when this all started.)

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