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My six year old was diagnosed with PANDAS a month ago by a PANDAS doc. On the list of symptoms, she ticked just about everyone and had elevated tithers -- 607 on the ASO and 597 on the DNASE. She was given 14 days of Augmentin, and we saw a complete remission of her symptoms (OCD, attention, mood etc). It was a total transformation. Then two-days post antibiotic, the symptoms began to return. Now two weeks later, they are as bad as they were before the Augmentin. The doctor has prescribed another 14-day round of Augmentin, but says if symptoms, IVIG is our next step.

 

I know that IVIG will likely help, but I was hoping to try a longer course of abx before pulling out the big guns (which won't be covered by insurance). I'm not sure I understand the two weeks on abx, two weeks off, two weeks on, IVIG approach. Can anyone weigh in?

 

Thank you.

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My understanding is that it takes a LOT longer on antibiotics than two weeks. Some of the kids are on them for months and then given a dose weekly for a year. Dr Murphy -- a very well known PANDAS doc -- gave us a full 30 days of antibiotic. Turns out DS is a Myco P kid and so we changed antibiotics, but again we were given 30 days. We have a follow -up with her at the end of the 30 days. We are only two weeks into the new med so I am no expert:) But I would definitely pursue the long term antibiotics before IVIG. Just make sure DD is taking some high quality probiotics too.

 

I'm sure the other parents with strep kids will provide better feedback for you.

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Just thought I would add - my son was on prophylactic antibiotics for almost a year for PANDAS and his ASO did not come down from the 500s. He went on combo high-dose antibiotics (for lyme), and it took a full 6 months on this before ASO began to drop, although PANDAS symptoms began to resolve within the first 1-2 months.

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Have you tried azithromycin (zithromax)? It gets to intracellular strep, which Augmentin sometimes does not.

I do not understand why a PANDAS dr would stop the Augmentin after only two weeks, especially since it worked so well. Stopping and starting the same antibiotic can sometimes cause a resistance to it.

The treatment dose for zithromax is 12mg/kg/day.

 

Colleen

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So glad that you saw a good response to the antibiotic--as many of us have observed, some abx appear to have an anti-inflammatory and immune modulating effect. Because of this, if it is working, it is a good thing!

You have to treat w/ something, and in my opinion, abx is obviously the lesser treatment (so to speak...) in which case, more abx -- and hopefully all symptoms will end...If it was us, I would ask for 3 months, and then taper if possible.

just my opinion :)

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The other stuff I would add is while on abx, it is important to remember to have probiotics in conjunction with the abx. This will promote good gut bacteria. Also a pandas doc should want to look at other vitamin and mineral deficiencies to help heal and strengthen the immune system. Hope this helps.

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Thanks all. Yes, she's taking probiotics with the abx. I guess we'll have to find another doctor because our current PANDA doctor said "two courses of Augmentin would be the maximum permissible antibiotic treatment duration" and that if the effects from this round aren't lasting, we will have to consider IVIG.

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Thanks all. Yes, she's taking probiotics with the abx. I guess we'll have to find another doctor because our current PANDA doctor said "two courses of Augmentin would be the maximum permissible antibiotic treatment duration" and that if the effects from this round aren't lasting, we will have to consider IVIG.

 

Which probiotics are you using?

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Goodness. A real pandas dr wouldnt say that ...in my opinion.

 

There is also a study at nih going. Looking for pandas kids. If you search the forum it will come up. My son is in it and ut has been great.

 

Frustratingly, it's a verbatim quote from one of the PANDAS docs that has treated many of the children on this board.

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I know some of the PANDAS docs really push IVIG and believe that it is the answer. For some kids it is. For many kids, long term antibiotics will work wonders. There are great PANDAS doctors out there who will work with you which ever avenue you are comfortable with. Some are just more aggressive than others. So you need to find someone who is more suitable to your expectations. When it comes to this illness, we need all kinds of physicians willing to help in every way so I would never put down any specialist attempting to help our kids. However, if your child isn't quite ready for the aggressive route at this time, there are several very good specialist who are more than willing to work with you. BTW, JMHO - I think if things are going well on the antibiotics, I would try them a little longer and see how it goes. Go with your Mommy gut. It is seldom wrong.

 

Dedee

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