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WorriedDADNMOM

PenVK

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I have not been on here much lately, but we have seen a great improvment with PenVK prophylaxis since start of the School year. Back in Sept with the 1st two weeks of school, confirmed Strep in classroom for worst pandas dd. Mild tics starting......did round of azith coupled with PenVK and have been very happy with it. No tics....however, with viral junk, some of the mild behaviors come and go. But all in all, pretty happy.

 

Anyone else trying this protocol with PenVK??? Also we are on the whole DAN approach for couple years now. But recurrent strep exposures have definitely increased tics in dd.

 

Just realized this is not the Pandas forum...but still interested in responses.

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Hi there

I moved your post from the TS forum to here as it seems you are asking a PANDAS related question?

 

Also, the thread you had posted it to on the TS/tics forum was related to a specific dental procedure so not in any way relevant to this post, which may just have confused others there.

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Dd was on penv for approx 8 months. We had to make the decision to take her off due to increasing teeth issues (we would brush her teeth 4 times a day, and she still would orange coral reefs formed at the next brushing) and increasing abdominal pain. She had also stopped growing while on it.

 

It definitely helped keep her safe from strep, but I agree with your statement - didn't help at all with the viral stuff. We would see her behaviour spike each exposure.

 

We tried to put her back on when she was getting ready to start kindergarten (had been off for about 1 year), but her immune system is so wonky now that she broke out in hives and is considered allergic. Over the two years since this all began, she has developed new allergies, especially to abx.

 

Thankfully we are from a small town, so everyone here knows her and just stays away if they are sick. The school lets us know if there is a sick child in the building so we can plan on our end.

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Glad you found something that works. It worked for DD's first 10 day round for strep, but then stopped working 1/2 way through the second 10 day round. All symptoms came roaring back. Of course this could have been a herx reaction I suppose, but throughout treatment she didn't do well with monotherapy. We had to use multiple abx to get any kind of improvement.

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What is the orange on teeth from? My dd has had this and the dentist said bacteria. It was before Things got bad and I did not make the connection.

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Both the doc and dentist had told us the orange color was the combo of the colouring in the medicine itself, added to the change in mouth flora that the abx created - her mouth couldn't break down things the way it normally would, and the orange colouring just showed off her new coral reefs that much more!

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