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Greetings.

 

I am hoping someone can point me to clinical guidelines that I can show our ped so she will start tx for PANDAS. For instance, azith vs. augmentin, and at what dosage? And what monitoring is needed along with that?

 

DS8 has high DNASE levels (680 highest, 340 lowest) since we started tracking in Jan. 2008. He had positive strep test in July 06, and first tics in 2005. (So pos strep was very likely not first time). Just found out cam Kinase levels are 139. His ASOs have always been below 200. He weighs 71 pounds.

 

I don't know if he fits classic PANDAS, as he has had a lot of waning recently (many months of very low level tics), although things like specific activities (reading, computer work) seem to exacerbate them during an otherwise waning period. However, the DNASE that never goes down and now the Cam Kinase levels make me realize that abx treatment would probably be helpful.

 

Our ped is open to trying things, but I'd like to bring her treatment guidelines or scientific papers that she can rely on. Or, are there any specialists out there -- anywhere in the world -- who will consult via phone with a local doctor as a first step? We are with an HMO in Los Angeles.

 

Thank you so much for any guidance.

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There are specialists in the US and some do phone consults with your local doctor. The parents on here consider Dr B - Dr Bouboulis, Dr K - Dr. Kovacevic, Dr L - Dr Latimer, Dr T - Dr Triffileti to be the leading doctors. I don't know who does and doesn't consults with doctors, but I believe Dr K does. Perhaps past patients of the others can chime in more. You can find contact info for them on the doctor list http://www.latitudes.org/forums/index.php?showtopic=6428.

 

Many local doctors will refer to the NIMH website for guidance in diagnosing and treating PANDAS. THIS IS NOT GOOD. The NIMH website is very outdated. Here is a link to the PANDAS Fact sheet Buster did. It is great and, if I recall, everything stated on the fact sheet is backed by studies...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

If you need a more "official" source (if your doctor is strict and may raise eyebrows on a general print out), Buster's Fact Sheet appears on the PANDAS Network website as well and on the PANDAS Resource Network.

 

www.pandasnetwork.org

www.pandasresourcenetwork.org

 

 

Then there is the FAQ sheet. This sheet has anedoctal information on it. .But what is stated has been cited numerousd times by parents on this forum...

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Another good article is about antibiotics and strep....

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

Edited by Vickie
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I would begin with either a high dose of Augmentin or zithromax. There are a lot of parents on here with children on both that may be able to help. Three of my children are on 250mg of zithromax per day and have been for 18 months. I like zithromax b/c it has a very long half life so it remains in the body for longer and you don't have to give it at exactly the same times everyday like you do with augmentin. Zithromax also has anti-inflammatory properties (helps the brain inflammation), it is an immune modulator so it helps with autoimmune disorders like PANDAS and it can reach the strep if it is intracellular. Sometimes augmentin is not effective with intracellular strep.

 

Vickie just posted some good links to good info too.

 

Good luck.

Colleen

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