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PANDAS or not?...Help please....


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Hi,

 

A few weeks ago, someone posted article written by a neurologist in London who is PANDAS supportive. Maybe you can try to connect with him and see if he can either help you or refer you to a doctor in England who is familiar with PANDAS. His name is Dr. Gavin Giovannoni. The post question was about the Cunningham Study test results. This article was mentioned as a way to help explain some of them. I just latched on to the mention of London and thought it might be a lead for you.

Here is a link to the Latitudes discussion: http://www.latitudes.org/forums/index.php?showtopic=11288

 

Kara<BR class=Apple-interchange-newline>

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This happened to my daughter at 8 years old. We got her to the hospital pretty quickly when similar symptoms appeared. She was admitted and given intervenous antibiotics. I believe to this day that the early administration of antibiotics on the first episode of PANDAS saved us from her being an Exorcist child. Get the little guy to the doc and kill this infection immediately. It will be a lot easier later on when it hits again. You may need to see an PANDAS doctor and get him on prophylactic antibiotics. It will save you a world of grief in the long run.

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I wanted to add that there are wonderful resources at the top of the PANDAS Forum under the posting, "HELPFUL THREADS". These threads are the accumulation of the last couple of years in a summarized form--and provide some excellent information. Also, the www.pandasnetwork.org website has research listings and is a good resource to review. Bottom line: You won't know for sure until you try treating. A month of antibiotics full strength was a very real indicator for us -- as well as the effects of a steroid burst (see www.webpediatrics.com for more info. on Dr K's use of steroid burst.) I wish you the best and I would certainly agree with Hierge that early treatment is priceless.

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This is my question---what do you do if virus/pitand is the issue??? Abx won't help in that case....then what???

 

I agree with the other responses - seems your child is clearly exhibiting PANDAS symptoms. The faster you can get on antibiotics the better. It took about 6 years to properly diagnose our older son because PANDAS was such a new idea and we continue to struggle with PANDAS symptoms and flare ups today (8 years in the battle now - he is 12 years old). When our other son showed PANDAS symptoms last year, we got him on antibiotics within 4 days and symptoms were under control in 3 days. Since then, he has had one more flare of symptoms and we got him on antibiotics the same day - symptoms gone again in 2 days. Wish we knew all this with our oldest son. One other item to note, the trigger for our boys seems to have been EBV and not necessarily strep, so don't rule out the treatment if strep turns out neg. Consider PITAND and other viruses as a potential trigger. Good luck!

My unmedically trained logic would agree that abx would not help in the case of PITAND brought on by virus, but I saw it with my own eyes when our younger son first showed signs of PANDAS symptoms. One night, his eyes started rolling up in his head - the same tic that his older brother started with 7 years earlier. I thought there is no way this can be happening again. We went to our Ped and she tested for strep and EBV. EBV was pos and step neg. We did abx for 30 days and within 4 days he was symptom free. Logic said abx would not have any affect since he had EBV, but it ended the symptoms.

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I agree with the other responses - seems your child is clearly exhibiting PANDAS symptoms. The faster you can get on antibiotics the better. It took about 6 years to properly diagnose our older son because PANDAS was such a new idea and we continue to struggle with PANDAS symptoms and flare ups today (8 years in the battle now - he is 12 years old). When our other son showed PANDAS symptoms last year, we got him on antibiotics within 4 days and symptoms were under control in 3 days. Since then, he has had one more flare of symptoms and we got him on antibiotics the same day - symptoms gone again in 2 days. Wish we knew all this with our oldest son. One other item to note, the trigger for our boys seems to have been EBV and not necessarily strep, so don't rule out the treatment if strep turns out neg. Consider PITAND and other viruses as a potential trigger. Good luck!

 

Hello,

 

How is EPV typically tested? Should we ask for a "Mono test"? Is this the same as EBV antibodies test?

 

My dd7 has PANDAS symptoms, while waiting for her throat culture for strep and ASO titers, want to rule out PITAND.

Our ped did a blood draw to test for strep and mono at the same time. You can ask your doc to do a blood test to check for strep and mono. Even if mono comes back neg now, then can tell by antibodies in the blood if there was a previous EBV infection.

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