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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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So blood work is normal. The doctor told me my baby needs  a psychiatrist..im going to one today. But how does a honors student hide intrusive thoughts for 3 years and then suddenly get sick and have dental work and can no longer hide it and they get worse. Im nervous, and frustrated.  If anyone has any advice please please let me know. I do not want her on meds.. even the couselor advised me to do everything as hollistic as possible. 

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After suffering with OCD and intrusive thoughts for over 3 1/2 years, we finally were able to get a rheumatologist to prescribe a high dose of Augmentin for 30 days for our DS in 2016. During the 3 1/2 years we tried unsuccessfully to treat his symptoms with pharmaceutical meds.  The doctor let us start the abx before his bloodwork came back, which ultimately showed normal Strep titers.  She said we may continue the abx for the 30 days if we chose to.  He had no response for the first ten days, but on day 11 or so his symptoms began to rapidly improve.  Again, his bloodwork had come back normal.  I think if the infection was too far in the past it doesn’t show up on the bloodwork, although the misfired antibodies continue to attack the brain. The Cunningham Panel is what got the PANS diagnosis for my DS.  

With PANS, there are 3 things to address: the infection, the inflammation and the immune response.  

 

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Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?

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26 minutes ago, ejh said:

Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?

There is only 1 near me, he wants you to write him a reccomendation letter on why he should take you and 1st appt is over 1000 if he thinks your a good candidate.  Im waiting to here froma nuerologist in katy . Dr doan. 

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Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis. 

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