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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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Hi Also from Canada. Alberta. I have not been able, yet, to secure a doctor here. Took my son to nathropathic to get diagnosis and 3 month prescription for Amox. Have not been able to get any testing done.

 

There is a Dr. here in Edmonton. I tried to get in the back door. ie wrote him a letter Apparently he spent 2 days "thinking" about it then said he did not feel he would be able to help my son. I have since learned he is not accepting new patients but his assistant is. That is where I am now trying to get in. I mention this because I know of 2 children who have been approved for IVIG by this Dr. Each received 2 rounds of 1gm / kg (low dose). Met recently with both of these moms' in an effort to advocate and brainstorm to get help. One of the moms was featured in the Walrus article "a feverish debate".

 

My experience probably very similar to others in the astounding lack of help and ignorance.

 

Janice

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I'm in manitoba - haven't been on the boards lately due to a very complicated pregnancy and now in the wonderful midst of 4 month new baby...

 

We have had a ped move into our rural area who actually treated a few kids with pandas in his previous work overseas. It was weird not having to convince him of anything - he also said he would be willing to coordinate ivig if we needed here as pandas is indicated for ivig treatment under canadian blood services. We also have a fantastic pcp who is very supportive locally- sometimes small town living is useful as people are used to having to be creative and look outside the box ( also helps I'm a pitbull advocate at this point :) ).

 

We are still struggling, but at least no more arguments around labs, treatment options etc. we are definitely in the mode of day to day management.

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