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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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beeskneesmommy

Been a long time...

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Hi Guys:

 

It's been a long time. In my experience, when we don't hear from someone, it's either very good, or very bad. Mine is the former. Through trial and error, peeling many layers and years of riding the roller coaster, DS, now going on 9, is OK. Things started to even out in August 2013 with the final intervention of going GF and learning of a multitude of allergies, followed by weekly shots with low dose serum made by his PANDAS specialist. Of course there were many interventions before this, including HD IVig x 2 and long term abx, steroids, lots of testing, etc. However, we are going on 2 years of doing great. DS has had some very minor, short lived flares when exposed to illness (particularly Strep) but is living a happy, normal life with sports, social fun and great grades.

 

I am stopping in to the forum to offer encouragement to you all. DS's symptoms began at around age 18M, pretty sure he had his first round of Strep at age 14 WEEKS. He was officially dx at age 2.5. There were years of heartache and terror for us as parents. There were years of negligent and neglectful doctors, and there were many nights when I lay awake in tears wondering if he would ever grow into a whole adult. When I look back upon those dark times it seems nothing short of a miracle that we have a healthy, happy, bright boy.

 

I am here to tell you that your kids can get better. Don't give up!

 

Don't lose hope, my friends! Warm thoughts and healing prayers to you all.

 

Kath

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Thank you so much for posting this. I am so happy to read your DS is doing great. I am also proud of you as a parent for sticking by your child through this. I have a daughter with Lyme who is also doing well. It has been a long road for us as well. It is so nice to read what you posted thank you so much

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Yes, thank you for not disappearing.

 

When you talk about the short lived flares from strep exposures, is your daughter getting sick or is she just reacting?

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