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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page 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. Learn more

 






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report after a year


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3 replies to this topic

#1 pr40

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Posted 11 January 2017 - 02:32 PM

I haven't been on the forum for about a year and want to leave an update on our ds now 9. His main symptoms were irritability and inability to let go of things. He cycled through various kinds of tics. 

 

we stopped all medication, including abx, and all supplements to start fresh.

DS got ASD diagnosis in June at MGH Leap program.

He is currently on fish oil with hi EPA (Nordic naturals has been recommended to us and we did not try any other brand) and melatonin 2 mg for better sleep.

We also changed schools from a Montessori to a local public school where he has IEP.

All in all, he is doing better, more stable and longer periods of being stable than ever before. Still many challenges including transitions and socialization. 

I wish you all best of luck.

 


DD9 (b. 2004), dx 2012 PANDAS and RLS. on abx. doing much better -- Lyme, 05/13
ds5 (b. 2008), PANS?, on abx. doing somewhat better, steroid taper much better, celiac, dairy sensitivity -- Lyme, 05/13
both kids with C667T and A1289C mutations, taking supplements



#2 Gpookie

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Posted 11 January 2017 - 11:29 PM

Thank you for the update...If I may ask, does this mean he did not have PANDAS?

#3 pr40

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Posted 12 January 2017 - 01:57 PM

hard to say, really if he had pandas. his exacerbations did not follow closely after he would get infected. he did have hi titers to mycoplasma for a long time.

there is an autoimmune component for sure but the cause is hard to pinpoint. 


DD9 (b. 2004), dx 2012 PANDAS and RLS. on abx. doing much better -- Lyme, 05/13
ds5 (b. 2008), PANS?, on abx. doing somewhat better, steroid taper much better, celiac, dairy sensitivity -- Lyme, 05/13
both kids with C667T and A1289C mutations, taking supplements


#4 tinaw

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Posted 16 January 2017 - 06:06 PM

glad to hear your son's doing better






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